ANA Discussion Forum
General Category => AN Issues => Topic started by: Rob7 on February 19, 2007, 05:43:50 pm
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Hello, all! My name is Don and I was recently diagnosed with a left side AN after three years of complaining of Tinnitus. Finally knowing what has been causing the Tin., fatigue and balance issues is a great relief.
I am, however having some trouble trying to figure out how to deal with upcoming surgery, Unilateral Deafness and possible facial issues. I am scheduled for surgery the 8th of March at the Univ of AL, Birmingham. I am confident the surgeons will do a good job as they have done LOTS of these. What can I do aside from remaining positive about the outcome? What can I tell my wife to allow her to help me get through this?
Thanks in advance for the help and for this great website.
Regards,
Don
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Hi Don & welcome to the group:
My 1st biggest problem post op (beside the facial paralysis - I'm one of the few who end up with this problem)
was wicked headaches for about 2 weeks - I can't take opiates, so I could only use Tylenol extra strength
(ugh, that was an awful time).
My 2nd biggest problem post op was the fatigue. I wasn't able to cook, clean, etc.
I slept alot, took short walks & gradually increased my distance;
I took naps whenever my body needed it.... went a couple of weeks like that...
There were also balance issues, ended up going for Balance Therapy
& I can't taste alot of foods now, like steak, chocolate, bread (I can taste vegetables real good though, like a bad joke being played...)
If you don't mind my asking, how large is your tumor?
There IS also the option of radiation, if it is small enough, placement issue,,,,,
You have alot to think about right now....
take your time, keep a peaceful heart, Nancy
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Hi Don:
Welcome to the forum!!
If you trust your doctors and surgery is your choice, all you can do is remain positive. A positive attitude is very important.
The only problem I had was the dry eye about 10 days post-op. It lasted a few months. I also had some facial weakness, as expected.
I think it is pretty much the norm now for surgeons to leave some of the tumor if it is too risky to get it all. You might want to ask your surgeon if he/she would back off if the facial nerve is in jeopardy. Any residual tumor can be radiated after recovery from surgery.
Good luck to you, Kathy
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Nancy,
Thanks for the quick reply and for filling me in on your history. Bless your heart for dealing with all that so well and for helping the rest of us.
My tumor is 2.5 cm and is pretty well fused to the nerves and also to the brain stem (?). I had three doctors look at and all agree that the suboccipital approach is the best. I thought they also said they would also go into the inner ear from the outside (sublab?), but I am not sure. I was overwhelmed by the time we discussed all the particulars. Is it normal for the doctors to be so nonchalant about the hearing loss and other possible issues? I was taken aback by their quick and honest replies to my questions.....as if losing part of your hearing is an everyday occurrence.
Anyhow, thanks again for the help!!!
Don
P.S. Thanks to you, too, Kathy!
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I think your wife might like to know that when she first sees you out of surgery your face will be fairly red from the stimulation patches they use to monitor you...that you will have a jaunty white bandage on your head that exaggerates your head size...that you will have one or two IV's in your arms to help with medications and fluids for a few hours...and that your surgery will seem exasperatingly long...she needs family supporters with her that day...you are going to be just fine...and that single sided deafness will cause some depression at first but it will pass...and that our board is open at all hours for her to sign on with concerns.
It is important for doctors to be straight and factual about all issues of the surgery. Their approach might seem non chalant but their "education sessions" have to be thorough. Your doctors sounds like good professionals. The whole scenario of AN surgery seems so shocking at first, doesn't it?..more sudden than any of us like.
Take your regular pj's to the hospital. You will enjoy having them as soon as you get to the regular room.
I am 65, had a 2 cm tumor surgery in 2005. My tumor was "sticky". I had some facial weakness but it resolved by the 2 month. Please email me if I can help.
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Hi Don:
The docs do this daily, so nonchalant it is.
My case was unusual b/c the facial nerve was not responding when they attached the nerve monitor,
before they even started surgery.
Remember, you'll be taking it easy for awhile,
your body will let you know when to rest, take a short walk, etc.
Best wishes to you & your wife, Nancy
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The docs being so nonchalant is my experience as well. Surgeons aren't usually known for sensitivity. lol
Stay positive. Prepare for some of the side effects but hope that you have none! For example, I had a reaction to the pain meds and had to be moved to an inpatient rehab facility before I could go home. My dh knew there was an excellent rehab in our hometown....the social worker wanted to move me to a nursing home (I was only 35). Dh made sure I got to a great facility. The ot's and pt's were the best.
Also the docs said to plan for 1 week of recovery per hour of surgery. In my case that was 16 hours, and it took almost that long to feel my regular energy level.
Best of luck to you......
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Hi Don and welcome. I cannot respond to your questions about post-AN surgeries from a personal standpoint, but the suggestions/recommendations made thus far by the gang here :-* are certainly on the money. We'll be cheering you on and great to see you here. You're gonna do great!
Phyl
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Hi Don,
I'm 5 months post surgery, so most of what your wife needs to know is pretty fresh in my mind. The doctors didn't lie to me, but they certainly were optimistic. I expected to be in the hospital for about a week, primarily to regain my balance. Ha! When I was released, I had to use a walker for a month, then a cane for another month before I could walk unassisted. About all I could do around the house was eat, watch TV, and go to the bathroom. I even needed assistance to shower for the first five or six weeks. Routine tasks such as mowing the lawn, taking out the trash, or unloading the dishwasher were simply not possible for a good long while.
Even though my physical therapist said I could try to resume driving at the two month mark, I didn't even try until the three month date because my left-eye vision was so blurry and I couldn't go for more than ten or fifteen minutes without adding eyedrops. I had to be driven everywhere for those three months.
My wife had to deal with all the chores that I normally would have done, served as the nurse for treating and bandaging my eye until I got an eyelid weight installed, did all the cooking and cleaning, and served as the chauffer for the innumerable trips to the doctors and therapists post-surgery.
As unpleasant as AN surgery will be for you, the consequences are even worse for your wife over the short term.
Five months out, I have resumed most of the chores, but I still won't get up on a stepladder. Its taken me this long to get back to about 80% of where I was pre-surgery. Without my wife's help, I don't knbow how I would have gotten through this ordeal.
Good Luck,
Wayne
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Hi, Don:
Welcome to the forum.
You seem to be in good hands as far as your physicians and the medical facility go. I suggest you re-read the post from 'Bobbie'. She nails most of the things you and your wife can expect, post-op. Unfortunately, unilateral deafness is often one of them. Your doctors are casual about this because (in no special order): (a) they see it all the time, (b) they want to be realistic with you and, (c) it isn't their hearing being 'lost'. However, the retrosigmoid surgical approach can sometimes spare your hearing, assuming you still retain that ability in the AN-affected ear. Keep your expectations fairly low regarding hearing retention and you may feel better, post-op, even with diminished hearing. Some of us have absolutely no hearing in the AN-affected ear. We adjust and, ultimately, survive.
I must issue this caveat: we're all unique and while most AN surgeries are highly successful and the patent back to (relative) 'normal' in a few weeks, others have complications and lingering post-op problems. A surgeon cannot know for sure exactly what he will have to deal with once the tumor-affected area has been exposed. I had a fairly successful retrosigmoid surgery. Even so, I have a few minor post-op 'issues' but nothing anyone would notice or that I can't deal with. I expect even these minor issues (occasional slight 'dry eye', a few 'numb spots' on the tongue, etc.) will eventually resolve in a few more months as the radiated tumor shrinks.
Barring any complications, I would expect to spend 3-5 days in the hospital and to be quite tired for at least a week after the surgery, until the surgical anesthesia and hospital meds are eventually absorbed and/or eliminated by and from your body. Regaining your sense of balance is always a bit of an issue for most AN post-op patients but with some re-hab work, your brain usually compensates and near-normal balance is regained in time. One hopes that no facial paralysis occurs for any AN patient, but it's a (relatively slim) possibility. That 'positive attitude' you mentioned, along with having your wife as your advocate while you're hospitalized, are not to be taken lightly. Both are valuable in your recuperation.
Best of luck on March 8th. :)
Jim
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Thanks to all for the kind words and giving me realistic expectations based on your experiences. I will take all the advice and use it over the next few weeks. I am honestly ready to get the surgery behind me and get on with my life. The sooner the better as I will be transitioning from the Army to a civilian career this summer. I will keep everyone apprised of my situation and will ask for advice when necessary.
Thanks again for all the help and concern!
Don
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Hey, all.
Heading into surgery tomorrow morning as planned. I am a little nervous, but am confident things will work out OK. My wife will post a message tomorrow noting my progress. Cannot wait to just get it all over with and start my new (Minus AN) life.
Thanks again to all for the help.
Don
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Good luck tomorrow, and know that my thoughts and prayers are with you and your family.
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Good luck tomorrow. Soon you will be a "postie." We'll be waiting to hear how things go. Best wishes to your wife also.
Jean
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Hi there Don...
Very best wishes for a speedy and successful full recovery. Looking forward to your next response as a 'postie'!
Regards
Derek
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Hi this is Sheree, Don's wife...he just went into surgery...so they tell me it is going to be 10 hours.
my mother in law and I are going to go back and forth to the hospital from the hotel that is attached to UAB
He seemed really calm and ready to get this over with, but who really knows what he is going through. (but you guys) I will keep you all posted on his progress and may not get back on until late. I want to thank you for all your support you have given Don and I know it has helped him mentally. This is a lot to handle..and then we got hit (our back yard) by the tornado so he had a lot to handle before we came to Birmingham for surgery..but he got it all done. A project to focus on...and manual labor clearing trees and putting the fence back up. Until later...
sheree
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Hi Sheree:
Thanks for posting that our latest "Postie" is in surgery. Yes, today will be a very long day for you two.
From the sounds of your husband's posts, he was very ready to get it over with. I was the same way. My family couldn't believe how calm I was in the hours before surgery.
Try and relax a little today. Don is in good hands. Please give him a hello and hug from us when you see him tonight.
Kathy
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Sheree,
My prayers are with you and Don. I'm 3 weeks post op and glad to have the surgery over with. I'm sure you folks will be too. Then it's time for the healing...something that's constructive unlike the worrying.
Let us know how Don is when you can.
Dan
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Don and Family: Best of luck on your surgery today. I had surgery 18 years ago on a 1.5CM. On my 2nd go around-this time 2.4CM on other ear-chose Radiation last summer to save some hearing if any. I know what it is like though for surgery. I had no outlet like this 18 years ago on my first surgery so all was totally one heck of an experience. I can recall on the issues though many people have been bringing up on this forum. Anyway-enough about me-this is about DOn. I will say a prayer for him today that all comes out. God Bless and Take Care of that Man of yours. Hi Don-Get Well-Ron.
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Don,
We're cheering you on as you now become a "postie"! Hang tough! :)
Phyl
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Hang in there and our thoughts and prayers are with you and your wife. Remeber that you are never alone. This forum will help you a great deal in the next couple of months.
Here's to recovering !!! :)
Greg Brown
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Sheree:
Most AN surgeries are around 10 hours long, give or take a few hours. Mine was almost 9 hours. Some are as long as 16 hours if the surgeon finds complications. Some are over in 4 or 5 hours. It's a 'ballpark' estimate, not a definite statement, as you probably realize. Early on, your husband will be under the influence of the anesthesia and won't know a thing until he wakes up - wearing a large head bandage and, very likely, quite thirsty. He will have felt no pain during the procedure...no one does. If there is any pain, it comes post-op.
I wish Don the very best outcome from the surgery and urge you and the family to be there for him, as you have been, and to stay strong and positive during the healing/recuperation process. My prayers are with you all.
Jim
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Hi Rob,
I look forward to hearing from you as soon as you are up to it. You have many people wishing you and your wife well with a speedy recovery.
I am 2 years post surgery and doing fine, even teaching a yoga class at the local gym and privately. You mentioned earlier BT (before tumor) you are transitioning from Army to civilian life. Hope your transition is a smooth one. I/we have a son-in-law stationed overseas, Army SF Halo.
PATIENCE is key to recovery. I remember there were days I felt the pain and healing were finally behind me only to wake up the next day to find I took three steps backward. This is normal. We all heal differently and as for how long, again, we all heal differently. This forum will serve you and your wife during the process of healing with honesty, support and venting. Don't be shy.
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THANK YOU...i am still waiting...going into almost the 7th hour of waiting...uugh!!
I appreciate all the advice and kind words...I am sure we are in for a long haul to recovery...
we do retire from the army this summer. My MIL is here for a couple of weeks and I am sure our four kids will help us out as well. We have not been told how long it will be before he can drive again..does it depend on his balance or how much pain meds he continues to take?
take care and hopefully when I respond next it will be to tell you that it is over..
sheree
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the short of it...part way through the surgery his blood pressure spiked to over 250 over something and his brain swelled they had to stop what they were doing and control the situation.. they did a cat scan and nothing looked bad..they are slowly taking out of anethesia sp? he was brought out of it before we saw him and he was able to wiggle his toes by command. he has had his blood pressure spike over 250 again since out of surgery. The surgeon is AT A LOSS he said has NEVER experienced this and has been wonderful even though he doesnt have a clue...for you prayer warriors PRAY...... I will let you know things as I KNOW THINGS...thank you
they did say they got 3/4 of the tumor as far as they know with out doing a MRI and that will be done with in the next few days..
sheree
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Prayers are comming Sheree - try and get some rest.
Kathy
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Hi Sheree: hang in there. I am praying for you and Rob- I think the caretakers have it tougher than the patients some days! Take care of yourself as Rob is being taken care of by the doctors and nurses. God bless - Annie
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Sheree
Thank you SO much for the update. One heck of a day you all had yesterday. I hope you got some rest and when you see Don, please tell him we are cheering him on... and sending huggles... and please keep some of those huggles for you as well. We need you strong for Don... and sending wishes for a very speedy recovery for Don.
Hang in there!
Phyl
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Sheree,
WOW! This must surely be the most difficult part of AN surgery--the caregivers waiting for their loved ones to be wheeled out of surgery. I was on Rob's end, and now see what it must have been like for my family waiting. My surgery did not have the "moment" like Rob's, and I pray he sails through this with ease. Sheree, I like so many send you prayers of peace and comfort during a very difficult time. It must very hard for you, but know "this" extended family hold you near to our hearts. Rob is well taken care of and fortunate to have many watch over him, know the same is extended to you.
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any new updates???
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Hello all....been a LONG DAY...
he is very un easy, figity, cant rest, wont stay still long enough for the MRI to take place today they tried twice. they are thinking of intebating him in order to do the MRI. they think that there was a vein next to the tumor that was clogged and backed up to the brain. causing high blood pressure then causing swelling on the brain. this vein is one that leads out of the brain not into the brain. they have started to give him asprin to thin the blood and if that does not keep the draining from draining so much then they will put a shunt in. they think there is not anyother reasons to what the deal is. the blood pressure is still high or all over the map as the doc said. he is not too coherent ... he talks to me but not much and only short spurts..he can follow any orders they give. one thing that i am worried about is that his right leg shakes like he is having a seizure...a fokal seizure but they said they have given him seizure meds to prevent any from happening but it is shaking alot...looks bad. every day leads to more up things but time will tell as of now.. I am sorry i am not making sense i have had three hours of sleep and my mother is not making it in until tomorrow now and my BIL 's flight isnt going to make it in until 5 tomorrow night instead of 2.
sheree
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Sheree,
Don and you are in my thoughts and I hope he will turn the corner soon and will start the recovery! Thanks for keeping us posted.
Eve
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Sheree:
You & Don are in my thoughts & prayers.
Keep a peaceful heart during this difficult time, Nancy
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Hi Sheree:
How is our friend Don doing?
Kathy
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I hope you all keeping Don in your thoughts and prayers even though I dont see many posts...he is really having a rough road. He has had double vision for about 24 hours now.. the drainage out of his head (spinal fluid) is steady..anxious to hear about a solution to that today when the doc comes today. blood pressure is a steady hypertension and did indeed shoot up to over 200 again last night when we came in to visit him. His ENT doc shared with him an hour after we visited but 2 and a half before we could go back in, everything that happened during surgery. he was very upset and confused, scared, hurt that nobody told him the real deal. I honestly think he was not ready to hear the whole news...and he has not really been coherent enough up until today anyways. I am really sad that the doc did this..I had to calm him down after our 30 min last visit of the day and leave him to lay there thinking and mulling everything over in his head. I can only pray that he was able to sleep and not let his mind play tricks on him. The nurses said he has sundowner real bad. Lortab just makes him really loopy and he doesnt like that feeling, every shift the nurses do something different regarding his pain meds.. He finally convinced them to give him some coffee because of a headache they tried to tell him it is because he had "brain surgery" he said no it is not "COFFEE" SINCE he doesnt complain about pain or when asked if he has any and replies no they either NEVER give him pain meds or push them every two hours..what ever the nurses own personal feelings on them. uugh. he has been eating realy well but having a hard time because his throat is all aggitated and his voice is really different. So he had many milestones yesterday with just the communications...actually talking and remembering even though his short term memory is shot thus far, they have to keep reminding him where he is after he tries to sit up in bed (the nurses say) I think that is the toughest thing for me now...relying on the nurses reports since we are only allowed in 4 times a day for 30 min. well that is about all for now, very slow going recovery but praise God he is still with us. The MRI should be able to go smoothly today..he has been much calmer, he was very upset with him self cuz the doc said he wouldnt sit still through it to find out the out come of the surgery and said why didnt i just lay there.. he is just confused. Well he asked about you folks and I said i had posted to update you. I spend alot of time over there sitting in the waiting room so not on the computer much. take care all and keep Don in your prayers..
sheree
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Hi Sheree...
Be assured that the prayers and very best hopes and wishes from all of us are constantly with yourself and Don. Each day will hopefully bring an improvement and we look forward to Don making an eventual full recovery. It was very humbling to know that he was thinking of his friends on this website at such a traumatic time. He sure is one hell of a nice fellow.
Very Best Wishes
Derek
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Hey Sheree and Rob: Ditto on Derek's comments- one hell of a nice guy to think of all of us! My heart is aching for all of you right now, but I am keeping you in my thoughts and prayers with the faith that both of you will be fine long term. However, short term, it's still a battlefield! (I'm really sorry the nurses aren't being more supportive of you). And I know the drugs are doing a number on him. Nurses in particular are "funny" about giving coffee to patients- I think they forget post surgery that the body still needs caffeine or at least they have to compensate for caffiene withdrawal... take care, please know that we are with you in spirit. love always, Annie
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Hi Sherree, I am new, but read about what is going on and want to let you know that I will be praying also! Carmen
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Poor Don I know this is a hard time for him, and your are right the best part is that he is here and very much a live. He has a long tough road but with your help and your family pulling together he will recover in no time. Funny how love is an amazing thing that will make such a difference. He sounds like a strong willed man and that is something he has going for him. I hope you find out the result of the the fluid leakage and could you keep us abreast about that? That sounds sooo scary and for some of us who will be going through it... we would like to know how it happens and what is the solution? Your posting not only does Don good but helps so many reading these things. Please give Don our love and know he is always in our prayers. Keep strong Sheree. :)
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Sheree:
I've been following this thread and want you to know that we're thinking about you all and praying too. We've been there.
My son Chris, was 21 when he was diagnosed with a 5.3cm AN. That was last April. He has undergone 6 operations since then. The two operations to get the tumor were difficult (8 hours and 18 hours) . If you wanted to see a nervous wreck with no sleep, I was it.
He had hallucinations, high blood pressure( which went on for 4 months), a racing heart, he had tremors and shakes too, swallowing problems. He could not walk, he had vision problems, facial paralysis and a whole host of other things. They all went away.. Even the facial paralysis is beginning to go away. It seemed like for each operation there were complications like CSF leaks and infections, allergies to medications but it all went away.
I hope I can be of some help to you. Hang in there. These days after surgery are rough and complications do occur. I know the doctors seem non-chalant but Raydean told me one thing. Take notes, write a journal. Write down questions. Pursue the doctors and the nurses until you get them to listen to you. Don't give up... I never did. Now I find that journal useful as I try to present to Social Security the facts that Chris was disabled last year.
Ask those doctors questions. If there are resident doctors on duty, ask to see the resident for information. I know that sometimes when a patient is in Intensive Care, you are limited to time to can visit. Ask, ask, ask and don't care what anyone thinks about you.
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Hi, Sheree:
I'm so sorry that Don has had these worrisome complications but, unfortunately, this kind of thing can happen with AN surgery.
Don sounds as if he's upset. Well, who wouldn't be? Yet I sense that he is struggling to deal with this unexpected trauma as best he can. That he thought about this website and forum during this time is simply amazing. Be sure he knows that, even if the thread doesn't receive a lot of posts, many people - who understand this situation better than most - are praying for and thinking of him. Not all will post. However, we're here and we care what happens with Don and with you, Sheree. Please keep us informed as your time and energy permit.
I know that Don will come through this as others have come through AN surgery complications in the past. Try to think positive.
Jim
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Hi Sheree: Whew, he's having a rough time. Reminding me of my post op time. Alot of times the constant lights, noise, his extreme discomfort with tubes, etc.,
not sleeping long hours will make anyone confused, disoriented. My blood pressure was flying out of control also, I remember the neurosurgeon saying
'I don't worry about high BP post op', meaning they'll give you meds to bring it down, I went to my PCP after discharge & since it continued high I'm now
on antihypertensive meds (that did the trick). I flipped out during my post op MRI - the attendant said he heard me screaming all the way down the hall
'GET ME OUT OF HERE', it did make them listen though !! Hang in there, it IS a tough road ahead, but you guys will get through it.
That's why I always say, & to myself, 'keep a peaceful heart.' You'll need it.
Please, please, please get YOURSELF as much rest as possible; he'll need you more than ever when you get home.
We are all here for you both, don't forget that.
'Keep a peaceful heart', Nancy
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Well here I am again...exhausted...
first of all I am sending my mother in law, mother and brother in law to my house for a night.. 3 hours away to see the kids (four of them) to get a breather..I think I will get a breather from them also and be able to hang out with don a bit more..they let ME stay a bit longer but not if I have my groupies with me.
so as for today..he was able to sit through the MRI...WAHOOOOO. they said 60 to 75% of the tumor was taken out. the gamma knife is what we will be looking at in a month or so to take care of the rest. They found out his left side of his throat is paralized, the doc thinks the double vision is a nerve thing. Apparently there were 11 nerves surrounding the tumor and they had to be stretched and moved and that is the result of the problems...which hopefully that means it will all go away.. He had a WICKED head ache today...probably lack of coffee..they finally had the idea to give him caffine pills. seems to have helped. He is still a bit depressed but with the head ache subsiding he was better. it was not a vein that was blocked it is a sinus cavity around the bone where the tumor was being extracted...it is causing the HIGH blood pressure (at about 198 at any given time) head aches and the excessive spinal fluid drain. Most likely the shunt will be put in towards the end of the week..then either back to the ICU or to the other ward THEN...to physical therapy for walking and balance if needed...he has not been out of bed and will not be out until the end of the week..that will be one week of being on his back. then either home or enduring physical therapy...ANYONE KNOW HOW LONG THAT TAKES?? well enough for now...maybe things will be calm and quiet tomorrow...no more news and worries. he is getting a lot of rest and is behaving himself. he has his restraints off...
thank you for all your kind words, words of encouragement and being here..
sheree
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QUESTION...
we were told that the gamma knife was not good for Don because his tumor was so "large" but now that there is roughly 25% left that the gamma knife is the solution.. Way back a month ago they really didnt talk highly of putting don through radiation because of his age and the fact that it turns the tumor cells that they are more likely to change to cancer...is this WRONG?? Our docs told us this at that initial appt. but now they are giving us another opinion..so i thought who would know best..but y'all!!!! thank you in advance for all your input. If you all only knew Don in person...not very un like him to think of you during this hard time..family is good but support from loving people some times ranks up there higher because they understand.
sheree
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Hi Sheree:
Thanks so much for the update. I have been thinking about you and Don alot.
I am so sorry that Don ended up being one of the ones with complications. It just happens. Any surgeon will tell you when you are contemplating surgery that they really don't know what they are up against, until they get in there.
I do know that some people have had temporary swallowing problems after surgery. It seems to be more common in the hard to get out ANs.
Radiation can be risky if the AN is compressing the brainstem (Am I right everyone?? That is what they told me anyway). Now that 3/4 of it is gone, they can radiate the remaining part. You can ask his surgeons but I would imagine that they got the part of the tumor that was compressing the brainstem. They probably left the part that was in the IAC compressing the nerves. If that is the case, radiation will work just fine. It would be just like radiating a smallish AN before it grows out of the IAC and compresses the brainstem.
The nerves will usually regenerate and settle down but it takes time. The AN stretches them and surgery messes with them. In time, they mellow out.
Good luck to you and Don and keep the updates comming. Kathy
ps: that thing about radiation turning the AN cells into cancer is a bunch of hooey -
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Hi Sheree: I can't help with the radiation issues, I was a surgery only pt. But, as for PT, I was really undsteady in walking for awhile. They sent me home with a walker, which I didn't use (along with a commode !); I 1st took short walks with my mom by my side - I explained to her I felt like I was walking on a surface suspended by ropes, kind of swaying (I'd pretend I was walking on a suspension in the rain forest!). 4 months out (even though I was working), I finally decided to go for balance therapy - it was rough at 1st but definitely helped (even though I didn't practice the excercises like I should have). Walking in the dark was the last thing to improve. I'm doing pretty good now (almost 9 months out).
Stay strong Sheree, keep a peaceful heart, Nancy
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QUESTION...
we were told that the gamma knife was not good for Don because his tumor was so "large" but now that there is roughly 25% left that the gamma knife is the solution.. Way back a month ago they really didnt talk highly of putting don through radiation because of his age and the fact that it turns the tumor cells that they are more likely to change to cancer...is this WRONG?? Our docs told us this at that initial appt. but now they are giving us another opinion..so i thought who would know best..but y'all!!!! thank you in advance for all your input. If you all only knew Don in person...not very un like him to think of you during this hard time..family is good but support from loving people some times ranks up there higher because they understand.
sheree
Hi sheree,
I am sending you and Don a MAJOR huggle!!!!!!!!!!
I may be able to help with the radiation question and hope others familiar will also chime in.
Sometimes a residual piece of the tumor remains if the tumor is too "sticky" on the nerve to be completely removed. That is the possible case with Don. By leaving a small piece of it means they are doing what they can to keep the integrity of the nerve without enhancing chance of damage. Now, many that have had residuals remain do follow up with radio-surgery, whether Gamma Knife, CyberKnife or FSR/Novalis. When the residual is that small, it is easy to radiate the tumor, then ensuring tumor death by killing the core DNA of the growth.
Please know this about radio-"surgery". (anyone else want to chime in on this, please do....). The radiation that is used is not "disposable" radiation such as the kind that is used on cancer patients. Many drs will use a "scare tactic" of noting radiation cancer to sway folks from doing radiation when it is not their "cash cow" or they are unfamiliar with radio-surgery techniques available. Heck, I have more of a chance of getting hit by a mack-truck or some other disaster vs. getting cancer from my Cyberknife treatment. There are many here (jcinma is my first one that comes to mind and I think JimScott as well) that had their tumors "debulked" then did radio-surgery follow up. They can attest to the process and how they are doing (I think Jim finished his radio-surgery late 2006 if my memory serves me right).
Hang in the sheree..... I know it's been an initial tough journey, but we are going to help you and Don get through this "bump" in the road.
xoxo
Phyl
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Sheree,
I'm following your story closely. I can relate to your frustration. If they are thinking about a shunt, hydrocephalus could be causing the headaches you describe. Chris had horrible headaches after the operation. He hadd several bouts of hydrocephalus and hsi shunt failed. They had to put in a drain and with that he had to stay in ICU Of course, the brain swelling contributes too.
As for walking, he'll probably walk soon. Chris spent the whole summer on his back (4 months) and he was totally unable to walk. Once they got the pressure off the brainstem, he started to walk. He has been in Physical Therapy for months and just last week they decided to try him without it. We're hoping for good things here and no relapse. He refused to use his walker after he left the hospital.
I don't know anything about the radiation but Chris has a small part of his tumor left too (4 mm). His doctor prefers not to zap it because he is only 22. So we are in watch and wait mode.
Another thing to watch is Sugar. Chris is not diabetic, he never was but during these operations he required insulin shots. That went away too. It seems like this tumor just upsets every part of the body. Hopefully, it will all go away for Don too. Chris takes no medications anymore. Sending you hope and hugs.
Rita
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WOW.... ask and you shall recieve...
thank you thank you for the info..
he had a really good day today they got him up out of the bed and into a chair...he was exhausted and messed up his catheter so he was in pain he slept for a long time after that episode. but encouraging enough. he is OFF the blood pressure meds and it is holding just high hypertension rate.. his output on his external shunt has slowed down a bit. they are going to clamp the shunt and watch it for 24 hours...scan his head to see if he is absorbing the spinal fluid. when will that happen who knows... hopefully by early next week they said they will know either to not have to put a internal shunt in or proceed with the surgery. the paralysis in his throat is still there and the voice issue along with the double vision is still there..I am sure those things are going to be travelling home with us. he is still a bit down but I am trying to keep him up beat. It was kind of nice to be alone today if that sounds crazy...the mothers and BIL are at my house. My sister in law comes in tomorrow to replace the lady that is watching the kids at home. Surgeon goes on vacation tomorrow for a week...hopefully his goo roos (his team) will keep us well informed and well taken care of!!
sheree
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Hello Sheree!!
What great news you have for us!! You must be so relieved. I sure am.
Please say hi to Don and tell him we miss him.
Kathy
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My thoughts and prayers are with you both and your family. I am glad to hear he is improving. I wish him a swift and speedy recovery. I am new to this site and have been following his progress. Best wishes. Shari :)
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Sheree,
Still following you. It's amazing how strong you are and how you are orchestrating all of these things in your life. The kids, the family...everything. It takes time but things do improve.
I sat beside Chris as much as possible all last summer. When he was in Intensive Care, I wasn't allowed in there for more than 20 minutes or so and then twice a day. He asked, "Where will you go, stay here". I stayed on the other side of the wall outside the NeuroIntensive Care Unit day after day. I asked questions, talked to doctors, nurses etc. I monitored every step of his care. When I was in the room, the only thing I could do was rub his feet. He loved that !
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Hi Sheree: I know you're busy (that's putting it mildly);
Hoping things are continuing to improve for Don...
It's a long journey you're on, hang in there.
Hope you're getting rest when you can.
Keep a peaceful heart, Nancy
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hello...
busy..well that is a funny term but yes and no..wait wait wait then just a short 30 min that I have to share with everyone 4 times a day.
double vision is getting better
voice is still a whisper
throat is still paralysed
he has not been able to walk yet to see how his balance is going to be.
they clamped off his external shunt for 24 hours and it didnt pass...once they did the scan this am to see if his body was absorbing the extra spinal fluid. THEREFORE another surgery on monday..a shunt will be put in. they are thinking of putting a PEG tube in also. he has lost 18 lbs or so thus far in a week. he can not eat a whole lot and is starving. I am worried about him getting malnourished. we will see. thanks for reading the posts I know you are all thinking of don and praying for him if you do.
sheree
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Hello again, Sherrie:
Let me join the other posters who are extending their concern and offering prayers for Don's recovery as well as strength for you. Glad that you're getting a break from well-meaning family for a bit. It should help.
During my hospital stay last summer (when I had my AN surgery), I spent 3 days in the ICU. My wife stayed with me a good deal of the time I was in ICU. She slept in the nurses lounge on a cot the nurses graciously set up for her. Initially, she was told she couldn't stay with me that long but she challenged the nursing staff by stating that she had been by my side for 36 years and was not going to leave me, now. As I was doing well (no complications) my neurosurgeon, who was well-liked and highly respected at that hospital, told the nursing administrator that he had no problem with my wife sitting by my bedside and talking to me when I was awake. She stayed.
Physical therapy can be very beneficial in AN surgical recuperation but I'm afraid there is no definite time-frame as each patient has different areas that need 'work' and we all respond differently, too. The hospital therapist can give you more complete and specific information once Don has been evaluated. He will have to work hard but it pays off.
As for radiation treatment, I'm surprised your doctor didn't mention FSR (fractionated stereotactic radiosurgery). FSR is becoming more common as a post-surgical treatment to remove any remaining tumor while avoiding facial, motor and sensory nerves. My neurosurgeon went this route with my large AN (4.5 cm) and it was very successful. He hollowed out ('de-bulked' in medical jargon) the tumor (down to about 2.5 cm) and last fall, I underwent 26 brief sessions of low-dose radiation. A December MRI showed some signs of necrosis (tumor cell death). I can't wait for my next MRI in April! For Don's sake, I would try to look into FSR before committing to any of the other, high-dose radiation treatments you mentioned. Consult with a radiation oncologist. He'll have the specifics.
Meanwhile, try to get as much rest as you feasibly can - and stay positive. You and Don will get through this. We all do.
Jim
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Hello Sheree and Don,
I have been reading about your progress and pleased you have so much support. Each day is progress as I read and I am very hopeful and happy for both of you. The days can be excruciatingly slow-mo, so the best thing to remind yourself of is as long as you see progress, even itsy bitsy forward moving it's all a very good sign of healing--just takes TIME.....You're probably tired of hearing this or you will hear this over and over shortly. Sad but true. Deep breathe when you feel overwhelmed, a simple but very effective stress buster that clears the mind so you can "hear" the answers to your questions.
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dons face began to be weak on his left side..hopefully it will just be slight and wont last too long..who knows...TIME is the answer for most things. He is trying so hard to learn to eat and drink with out choking..trying to not have to have a tube put in his belly or through his nose.. most everything is still the same. surgery on mondayfor the shunt and then move on to figure everything else out. i inquired about FSR and got the low down on it...thanks for the input and advise. until next time..sheree
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sheree... you just rawk in my book! :) thank you so much for taking care of Don and keeping us updated and ... well, just for being you. Please remember to take time for yourself, as well.... we need to make sure you keep your strength up as well!
Hang in there and please tell Don continued wellness and speedy recovery!
Phyl
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Hi Sheree: I echo Phyl's sentiments. Take care of yourself, we're here for you & Don.
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Hi Sheree:
Quite a few of us surgical patients had the late onset temporary weakness on our AN side.
Good luck on Monday and say hi to Don please.
Hang in there, Kathy
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i am so intrigued on the amount of people that read Dons post....Out pour of support and concern is just outstanding.. Like I have stated before just because the people are not posting comments I can see the love. i will pass it on to Don in the hospital..he really is needing to know of the support and to see people come in to visit him. He is REALLY worried about the surgery tomorrow and it is so hard for me to only see him 4 times a day for such a short time and to share that time to boot with family members. i allow that to happen because I understand they need to be with him too. I dont get to see him until 10 and sometimes the nurse on duty allows me to stay 5 min longer then the rest..and don just gets so overwhelmed with emotions that it is so hard for me to leave him. I know this will all be behind us soon and we will be home recovering.. if we can get him to eat better, and stay hydrated the rest will just work out I am sure..
take care and thank you again
sheree
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Sheree, since it's St. Paddy's weekend, I'm feeling the luck of the Irish with Don for Monday! :)
*tickles Irishwench O'Brien for a proper Irish giggle*
Hang in there Sheree... and thank you again for the updates. Please take a bit of time for yourself as well.
Phyl
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Hello Sheree ---I am a regular visitor/poster to this site--I am one of the NE bunch brunch (Phyl is our orgainzer extraordinaire!!)--somehow I missed this heart-wrenching drama until I saw it today--my heart goes out to you and Don and in some ways it is more difficult for the loved ones as they can feel helpless--and with receiving conflicting info it can add insult to injury!!! It does sound that Don unfortunatley had complications that the surgeons never know about until they are into surgery--but it sounds like they are doing all they can to make him well.. But be ever vigilant for explanations so you know exactly what's happening..
My 1 cm rt AN was removed retrosigmoid Jan 2001 and altho my surgery was "uneventful" I still had problems resulting from the surgery for some time--facial nerve/swallowing/dry eye/tinnitus/balance and all have greatly improved over time and I can live with--for example I can fast dance and (I am 58 now) w/not much problem but after surgery was on a walker for couple of weeks and so fatrigued I didn't return to work for 3 months.
I guess what I want you to know is that the road back will be bumpy w/twists and turns, but with the love and support of family and friends one day the thought of your journey will make you smile as you will realize how much you went thru and how much you have overcome!!
Unfortunately my AN is re-growing and I have seen several neurosurgeons and radiation specialists--I will have radiation not surgery as surgery didn't stop it first time--I do not regret having the surgery and would probably do it all over again but now radiation sounds like the best option-- I believe Don made the right choice and if the surgeons had been able to get it all then no further treatment would be necessary, but since there is a substantial part of the tumor left, then radiation is a good option... and I do agree w/Bruce forn research I've done that odds of tumor turniing cancerous are small --but you will run into neurosurgeons who are concerned about that possibility where others I've met do both surgery and radiation!!
Please know Don and you are in all of our hearts and thoughts!! Take care--Mary from MA..
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Hi don
I had a 3+cm removed 5 weeks ago.Not an easy surgery but then again were not getting a tooth pulled. I am fortunate that my tumor was able to be removed from my facial nerve without much facial weakness because at Mass General Hospital(BOS) they use a face nerve monitor during the 10 hour surgery.My tumor was pressing on my brain stem and I was having headaches and my neck was killing me. The hardest post op effect has been dizziness and balance. My first three days in the hospital were very hard and you should hope for the best for yourself but if you are having your balance nerve cut expect to be dizzy.Everyone is different but I did not find this easy at all and neither did my loved ones.My doctors however are pleasantly surprised at how well I am doing and and said I should be back to work in another month or two which will be 3 mths total out of work. I am still plagued with headaches but they are getting better each week and so is my dizzy/balance problem.This web site really helped me through the process and staying positive is important.I'm sure well hear from you again as you will have a million questions for us
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Alright Jason! Good to hear from you! I'll be coming home second week of April. Hope the freakin snow is gone by then. I'll call you soon.
Paul
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Hi Newbie,
Today is the day for the shunt and I'm praying for you and your family. All will be well soon and he will be home with the kids feeling great.
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Don and Sheree,
I read through this thread for the first time just now. I had no idea that you were having such a rough go of it. A.N. surgery is a very hard and scary kind of surgery especially because that, in many ways, it effects each of us differently due to the nerves involved. Oftentimes the doctors themselves cannot accurately predict what the outcome will be.
I went through the mill with a huge tumor as well as having a shunt put in. I had three surgeries: two for the shunt and one for the tumor "debulking". The shunt is in permanently. I went through a great deal. I spent a lot of time in the hospital but I emerged from it all in decent condition. I had great doctors. I'll probably never be the same as I was before but am still doing well. I think many of the problems that we're faced with - excepting hearing loss - will heal over time. The doctors told me be before my surgery that it would be a "long recovery". They were right.
My first surgery was for the shunt installation which had to be done twice because the first one had somehow become dislodged. The tumor resection came a month later.
Although it may seem impossible at first, I'm sure Don will get through this tough and terrible time.
Paul
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Hi Rob
How was your surgery? I sure hope things went well?
eve
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Has anyone heard anything about our friends Don and Sheree? Sorta worried no one has posted in a while.
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No I've been worried myself, keep them in our prayers
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Hi Sheree and Don:
We are kind of going crazy on here wondering how the both of you are.
Please post that all is well..............
Kathy
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Hello all~
Don came out of surgery just fine...the doc came and saw him this afternoon and said all went well. He is in a lot of pain and hoping the pain meds take care of that..
we had a surprise visitor today...Chaplain Spears (we knew him from Alaska) he just happened to be in Georgia so came to visit. Don just is so happy after a visit.
HAPPY DAYS.......
he had a rough night of NO sleep but he is DRINKING AGAIN....something from the surgery (OR TIME) has made it easier for him to drink. He had a rough bought with pain and by evening he was up walking the halls...WOW what a difference. I stayed in the hospital room with him WHEWWW that was rough...no sleep at all they bug you all night long..dont bug you during the day but man oh man. anyways the docs are REALLY pleased with his progress and time to go home is WAY earlier than we were looking at...just need to get through physical therapy for walking and throat. Do the usual things that need to happen before they release him from the hospital then re evalutate... I think I could go home and sleep for a week....uugh!! But that won't happen!!!! LOL It was just a WONDERFUL boost for him to see Chaplain Spears and he also had many co workers come and see him yesterday..forgot to mention that. I can see such a difference in him when he feels teh love and concern from others.
Well as usual I am set back once again..things were looking so forward...BUT...
don is having trouble with the everyday normal things... hydration and BM!!
he cant do either..and I am afraid he is getting angry with me because I am pushing him to drink and walk to move those bowels...I am sure he would just DIE to know that I am telling you all this.. He is having a bit harder time drinking than he let on (go figure) therefore once taken off the IV today he rapidly began to dehydrate.. and they have tried most every thing for the BM and now has a bottle of this bomb stuff (some of you may know what I am referring too UUGHH) He doesnt want to do it tonight because he knows it is the last night he gets to spend with his brother before he flies out tomorrow. I am afraid of driving home the three hours and then have to travel back because he is getting dehydrated or cant have a BM!! Other wise he got a "cool" walker with wheels to travel the halls and has had pretty much no head pressure or aches today.. I think I am just tired so am pushing him too hard, I am back at the hotel taking a breather and making him some decaf tea to get some liquids down him...
it was a rough night..he didnt get all that much sleep but hey any is better than none...
his head hurt all night long...is it because he has a shunt in...could be. well they took an Xray this am of his bowels to see what the deal is and i am heading back over there to see what they are going to do for him..
His eye is bugging him more and more hope that doesnt stay too long that way! and he was able to walk alot yesterday but he sure was tired tired tired out last night..slow recovery that is what I keep telling him. we are going to stay here even if they discharge him...I dont get a warm fuzzy driving all the way home with him not having the drinking and eating under control and by the way they ARE NOT going to let him out of the hospital until a BM happens...we will hang around here until Saturday (when becky flies out and I feel better about leaving his hospital. Don was just commenting this am (yes at 3 am) how wonderful it is to have the support system we have here and afar!!
Got my mom and Roger off to the airport today..
Lois just left with Sal to head to Enterprise and I just told Don to take a nap. He sure is wore out..he is still having trouble with the BM!! They have given him some more liquid stuff to make him go and it is NOT working YET... they say it will come. Since we are going to stay in the Marriot until Saturday they said we can discharge in the am. As long as he can stay hydrated the next three days then the worst is over on if he can stay hydrated or not. If he does get dehydrated the doc said his mental status will alter first since he has had brain surgery...and to NOT let him get dehydrated...ok well then he needs to stay away from the coffee....hmmm try to tell him that!! LOL. They came and took his staples out from his initial surgery a little while ago and that is looking good. The other staples and stitches will be taken out the end of next week. it is going on two weeks now!! WHEEW I just took a deep breath to begin the next step of this recovery.....
take care
sheree
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Hello Don and Sheree,
I am checking this thread daily but posting for the first time. I'm keeping my fingers crossed that all will be OK and this difficult journey will finally ease for both of you. /and Sheree, you are the unsung hero here. Please take care of yourself as well.
My prayers are with both of you.
Flier58
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I haven't posted to this thread yet, but please know I've been thinking of you and your family during these trying days. I will continue to send positive vibes your way!
Also, keep in mind that most of the Rx pain meds have a constipating effect. I was only on them 7 days and it took my bowels close to 4 weeks to recover. Something to ask the doctors about if you haven't already.
Katie
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Sheree thank you for taking precious time to fill us in. Very glad to read the second surgery went well and the shunt is helping. Don you have many far away friends keeping a vigil on your progress. Your wife is doing an excellent job of keeping us informed on your progress and I am very happy there is talk you will be going home! Please, please, please don't forget your healing can take a while, then again if it doesn't that is "icing" on your cake! Nevertheless, don't be discouraged and remember Sheree is taking on the roll of keeping you "on track" with healing, be a good patient to her--she's all you got. Be sure to communicate to her when you are becoming annoyed, impatient, as our caregivers don't read minds. Sheree, don't be fooled by Don's good days as the nature of healing will throw in many bad days too. Just as long as the bad days aren't too many in a row. I am very happy for both of you and look forward to the day Don types his own message!
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Hi Sheree and Don:
I am so glad you posted. It does sound like things are looking up FINALLY. You both deserve good things happening. The fact that Don can walk the halls is huge!! Some of the people on here that have had complications could not walk on their own until after they had gone to rehab for a while. Bravo Don!!
The bowel thing is awful. And like Katie said, the pain meds make it worse. I think the med I started taking for pain that was not a narcotic was Toradol. The vicadin or percocet (can't remember which) did do a number on my bowels. Once things started rocking and rolling, I was in good shape. Heres hoping he does not need THE BOTTLE.
Thank you so much for the update and I hope you can relax a little. BIG HUG FOR YOU BOTH.
Kathy
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Hi Sheree: Great news!!!!
I remember I was on Colace 100 mg twice a day for several weeks - which helps with bowel movements & especially
they don't want any straining which can increase intracranial pressure - if he's not on it make sure he gets on it (it's an over-the-counter so there's no problem getting it when you guys are home).
Remember, recovery is slow, especially with complications. His eye will bother him for awhile, he should be using lubricants, eye drops
if he has problems closing his eye.
Keep a peaceful heart my friend, Nancy
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Hi Sherrie and Don,
I'm so glad to hear he's doing better. Sherrie may God give you peace of mind doing this period. It must be difficult to be supportive and say all the right stuff that I know all of us on the patient side depend on. You have a special blessing in God's heart for your hard work. It seems like everyone that has surgery has problems with bowel movements after. My friend had 4 hour hip replacement surgery and couldn't go for days after. The Dr told him it is the anestesia. Just know you are both in our prayers and I'm so glad his minister from Alaska came to visit.
Cindy
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God bless both of you
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HE IS OUT OF THE HOSPITAL...
now trying to keep him hydrated and on the road to recovery...
hopfully HE will be the next one to post on here...
thank you again for your support..
sheree
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Sheree and Don:
What great news!!
The pc monitor was hard to look for a while. Come on, say hi and go take a nap.
Kathy
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That's fantastic news!!! I hope to read his posts soon!
God bles,
Dan ;D
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Sheree and Don... GREAT NEWS!!!!!!!!!!!!!!!!!!! Time for onward and upward and continued wellness and rest.
Sending major healing huggles to you both...
Phyl
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Sheree and Don:
Just a quick post to let you know that Don was in my thoughts and prayers and now I hope both of you can get some real rest - at home, at last - and Don can truly begin his road to recovery. Remember: Time Heals. Really, it does.
Jim
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Sheree & Don: YEEEEAAAAHHHH !!!!! "THERE'S NO PLACE LIKE HOME" Nancy
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Sheree & Don,
I just came across this thread and had to read all of it, I could not stop reading it and it gave me a new perspective/aprreciation on/of my wife's experience, she is a professor at the medical school at UPenn where I had my surgery she had nowhere near the commute, she walked over during lunch to bring me a chicken sandwich for lunch everyday of my week in hspital and two weeks in in-patient rehab, she had a fifteen minute drive home every night, boy were we lucky. I am almost 8 weeks post op and can tell you that we all struggled with that first BM so I was heartened that your wife's steadfast concerns extended into that realm, my wife was very much interested in every aspect of my care. Now as far as that radiation thing, my wife works in leukemia research and the docs she works with told me that the sort of radiation that they use for CK and FSR should (!) be very safe, however there are concerns with people lacking certain tumor suppressing genes (like but not exactly like the one that is feared to cause schwannomas (AN's) could, (no data exists either way) cause problems down the road. I emphasize that I had the surgery because my tumor was pressing on my brain stem and possibly affecting my ability to breathe and swallow so we went for it but also seriously considered radiation for non-invasive reasons. Btw, my ENT was all factual and cold hard fact and my neurosurgeon had a great compassion and wit and bed side manner (not very matter of fact about my symptoms). Please ! talk to your surgeon at this point as to whether or not you could wait and see and follow your remaining tumor by mri, it they cut off nutrition flow to it, it is possible that it will die some on it's own (necrosis, assuming no angiogenesis, (growth of blood vessels by tumor to feed itself) and Don and can recover some before further treatment. It may reveal just how much (side affects)is being caused by surgery aftermath and how much is being caused by remaining tumor. I was relieved that they got all of my AN in one shot, and I realize that having some tumor around may seem like a cloud over your heads but the number one thing is what is best for the long haul for your family. I only suggest that you ask these things but I am not a Physician, but my physician mentioned the possibility of leaving some tumor for wait and see for me, becuase of the physical location of the tumor, I am aactually a scientist like my wife. Sheree, your devotion to Don and to this board are inspirational and these are good folks here, I was rooting for him while reading this, realizing at times that I was in in-patient rehab when he went in for surgery on the 7th. Being home will be so good for you both, Don, enjoy each little milestone and share them here, many of us felt the same jubilation at our first time up the stairs or our first un-assisted shower. Hang in there, you have been through much and from the sounds of things, have so much to persevere for. Reach out here for kind words of encouragement or understanding, we will be here for you, heck you can call me if you want. I have to go to sleep if I am going to work tomorrow. It is 3am. God Bless,
Steve
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Don,
I am a disabled Veteran (USN Diver), and I forgot to thank you for your service. Boy, your transition to civi-life is going to be more of a challenge than mine was. I just realized looking over your inspirational posts. Gotta sleep now.
This has been like watching extreme home makeover twice (Doggone show makes me cry sometimes). If Lorenzo is reading this, an entrepreneurial idea, extreme AN makeover show? I'd watch. I do it every time I logon here, very inspirational stuff in this thread, I can't wait to hear that Don and Sheree are well.
Cheers to all,
Steve
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Hi Don & Sheree: Wondering how you're doing Don?
Hope you're getting along okay, or, as well as can be expected.
The first few weeks are the roughest, all the adjusting to the post op 'limiitations',
headaches, balance, eye, eating & drinking..... well, just about everything.
I remember the 1st time I put a bing cherry in my mouth, it flew right back out across the dining room table,
all I could think was 'Bond, James Bond', like it was some kind of weapon, in between the laughing & crying
things slowly did get better.....
Hang in there guys, Keep a peaceful heart, this part of the journey is rough, Nancy
ps: I just remembered, I was looking at my post op instructions the other day (cleaning out drawers), & the docs wanted me on the Colace for 6 weeks !!! It really did help(too much information, I know, my co-workers tell me that all the time - I wonder if my frontal lobes got damaged along the way...lol )
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hello
here we are again in a hotel in birmingham al waiting to go in to the doc in the am for suture/staple removal. Don is VERY tired and has a hard time staying down...
he has a harder time drinking eating and talking once he gets tired.. still taking at least one three hour nap a day. my extra help is going home tomorrow... will begin to do it all alone..I am sure i will do just fine...just getting tired. well thought I would leave another update..don does NOT get on the computer like he used to at all.
take care
sheree
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Sheree,
God to hear frm you guys, the fatigue is normal and I think most of us suffered through it but Don has been through an ordeal. Did his doctor ever identify the cause of the BP spiking, I had hypertension prior to surgery but lost weight (35 lbs.) and almost collapsed three weeks before surgery frm low BP and they took me off meds for Hypertension, just curius what happened there. My wife and kids, Susan (wife) and Evelyn 4.5 yrs) and Julia (14 mos. , isn't talking much yet), are praying for you guys every night. I have an AN Mom who I keep in touch with whose daughter 25 is going through the swallowing thing and she is about to get her tube out because she couldn't swallow at all and now a month later she is fine. Take care, (you especially, get rest when you can),
God Bless,
Steve
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Hi Sheree & Don: So glad to hear from you. Yes, the fatigue is horrible. I was the same way. 9 months out & I am so wiped out after work still.
Let Don know this is the norm. How are the headaches ? Mine were also constant for weeks. I remember while at the appt. to
get out the sutures, having to take my extra strength Tylenol, I took them round the clock every 6 hours, wish I could have taken it
more often. Hang in there guys, this is the bumpiest part of the road.
Take care, Nancy
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Sheree,
Glad to hear (?) all is moving forward with Don. So, your help leaves soon....remember you are never given more than you can handle. You have been there for Don since the beginning and from the sound (?) of it you have handled "everyone" with your best efforts. You do need encouragement and know through this forum you receive all our support as we know it is our loved ones, friends that have gotten "us" through the worst by just being there. Remember Don's recovery will be progressive, but probably he will tire of it not moving fast enough (silence can be golden when you are at a loss for words to "fix" it). Your shoulders are broad enough to carry the weight of a new beginning into Don's retired life from the military, by the way, thank you Don for all you have done by serving our country. My son-in-law is Army SF deployed as of this moment, and very proud of his accomplishments. Be sure you take time for yourself Sheree as you are very important to Don and his recovery. Take a day off during the three-hour naps to do whatever! Weeeeee!
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Sheree, Glad to see your Don is feeling better. We really need to talk, what is it with all these DONS having an's and side effects??? See our story under an community section those attending in july topic. We are living a paralell universe. It seems your Don has had even more side effects than mine. Me being positive with him even tho I don't feel very positive has really helped him. I never let him see me get down, but Karen is right when you can rest, do because it is very hard on the caregiver also. We will keep you in our prayers.
Mary Ellen and Don
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Sheree...sending you and Don continued wellness wishes and huggles. I know that being the "caregiver" can be so difficult and exhausting and yes, overwhelming, but know we truly are here for you..... please hang in there. You're doing a fantastic job and Don is so truly lucky to have you.. and as for Don... please send him my best wishes and healing huggles. It's the initial hurdle and hoping things will calm down and really start pushing forward now.
Both of you are doing great! Hang tough!
Phyl
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Sheree and Don: hope this finds you somewhat on the road to recovery- I am keeping you in my thoughts and prayers. Hang in there! xxxooo Annie
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AGAIN I am just overwhelmed on the support you all have for us...it is just mind boggling...I hear from you and feel the support way better than some family members...I guess because you ALL understand this all too well.
well the appt went well yesterday..the stitches and staples came out just fine..the shunt is set at a good number. we got physical therapy slips for speech and for walking, which we will do in our home town. we had an xray done on his arm (where the last iv was located) it feels like a catheter was left in there...they say no it is just dried blood to put a hot compress on it. I requested another throat test be done..because of the choking..it is much worse. they said all is the same as from before and that he needs to just SLOW down on eating and not necessarily eat all the same foods..eat proteins and quality food and allow the throat to heal. he is just not a patient patient...as you all know. he would love to blink his eye and be healed..slow is just not settling well with him, even though his body is screaming at him to slow down. i am just the warden as he calls me. the kids are pretty stressed out from all the change and well I could go on and on you all know. Anyway he is on CON leave for 6 weeks and then we come back here to Birmingham may 15 for a scan to see what the rest of the tumor is doing and check the shunt and the usual follow up stuff after sugery. So we head back to the house..three hour drive. After our second attempt to get my mother in law to the airport..the weather in tx prevented her to be able to fly out and connect all the way home. take care and thank you again for all your kind encouraging words and prayers...I APPRECIATE IT!!
sheree
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Hi Sheree: Well, let me tell you, from an 'impatient' ex-New Yorker, he WILL LEARN PATIENCE whether he likes it or not !!!!
Since a young kid I was always very impatient, but since this happened to me, granted it took several months to
work its magic, I have become more patient than I knew was possible !!!!! And it's a feeling I've come to LOVE !!!
I don't rush when I'm driving anymore, using the motto 'when I get there I get there'.... It's great to take the time
to enjoy people, nature, etc. Right now Don's probably so confused & angry over this whole episode (at first I was grateful
to be alive, then the anger set in... all the steps you go through in dealing with loss... then acceptance...), he doesn't want
to know patience, but he will, believe me.
Funny the medical people mentioned for him to eat slower, I was a MARATHON eater myself, everyone always said to me'slow down, what's the rush?' lol
Send him all our good wishes & also to you my friend; Keep a peaceful heart, Nancy
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Hi Don and Sherrie,
I've been reading your story as it unfolds. Happy to hear that you are heading home again. I agree with NancyAnn. Don will learn patience. There is no other way. I used to always be in a hurry for everything. After several months I have finally learned to stop doing that. Please remember that both of you need to rest. Even caregivers can get tired out. My family was big enough that they spreadout the caregiving time.
Continued good wishes coming your way.
Jean
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Sheree,
I called my wife the safety monitor. LOL, I like warden better, It was rough on our little one when I got home, strict no toys left on the floor, my dogs were driving me nuts and I was stressful for My wife Susie, but she hung in there and she is out at Ann Taylor hopefully doing small damage to my credit card right now, I tell her to go decompress now that I am ok being on my own at home 8 wks post she stayed home with me for one week and I have been driving three now, watch out on the roads!!. Don will be back to normal eventually. Nancy ann is right the patience is kinda forced on you. We implemented a movie night on Susnday nights to give the kids something to look forward to, tomorrow night: Happy feet. watchin those penguins will be like a flashback to my first steps after surgery slow wobbly steps and then sliding on my belly. Yikes!!
God Bless and take time for yourself if you can,
Steve
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good morning
he sure has had a rough road with this coughing thing... he got to coughing/choking last night and finally had to just go to sleep to get away from it..with out dinner or anything more down his throat. It frustrates him SO MUCH. We are a very active family and are always on the move.. poor don just had a hard time yesterday keeping up..he slept through the movie that we took the kids to. and finally agreed to drive one of those carts at target so he didnt do so much walking. It is hard for us to slow down to let him keep up also. We really should have just gone home at some point and let him lay down, but before you know it the day is gone. His facial nerve is finally looking like it is healing, some movement is coming back a bit at a time. thank you for the ensure idea.. he did lose some weight but he wanted to so we are ok with it still coming off as long as it is slow and not because of malnourishment. hopefully we will get the ball rolling with speech therapy and physical therapy today. take care ~ sheree
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Hi Sheree: WOW!!! I coulnd't even THINK about going to a movie, let alone do ANY shopping, etc. the first 3 weeks !!!!
I remember having difficulty with choking (mainly it ws on my own saliva or when trying to drink fluids), this also
will get better with time.
Hang in there guys !! You're in my thoughts, Nancy
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we have physical therapy and speech therapy tomorrow wahoooo... I need him to understand his throat better so he does not continue to choke on everything (even air)..
the doc just called me to talk about this choking/throwing up thing we are going through. I guess it must be a combination of the vocal cords regenerating and coming back and him coughing TOO HARD therefore he is causing it to be a fit and then throwing up THEN causing his head to KILL>>> he is napping right now..a good thing!! I would like to convince him to nap a couple of times a day but he wont hear of it..uugh!! "the warden" comes in and says then sit down... I am sorry to sound like a meany especially when i say it is hard for him to keep up with us...we should really slow down for him..the kids (4 of them) have a hard time just sitting around and waiting for daddy to nap..thank God for the pool!! but like i stated before we are a very active family and he is the ring leader and it is very hard for HIM to slow down and listen to his body to know that enough is enough and he should just sleep. he teases about a hammock but hey not a bad idea then the kids will feel like they are with him and he is resting..ok I have rattled on long enough again thank you for your support and we are alive and doing better so things are good!!
sheree
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Rattle on sister - glad to hear from you !!
Good luck tomorrow during the therapies.
Sounds like Don is one DARN fighter !!!!! It's a good thing to, he needed it to get thru all he did & is still going thru.
Keep the faith !!!! Nancy
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Hi Sheree and Don:
I remember hearing this from my surgeons like it was yesterday: "resting and naps heal. Do it often and not just 5 min. cat naps. As you get further out from surgery, the naps can be shorter and not as often. Listen to your body!!"
The first day home from the hospital, I did not listen. I had survivor euphoria and cleaned out drawers, cooked a big dinner, went outside for a walk etc...big mistake. I was fine but down after that for a week from my "so glad to be alive and home day".
Good luck tomorrow and give Don a big hug from all of us. Kathy
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hello all..
therapy went well I guess...they just evaluated him yesterday and just plain wore him out.. He was feeling so ill all day today trying to regain his strength. They didnt even do therapy just testing to see what level he was going to start at. He is pretty out of balance and his throat is off too (like we didnt know that) but nice to have experts begin to help him out. they are thinking twice a week is going to be a good start, don is not too excited about doing it because it is in a town 30 min away and it just wore him out today. They suggested all sorts of ideas on how to eat better without choking...he is not too excited about eating anymore He is either choking and worried about making a scene in public or picking that wrong food to not be able to get down smoothly. they want him to slow down and he doesnt know how to do that, I am hoping time will make this easier. he seems so mentally, physically, emotionally, all those things lacking.. I feel for him and wish there was something I could do for him. He is so pushing me to begin selling real estate ( i was able to pass my state test while he was in the hospital) but I am so afraid to leave him to just rest and not do too much... I dont have 4 kids I tease saying I have EIGHT..he is worth more than one. I have been reading some other threads and think don is feeling alot of the same things as the others. He does have a problem with noises too...I see it more when we are in the car and all the kids are talking and the movie is playing and I am trying to talk to him..he just gets OVERWHELMED and I have to stop everything for him to regain himself.. I think the popping and sounds in his head is driving him crazy too. he is having horrible head aches...that goes away too right? he told me that he wanted me to check on this site info regarding headaches and what to expect...They have him on 4 pills of dilantin a day I suppose for fear of seizures...now he has to worry about gum disease.. when people ask me how he is doing I tell a short story of how he is and then just say HE IS A LIVE and we are truly blessed. he is still overwhelmed with the amount of people that are still helping us.. we had a guy come by the house today to see about the tree damaged in the tornado that needs to come down..and we are being quoted over a grand to do it...well this guy turns out not able to do it either...too close to the house and hanging over the house. BUT just the fact that there is a volunteer group here in enterprise cutting down trees for free is just awesome. I could go on and on with the help out pouring our way...but of course I still feel like I am drowning I am hoping it levels out soon. well thank you for listening and reading an update on DON... i do hope he does get back on the computer but he is not interested in it at all anymore.. he is even giving me his lap top (where I have one already) for the office where I am going to hang my hat! i see a personality change in him, I guess that happens also.
Take care,
sheree
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Sheree: I forgot to tell you !!! Balance therapy DOES make you more wobbly - the testing was tough, I remember that, but they want to CHALLENGE the balance,
it helps force the good side to start kicking in better, he will feel more off balance after the therapy, but that's normal. They'll also give him exercises at home to do. 2x/week is routine, after a few months or so, it'll decrease to once a week, etc.
I didn't go to a restaurant for months due to how I look when I eat, now I don't care, but I do put less food in my mouth & eat slower (now I'm the one to finish last instead of 1st). Yesterday I started choking on my saliva, it was horrible, I had to run back to my office for water; so things like that still happen but much less frequently.
I had headaches around the clock for 2 weeks after I got home (3 weeks post op); then, they started to lessen little by little (it was extra strength Tylenol every 6 hours, then 7 hours, etc. etc.).
Also, he has the added PIA of being on Dilantin (I didn't have to go on that) - I've heard Dilantin makes people feel weird anyway, so he has that extra challenge to deal with. Concentrating is difficult enough, being on Dilantin makes it worse. That may be a reason also that he doesn't want to go online. I had no ability to concentrate post op. It's still rough at work (9+ months out), sometimes I feel I just can't think anymore & have to take a break. Now I love peaceful things, taking a walk, just sitting outside, listening to music, etc.
Noise still bothers me - all sound is going into one ear & it takes time to get use to; loud noises are horrible. You may want to look into a musician's plug for when he's in noisy places, I used mine recently & it really healped. I still avoid places where I know their are alot of people, talking; & I avoid the 'loud talkers' (the ones who probably are hard of hearing but refuse to get a hearing aid). Maybe you can tell the kids to 'talk softly' around dad, how he doesn't scream at them to 'shut up' is beyond me !!
Please take care Sheree, give Don my best, & both of you keep a peaceful heart. Nancy
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Sheree, you are truly, one amazing woman! I sit here reading the update and know that Don is SO very lucky to have you in his life. thank you SO much for this update. Please tell Don that we are cheering him on... and cheering you on as well. Please take time for yourself, congrats on passing your real estate test and please remember to take time for YOU!
I am in awe of your strength! I know there are days that you may want to say "oh, crap! what the heck?" but I truly do admire your strength and resolve.
Hang in there and please send Don my wellness wishes.
Phyl
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Sheree and Don,
Glad to hear you are finally on "the road" we (surgery patients) are on. Forward progress made me feel better. I had rehab for six weeks following surgery with every day/every hour of exercises at home. My husband works at home and every hour he would stop his work, and take me outside for walking on the sidewalk and then walking and turning on the lawn, then in the evening he would shut off all the lights and have me go through the walking and turning around exercises. My greatest challenges now are still soft surfaces, dim lit areas, standing w/o wobbling with one foot in front of the other. The exercises I did at home seemed really ridiculously simple, but oh so necessary to get the other side of the brain to take over the balance. I do know from experience that the first time with anything is always the hardest and worst. Try to remember that as "a voice" inside your head tends to creep into your mind telling you "it will be awful." but ignor this as the second, third, fourth, etc. try tends to be easier.
As for the headaches, yes, I did have 24/7 for approximately 2 months, then they began to taper off and I now am down to one ibuprofen on occasion. I am 2+ years post op surgery. In the beginning I did not like having to take mega doses of ibuprofen (acetaminafin did nothing) and by the time I got to where the pain was tapering off and my dosage was becoming smaller I decided to see how long I could go w/o taking anything, bad decision. It's best to keep ahead of the inflammation game. Best to be able to "read" the starting symptoms of head pain before it gets way out of control and you need larger doses for longer period of time, when a smaller dose before the pain really sets in would serve you better. My signs were flashes of light, incision/scalp tightness, excessively dry eyes, stomach upset, irritability, ear fullness, etc., and when I saw these as signs I would give it more time to show itself and at the first sign of headache I took medicine. Too much stimulation leads to brain fatigue. Kids chattering, wife asking questions, searching your brain for words in response to questions, watching movie and trying to concentrate on the plot, something as simple as showering and thinking about other things at the same time creates "brain overload" and best to keekp this to a minimum. This is also known as multi tasking and reading other posts you will hear of their difficulty with it. It will get better only if you keep the "stimuli" to a minimum, oh and wear ear plugs too as noise is a stimuli. This head pain will go away, just rest, sleep and know it's the ridiculously simple things that serve you best towards a speedier recovery--hope this helps. Now rest--that's an order!
Creating single minded focus with everything, movies, conversations, simple day-to-day tasks, projects around the home, will help tremendously as well as, one day at a time. It's a whole new you, a whole new world, nothing ever stays the same!
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Hello,
He was up and around a bit more today...he slept all day long yesterday like the day before. I need to keep check on the depression if that is at all possible. he is really feeling overwhelmed with all the problems and is having a hard time thinking I am ALIVE. And knowing things could be worse. he complains about the noises in his ear more and more..I did look back on the threads and found the one about ringing and noises...uugh so not really any good news on that one. I guess it is there, he said a lot of popping sounds and gurgle noises. His facial nerve is calming down and it is almost normal again that is a good thing. His voice is still off and will continue to be for some time they say. i find his balance is more off than the beginning. they DID NOT call me back on Friday to schedule the therapy appt next week...ugh!! He is ok with that since he does not have to make that trip to Dothan.. We got invited to an Easter Dinner tomorrow and they planned it around Don's nap in the afternoon (after church) people here are so wonderful. I think I have mentioned that already huh! he is thinking the dilantin is messing him up bad. he is on 400 mgs a day. i dont know if that is just something to blame or if it is really messing him up.. he does seem slower and not able to focus like some have said it will do. thank you for the personal opinions and stories it sure helps to know what others have gone through. I have noticed he is much more frustrated around the kids and cant tolerate them...i guess it is the noise and bickering they do. I dont know how to change that for him or keep them quiet (4 kids keep in mind) or at a low roar. he is taking motrin for the head aches he HATES how the Lortab makes him feel therefore wont use it. I do think he should keep the motrin on board and not wait until the pain is too severe. I read your posts out loud to him now and he is reaping your advise too...THANK YOU he says.... Have a HAPPY EASTER...
take care,
sheree
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Hi Sheree: The Dilantin is definitely messing him up - maybe you can call the doc who ordered it Monday & ask him about how long he needs to be on it, maybe lowering the dose, etc.
I always said the same thing in the beginning "Thank God I'm alive", till the facial paralysis thing sunk in. It is depressing what he/we are going thru, there's no way around it, it does take time to come to grips with it. Remind him HE'S ONLY 1 MONTH OUT !!(tomorrow, right?), + he spent more time in the hospital then most of us (even with the facial paralysis, I had surg. on Mon., discharged on Fri.). (I went back to work part time after 2 months, & probably should have waited another month).
I don't know how old the kids are, but noise is a big issue, as is alot of running around, etc. I don't have kids, I don't know how you can explain to them the need for peacefulness at this time for Don (maybe ask your pediatrician how to get the message across).
I tell ya, I don't know how he could even go to an Easter Dinner, well, that's me - one month out I couldn't even think about socializing with others, just trying to walk was a feat, doing regular daily living things, showering, taking walks. It really takes alot out of you.
One month post op I was having the gold weight put in my eyelid. The energy level was still low. Headaches, balance issues really wipes a person out.
I wish you all a Happy Easter also; This IS a rough time, it's only been a month, remind Don to be patient with himself.
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Wow, what a road you two are traveling. I wish I didn't know it all too well. But, I am here and very much alive and wish I could help Don in some way. If I could say one thing it would be to "slow down, take a breath and close your eyes: imagine yourself further down the road and you will see that things are better, easier, tolerable" and as bad as today seems, I would bet that however subtle the change may be that next week on this same day, life will be ever so better. This is a life altering experience, we certainly didn't choose it but we have nothing better to do than to accept this detour, go with it and we will find ourselves in another place. The one thing that I will say is that this illness for Don effects the family as a whole and each person/child has a role to play and a place in Don's recovery. If everyone can look at themselves and ask what they could do to help Don that would empower everyone. Everyday each child could make a concerted effort to be quiet when they want to be loud or read a newspaper article or simply lay down and take a nap with Don to be close to him. It is so hard for everyone to see the person that they love suffering so they feel powerless and chaotic. So quiet time is a good thing for everyone. I wish you a very Happy Easter..Holly
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I to have the headaches but use a combination of Motron and Tylanol throughout the day. I also have tried to go with out the medication but it is better to stay on it and take the pills then feel the headache coming on. I had noises in my head as well when I laid my head down to go to sleep. It was like a crackling noise that made me think that my stitches were breaking but they were not. The doctor wasn't sure what I was hearing but said the head and mind will do funny things to you. I will tell you that the noise took a while to go away mostly but I still hear a few crackling noises still today. The best advice given was to listen to my body and and sleep when you need it. That helped me the most even though it was hard for me to take a nap int he day. I now have started back to work as tolorated for the last couple of weeks and it seams to be going good. Only get tired faster and the headaches come on hard and faster but if I keep the medication going then I can work it out until I get that good night sleep I look forward to each night. It is like starting fresh the next day even if I over did it the day before.
Hope you and your family is doing better and that for keeping us posted. It helps us as well.
Greg Brown
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Hi Sheree & Don: It's me, the 'Keep a peaceful heart' police walking the beat,
thought I'd check in & give you guys a 'hello'.
Making sure you're following the rules: rest, patience, rest, taking leisurely short walks, rest, patience, rest,
let your mind take you on journeys to take a break from the post op routines/exercises you're doing, rest....
Remember, you're just starting this post op path, I've been walking this beat for awhile; be kind to yourselves, take a deep breath, it will get better...
Always good thoughts to both of you, Nancy
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thank you for the check in...he has been sleeping and trying to stya down...that is hard to do.
tomorrow is his birthday so I am going to try to let him have a some what normal day with a nap or two!!! LOL
he wants some radio operated plane to play with and we ordered him a hammock to lounge in!!!
no word from his physical therapists to begin...beginning to get frustrated with them. The kids are driving him nuts because they are taking advantage of him not being able to control them...makes me feel guilty to be gone from the house for any period of time.. I have to come in and lay a heavy hand on the kids and spank if need be. tough times.. let me tell ya. oh well this too shall pass and they will I am sure survive. thank you again for your thoughts prayers and words of encouragements
his head aches are still steady, the dilanten is driving him crazy and he is afraid of eating much for fear of triggering him to throwing it up...I am hoping this will too pass.
sheree
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Hi Sheree, & Don: HAPPY BIRTHDAY (although I bet it doesn't feel that way yet, but it is). My birthday gift to you is what I found out on my 51st birthday:
IT'S WHAT'S IN THE MIND, THE SPIRIT, THAT COUNTS, NOT THE WRAPPING (although we do appreciate when the wrapping feels better !).
Sheree: give the Physical Therapists a call, then look into maybe a different group. The 1st group I called weren't very polite, so I called a group
that were further away from me, & found them very responsive. I started my PT right away (but remember I was 4 months out. Maybe there's a
reason they want to wait but they should have told you that on the 1st appt.)
I'm not getting a good feeling about the kids taking advantage, hopefully some here with kids will have words of advice - My parents ruled with an
iron hand so I'm no help there. But you're right, wait till Dad gets back on his feet, unfortunately it takes time.....
Oh boy, that Dilantin is one bad mamma jamma, geuss the docs want him on it longer then....
A hammock huh ? Does it have a switch so it won't sway when he gets in it ? lol
Best wishes guys, hang in there as they say, thinking of you both, Nancy
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I am so sorry that you and Don have been through so much.
I'm new to this and have not had any treatment. But I can add a bit about Dilantin. I'm been taking it for seizures for almost 25 years. Twice in that time, I've accidently double dosed (stupid memory lapse; ended up buying one of those pill boxes to make sure it didn't happen again). Within a few hours, it's was if my senses were slowed. Reaction time greatly lessoned. I basically had to sleep it off. It may be that his dose is too high. Therapeutic blood level is 10-20, but that doesn't necessarily mean that one can't be maintained seizure free on less than that. Have they checked his level. Also, how much is he taking.
I'll certainly be praying for you both. Being a caregiver is extremely hard. He is lucky to have you.
Keep us updated.
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Hi Nancy,
tell Rob Happy Birthday. Have you guys thought about some kind of Family councilling. My husband and I are seeing someone, and our marriage is on shakey ground. This recovery is a very difficult thing to get through,and I can't imagine how it would be with 4 kids to cope with. How old are they? They might listen to someone other than you or Don to explain what is going on. My Youngest son was 19 when I had surgery and it really scared him. He went from being a selfish normal teenager to a very protective and supportive Man. [ OK he's still selfish sometimes ] Seeing his Mum with a shaved head and sleeping most of the time, he thought I was going to die. You are going to need some kind of outlet Nancy, the carer goes through just as much as the patient, just in a different way. As I have said before I think our partners should have their own cattergory on this sight, even if it is just to vent. Reruns of "Seinfeld" really helped us and I still watch it everynight. It is still funny no matter how many times you watch it.
Take care.
Lainie.
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Hi Lainie: Although I appreciate the words of advice, I'm not the one with the husband, Sheree is ! (though I'm sure she & Don will get a good laugh out of this as I
did !!!!!).
Oh, & I'm a big Seinfeld fan also !!!!!!!
Take care you cutie !! Nancy
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Hi Nancy, so sorry what can i say. I guess with menopause, AN, and hooked on Seinfeld my brain is fried. Glad you got a laugh out of it.
Lainie
PS would you like my husband? he is An and potty trained.
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you guys crack me up.......
yes it is me with the husband that had surgery...Don had a good birthday and did not sleep much today though he wanted to sleep more...really worried and has his mind running rampit... I know it is tough for him to not be able to take care of us and do the bills and to work...men they sure have a hard time to just lay down and be needy!! Maybe all men are not that way but let me tell ya don is having a hard time just laying around.
Don is on 400 mgs of dilantin a day and would like to take himself off of it...I will call the doc and talk about it
I did put a call into the therapist today and did not get a call back yet. They were really nice to us just needed to get the reports from the docs after his surgery..so maybe the hold up is not there fault but hey I am waiting and need to have an answer. he is still throwing up daily and hating it and needs the balance therapy. the kids need to respect daddy more BUT they are kids and selfish. Thank you for the advice and we have had a ROUGH year let me tell ya... he was in Iraq the year 2005 we lived in Fairbanks AK so I took care of the 4 kids in our house we just built... came home had to re adjust to life then moved from AK to AL and then started a new job and then bought the house here... decided to retire and then got hit by the tornado and the rest is history and wont bore you with all the little details but tough to deal with and definately have put our marriage to the test...here I AM STILL STANDING ...then more than just the surgery the past few months. with that said we have a strong marriage at this point and can handle what ever the Lord puts on our plate. well better get to the kitchen and make sure we are ready for tomorrow to get here...
thank you for your words of wisdom keep them coming...
he did make the comment today and said that if he could do this all over again that he would NOT DO IT!!! thank goodness we are on the road to recovery and putting this behind us...
sheree
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Goodmorning Sheree, it's Nancy, (the 'other woman' !! lol): Well, geuss we'll give the PT people the benefit of the doubt, huh?
Maybe, when you call the doc re: Dilantin (goinbatty is right, he should be getting blood levels ), ask about
the vomiiting (maybe the doc can call in a prescription for a suppository - I've had to use it once & worked great).
I've also thought, 'I would not have done this, I should have had radiation', but realized you can't second geuss - My doc
is very experienced in AN surg., they don't know how badly the nerve's damaged, etc. I think Bruce & Jim Scott helped me
realize these things.
Oh, please tell the big guy real men do wear pink, do cry, & do let their wives take over when they need rest. - even war veterans.
Give him a big hug from all of us for serving his country & keeping us safe !!!!!
You guys have certainly been through it these past few years - this is another 'bump' in the road. As they say what doesn't kill us
makes us stronger (boy, I've been stating alot of sayings lately, they just keep popping up in my head - well, better that than
another AN, right ?)
Take care guys, Nancy
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Sheesh! You both have been through much this past year. Can't imagine what Don went through in Iraq, but have heard stories from our son-in-law as he was there same year. Glad that's over, but now he's deployed elswhere. You have handled much by yourself Sheree and you are an example for those around you. Gives me an insight to what my daughter has handled and will be doing by herself as they are expecting their first child in August. Don definately has a rough road now and I would like to share with him anti-nausea technique used on my while in ICU. I had a bout of throwing up then dry-heaving. To stop this the nurse put an alcohol soaked cloth under my nose. It immediately stopped me from expelling my guts and brains. I have since used this technique and find it works for me. Hope it does the same for Don. Don, you must NEVER say "never" as another choice of treatment does not guarrantee an easier outcome. Best to say, "Today I am standing." (not very well yet, but standing!) and take it from there. PT will definately help and remember first time doing exercises is always the hardest, the second try will be better so don't let your mind tell you "don't do this as it's going to make you feel awful." it's just your mind fooling you, second time is not awful, but better. Don, please try to see and accept "the new you" as resistance will only drag your symptoms on and your symptoms will be more prominent. Be happy you are standing today!
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good morning all
went to teh ER last night..
he was throwing up way too much yesterday afternoon for my liking and he was scared.
he started to walk VERY wobbly and kept saying I dont feel right.
So after calling and talking to two different docs in Birmingham they agreed that he needs to be seen to just rule out shunt failure, dilantin being too high in his system or just that he is throwing up as a result of some side effect or the tumor receeding.. well all tests showed everything fine and they have him sone pepcid (oh yeah his stomach was killing him too) and zofort and after an hour he said he had not felt that great in a long time So a follow up call will be made to both docs today and he is feeling ok this am just a head ache...dduhh!!
he is going to go to an interview thing on post this am that has been scheduled for some time now...extra prayers for him to feel NORMAL and do his best to present himself..it is not an offical interview it is just to get his resume to the business he is hoping to work for..
ok enough for now..
gotta love those ER visit until late in the night..did do a number on our 13 year old...he was a nervous wreck.. Now glad that daddy was 3 hours away after surgery or for surgery for that matter...he would have been a mess the whole time. God works in mysterious ways..
take care
sheree
thanks for the tricks for the throwing up we will try it
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Hi Sheree: So glad Don went with his gut feeling & you guys had the docs give the ole once over. Better safe than sorry I always say (there I go again with the sayings!).
Putting out good thoughts to Don this morning (Friday the 13th was always a lucky day for me !)
Best wishes, Nancy
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I'll pray that everything goes well.
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Good thoughts with Don and You,
Flier58
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Goodmorning Sheree & Don: Hoping the 'physical' post op symptoms are continuing to calm down for you Don. As for having a job interview, WHEW !! I couldn't imagine going through that at this point in your recovery, hats off to you (regardless of the outcome !! but hoping all went well). I'm sure you'll be resting well today after that - mental strain is just as taxing as the physical, & you've had your share of both.
Well, hope you guys have a 'peaceful' & enjoyable weekend. Remember to take it easy, you deserve it.
Good thoughts always, Nancy
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hello all
well don did a little of research on the meds the ER gave him to take and low and behold the med for not feeling sick does not mix well with the dilantin...hmmm so is one knocking out the other...a call to the neuro surgeon is in order. As well as to see if they got his reports sent to them friday late in the day for second opinion review...
they didnt seem in too much of a hurry to see those tests. Don is a bit upset with the non chalant way the surgeons have taken him on now...as though they did their part and actually went above and beyond and saved his life and now is just deal with it man...attitude.
Don was feeling really off today..tired but he is convinced napping is DOING HIM IN.. he has asked me to ask if you all feel the same way.....
DOES NAPPING MAKE YOU FEEL MORE TIRED and run down? I think that napping is the way the body can heal...he feels that after he naps that he is feeling worse and more run down... he thinks if he stays awake all day then he will sleep better at night and not feel so bad all day...well today was not a good example of that..he was feeling sick to his stomach most of the day. he doesn enjoy eating food at all anymore..between choking and not tasting it like he use to...should be losing weight more rapidly than he is.. I did buy some yogurt smoothies for him to eat immediatly of awakening so he doesnt get sooo hungry that he eats too fast and the wrong thing to end up choking on.. the interview went well...He is one SMART guy and really someone they could use so we are looking for the next step of them calling him in for a more formal interview and he will be more down the road to recovery. He is what ummm 5.5 weeks out from the initial surgery...WOW seems like he is not that far out...I guess all the things that went wrong slowed things down a bit more...
ok one more thing...he has another question...
WHAT TYPE OF PHYSICAL THERAPY DO YOU HAVE FOR HIM TO WORK ON AT HOME FOR BALANCE?? He is very frustrated with the physical therapist in Dothan (you know the thirty min drive away) and said that he will not be travelling that far to see them especially if they dont call to set things up wtih him...uugh so I suggested to at least pick your brains of those that did do some excercises at home to have some things to work on his own... thank you for your help for him
He got out and helped in the yard yesterday when I was planting his garden (he couldnt just watch and order me around) so he was really tired this am had a hard time getting out of bed... baby steps is hard for a man to do...or at least my man... lol
got the garden planted and we went into a wicked storm and tornado watch that the thing almost flooded only had one plant out of the whole bunch that floated up and had to be re planted... wahooo.
he will have a great project once that begins to grow...
take care until next time
sheree
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Goodmorning Sheree & Don: You're right with the yogurt - I find soft foods the best (I miss tasting food too - except I can taste veggies & fruit - not my favorites but I geuss the universe knew it was time to stop all the chocoloate, steaks, etc !!). I eat a banana in the morning, soups are nice, ice cream (though I don't taste it so much, sherbets..). Okay, for exercises: Stand with feet apart, close your eyes, & slowly turn your head from side to side, do this several times, then do it with head slowly moving up & down, as you get better bring your feet closer together a little at a time). Make sure you have something to hold on to quickly in case you lose your balance ! My balance therapists felt this was one of the important ones to do since I wasn't real compliant !! After he gets real good at this, do it with the feet together, one foot slightly ahead of the other, then switching feet so the opposite foot is ahead of the other with feet together.
I would expect Don you're going to feel tired & worn out for awhile, just accept it boss, that's an order ! Your body NEEDS THE RESTS !!! - IT DOES A BODY GOOD !!
I always felt a little beat after a nap, but better for having taken one. You may be 5 1/2 weeks post surgery, but you're only what, 2-3 weeks at home ?? Not that long a time by 'brain surgery' standards !!
Gotta go! good luck , oh, great news on the interview ! Nancy
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Hi and glad the interview was positive. I saved all my sheets of exercises I received each week when I went for physical therapy. I would be happy to copy them and send to you. The exercise Nancyann mentioned is one of many I was given to perform, everyday mind you, and also at night without lights. A little depressing as I wanted to be able to get back to doing the things I did before surgery and performing these mindless exercises kept reminding me of what I went through. If not for those exercises and my dilligence I would not be doing what I did before surgery. I now teach yoga classes and yes, naps do help. Sometimes just closing my eyes for 5-10 minutes even helped (blocked the stimulation overload) allowing my brain a rest when I knew I couldn't nap. Doing this with earplug in made it more restfull as noise is another stimulation overload for my brain.
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hI Sherree
I could not get through the day without a daily nap for about 5 or 6 months. There really isn't anything the surgeons can do post op. I was also very frustrated when I had my stitches removed and the Dr said " see you in about 2 months" I think the longer you fight the recovery symptoms, the longer the symptoms last. You really have to listen to your body. As far as the Vestibular exercises go, I have a 2"x4" 8ft long wooden beam in my living room that I walk up backwards and forwards, you can make it harder by crossing your arms across your chest and also by finding a focal point and slowly moving your head up and down not taking your eyes off the focal point as you walk. [ This is a little hard at first ] Also take a marker and write a large letter on a post it. Hold the post it and move it up and down, following it with your eyes, do the same thing side to side. Take that same post it and stick it on a wall or door at eye level. Keeping your eyes on the letter move your head up and down and side to side, about 25 repetitions for each. Hold your thumb at eye level in front of your face about 12" in front for your face. Slowly move thumb towards eyes about 6" in, you
will feel your eyes cross. Slowly pull the thumb away from you. The thumb must stay in focus the whole time. I also put music on and dance, I probably look ridiculous but what the heck. Remember vestibular ex make you feel very dizzy, I usually do them every other day.
Hope some of this helps
Lainie.
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Hey, all, Don here.
Before I start my rambling I wanted to personally thank each and every one of you for your kind words, advice, thoughts and prayers. You have all been such an inspiration to me and have helped Sheree more than you will ever know. I am so thankful to have found this site and been able to have such wonderful people in my life.
I know Sheree has been updating everyone, so I will not re-hash all my ailments. Things are so-so for me right now.....just cannot seem to get over that hump. I have some good days and some bad, but overall I do know I am improving. Just wish I could fast-forward and see myself a year from now. I am slowly coming to grips with the fact I may not ever be the "same" Don I used to be. I am not nearly as quick (cognitively speaking) as I used to be and find it difficult to deal with my inability to express myself the way I used to. I am hoping and praying that comes back one day, but understand at the same time that God may have some other kind of job or lifestyle planned for me.
A few questions for you further along on this journey: anyone have a "tink" sound in their AN ear now, and does it fade with time? Will I ever stop being so emotional? Why is the sky blue? (just kidding!)
Anyhow, I am done for now. Hope everyone has a great day, and again, thanks for all your help!
Don
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Hi there Don...
Great to have you back on the computer...progress indeed! They may have removed your AN but thankfully they left your sense of humour intact!
Best regards to yourself and Sheree for an ultimate full recovery.
Derek
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Don,
WOW! Excuse me, I just fell off my chair. Let me pick myself up off the floor! I am so glad to see YOU responding (no offense Sheree ;) it was comforting hearing from you in the beginning, but now it's great you are back Don. The fact you are on the computer using your eyes, fingers and brain to type, look and think is in itself forward progress in a very big way. I do understand the impatience to get back to where you were BT (before tumor), but glad you are at least considering allowing yourself to accept the new you. You know, I used to be afraid to resolve myself to think I will never be the same as if thinking this would actually make it so, but by doing just that I began to relax. When I became comfortable with the new me, it was then that I came up with better ways to refine my balance, better ways to live with SSD, and now funnier ways to laugh at my imperfections. To think I was a balanced perfectionist BT was delusional thinking on my part. I have always been dizzy, now more people see it than ever before! Enjoy the "new" you now as this too will pass as time heals all wounds. Remember, you might have days like I did, one step forward, two back then plateu. I am now in forward motion and you will be there too! Thanks again for your service to all of us, I bow to your spirit.
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Well , HELLLLLLOOOOOOO DON!!!! Glad you're back with us. No one is expecting you to get over the 'hump' yet, just you !! Remember, it hasn't been that long ago that you had surgery. I'm ten months out (today as a matter of fact), much better than I was at the time out you are, & I know I still have a ways to go, but I'm getting there, slowly but surely (What's that word again ?, oh yeah, PATIENCE my friend, patience). You'll see so much more that life has to offer with patience on your side, you won't consider it a hindrance but a blessing.
Well, my friend, give Sheree a hug (you've got one special woman there), & keep a peaceful heart (the journey is far from over), Nancy
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Rob7
I've been following the thread. I'm amazed at the spirit and toughness of you, your wife and family. I pray for your recovery... Huuah...
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Hi Don,
So happy to see that you are doing well enough to be back on the computer. The road to recovery is long, but you will make progress. It's not unusual to feel very emotional after going through all of this. I found myself getting sad all of sudden in the beginning. Those times are few are far between now. I'm 19 months post-surgery. You are lucky to have such a supportive wife. That also helps the recovery. Looking forward to following your continued progress.
Jean
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Hey, all!
Thanks for the comments, and it's good to hear from everyone again. Things are going Ok here. I am finally getting used to the slower life. I got up this AM and laid in my hammock in the back yard for a few hours and, get this......FINISHED A BOOK! I have not had any time at all to read over the past few years, but happened to pick up a book Sheree set on my dresser and read it all the way through. For me to finish a book in two days is unbelievable. Glad I can finally relax and enjoy some things in life.
Sheree called the surgeon's office AGAIN about all my nausea and vomiting issues. They finally got tired of her persistence and gave me an appt next Tuesday. Hopefully it will be worth the drive and they can figure out this coughing/vomiting, ETC......
Anyhow, that is all from here. Hope you all have a wonderful weekend wherever you happen to be!
Regards,
Don
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Hi Don, Wow, to read a book is a very big deal! I remember it myself. I felt like my world was finally getting back to normal. Until my rdiosurgery I used to read at least 2 books a week but then I went a whole year without reading. I was too tired, couldn't concentrate and felt dizzy when I attempted it. It's great that you can use the computer because that was also a problem for me, so good for you. This being said I still suffer from nausea and I am 2 1/2 years post surg. I use my armbands, drink liquids, anything with calories (slimfast is fine, it has calories and is a meal replacement and it tastes good...at least it gives me some calories.) Staying hydrated is extremely important because it helps to keep the body in balance and dehydration will make you nauseous. I know you want to look to your life one year from now, but trust me, this is a journey. It took me a very long time to realize that I was never going to be the same "me" again and once I got real about that and accepted my situation, i actually started feeling better. Instead of fighting the lethargy, I lay down and rest and instead of always saying "yes" to everyone and evrything, I now give myself the gift of saying "no." And I can tell you that my life has turned around in just four months. I feel like a new woman. I still have many limitations but I deal with them in an "as needed" basis. When I can no longer shop, I go home, when I don't feel like cooking, we get take-out adnd wehn my kids aske me to do something I tell them I will but always with the caveat that bcause of my physical limitations, I may have to say no at the last minute. And lastly, don't feel guilty. This is the new you.
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Don,
The sky is blue because of the Raman shift of nitrogen molecules (symmetric stretching of N2 by infrared heat) in the atmosphere. Glad to see you back! Your stry has been an inspiration to our family. Hang in there, it only gets better.
God Bless you and Sheree,
Steve
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Wow Don,
glad you're back Sheree is some woman. bless you both. Your typing skills seem pretty good for a guy just 5 weeks post op. did you type all that yourself. pretty clear mind too, more than I was expecting I will feel so soon after. people keep sending me books to read during my recovery. I thought I problably wouldnt be able to read glad to know I just may be able to do it. keep up the good work. I'm thinking I may need to buy a hammock. God bless you both and continued success in your recuperation.
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Hi Don and Sheree,
God to see that Don is doing better. I'm sure it's only the beginning of the full recovery.
Flier58
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So Don, my question is: HOW DO YOU LAY IN A HAMMOCK WITHOUT GETTING DIZZY ????? I love hammocks, but just the thought of one now makes me dizzy !!!
Glad you're taking in eas(ier); one of the jokes my friend had was when I bought 2 books to take to the hopsital, thought it wouldn't be enough & got another one, for a long time he kept saying, " So Nance, have you finished the books yet, do you need more ?" I didn't realize what a time I'd have immediately post op let alone the months following !!! Glad you're doing better, hope the nausea/vomiting subside soon. You & Sheree have a wonderful weekend too. I'm finally going to start exercising again, I'm feeling the burn.
Always good thoughts, keep a peaceful heart my friend, Nancy
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Don and Sheree,
Boy have you two had a time of it! I've been off-line due to a nasty bout of pneumonia which I picked up in Florida of all places--totally messed up my month long vacation--so I'm catching up on all the threads I can. This thread is almost as long as the Good Morning thread!
Don, I am so glad you are making progress despite your complications. Just remember to take those baby steps one day at a time.
As far as the balance issue goes, I found that the best therapy is walking. It's Springtime now and if you can get outdoors and enjoy the weather, it really is a mood-lifter. My favorite balance re-trainer is walking while doing head turns--it's called the "Bobble-head Strut" and if you are walking by yourself in a park or at the gym, folks think you are totally nutty or a tourist, but believe me it really works.
Concentrate on finding an object at about 45 degrees off to port and starboard and target it--that is make sure to re-focus on a tree or building, or if you are at the gym, a piece of equipment while on the treadmill. The treadmill is a great piece of PT equipment and a great investment if you have the $$ and the space. Plus it gives you something to hold on to while yer a'struttin'. I've found setting the incline a bit is really challenging.
What we have after AN surgery is a broken gyroscope--the mechanism of the semicircular canals of the inner ear send signals to the brain to let us know where "down" is. When this signal is interrupted i.e. balance nerve severed, gravity is no longer our friend. It's amazing how the brain can be forced into faking it! It really does take work, however. After spending the past 2 months basically in bed, my balance is terrible right now--it truely is a matter of "use it or lose it."
Anyhow that's my shpiel. It's really great to have you aboard this forum--it keeps it green for the rest of us and lets us know that we can make progress post-op and have a life after AN. Keep us posted.
Be Well,
Capt Deb 8)
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Hello Don,
It is wonderful to see you back on. Some of those talking books are good when you don't feel like reading or can't. I'm sure you are covering everything and Sheree has been so good. (for you and us, posting)
I'm not the same person I was before my AN but, I'm trying to look at the positive side of how it makes me view life. Going through the bad part that you are experiencing just to get to that point really gives a new perspective. No words can express what you went through and are now. We are here for you.
I admire you and I'm glad so many people could answer questions for Sheree. I only had CK but, have my limitations with this AN situation. I'm out five months now and my AN touches the 8th C. nerve. We understand as, we are all in this together.
Give Sheree hugs from all of us.
Take the best of care ever................Palace
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Hey, all!
A few comments: Stevey, WOW! I cannot quite comprehend everything you said, but I am sure my 8 yr old can as he LOVES space....anyhow, thanks! Nancy, I don't get dizzy as I make SURE I am stationary. Even a slight gust of wind makes me put a foot down for while and re-focus. Deb, AWWW! Here is a hug for you! I am so sorry to hear about your pneumonia! I wish it had not ruined your vacation! Glad to hear you are getting better. Flier, thanks for the comments and encouragement...I need it. If I missed anyone I am sorry.
Well, I went back to see the doc yesterday and he adjusted my shunt to drain LESS fluid off the brain and increase the cerebral pressure. He also gave me some antibiotics that should help my stomach pain. I was not overly optimistic, but seem to have improved 100% from the previous day. By the time we got home yesterday I was feeling much stronger and was not nearly as dizzy as I was before. Nearly 24 hours later I am feeling better than I have in weeks. I need to be cautious now not to overdo it today and jack myself up all over again.
Well, that is about all for now. A few things I have learned from all this: I could not have done this alone....thanks to Sheree and all of you. A pair of earplugs lasts twice as long as they used to. Make sure the sink is empty in case I forget to shut the water off...AGAIN. Always check my zipper after coming out of the bathroom (don't ask!).
I hope everyone has a great day. Thanks again for all your advice and encouragement.
Don
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Hmmmm....thinking hard. This post is 11 pages, maybe 12 when I get done, but wondering what the page count in responses to one subject is? I know the longest story in existence comes from AN Community, I believe it's "Goooooood Morning Vietnam"....no that's from the movie, but a Good Morning I'm sure. Maybe AN Newbie is a first and if so, congratulations Don? Not that you want to be patted on the back for any of this, but glad to read you are feeling much better after recent doctor visit.
I'm sure Phyl will chime in here. ;D
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I chimed in... Good Morning thread in AN Community is now up to 123 pgs... :o
Don, you rawk!!!!! I'm so thrilled you are hanging in there and onward and upward to a speedy recovery! Huggles to you and Sheree!
Phyl
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Hey Don: SOUNDING & DOING BETTER & BETTER. Way to go my friend. Glad you know to TAKE IT EASY, no marathons yet, okay? Big hug to Sheree. All the best my friend, Nancy
ps: still can't figure out how you stay 'stationary' in a hammock, is it a military secret ? lol
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Hey, Don:
Its great to see you posting. It seems that your recovery is progressing nicely (finally) and I'm so pleased to learn that. You've been through a lot and so has your super-supportive wife, Sheree. I have a wife like that, whom I cherish. She almost single-handedly helped me through the surgery and the initial recuperation period. I can't imagine doing that alone, although some have, and actually done well. God bless them all.
You seem to have a handle on your condition and don't need to be told not to overdo it..so I won't. ;)
I join the many other AN patients on this board that want to encourage, support and pray for both you and Sheree.
I think you'll be fine. Remember, Time Heals. It really does.
Jim
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Hi Sheree and Don:
I am so glad that things are finally going the right way for you both. Life does go on, perhaps a little slower than we would like sometimes. You both deserve a huge pat on the back and I am soooooooooooo glad you have eachother. You are an amazing team!!
Kathy
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HEY SHEREE HERE...i know you all like to hear from Don since he is apart of you guys....but I miss posting too... lol
wow is all I can say about the good morning thread...that is some posting...I was impressed for dons also and am still daily on the hits it gets even though the postings are not too many...as long as we know you all care and are interested in how he is progressing...hey if there is anything you particularly want to know about his progress you will learn to ASK ME!!! He definately has a tendency to down play the whole enchilada... the cipro is for his stomach and if that doesnt take care of the pain then they are going to probably go back in and replace the cathater into his heart instead of his belly. he is not too happy about going back under but will to get rid of the pain. the ent doc told us that the nerve 9 and 10 are very angry and maybe not going to come back at all but the bad news is this....it will most likely take TIME (oh that word) like 6 to 12 months to know anything if at all THEN and only then will it be re thought for some surgery to fix it...OH YEAH THE GOOD NEWS...
no more DILANTIN... ;D I cant believe he didnt tell you all that...see ask me! Well hopefully after this week of tapering off then next week of one pill to NONE....he can drive again. (after he retakes the test to get his license...expired on his birthday) he is still whobbly but doing better and impressively enough balancing on that silly hammock..I wish i knew how to post pictures on this site then I would post one of him in his hammock...anyway enough from me... better get back to my work..oh just another thing to add to my plate..hey plug for me...wanna buy anything in Alabama or anywhere else..i am your girl... ;) CIAO...sheree
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Yes! We need a picture of Don!!! Message me and I'll either post it for you or give you instructions!
Capt Deb 8)
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Hi Don: Just checking in, hoping you're recovery is continuing in a positive mode. Always thinking good thoughts for you. By the way, I'm reading Nelson DeMille's book 'Up Country', I love the way he writes, another war veteran, like you. My favorite of his (oldie but goodie) was 'The Charm School'. Take care, & always a hug to Sheree (your better half !) Nancy
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Where's MY hug, Nancy??? :'(
Recovery is going VERY WELL now. I have walked three times and did some light yard-work outside. I am feeling much stronger and seem to be finding the right words for things more often, though not always. I think the shunt adjustment combined with my Dilantin (HATE THAT STUFF!) reduction is helping. I know I have a ways to go, but I am certainly feeling better these past four-five days. Now if I can just stop leaving my wallet in my shorts, the water off and my zipper up I will be doing great.
Hope all is well in FL!
Take care,
Don
P.S. *HUG*!!!
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OKAY, OKAY: GROUP HUGS ALL AROUND !!!! Glad to hear you're doing better & better. Remember "time is on our side, yes it is"(Rolling Stones)., oh, & 'a rolling stone gathers no moss' (this is known as loose association in the psychiatric world!). I'm still struggling with the lethargy, lately seems to be worse because workload has doubled - I'm going to be treating myself to Pilates Reformer classes starting next week !!!, hope it gets the energy flowing. Glad you're FINALLY being tapered off the Dilantin & the shunt adjustment was made. Okay my friend, take care "Hugs to you & Sheree". Keep a peaceful heart, your friend, Nancy
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Hey, all!,
Well, I finally managed to push myself to far and overdo it. I kept thinking I was fine doing a little yard-work and tinkering around the house. I got a little tired and napped that afternoon, but woke up feeling terrible. That was Thursday, and I JUST now started feeling normal again. I was SO sick on Friday....felt like the first week out of the hospital. Saturday was better (after a LONG nap), and yesterday I was almost normal again. Just cannot understand how I went from feeling so capable and full of energy to being so sick again. I know now NOT to push myself and need to continue to recuperate at a slower pace (UGH!).
Overall, however, I am doing a LOT better than I was the past month. I am walking much better now and my balance gets better with each passing day. The nerve in my throat still bothers me and I have choked pretty bad a few times, but it is better than it was after surgery. Also, I have been able to pick up some slack for Sheree and am helping do dishes (sometimes) and help with lunches and all the kids' stuff.
Well, that is about all from here. Hope everyone is doing well.
Take Care!
Don
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Hey Don: I don't want to say 'WE TOLD YOU SO', but I have to !! Glad you were able to recoup from that Thursday work out you gave yourself. (hey Sheree: men, they just don't listen sometimes, do they). Hope all is well buddy, you are now officially in the 'postie' mode !!!
Always good thoughts to you & Sheree, Nancy
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Hell
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Hell-o to you too D. Looks like you got mixed up & stopped your post. I see it was your first one. I got mixed up too. Log on my friend, Nancy