ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: cindyj on September 30, 2010, 02:02:26 pm
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Hi, all! Just heard from Sue's son, Jason. He reports that Sue is in recovery and the surgery went well. As we know the next few days don't count ;), but I'll pass on info as I hear it from him.
I know she is very grateful to all of you here for the support she has received!
Cindy
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Cindy ~
Prayers answered, again. This is really superb news...thanks for sharing it!
Jim
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Great news! Good to hear....thanks for the update.
tod
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Awesome news again! Please keep us updated, I was thinking of her all day today.
Best wishes for a speedy recovery coming her way!
Susan
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Thanks for the update, Cindy.
Prayers going out to Sue for a swift, uneventful recovery.
She'll be back here as a postie before we know it.
Jan
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What great news! Thanks for the update, Cindy!
Hope those first few days go by quickly so she'll be back on her feet in no time!
Lori
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Thank you for the update, great to hear she is doing well.
Liz
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That's the kind of news we like to hear. Thanks for letting us know. Many prayers continue for the next few days, especially.
Clarice
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Yeah! So glad everything went well....the next couple of weeks are slow but the hardest part is done! Prayers are with you....michelle d.
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Well, things were moving along ok for Sue, til yesterday. Her son said that she had been acting "out of it" but had been off the morphine for a couple of days. They found her walking down the hall alone (sleepwalking, they assumed). She apparently then became very agitated and was put back in ICU. The doctor told Jason this morning that he's seen this before and that it's possibly a meningitis infection? But not positive at this point. So, please keep her in your thoughts and prayers. I'll let you know when I hear other news.
Thanks,
Cindy
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Thanks cindy, I will keep her in my thoughts, but I know I was quite agitated from the steriods I was on so it could be related to that for sure. Hopefully they have been able to figure out what happened.
Liz
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Cindy ~
Another round of thanks and appreciation for providing us with an update on Sue. I'm sorry that it has some downbeat news but I trust that the underlying cause of Sues' sleepwalking/agitation will quickly be found and positively addressed and that her recovery can keep moving forward. She'll be in my thoughts and prayers and the prayers of many others, I'm sure.
Jim
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Continued prayers and Blessings for fast healing going out to dear GrammaSuby, from Oregon. Thanks cindy for the update........
Jackie
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Cindy, thanks for letting us know about Sue. Hoping and praying this is a result of steroids or medication and not infection.
Renewed prayers for Sue.
Clarice
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Ok, things are back on the right path to recovery for Sue now! No infection, thankfully. It may have been the steroids, Liz - we all know how awful they are, but it sounded way beyond the "normal" accounts we've had here. Perhaps she had a particularly bad experience due to interaction w/ other meds she has to take or some strange reaction with her chemistry? At any rate, they are talking of her coming home by tomorrow - very good sign for sure!
Cindy
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Whew, that's a relief.
Prayers continue.
Clarice
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Great news! A reaction sounds like a totally rational explanation.
Thank you again for the updates.
Liz
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Thanks Cindy for the updates, and so glad to hear it isn't meningitis.
I was impressed though that she was walking the hall and not falling over :o so her balance seems to be doing ok!
Well wishes continue,
Maureen
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Just got to talk to Sue herself on the phone a bit ago...she sounded good, but will be in the hospital for 3 more days. Turns out she does have an infection, though not meningitis. They tell her it's an infection related to/due to pneumonia (?) She must stay to complete the course of antibiotics. Has been very rough due to the infection - she had to be restrained/strapped into the bed as she was so out of it (dementia type stuff, apparently). Has had to endure many pokes and prods, including shots in the stomach :-[
Other than that, the AN related issues are some facial weakness and the normal things that come along with that. The docs tell her it is temporary so, I assume the facial nerve was only stressed. She is relying on a walker at the moment, but can get around.
I will let her give you a full report when she returns to the forum...hopefully won't be too long for her.
Cindy
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Thanks for that update, Cindy. I'm glad to learn that Sue is going to be O.K. and that her recovery seems to be back on track.
Jim
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Thanks for the update, I've been thinking of her lately! I will continue to pray and send only good thoughts her way.
Susan
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Hi all :) finally home this am 8) thiugh I was bracing for the worst
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I'm glad to read that you are home! I hope you are feeling well and on the upturn.
-Tod
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:)I'm back today though very different :'( :'. I'm sorry to say at the moment not for the better. I cant say Anymore yet cuz of how emotional i am getting right now just thinking about it :'( this is all i can deal w/ today :( Thanks to cindyj for a lifeline & to ALL of your prayers Sue
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Hang in there, Sue, and take things day by day.
Recovery takes time and things will get better.
Hugs,
Jan
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Sue,
You are home and that is good so just take it easy. Do yo have someone who can help you and wait on you hand and foot?
One day at a time, things will hopefully get better.' Fluids if you have no appetite are important. Eat what sounds good, even it if it ice cream shakes, jello, whatever.
Just sleep/rest/as much as possible, and walk as well as you can. Peaceful music on CD's is also helpful or books on tape to take your mind off of things.
It is crucial to not to try to do anything, especially bending over, for now. Just let yourself be, OK?
Peaceful thoughts going your way,
Maureen
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Welcome back, Sue. :)
Jim
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Welcome back, Sue! Got your message...will talk to you soon! Walk and nap, nap and walk, nap, nap, walk :) Hang in there!
cindy
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Hi Sue,
Please know that I am thinking about you, try to rest as much as possible especially since you have just come home. This is a very emotional journey and you need to let yourself feel it. I was also very emotional for many months after my surgery, what you are going through is completely normal.
hang in there and remember we are here for you,
Liz
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feelling better/ did have meningitis and pneumonia / lost 5 days time, woke up worried I had missed surgery & desperate to tell the Dr's I might miss surgery LOL/ tied down for 2 days then sent to private room on neuro floor/ still trying to put time in order with help of family, friends who visited on my journey through madness and back/ truly horrifying /still need your prayers
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Wow,
Prayers are definitely continuing. Not only recovering from AN surgery, but meningitis and pneumonia to boot. How scary for you.
Rest easy now,
Maureen
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Hi Sue,
I hope you are well on the mend now that you are home. Dr's Mattox and Olson also did my surgery in December '09. I was in the hospital for 9 days instead of the 3-4 they said was average. I had a hard time with waking up from surgery, plus shallow and congested breathing.
Allison
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Hi, Sue. I am new to the group but am not that far away from surgery so I remember very vividly how you are feeling. It is a very emotional time. It was way more emotional than I even anticipated. I second what everyone else said, try not to worry or stress...just relax and allow yourself to heal.
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:)thanks all for your prayers and thoughts, all so needed! Yesterday my stitches /staples came out :) I am better by far now. My 5 day planned stay turned into a 12 day unplanned nightmare as you can guess. I was put to sleep Thurs morn & "woke up" Mon afternoon w/ no memory of even having had the surgery. My son and his wife and 2 friends were by my side in ICU. I was groggy and had difficulty processing what was being said. My friends had brought a chocolate milkshake for me which was my major focus for the next few minutes until it was gone( I had nothing to eat or drink since surgery ). That night I panicked & suddenly realized that I had or would miss my AN surgery and that I had to let my Dr's know I would miss it. It was awhile before I figured out that I was in the hospital because I already had surgery...weird how that happened.
While I was "napping" I had my AN removed, became infected w/ meningitis and pneumonia and had to be restrained after going into distress mode from all that was happening to my body, apparently I smacked a few interns in the process :o After another day in ICU and when I could say with certainty that it was 2010 and NOT 2002 I was moved to a private room on the neuro-surgical floor. \
For the next 5 days I gradually regained my breath and strength while completing a 7 day course of 2 IV antibiotics @ 8 hrs for 2 hrs at a time(w/ 1 being at 2am, so little hope of sleep). My IV lines had to be changed so often that a team of nurses whose only job is to put in IVs when regular nurses can not had to come up and do their stuff. I was given 1-2 shots a day in my stomach for blood thinners & if needeed for insulin.
Having lost so much time, it was hard for me to get a grip on all that was happening so I told one of the interns,DR Miller, that I was going to leave AMA, refusing to finish my antibiotics. After patiently listening to my fears etc he said "You know you don't have to stay in this room all day, you can walk around the hosp campus or go to Cox Hall ( a food court ) for a meal as long as you are back in time for your next round of antibiotics" Well that was all I needed. I no longer felt trapped and knew I could hang in for a few more days.
Now I'm home. I have balance probs, facial paralysis eye difficulties headaches & fatigue but @ day they get better and I can let a little more joy back into my life :)
I am truly grateful to all of you,
thanks, Sue ;)
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Wow Sue...That was some trip....Glad to hear you are at home and on the mend..take it easy ...rest...and try not to run over anyone while you are trying to walk and keep your balance...i remember doing everything so very fast..my sister was running to keep up w/ me when we went to appointments.. and my mom would stand in front of me when going down the stairs.One day.One Hour at a time.
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Susan,
It is so great to hear from you and see that you are home and getting better everyday. I thought of you so often after your first post saying things weren't well with you. I've been praying and thinking about you everyday. I'm glad to hear you are doing better and made it through everything. I know this is not what you bargained for when signing up for all of this. Things will get better and you are obviously a strong woman, hang in there.
I will continue to keep you in my prayers and think of you often. I hope you have someone with you to help you out.
Take care of yourself and don't over do it. Rest, rest, rest, walk when you can, and be sure to eat if possible. I lived on jello, fruit, and sprite for my first month after surgery. That was all I could handle.
Hugs to you ;)
Susan
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Sue,
So glad to hear that you are feeling a little better every day. That was definitely the weirdest post op course I have read about.
Talk about scary for your loved ones, and you kind of "slept" through it all.
Keep breathing (did you go home with the pretty ball thingy?-incentive spirometer)
I don't know why they call it that. It's not like it's your begging to use the thing!
Anyway, it is hard getting back to "normal" and you have the post op pneumonia, meningitis, so your fatigue is probably going to last longer.
So breathe deep, sleep, rest,walk- you know the routine :)
Maureen
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Weepy day today, missing my mom who would be at my side now, in spirit though I know (she died this yr in the recovery room). Just realized that I cry w/ only half a face :( Outside is so perfect. I'm going out to soak up a little sun for all who can't at the moment.
Thank you all who care and leave comments for me & are such a help in my recovery, I treasure them all.
I'll be glad when I can pass it on for others.:) Susan
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Sue,
You have been through a tough surgery with some hiccups, but you are on your way to recovery now! Thanks for sharing your experiences with us. We're here for you this forum has been my saving grace and I know I would be in a different place mentally if I weren't here. Love this AN family ;)
Take care,
Liz
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Susan .....
After a particularly rocky post-op time, you sound like you are on the right track now ..... thank goodness ..... enough already.
Rest, rest, and walk as you are able (safely, of course). The walking will speed your recovery, but listen to your body and rest as needed.
Thoughts and prayers.
Clarice
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Sue -
I'm sorry you've had such a rough time of it but I'm hopeful that the worst is now over and that you'll make progress each and every day.
It's normal for some days to be one step forward and two steps back. Listen to your body and do what it tells you to do.
Recovery can be very frustrating, but I'm confident you'll get through this.
Prayers and hugs,
Jan
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:) Hi all,
its been 2 wks since I got out of the hospital. I'm doing okay now, just struggling w/ my dry eye, balance and facial paralysis and headaches when I get up too fast. I guess the thing that keeps coming up is the 4+ days of lost memory from the time before I went into the OR on Thur morning until when I woke up in ICU Monday afternoon. Even though my family said I was talking at times but usually confused there is nothing I can remember. It really bothers me. Especially not remembering when I was pulling out my IVs and generally not being compliant. I thought I would request my medical records and see how far that gets me.
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Great to hear you are feeling better, hopefully you get to the bottom of your "missing days". I wouldn't worry too much, I can't say for sure but it sounds like your body almost went into some sort of trauma response. Although it could have just been the drugs, to be honest I didn't remember the better part of 2 days while in ICU except for throwing up a lot...for some reason that sticks out in my mind ;)
Thanks for the update!
Liz
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Liz,
I would even take that as a positive :D
Sue
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I'm doing okay now, just struggling w/ my dry eye, balance and facial paralysis and headaches when I get up too fast.
That's all?! Sounds like you are doing better, the baby steps are just taking a little longer for you:) Keep going at it easy, there is NO rush. Gentle walking, gentle everything, and don't forget your breathing exercises!
The other thing about not remembering the four days, maybe someone else will chime in. They probably had you sedated and on so many drugs, what with the meningitis and pneumonia, so it may not be unusual. The important thing is you are here now.
If it would ease your mind to get a copy of your records, go for it.
Continued gentle healing hugs,
Maureen
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Thanks Maureen, you make me feel well cared for :)
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I don't remember much of my nearly 2 months in ICU. I am guessing that resulted from brain trauma, massive complications and medication. The good news - my memory is good now. Take it easy on yourself. FYI GramaSuby, I spent an additional 2 months at the Shepherd Center in Atlanta for rehab.
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What is weird is that Thurs Fri I was in ICU, Sat and Sunday in a regular room before going back to ICU Sun pm Its those 2 days that I was up sitting in a chair (though slumped over my son said when he walked in,( can't believe I didn't fall over onto my head) I recognized my grandchildren's names and was having conversations w/ them. My grandaughter even fed me applesauce while I was sitting in the chair. She took over when my son had to do something. She is 12 and started to cry a little as she fed me so I'm told that I said very seriously, "Don't worry Emma, your applesauce tastes better than your dad's!" SO its not like I was comatose though I was confused, moaning and agitated most of the time. Where the hell were the nurses? Tomorrow I will be requesting my medical records.
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Sorry I'm so fixated on the missing memory part but it is just so strange to not know something that t of my control.
Went up to Elljay for some good ole GA apples today. When I got out in the parking lot I grabbed onto a small shopping cart and as I was walking I could feel myself reeling and wasn't sure I would stay upright. Still getting exploding headaches that usually don't stay long. I'm not used to the funny looks I get when I talk to strangers since only half my face is working. I told my grandkids that I was going to dress up as a Cyclops for Halloween and they laughed, they share my sense of humor. I look forward to these side-effects going their own way.
Sue
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What were you doing up at 2:30 in the morning ;)
I was up in Ellijay and Blueridge last weekend. Didn't get any apples, but passed the orchards and the traffic was backed up a mile or so on that road! Yes, the open spaces can be overwhelming to the vestibular system...worth the wobbliness, though, to get out in the nice fresh air!
Cindy
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hi sue sorry you had such a rough time you sound like you are on the right track now i had my surgery on the 30th also my only complication was my bp (i have fought with this issue for 25 years so i wasn't surprised) i was in neuro icu until monday and then sent home i do not remember arriving at the hospital (actually i do not remember the ride to, arriving at, or checking in to the hospital) weird i remember the doctor initialing my ear prior to surgery and nothing until late friday night i keep trying to remember the things people tell me i said and did but, i am blank you are not alone as far as recovery, you are feeling much the same as i am i have slight headaches (nothing like yours) my vision has improved but, not perfect my eyes get very tired and so do i my face is close to normal my taste is off and i do not like anything i eat or drink my balance is off - again, i expected that and have not used my walker for over a week
i know you have had a rough time but, you are home and recovering hang in there and think positive nancy from clearwater
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Hi all,
For the most part I'm on a steady recovery path w/ facial paralysis slooowly coming back and my balance and walking is much improved. What concerns me is that I still get headaches that explode suddenly just after I get up from sitting. Yesterday I almost passed out w/ the pain. The other problem is the weird feeling I get when I'm walking inside a store or other indoor places. I think it is a combo of vertigo and dizziness. Update from both surgeons was positive. I need to return to the neuro surgeons in 3 wks and the ENTs in 6mos.
Be good everyone and have a great thanksgiving! :)
Susan
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Susan .....
Glad you are continuing the upward path to recovery.
Re: the exploding headaches ..... with the "I am not a doctor" reminder, it could be from blood pressure changes from sitting to standing ..... but you should definitely let your doctor know that it is happening. Have you tried changing positions very slowly and it still happens?
Re: the weird feeling in a store ..... that may never totally go away. Almost three years later, I still am very disoriented when I look down a long aisle in the grocery store. This is a vestibular phenomenon due to lack of input from your vestibular nerve on the AN side. Ideally, if you could walk up and down the aisles while turning your head from side to side enough times, it would help train your brain to the one-sided input. Second (and better) idea is to walk up and down a long hallway in your home, turning your head from side to side and then again turning your head way up and way down. At first you will need to steady yourself against the walls, but it does get better.
By the way, this is what we call wonkyhead! :o
Clarice
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Susan .....
Glad you are continuing the upward path to recovery.
Re: the exploding headaches ..... with the "I am not a doctor" reminder, it could be from blood pressure changes from sitting to standing ..... but you should definitely let your doctor know that it is happening. Have you tried changing positions very slowly and it still happens?
Re: the weird feeling in a store ..... that may never totally go away. Almost three years later, I still am very disoriented when I look down a long aisle in the grocery store. This is a vestibular phenomenon due to lack of input from your vestibular nerve on the AN side. Ideally, if you could walk up and down the aisles while turning your head from side to side enough times, it would help train your brain to the one-sided input. Second (and better) idea is to walk up and down a long hallway in your home, turning your head from side to side and then again turning your head way up and way down. At first you will need to steady yourself against the walls, but it does get better.
By the way, this is what we call wonkyhead! :o
Clarice
Hi, Clarice has great advice I just wanted to add the toe to heel is another good one for balance it is amazing how you see yourself progressing. I was always afraid not being a drinker if I was stopped by the police I would have failed that test thank goodness for breath test which would have saved me... There are other exercises to do with your eyes closed you can research them on the computer but just be careful there is nothing in your path to get hurt. Hoping it gets better...
Best Wishes,
Pat
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The other problem is the weird feeling I get when I'm walking inside a store or other indoor places. I think it is a combo of vertigo and dizziness.
Susan -
I had this post op. In my case it went away by about 6 months post op, I believe.
I hope this problem goes away for you, also.
As far as things you can do for your balance, I have some excellent vestibular exercises my neurotologist gave me and they helped a lot with my balance post op. If you PM me your email address, I'd be happy to send them to you.
Jan
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Has anyone had a patch of numbness on their skin not associated w/ an incision? My inner thigh and the front of my thigh almost down to my knee on the same side as my AN is completely numb. I noticed it in the hospital but keep forgeting to ask my Dr. I guess it could be from the fat graft on my abdomen since its about5 inches long. Just don't know
Sue
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Sue, I doubt it is from your fat graft but somehow nerve related. As it been ever since your surgery? The position you were laying and then with your possibly not moving a lot when you had the problems past surgery. It may come back ok in time but do ask your dr. That was sure a large fat graft incision. Mine are only about an inch as have 2 due to a CSF leak surgery.
Cheryl R
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Today is a good day :) The rain is gently falling w/ the sound of the rain drops hitting the leaves making me feel drowsy. But I do want to say that in every aspect I am healing, even the facial paralysis seems to be improving :) What a difference 7 wks makes!
I did find out that after I was restrained on day 4 that the Dr's thought I might of had a stroke right after surgery. It still bothers me that it took so long for them to figure out something might POSSIBLY be wrong with not being able to feed myself, stay awake, talk in full sentences or know where I was. Hm-mm. It still keeps me up at night. This probably qualifies for the cognitive/emotional issues category under post op. Anyway, time for a nap :)
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Me again :)
I saw my surgeon Tues and he was joined by Dr Millar, one of his resident Dr's. He, Dr Millar, was a godsend while I was at Emory/
He wrote an order for me to wander around campus as long as I returned in time for my next antibiotic treatment. This was a morale booster and helped me to stay instead of leaving AMA. He told me that he was the one who took care of me in recovery so of course I asked him to fill in the blanks for me. He said that I was in a great deal of pain and that he ended up giving me the max of morphine that I could have w/o putting me back on a breathing tube. He is a sweet humble man and i am grateful.
The great news is that I don't need to go back for a year! Dr Millar also said that the facial nerves take a year to totally regenerate so my facial paralysis will take a little longer to go away. Today is a good day :D
Happy Thanksgiving to all!
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Susan ~
Thank God for compassionate, caring doctors! Congratulations - and Happy Thanksgiving. :)
Jim
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Sue,
Glad you got some clarification from your doctors while you were "out to lunch" so to speak ;)
Morphine can do that to you, I guess. Plus all the other stuff. Sounds like they took great care of you.
I asked my doctor, years later, about the facial nerve thing. I just wanted to hear it from HIM. He said he knew the minute he saw what he was dealing with that there was no
hope in saving the nerve. The nerve and all (?) its branches were obliterated. So I felt better, just knowing that that was what had to be done. He did save my life :)
Enjoy your holidays, and continue to keep the pace at YOUR pace OK? (easier said than done, as my mind is whirling with what is coming in the next month :o )
Maureen
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Maureen, you are a great comfort to me! Thanks for the posts :)
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You're welcome ;) Glad I can be of some comfort :)
Maureen
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:) Thank goodness for this forum! I feel kind of guilty for all the posts but it really helps me to have a place to go so I don't have to bother my family.
So, I am doing really well w/ barely a swerve, wonky or desert eye. What lingers is the numb tongue, especially the tip which still has a burnt feeling, barely functioning tastebuds, facial paralysis which is slowly getting better and my eye which is relaxing gradually. The ringing in my ear still annoys me but most of the time I don't notice it. Wondering if that is because its not actually ringing or if I just tune in to it every now and then. Kinda like the tree falling in the forest.
Have a great Christmas all ;)
PS Where did the spell check button go?
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Its been awhile since I've been on and so much has happened. I finally got my medical records from Emory($503 worth). I found the CT scan done while I was "mentally agitated', basically out of my mind, in 4-point restraints and at that point critically ill. What they failed to tell me was that I also had a cyst on my heart! So I went to a cardiologist for a repeat CT & an ultrasound. The ultrasound was normal but the CT showed the cyst to be in my chest AND that I had spots on my liver. After another ultrasound,now on my liver, showed that I have a liver disease called a non-alcoholic fatty liver. Great! Just what I needed! The gastroenterologist then informed me I needed an endoscope because of how bad my heartburn has become. At this rate something else will show up.
The good news is that I have an appointment w/ my ENT for a BAHA. Can hardly wait! My facial paralysis is almost gone & all else is good.
Oh yeah, my records also showed that not all of the tumor was resected. So much more is there, both interesting & scary!
So, be good all!
Sue
PS My new computer has the spell check on it, thank goodness!
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Sue .....
Thanks for the update on what is (and has been) going on in your life. Wish the report could be better. At least you and now your doctors, hopefully, are on top of it. This is further proof that we have to be our own advocates when it comes to healthcare.
Yaaaaay for the facial paralysis being almost gone and yaaaay for the soon to be BAHA. We can celebrate these things!
Prayers continue for accurate diagnoses and treatments for the other issues.
Clarice