ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: badbadbrain67 on January 11, 2010, 10:09:32 pm
-
I was diagnosed with AN in October. Because the tumor was so large, it was blocking the spinal fluid from draining properly. As a result, I had to have
surgery to put a shunt in my brain that drains the spinal fluid into my stomach. A month later (Dec 7), I had the tumor removed. AS a result I have
partial facial paralysis, a numb scalp from three incisions, damaged vocal cords, balance problems, slight headaches and general body weakness.
I was in the hospital for almost three weeks and for the first week and a half I was out of the hospital I was doing fine.
Then one day out of nowhere anxiety consumed my head. I could not catch my breath, I could not sit still and the walls
were closing in on me. The next day I went to urgent care and got some Xanax which helped a lot.
My theory is that the better and more clear headed I get (my head has felt cloudy since the surgery) the more keenly aware I am of the things
that are wrong with me. Although my facial muscles are improving, I can feel the paralysis more than before. I get these itches on my scalp
that I can't scratch because it's numb. I stumble around like a drunk and food comes out of my mouth when I am trying to eat and not choke.
All this can be a bit too much for me but I feel like am being a cry baby. Should I just shut up and bear it or is this a fairly common thing.
I just need to know that I'm not the only one going through this. The feeling of isolation and anxiety can be unbearable at times.
-
Hey BBB67~
I had/have most of what you are describing so you are definitely not alone. Glad that the Xanax is helping! Everyone sees the world differently everyday so it only makes sense that everyone will recover differently - sounds like you have had a rough go of it and it really hasn't been that long. Cut yourself some slack...trust me, it WILL get better! If you would like to PM me your contact info and if you are in the US - I'd be happy to call & chat with you.
K ;D
-
Wow, I'm sorry you're going through this. Welcome to the forum. I haven't had surgery yet, but I've been on this forum for about 4months now, and you are most definitely not alone. There are lots of folks on here who've had large tumours and are coming along very well. Hold on and they'll be through here soon to talk to you and share and give you some positive thoughts to hold onto in your darker moments.
-
You are definitely NOT a cry baby! My goodness that is a lot to deal with.
Like Kaybo said, you are still pretty fresh post op for all you've been through. You need to give it time.
It's baby steps every day- slow steady improvement. More people will chime in. At Least 6-8 weeks.
So concentrate on getting stronger and resting, drinking lots of fluids, and just walking (not the mall if possible!). Balance exercises (WII fit) are VERY popular on this forum, and really do help.
Where abouts do you live?
You will NOT feel isolated after you see the great support here, so hang in there. :)
Maureen
-
I know sensible people who have taken Xanax for anxiety with far less going on, and they were not just 4 weeks out from major brain surgery. Give yourself a break, we are all certainly willing to. Wow, you went through the wringer; you deserve a 3 month vacation with Xanax at every meal. 8)
Now get some rest and take your time recovering. Hibernate for a while. Things will be looking better when spring rolls around.
Steve
-
Wow, what an emotional boost to know I have all this support out there. I have kept a very positive attitude the last few weeks
but it's not always enough. The Xanax and your support should get me through.
Also I have decided to concentrate on the progress I have made and not the progress I want to make.
For example, just a month ago I was a useless lump who could not do ONE thing for himself. Now I make my own meals. bathe myself,
go out for walks and clean up after myself. While I still have a long way to go and still have to deal with a lot of problems, I have
to look at how far I've come in one month. If I look at how far I have to go I can drive myself crazy. It's not always easy when
you are feeling down or anxious, but I think concentrating on what we've all accomplished can go a long way in helping us cope
with these difficult times.
By the way I live in Vegas but I was visiting family in San Diego when I was forced to go to the doctor back in October.
Some vacation huh? Of course I've been stuckhere ever since. At least most of my family lives here or close enough.
-
I just read your post and never think that you are a cry baby and you never have to bare it and toughen up we are all here for you. I too felt the same way in the beginning and my doctor prescribed xanax not just for anxiety he said he was surprised that the surgeons did not put me on this it has to do with the nerves and not an anti-depressant I am also on vicodin for headaches and severe neck pains then at night I have to take ambien just to sleep. I was not one for medication and felt guilty taking all this now I came to terms with it I need it right now and that is okay I think I am strong enough to know eventually there will be a time I can come off of them and right now I am not ready and that is okay too. So if you would like someone to cry with just PM me and do not stress over it just take one day at a time.
Best Wishes,
Pat
-
BBB67,
Glad that we can be of support. You are definitely not alone, and you HAVE come a long way from what your post says. We of course are not prepared for the possible aftermath of this type of surgery.
Some have it easy, others not so.....It IS an emotional roller coaster, along with a physical one.
Many "forumites" regret they had to go to their doc for antidepressants, and the doc is like."Oh yea, sure, it is very common to be depressed (or anxious)." So not a biggie.
At least you are in sunny California through all this.
I am the queen of antidepressants, and xanax, low dose, for my tinnitus so don't feel bad!
You do what you gotta do.
Humor is good medicine too...I had to have my facial nerve cut >:( so I used to joke that the entertainment for the night would be to watch me eat, and talk. Try saying the Peter piper picked a peck of pickled peppers, 10 times really fast with facial paralysis! The kids got a kick out of it.......Things are better now 3.5 years later, but still working on the face.....
Keep taking those baby steps- soon you'll be running! ;)
Maureen
-
BB ~
O.K. if I call you 'B.B.'? Good. I want to welcome you to the ANA site discussion forums and assure you that, while every AN patient has a different experience, some do have struggles and apparently, you're one of those folks. A lot of the issues you're dealing with; balance problems, partial facial paralysis, damaged vocal cords, numb scalp, mild headaches and general body weakness are not unknown to AN surgery patients. Some have all of these, some have a few, some have mild cases, others have severe cases . Some heal quickly, others more slowly. There is no 'standard' and you certainly aren't being a 'crybaby' for feeling somewhat despondent about all of these obstacles to regain your health and a normal life. These are impacting your quality of life and you are being perfectly normal when you want to vent about it. If an AN patient can't vent about his challenges here, where can you? That's what we're here for, among other things.
If you benefit from taking Xanax then you would be foolish not to use it as you need it to curb your anxiety.
Please don't feel isolated. Whatever your living situation, you have a host of friends here, most of whom have or had an acoustic neuroma. We're eager to support you and offer whatever help we can. Check our 'Willing to Talk' thread for the names of folks you can call for advice and support. My best advice is for you to remember that things won't always be this way. They will improve, as many of the people posting here can tell you. Please feel free to post any question or comment you wish. Our members are always willing to respond. That includes me. :)
Jim
-
I find myself reading and re-reading everyone's responses to my posts. For some reason , I find great comfort in that.
Thanks to everyone. I have been doing better since taking the Xanax. I am supposed to take it twice a day but I am
trying to take it only once a day. Days are usually ok but once night rolls around I find I have a harder time dealing with
the anxiety. I do worry that I will get dependent on it. Can anyone out there give me advice or insight from personal
experience? Will I have to wean myself off of it eventually? I decided that there are no stupid questions so you guys
will be hearing a lot more from me. Discovering this site gave my morale a giant boost.
Lots of love to all
-
;) Glad we could help - ask away - that's why we hang around!! ;)
-
BB,
Story about xanax:
I have been on xanax for quite some time for tinnitus control. I know it is an extremely addictive drug and doctors don't like prescribing it.
When I lived in TX my civilian psychiatrist didn't think twice about prescribing it for "anxiety" at the time. Then I found out I had the AN. My husband was stationed in WA and I was home in TX with the kids so they could finish high school. I stayed on it for the duration of my pre and post surgery for "anxiety."
(Went to WA for the surgery, went back to TX for the year following my AN surgery with kids)
Then moved to WA. The nurse practitioner freaked that I was on "xanax" -0.5 mg two times/day. Sent me to psych. Appointments not even available. I basically weaned myself off of it without problems.
I think you run into withdrawal symptoms with high dose xanax (2-3 mg/day).
Anyway, I noticed my tinnitus became screaming in nature. Finally got to the psychiatrist. He tried me on different meds for the tinnitus, and then I mentioned that the xanax worked the best!
So there you have it.
Xanax 0.5 mg two times a day, in Extended release form.
I feel like I could easily stop taking it if I had to.
Low dose should not be a problem. It's when you have to keep increasing the dose to get the same effect. That's the problem.
Hope this helps! Sorry about the rambling.
Maureen
-
Wow, what an emotional boost to know I have all this support out there. I have kept a very positive attitude the last few weeks
but it's not always enough. The Xanax and your support should get me through.
Also I have decided to concentrate on the progress I have made and not the progress I want to make.
For example, just a month ago I was a useless lump who could not do ONE thing for himself. Now I make my own meals. bathe myself,
go out for walks and clean up after myself. While I still have a long way to go and still have to deal with a lot of problems, I have
to look at how far I've come in one month. If I look at how far I have to go I can drive myself crazy. It's not always easy when
you are feeling down or anxious, but I think concentrating on what we've all accomplished can go a long way in helping us cope
with these difficult times.
By the way I live in Vegas but I was visiting family in San Diego when I was forced to go to the doctor back in October.
Some vacation huh? Of course I've been stuckhere ever since. At least most of my family lives here or close enough.
I just wanted to know how you are doing ? Also how have you been sleeping at night I am on Ambien so that I can get a good night sleep everyone is saying that this one is not addictive ? But at this point in our journey we do not need anything else to stress us out in the recovery process and whatever could help is very important in healing.
Best Wishes,
Pat
-
I was perfectly fine until about four weeks out from surgery. Then, everything started to bother me. I couldn't sleep, got hot and cold, and everything around me was a blur. It even bothered me thinking about having a bandage on my head after surgery. Went to the doc. and got some xanax. .5 mg when needed. No anxiety now, calm as a cucumber. Yes it can be addicting, but it takes a long time. My doc didn't think a month or two was any problem at all. I find that one pill a day before bed is all I'm needing. The post from Moe about xanax and tinnitus is interesting, that's the first I've heard of that.
Bryan
-
I have panic attacks and anxiety too which escalated around the anniversary of my surgery. I finally talked to my PCP who referred me to a therapist along with starting me on Klonopin to help both with the anxiety/panic attacks and with my vertigo. The therapy along with the meds have been very helpful to me. I also try to meditate and do relaxation exercises (I started these before my surgery when I was just dealing with vertigo). I think these are very helpful as well.
You are no crybaby. You have been through a lot. Be kind to yourself. You do not always have to put on a good or strong face.
Use medications to help yourself feel better! It took me a year to agree to take Klonopin! I look back and think "Why was I suffering?". I guess I felt it was a sign of surgical failure, that my vertigo didn't go away even though they got the tumor out. I even felt guilty, like it was my fault that I still had vertigo. Now I feel so much better. Don't let your mind get in the way with appropriate treatment (i.e. Xanax, if it helps).
-
I read the subject title and could totally relate. Read some of my earlier posts and you will see how I was affected.
I am much better now but still do take an anti-depressant.
My scalp on top of my head was very itchy (and still time to time is) when my nerve started to recover.
Hugs Michelle ;D
-
Dear Friends,
I am just jumping in here. I am identifying my new panic attacks as of two weeks now. My surgery was Jan 12th. I just retired on Disability on April 1st. I am home living with my 96 year old father and reality is setting in. He can't walk and is incontinent. I have terrible Post Surgical headaches every night that I treat with Motrin and am waiting for them to get better. I have an appointment with my Primary Care on Monday afternoon about the Panic Attacks and Headaches because the docs at the 6 week check up told me the headaches would go away in two weeks but of course they didn't and I knew they wouldn't so I know the neurosurgeon is done with me and my AN. The ENT is basically concerned with fitting me with a BAHA which is not my concern. I want to get rid of my headaches right now. That is my primary concern and possibly the cause of my anxiety attacks because I have a headache every night. I'm exhausted from them. I'm depressed from them. I am taking Cymbalta for Myofascial Pain and Topamax as well but that's not enough for the Post surguical headaches. I didn't have headaches before the surgery. It's so isolating to be in panic. My daughter is now telling me I am being selfish because her friend's brother was hit by a car on Sunday is now on life support and I have a lot to be thankful for...why am I panicing ...I don't know, but I am . I can't control it.
Sincerely,
Mei Mei
-
Mei Mei,
I'm so sorry your daughter is being very insensitive to you right now. Yes it is tragic that her friend's brother was hit by a car and on life support. That is a terrible ordeal for anyone to go through. Four years ago my girl friends daughter's boyfriend was killed instantly in a car accident, he was 22. Two years ago my 3rd son lost his friend to cancer two days before his 18th birthday and he held her hand as she passed. At the moment my dearest friend in the world is terminal with lung cancer and she buried her sister in Jan 2001 of the same disease. Everyone deals with life altering tragedies.
I believe her anger is misplaced. She sees her grandfather who is elder and you are his caregiver and the facts are he will not be around forever. I feel your daughter is afraid and just doesn't know how to express it properly. The perils of youth. Think about it you have just survived brain surgery, now you are living with headaches, myofascial pain and you are exhausted. I feel your pain because I too am walking the same road, but I am not caring for my elderly father. I am on Effexor, Topamax and Ativan for when I have panic attacks and to help me sleep.
Our children can really hurt us deeply. I guess that's one of the sorrows of being a Mother. I believe she didn't mean it. On the other hand, living with chronic pain day in and day out wears a persons tolerance level very thin. At times I have no tolerance for bad behavior. When the situation has calmed down I think you should let your daughter know you didn't appreciate the manner in which she spoke to you. Also discuss all of this with your Dr. Panic attacks and children's hissy fits are brutal, he can give you something like Ativan to help you cope.
A little note here, a family member went on life support Jan 23 2010. He is now in rehab, going home on weekends. He will be home for good at the end of the month, He wasn't expected to live, they wanted my cousin to pull the plug because he had a heart transplant 16 years ago. She refused!! He made it. Thank You God!! So tell your daughter to pray and to think positive because miracles do happen.
Take care of yourself,
Anne Marie
-
Thank you, Anne Marie! for all your kind thoughts and suggestions. I really needed them. I have two daughters, but they really don't understand what I am coping with here in Maryland. They live hours away. I'll see the doctor on Monday so I'm glad I made the call to see him. Right now I'm taking Kava Kava and Valerian from Whole Foods. That seems to take the edge off. We are going for a walk with the wheel chair and the dog down the street to Barnes and Noble for the morning. It's a nice day and a cool morning.
I don't know what the doctor will suggest: Ativan or Xanax. Right now I am shaky and l choked up a lot. I'll tell him that. Do the others get like that?
I still have the numb skull and post surgical head aches and I know Jim said that the numb skull should take a year to go away so I have to be patient. It's the headaches that are getting me down together with the care of my father.
Well thanks all for listening and thank you so much for your wonderful reply!!!!
Sincerely,
Mei Mei
-
To all who responded to my post,
Things are looking up. I now only take Xanax when needed (like today for an outing to SeaWorld or the movies).
I still don't feel great. My balance is not the best and I still feel a strange disconnect with the world around me which is the main reason for my panic attacks.
Either I'm getting better or I'm just getting used to it. I like to think I'm getting better.
The shunt and the valve left a a crater and a large bump on my head respectively. I have a shaved head(I'm afraid i cannot grow enough hair to cover it up)
and so these are very prominent. The rather large scar from my surgery still gives me problems but not enough to drive me crazy.
I still have partial facial paralysis and problems eating (food falling out of my mouth) and sometimes with speech, especially when I'm tired.
My left vocal chord is still weak from the surgery so I have problems with my voice as well. My tumor was about 5 cm (I think they consider that a giant tumor),
so it caused a lot of problems both pre and post surgery.
My whole point is that in January ( 4 weeks after surgery), I was convinced that I was not mentally capable of dealing with any of this.
I felt the world caving in on me. Recovery from any major trauma can be a very isolating and lonely experience but it does get better (I'm talking to you Mei Mei).
I was in your shoes once and although people on this forum assured me that I would get better, I always thought, "what if I don't?"
Well, guess what? I did and so will you.
As for the situation with your daughter, no matter what horrible things happen to others around you, it doesn't change what happened to YOU.
You didn't ask for this (none of us did). Concentrate on getting yourself better. I can't say it any better than Anne Marie did. Thank you Ann Marie!!
And Mei Mei, if you ever feel down about your progress do what I do. Concentrate on how far you've come, not how far you've got to go.
My doctor told me it could be a year before I am well again so having this attitude has really helped me. Best of luck to you.
sgerrard, you were right. Spring came around and things did start to look better. I had my doubts there for a while but now I am enjoying the beautiful
San Diego weather. I had my surgery in the winter and started feeling better by spring so my brain seemed to be following the seasons.
If that is the case, I can't wait for summer.
Again, thanks to everyone for their kind words and advice.
Victor
-
You're an Angel, Victor, My goodness you've been through so so much. I, too have had vocal cord paralysis from a laminectomy and had to fly one year later from Maryland where I live out to Irvine, CA near you to get an anastomosis of the RLN that moves the vocal cords to the ansa hypoglossi (the tongue) borrowing electrical impulses so that the vocal cord would move again. It took 5 years for this to work and it is partially closing so that I can go on brisk walks up hills. The doc's name is Roger Crumley. When I talked with Dr. Friedman at House and described my anastomsis he immediately mentioned Dr. Crumley's name. He's well known for vocal cord paralysis. I did this surgery in the summer and stayed in the dorms for a 10 day recovery. The hospitalization was overnight. You can PM me about this if you like.
Your words to me this morning are inspiring as were Anne Marie's. I will open up this forum and read and re- read this post whenever I get anxious. I go to the doctor tomorrow to address the headaches and the anxiety for the first time. I have some visitors today which isn't very often and am looking forward to that. Things are looking up because I am addressing them and talking to this forum which I love. Thank God I found this forum. Have a great day at Sea World!!!!
-
Thank you everyone. I just found this site. You don't know how much of a life-saver you are for me. I'm almost 4 weeks out from surgery and the anxiety and depression are setting in. The facial paralysis has taken away my smile...the first thing people notice about me....and now it's gone. I fight seeing as my eyes don't want to work together anymore. The terrible tinnitis can be totally consuming at times. I'm isolated from my family as I moved from NE to IN the first of the year to start a new job. I was laid off the week before my AN was diagnosed. It's been a blessing of sorts as I'm now on disability and will remain so until I'm able to look for a new job. I have a few good friends that are very supportive which helps a lot. I see my surgeon in a few days and will discuss the anxiety with him.
Thank you again...God bless....Pat
-
Hang in there Pat, and welcome to the forum. There isn't anything that you can't say to anyone on here. At least I figure you can, but you can't curse and you can't hijack a thread.
4 weeks out from surgery is really soon and you have so much healing to do. I hope soon there will be others who have had their surgery along to help you out. I have not had surgery, however I do have some training in my background, and my Mom is a nurse so it helps me be prepared for what is ahead.
Cyber strength to you! Cyber hugs too!
-
Pat .....
You have been through a bucketload of trauma in the past month. Please know that it will get better as you progress through the process of recovery. So glad you found this forum. You will find many caring, supportive friends here who can fully understand what you are enduring.
Please keep posting and let us know how you are doing. Tell us a little more about your situation when you feel up to it. How large was your AN?
Many thoughts and prayers for additional quick healing.
Clarice
-
I've added the info regarding my AN to my signature.
The last month is only the latest chapter in my life. I believe the good Lord has confused me with Job during the last year. I lost my job of 17 years last April and was unable to find work until I moved to Indiana in January of this year. I spent most of last year struggling with severe depression on top of all the financial issues I was facing. Three years ago, I designed and built my own home and have since lost it to foreclosure. My retirement is also gone.
One does what she has to survive. As I said in my earlier post, my AN was sort of a mixed blessing. I was laid off from my new job a week before it was diagnosed. Because I was technically still employed, surgery for my AN allowed me to qualify for short-term disability and, if necessary, long-term disability. Instead of collecting unemployment, I will continue to draw my salary until the doctor determines that I’m healthy enough to go back to work or, in my case, look for work. The Lord takes care of me in strange ways sometimes. I’m not sure one can call having an AN a blessing, but I am blessed to be able to have the time to heal without financial hardship.
The reality of the situation is that I, like most of you, must deal with all of the problems associated with AN surgery. I researched the tumor, surgery, and its aftermath prior to surgery, but knowing what recovery is going to be like and living it are very different. I knew my face would be paralyzed and that my hearing would be compromised. I also knew my balance would be affected. What I wasn’t prepared for was the reality of facial paralysis. My smile is who I am. It’s very difficult to look in the mirror and not see it. I’ve always been able to smile in the face of adversity and now I can’t.
-
I believe the good Lord has confused me with Job during the last year.
Smile or no smile, you still have a good sense of humor. :)
Steve
-
My smile is who I am. It’s very difficult to look in the mirror and not see it. I’ve always been able to smile in the face of adversity and now I can’t.
Those sound like my words exactly after my surgery when I woke up with facial paralysis. Okay so this is a high jack going from panic attacks to losing the ability to smile, but we can find some similarity somewhere!
I kind of mourned the loss of my smile, as one mourns losing a breast to cancer. It defined me.
Pat- I have never given up on my wish for a "smile" or even some symmetry.
after almost 4 years post AN surgery, I will receive my "miracle surgery".-it is a long boring story but shows how perseverance and prayer have payed off.
so my advice is : Never give up and keep praying and hoping. Hope is what kept me going. I'll PM you.
I'm so sorry about all your losses- too much for one to handle. I can't imagine losing it all- job, house,retirement-I just about cried reading what you've been through.
:-\ :'( :) :) It will get better,
Maureen
-
Pat~
SO glad you found this Forum and the people here - WELCOME, but...sorry you had to find us. I am so sorry for all you have endured, but a good attitude goes a LONG way and your ability to see the blessing in a bad situation is a great start (you loss of job but still being paid?). I definitely believe that the Lord can work in everything if you look for it - He doesn't CAUSE bad things to happen, but like Job, sometimes allows them for His purpose. I know that is VERY hard and I am not here to preach...just to reaffirm what you have already said. If I didn't believe that, I don't think I would be where I am today. You see, I have been completely paralyzed on the right side of my face since I was 25 (I just turned 40!) - has it been all sunshine & roses? Of course not but I am choosing to try to make the most of it. I had the T3 done 2 years ago at Johns-Hopkins to try to give me some of my smile back and even the Dr. pointed out to his resident that I had (had) the "greatest" type of smile where I used ALL of the facial receptors to smile (apparently most people don't do this) - needless to say, I had a HUGE smile/laugh and used it ALL the time - still do! I would hope that anyone who has met me would tell you the same. You are still not very far out at all and a LOT of healing is still going to take place! Was your facial nerve cut or could it still return? Even if it was cut, there are many -& more & more all the time - things that can be done!!
I would LOVE to chat - if you would like for me to call you, please PM me your number & a good time to call!
K ;D
-
Didn't mean to hijack this thread...the loss of my smile is a major factor in what triggers my depression and my panic attacks.
thanks to all...Pat
-
Pat, have you had the time to look through some of the posts in the facial issues area? There's lots of info there about stages of recovery, surgical options, dealing with paralysis, etc.
Sara
-
Dear Pat,
I'm glad you found us and don't blame you for seeking out panic attacks. Keep coming back to us, but also keep researching the cures for reinnervation.
Hang in there.
Sinverely,
Mei Mei
-
Sorry to hijack this thread, but I had a full blown panic attack this morning and there ws already a thread about it so.....
Yesterday I woke up with a horrific migraine and awful back pain. I took Fioricet for the migraine and nothing for the back pain because I didn't want to mix another pain med in there. The Imitrex I take for migraine is usually useless on wake-up-with headaches. I am having issues with both my GP and my back doc regarding getting my pain controlled. My GP refuses to prescribe pain meds to anyone--I think he was a substance abuser and lost his license to prescribe narcotics. I have hyrocodone for my headaches when they get unbearable, but only a limited amount so I try to take it only when my back gets unbearable. I put in a call to the back doc to ask for some help controlling this pain on Wednesday, but he never returned my call.
Then last night my hubby decided to pick a fight with me over something so dumb, I can't even tell you what it was. I was so upset, I took an Ambien and went to bed at 8:00. My grandkids got home around 9 or so and I woke up at 2 AM and was still crying. Both my back and my head were screaming at me.
I woke up this morning at around 9, (grandkids stomping up and down the stairs over and over again) still in pain, and started crying, then hyperventilating and having chest pains. I finally got up and got the hubby, who got me a plastic bag to breath into to try to calm me down.
I am so tired of being in so much pain, not sleeping well because of it, and having the doctors treat me like a drug-seeker! I have a great life, a wonderful family and would be a pretty happy camper if I wasn't in so much pain all the time. I see the back doc on Tuesday and he is going to get an earful for not returning my call, and am seeking out a new GP ASAP.
Whew! That felt better! Thanks for letting me vent.
Capt Deb
-
Deb ~
I'm so sorry to learn of your most recent pain problems. I hope and will pray that you can find relief, soon. I'm also glad that you have a place to unload your frustrations. I know it helps - so vent anytime, Captain.
Jim
-
Deb,
I'm so sorry about the problems and everything caving in all at once; it really isn't fair. Doctors don't return calls. At least mine don't. I feel your pain about your husband. Just take a breather and take your space. Everybody needs their space and our AN issues ... well maybe our family members sometimes get tired of hearing about them 24/7. At least mine do. I talk about them sometimes. My father's home health aide asks me every morning, but health is her profession. My kids don't want to hear it every phone call. I think it scares them.
Just some people aren't supportive, but you know we are and will always be here for you. The website is wonderful. If you want to PM do so ANYTIME!!!!
Take care of DEB,
Mei Mei
-
Ah,
Capn Deb I'm so sorry to hear of your migraine, and back pain to boot >:(
Sounded like the Botox was working for you. Hang in there, capn and vent away!!!
Maureen
-
I wish I'd had some Xanax, and I tried to tell my GP about my "wonkyhead" so he gave me 10 of them over a month ago with no refills. He adamantly refuses to refill any med over the phone--you have to come in and fork over the money to get refills on anything. "I don't like Xanax," he says. I have been taking it to try to get some sleep when my back wakes me up every night at 2 AM when the Ambien wears off. I have been out of it for 2 weeks. This stuff, and painkillers are friggin' MEDICINE for cripes sake! It's just a shame that the recreational druggies and substance abusers have ruined it for the sick people whose quality of life is in the toilet. I have already accepted the fact that I will probably have to be on some sort of medication for the rest of my life because these headaches aren't going anywhere. "You'll get addicted" they say. So friggin what! I'd rather be a little addicted than suffering all the time like I am now.
Capt Deb
-
Awe, Capt Deb, I hate to hear that you are in so much pain. I am very fortunate to have a PP who understands pain and doesn't want anyone to suffer because of it.
My younger daughter is pregnant (yeah, she has waited a long time for this). Because she is older (34) she is experiencing problems younger Mom's don't, She is having severe back pain and because of the pregnancy can't take drugs. Her doctor recommended a "Snuggle". It is a pillow that looks like a coiled snake. It wraps between the legs and up along side your body or anywhere you need to relieve pressure. She is totally amazed at how much relief it has brought her. Her hubby has chronic back pain and didn't believe the relief she got so he tried it....he bought one the next day and doesn't sleep without it. It is just a thought, but maybe your body alignment isn't right when you sleep. Um...you need to be bowing into a paper bag for hyperventilation...is he trying to suffocate you with the plastic one? Take care and feel better. Oh and vent away...that helps me a lot and I do it often!
Hugs,
Brendalu
-
oops, my brain wasn't working (that's my story and I am sticking to it).it is a Snoogle and can be purchased at BabysRUS
:-[
Brenda
-
I wish I'd had some Xanax, This stuff, and painkillers are friggin' MEDICINE for cripes sake! It's just a shame that the recreational druggies and substance abusers have ruined it for the sick people whose quality of life is in the toilet. "You'll get addicted" they say. So friggin what! I'd rather be a little addicted than suffering all the time like I am now.
Capt Deb
Amen Capn Deb!
Doctors are not thinking sensibly and rationally when they refuse to prescribe drugs that real normal people need to feel better. Thanks you drug addicts!
Do we look like drug addicts?! (hmm, you DO have a lot of tattoos, but we know YOU are not one of those)
I take xanax twice a day for tinnitus, the extended release. Took a LONG time to find someone who would actually continually write for it. They don't even carry it at the Naval pharmacy!
When I had my face surgery last week, I told them I was on xanax .5 mg extended release 2x/day for severe tinnitus. Many a doctor/nurse would go over my meds and say so you are on xanax, prn?
I repeatedly said "NO! I am on it for tinnitus control."
You don't take it as needed?
"NO I take it EVERY DAY TWICE a day for TINNITUS CONTROL.DO you hear me??????'
It is so ingrained as a bad bad addictive medicine, which it is. But we are well educated rational adults.
So whatever helps you feel better, just keep bugging them. A little xanax a day is NOT going to turn you into a drug addict!!!!!!
Now if you keep asking for higher doses, that's a different story.
Okay end of soap opera on xanax.
BTW I'm so sorry about your headaches, and your panic attack. Have you considered chinese acupuncture????
MOE
-
Capt Deb
I'm sorry to hear about the added pain from your back and sorry about the doctor. Pain control has been a fairly new concern in medicine--maybe look for a younger doctor or definitely one who is concerned with the quality of life.
Hope tomorrow is a better day
Jennifer
-
I remember the days of surgery with little after surgery pain medicine ...
had a botched gall bladder removal that kept me in hospitalized for 16 days instead of the planned 4 days ...I was not given pain meds except at the 7:00pm med run after the first 6 days … and only something evey 8 hours in the first 6 days ... also have a scar that runs from split in my rib cage , down to belly button and past it almost to pubic bone ...how big is a gall bladder ??? ... for what ever reason they used rib spreaders on me that made my whole chest hurt ... I also have two new belly buttons (old now since suergery was in 1980) where they had put tubes to drain fluids coming from where gall bladder used to be and another added on day 6 to drain ooze that was mostly clear with some blood ...but every little bit the pump would suck out white stuff ... I had a raging infection and pain all over ... and just lay moaning and groaning in unbelievable pain ... and evidently called my mom , who had left the hospital the day of my surgery with my new baby sister) and called my dad and friends and maybe the President and my congressman... I don't remember calling anyone , but they say I did and was crying and hurting ...I honestly believe that alot of my lack of healing was the fact I was tumbling in a bed hurting so much that I was causing stuff inside to be further injured ...
Have had other surgeries more recently as in 1997 , 1999 , 2001 and hysterectomy (March) and AN (July) in 2007 … less pain equaled faster recovery …except for the residual pain from AN surgery
It took me almost 2 years from AN surgery to get good pain treatment ... and now that is going to change due to insurance and money ...I have 3 days of lyrica and then switch to Neurontin …will hope for best
Back to the panic attacks … I have them and they can range from just sweating and shaking to hyperventilating and wanting to hide and cry … I have had a few mild ones in past week and think it is the worrying about what the med change will do … will it work? Or will I have to sell my one fully functional kidneys or one of the girls to afford lyrica … was on Prozac for OCD tendency that were creeping up on me …but they made me feel jittery so stopped them … but had fewer panic problems …
Will say that at nearly 3 years out the panic attacks are better and seem directly related to what is going on with me AN wise … brain wreck headaches , wonky headedness wobbles or frustration on back sliding facial nerve and all the other changes that are seemingly never ending
I just get up everyday and hope for best and usually not overly disappointed
-
Woah, Soundy,
You have had your share of surgeries :o I can kind of understand why you have panic attacks. That gallbladder surgery was the clincher.
I so hope that you can continue your meds.
Cheri just posted an interesting update on a med that she is taking for another health issue that helps her wonkyness. I found it interesting.
Here it is: I just copied the interesting part.
As for me, I have to share some personal info concerning my AN therapy. I have been taking ADHD medication for about 5 years. I stopped taking my Strattera one week prior to surgery and resumed within 2-3 weeks post op. Recently, due to the economy and no medical insurance at the moment, I chose not to spend the $200 a month to purchase the med back in Feb. It's been approx. 3 months and I can honestly say that the wonkiness came back in full force! We broke down and got my prescription just days ago. I cannot tell you how much this has helped! I don't know if it's a brain receptor thing or what, but there's a notable difference. I can actually say it's totally gone! I can't help but wonder if this med with these components in it doesn't actually help move things along with rehabilitation. Just a food for thought. As of 3 days ago I'm feeling terrific!
Interesting huh ???
Maureen
-
I have panic attacks that just come on me but are more prevalent when headaches are at their worst... one time I do panic is being put under ...you would think it would come easy with as many times as I have been under .. when I had my AN surgery I talked to the anesthesiologist forever and he gave me stuff to take for the three days prior to surgery and had an IV drip of really good stuff dripping in me before surgery and after ... he also added Zofran to the IV as I come up throwing up every time I have had surgery ... I threw up after AN surgery but not in recovery when they were bringing me around ...would have been bad with the breathing tube they had in me ...
I have declined as many surgeries as I have had ...mostly orthopedic things that I didn't think would improve anything but doctors wanted to try ...like straightening my arms ...they are crooked and have been since birth and work fine for me ...and for most part no one really notices them ..
I will say that things in the whole medical field has changed in many ways and most all for the better ...things are much better now than when I had gall bladder removed 30 years ago ...
a big thing is the pain management ...I remember being told that the pain was a good thing , it told the nurses that things were working because I could feel ... but it also meant I rolled and tumbled , with them telling me that if I wanted out I needed to stay still ...I was caught in a no win situation ...
I am glad that if I had to have an AN that I had it now and not way back then ... if I and others have the issues we have post surgery with all improvements that have come along I just wonder what problems we would have if operated on long ago ...
last dose of Lyrica tonight ... go three days with nothing and then start on Neurontin and hope for best ... I have Day Camp starting the 21st and want to be headache free for that ...I have been taking increasingly lower doses (that looks and sounds all wrong ) but anyway ... been lowering dose of lyrica a little at a time and have had more break through headaches that I like and more Tylenol …
-
.
I am glad that if I had to have an AN that I had it now and not way back then ... if I and others have the issues we have post surgery with all improvements that have come along I just wonder what problems we would have if operated on long ago ...
Honestly, death or permanent vegetative state for me :o I had a complicated bloody tumor that had totally squashed the the cranial nerves. The doctor said there was absolutely no way in saving the face nerve. All the branches were obliterated. Thanks to the gifted neurotologist ( who trained at HEI), there was no stroke, and no other problems other than the facial nerve saga. PLUS my recent miracle surgery for smile restoration definitely would NOT have been available back then!
Maureen
-
Oh yea, and it was compressing the brain stem in a MAJOR way!
-
My surgery was several years ago now. I had flash backs and panic attacks. I could not get into an elevator, I could not stand for the door of my BR to be closed. I did not want to see anyone but family. I am much better now. I still avoid crowds and get nervous easily. I think that we all are affected by the surgery in different ways and it is good that we have this forum to discuss issues so that we know we are not alone and understand what is not normal for some is very normal for us.
-
Dear folks,
I am 2 weeks post-cyberknife and so relieved to have found this discussion. I'm having a hard time with having a head time. I don't have hugely troubling physical symptoms (some hearing loss, some tinnitus, some imbalance, some facial numbness) so I have a hard time understanding why I am so prone to fatigue and anxiety.
having a hard time cutting myself any slack....
Not much else to say, other than being grateful to have found this forum (via the ANA Facebook page) -- just seeing the topic "cognitive and emotional issues" was such a relief!!!!
Thank you all.
Dale
-
Hi, Dale. Welcome to the forum. I wish you could cut yourself a lot of slack. You have a brain tumor and just went through a major procedure to attempt to get rid of it. I haven't gone through radiation myself, but the fatigue doesn't surprise myself as a potential result. And the anxiety is totally understandable! There are so many worries when one has a tumor and is undergoing a treatment for it. Give yourself a break and lots of TLC. And use the forums. You're among people who understand what you're going through. --Carol Ann