ANA Discussion Forum
Post-Treatment => Balance Issues => Topic started by: wcrimi on July 21, 2009, 08:11:03 am
-
If you had wonky head post surgery but it later subsided and you now feel mostly normal, please describe your experiences here.
How bad was it initially?
How long did it take to go away?
Did you do any PT or other activities that you believe helped?
Do you still have occasional days where it returns?
Anything else significant to add?
-
1. How bad was it initially?
2. How long did it take to go away?
3. Did you do any PT or other activities that you believe helped?
4. Do you still have occasional days where it returns?
5. Anything else significant to add?
1. Pretty bad ..... could not walk unassisted for nearly a week
2. It is difficult to define "go away" ..... to no longer need a person, walker, or cane and resume all normal activities ...... probably close to 9 months
3. I first had just balance focused physical therapy, then intensive vestibular therapy for about 10 months which helped greatly ...... still on modified home program, as needed
4. I still have it almost every day but it does not frighten me any longer ..... it is definitely worse when I am tired or more tense
5. Much of the wonkyheadedness for me was fear-based ..... I am still afraid of a bad fall (had several pre-op) but I have learned to greatly minimize the possibilities
I also might add that my situation is not typical (if there is such a thing!) since I have no vestibular function on either side.
Clarice
-
I have read about "wonky headedness" here over & over and thought about this a LOT. I have horrible balance at times (mainly when I am tired) but I truly don't think I am wonky headed - I might have been but it has been so long that I don't think I feel that way now, if I ever did. Of course, I don't have time to stop & think about it - I am full steam ahead! Now the dizziness post-op was HORRIBLE (whole room spinning out of control for quite some time) and I had awful hot flashes too so I wasn't totally immune. I did do some PT after 3 months - but that was really for the effects of the stroke (relearning to walk, write, pick up objects, etc.). I did no BALANCE PT specifically. I was young and even though I was overweight (& had been most of my life - not morbidly obese, just overweight), I was a PE teacher and VERY active - running some, walking, golf, competitive softball...I do think that helped
K
-
Good questions...very relevant.
How bad was it initially? Mild but noticeable.
How long did it take to go away? About 3 months.
Did you do any PT or other activities that you believe helped? Just a lot of walking, driving and other normal activities that involved head movement.
Do you still have occasional days where it returns? Not really.
Anything else significant to add? Yes. While 'wonky head' is a very common after-effect of surgery (or radiation), as individuals, we each seem to have a slightly different experience. There is no 'secret' to overcome this condition that I know of. Exercise helps but time is usually the best healer.
Jim
-
How bad was it initially?
Right after surgery I was extremely dizzy. I used a walker for about 2 days after leaving the hospital. Used a cane til about six weeks post-op because of the dizziness.
How long did it take to go away?
The initial dizziness subsided quickly as I graduated from a walker to a cane. After six weeks or so I hung up my cane and began driving. But I still had wonky-head at this point.
Did you do any PT or other activities that you believe helped?
I did get PT and walked around my neighborhood often. It helped my balance, but the dizziness remained the same.
Do you still have occasional days where it returns?
I thought my wonky head would never go away. It was with me ALL THE TIME. At around 10 months post-op, I was still wondering when I would feel better than I did before my surgery.
Anything else significant to add?
I am 13 months post-op and feel really good. I feel better than I did before my surgery. I haven't felt this good in years. My head is clear. The wonky-headedness is pretty insignificant now. There are a couple of factors, other than time, which I suspect contributed to my improvement.
My work schedule changed from swing shift to a normal 9-5:30 schedule. This makes my sleep schedule easier to regulate. And having a normal sleep schedule is very important. We all know that when we are tired, the wonky head takes over.
The other factor is my headache treatment. I don't know for sure if this helped or not. But in February I began taking Pamelor for pain. For me, one of it's side-effects was extreme drowsiness, which affected me for about 7 weeks. Eventually my body got used to it, and when I emerged from this side-effect, the wonky-headedness began to subside. My head began to feel clear.
Now, at 13 months post-op, my head feels clear and free of the wonky-headedness most of the time. I was able to enjoy a 1-week vacation in Puerto Rico without any dizziness or wonky-headedness.
Right now I do have wonky head, but that's because I got home at 3am and didn't get any rest during my flight back from Puerto Rico.
Syl
-
Thanks for the responses. ;)
I hope this thread continues to grow.
-
Happy to report that I do NOT have wonky head. ;D
My balance was never that bad after surgery, as the balance portion of my nerve was pretty much destroyed by the time I was diagnosed. I had many years for my body to compensate. I was a bit unsteady, but never required a cane or walker, and pretty much just took it a little slow and made sure there was something nearby to grab onto if I needed to (furniture, walls, small children, etc.). I'd say by 2 months, my balance was to the point where I was the only one who noticed my little "bobbles".
I did have more of an issue getting used to the SSD and that gave me sort of a spaced-out feeling at times, but I think that was more a matter of my brain learning how to filter out noises and my one good ear getting used to doing all the work. It took about a year for that to go away.
I had some exercises given to me by PT in the hospital, but since I am a PT, I just tried to incorporate those things into my usual routine - walking on uneven surfaces by going to my daughter's soccer practices, walking while turning my head at the grocery store, etc. Pretty much whatever movements were challenging for me, I just tried to do those until they got easier.
I'd say I feel normal now - there are days when I get really tired or have a cold or something that I feel a bit wonky headed, but I don't think it's nearly as bad as true wonky head. (Do you think they'll add that diagnosis to the medical dictionary?)
Lori
-
I had it much worse post radiosurgery than I do now post surgery. I had significant problems for years and only was able to push it back with the standup paddleboarding.
Post surgery I was wonky for a week or so but quickly started seeing improvement. I'm 5 weeks post surgery and almost feel normal. I've also taken to incorporating the PT exercises into everyday life and of course pushing my need for balance to the extreme with standup paddleboarding. My balance is better today than it has been for 5 years
-
I still have varying degrees of wonky head...My balance isnt to bad unless its a bad head day...To varying degees as well, I suffer from headaches on a daily basis...managable but annoying.
JO ;D
PS I also get this "knot" in the middle of my forehead. Neurogsurgeon said he doesnt know what it is...It like a brain freeze without the pain intensity. When this happens I become so focused on the knot that my peripheral vision is affected
-
1. How bad was it initially? - It was pretty bad for me in the beginning, as my AN was so small that it hadn't had any effect on my balance nerve. I never used a walker or a cane, but for the first week I walked outside holding onto a family member. I got around inside ok after a few days when I got home.
2. How long did it take to go away? I went back to work in the office at 8 weeks and it was much better, although still very difficult. To go away completely?? Hmmm...probably 9 months or so (give or take a month or so).
3. Did you do any PT or other activities that you believe helped? I went to one PT appointment. I did PT exercises at home for a few months. I constantly pushed myself. Did a lot of walking outside, in stores and eventually in the mall. The mall was the hardest and most exhausting. I bought a Wii and did the Wii Fit and eventually Dance Dance Revolution. Now that it's nice outside, I do a lot of yardwork, inside projects (painting rooms, etc) and still walk outside.
4. Do you still have occasional days where it returns? No, not anymore. The closest I can say that I come is that when I am VERY tired I feel just a tad off balance in my head and I know that if this was 4 months ago I woudln't have been feeling so good and would be wonky. I don't think that anyone else can tell that I feel that way, though.
5. Anything else significant to add? I think keeping active keeps things in check and still helps me. At almost 1 year, I'm still seeing improvement. I feel pretty much back to normal again and I do everything I did before the surgery.
Cathy
-
I had wonky head post op. It was pretty bad initially, but got better as the weeks went on.
My neurotologist had me doing vestibular exercises both pre and post op and they definitely helped.
I'm about 26 months post op and I still get wonky head occasionally when I'm overtired or stressed.
Jan
-
I have it..n flaunt it! ;D
Seriously....i get wonky head about every 5 days n it last for 3 i am not dizzy just heavy headed n off balance.
I have been doing vest. rehab/p/t for about 9 months.
I feel i have come a long way from what i was but its still not pretty.
-
Thanks for all the replies so far.
The reason I created this thread was that I didn't expect this kind of exerience post surgery based on what my surgeons described and what I read elswhere. I expected to have balance issues, but wonky head is a little different (at least for me). It's like balance waves moving inside my head making me a bit disoriented and uncomfortable. It's not just being wobbly but totally clear headed.
Plus, since it seems to extend for quite a long time for so many of us, I thought we could use a place where some consolidated information could be shared for those of us that are worried we may never improve and for those that are about to have surgery.
I've been reading many of the individual discussions, but didn't find many encouarging stories of improvement or of people feeling almost normal even if their balance is not perfect. To be honest, I don't think I'll mind being a little wobby when I turn my head quickly or try to do something extreme. I just want to feel somewhat normal when I'm not. Right now, I only feel normal when I am sitting or lying down. Even standing is enough to trigger wonky head on most days. I am improving though. No doubt about that. I'm glad to hear that others are also. I guess we all improve at different rates, but it seems most of us are moving in the right direction and we do get better with time. ;D
-
I know what u mean by balance being ok, even thou wonky head is present. I have wonky head something like cin605. And when it comes it stays for several days. My balance is only off when wonky head is bad.....but now for the last two weeks, I've been having headaches to the point where they wake me up during the night....Advil takes the edge off.
JO ;D
-
Just wanted to thank everyone for the responses and to keep this thread alive so new patients will add to it over time.
I am still very curious because I think the average recovery time is a lot longer than generally believed. I remember the surgeons I spoke to pre-op suggesting I would go back to work in 5-6 weeks (I did). I assumed that meant I would also feel pretty close to normal (not even close). I also remember reading that at 6 months all that should be left is momentary loss of equilibrium when you turn your head quickly.
I am 10 1/2 months post op now and I've been showing some signs of significant improvement lately, but there is still a long way to go. That does not seem to be too uncommon an experience.
I wish someone would do a statistical study on size of tumor, age, sex, general health, general activity level and recovery time for these balance and wonky head issues. I feel certain that it would be possible to give patients massively better information if this was studied a little better. If I had the time and resources to do it and get unbiased information I would do it myself.
-
I call it feeling "floaty." For me it's like you described with waves in my head making me disoriented. I had it before and after surgery.
1. How bad was it initially? Pretty bad, although I was able to walk down the hall in the hospital a few days after surgery just lightly touching the walls when needed. Came home after day 5 and did walks mostly unassisted, but with family members near just in case.
2. How long did it take to go away? I had surgery 6 weeks ago and have been driving for 3 weeks, working for 2 weeks. It's mostly good, but occasionally pops up when I turn.
3. Did you do any PT or other activities that you believe helped? I walked lots and lots.
4. Do you still have occasional days where it returns? I wouldn't say I have days where it returns, more like moments when it returns.
5. Anything else significant to add? I had head, neck, and facial massages which have helped my headaches tremendously (thanks for the suggestion, Cathy!). I wonder if having a headache adds to wonky head?
-
. How bad was it initially? Initially it was very,very bad especially if I moved my head to one side or got up from sitting or lying down.
2. How long did it take to go away? It took about a year and a half to get to a point where I felt more like I had pre-surgery.
3. Did you do any PT or other activities that you believe helped?
Once I started balance exercises, the change was pretty immediate. I have since worked some sort of balance exercise into every day even if it's 10 minutes.
4. Do you still have occasional days where it returns?
Yes, but not nearly as bad.
5. Anything else significant to add? At least this can help the next group of pre-op people.
-
Update
14 weeks post-op I'm pretty much wonky head free. Only when I get a head cold do I feel it and sometimes I get a brief touch going from light to dark.
-
I'm nearly 8 years post op and still have bouts of this wonky head stuff, especially if I don't get my required 8 to 9 hours of sleep at night. It took a number of years for me to be rid of the worst of the wonky head feeling, probably mainly due to the fact that I had serious headache issues and deal with screaming tinnitus on the deaf side.
To keep rid of the wonky head feeling, I try and go for a 30 minute 'power walk' daily and get enough sleep. I truly wish I had kept a journal and would encourage anyone new to this forum to keep a journal....I forget a lot of the details of exactly how I felt.
Cecile
-
Keeping a journal is a great idea. I kept one for the first few months. Then I sort of let it slip as the improvements started coming much slower.
-
1) How bad was it initially?
It was horrendous right after surgery. Could not stand up. Vomiting. CSF leaks. 2 weeks post op I Slowly progressed from wheelchair to walker
2) How long did it take to go away?
Week 4 nixed the walker
Month 1-2 had issues turning corners when walking. Uneven ground had me very weird and disoriented.
Month 6 riding a bike- no problem
3) Did you do any PT or other activities that you believe helped?
This was my thread/ post
http://anausa.org/forum/index.php?topic=5584.0
I feel it is imperative that I exercise every day for a minimum of 20 minutes (good heart rate stuff.) I power walk hills. I practice dance turns on the grass- at home. I feel if I do not use it- I loose it.
4) Do you still have occasional days where it returns?
YUP! Wonky head for me is worse when there are extreme rises and drops in barometric pressure.
5) Anything else significant to add?
I can have totally wonky-head-free-days however the days that it is the worse I am either very tired (not enough regular sleep), I am stressed… or a there is a steady barometric pressure change.
One of the vicious cycles I can get into is if I am tired but too busy to nap and/or rest (I drive kids everywhere…) I tend to grab a latte. If I have too much caffeine then I get in a vicious cycle of reduced needed sleep… Then I am wonky so I grab another cup of java to perk myself up… and the cycle starts…
I try to grab a minimum 20 minutes rest time a day to sit quietly in a resting position- even if this is in the family van while one of the kids is at practice or rehearsal. The key is stop and put my feet up… otherwise I don’t have enough stamina and get wonky head… The best investment I made, this year, was to buy a folding camp chair that has a footrest. While still being there at my child’s soccer practice I can rest and put my feet up. During the nice weather, while my kids are in rehearsal, I take my chair to a quiet park and read a book- this does wonders to prevent wonky head. For me anyway it is all about pacing oneself… as the best wonky head prevention technique.
DHM
-
i'm a little more than two years post op. my balance is better but my wonky head is not.somedays better than others but for the most part it's always there.
-
I've begun to notice that while my wonky head is gone my balance still goes off for brief moments.
-
Happy to report that I do NOT have wonky head. ;D
My balance was never that bad after surgery, as the balance portion of my nerve was pretty much destroyed by the time I was diagnosed. I had many years for my body to compensate. I was a bit unsteady, but never required a cane or walker, and pretty much just took it a little slow and made sure there was something nearby to grab onto if I needed to (furniture, walls, small children, etc.). I'd say by 2 months, my balance was to the point where I was the only one who noticed my little "bobbles".
I did have more of an issue getting used to the SSD and that gave me sort of a spaced-out feeling at times, but I think that was more a matter of my brain learning how to filter out noises and my one good ear getting used to doing all the work. It took about a year for that to go away.
I had some exercises given to me by PT in the hospital, but since I am a PT, I just tried to incorporate those things into my usual routine - walking on uneven surfaces by going to my daughter's soccer practices, walking while turning my head at the grocery store, etc. Pretty much whatever movements were challenging for me, I just tried to do those until they got easier.
I'd say I feel normal now - there are days when I get really tired or have a cold or something that I feel a bit wonky headed, but I don't think it's nearly as bad as true wonky head. (Do you think they'll add that diagnosis to the medical dictionary?)
Lori
That pretty much sums up my experience too. Thanks, Lori :)
-Amy
-
Hi everyone, its been awhile since I posted anything. I am still experiencing balance issues where my eyes and brain are not coordinating at least thats how I describe it. i am almost 3 months post-op translab surgery 2.5 + tumor in the CPA I am SSD rt side with terrible tinnitus that competes with noise in a room and seems to get louder. I am experiencing headaches almost daily and am on new medications hopefully to put that at ease. I am using a cane to help steady myself it seems things whirl around not vertigo but cant focus when I am out and about. I drive but short distances and dont experience it unless I need to turn my head fast so I take the long way around to pick up my dtr to avoid quick head turns. and even if I am at the computer to long I experience it also but especially when i am in motion. I had balance issues prior to surgery but feel it has worsened since the surgery. Am not back to work yet am hoping I can return soon. justed wanted to add my experience incase someone else can relate to this and know they are not alone. Noelle
-
Just adding my two cents! I had most of my balance issues early on and found that caffeine was a big factor for me. I had read mention of it affecting balance somewhere and realized that my worst days were when I had taken a bunch of Excedrin or had a couple cans of Diet Coke. I started avoiding caffeine as a trial and it helped immensely! I don't think my doctor quite believed me when I told him this, but hey, whatever works! ;) I'm back to being able to tolerate some, but I still watch it.
Denise
-
1) How bad was it initially? actually not bad at all. I had already lost my balance and all hearing in that ear. So post op was different and maybe even better. Initial progress came quickly, and by the four or fifth week, I began to really feel good.
2) How long did it take to go away? --- I would say that I still have it now at 6 months. My general balance is good, and I can function on the pitching deck while fishing, and i even windsurfed this summer. Of course these are both activities that I've done all my life and the body remembers well. However, I continue to have trouble with turning the head quickly while walking, bending over to pick up something, or moving and turning the head at the same time. I tend to stumble and almost fall down at times. Its more pronounced when I am tired which is often these days. But when I do get my sleep, things are pretty good. Those stumbling moments though are pretty rare, maybe once or twice a day under the right circumstances.
3) Did you do any PT or other activities that you believe helped? ---- I'm considering yoga this winter to help focus more on balance. I will also walk as much as I can as well as maybe even jog a bit. I still have a ways to go, and I look forward to continuing improvement based on others comments here. There is also something called bonzu or bosu ball???? It is half a rubberball with the other half a flat board. You stand on the board and just move back and forth balancing on the rubber ball side. I'm going to try one this winter to hopefully accelerate the improvements to come.
4) Do you still have occasional days where it returns?---- mostly when I'm very stressed or very tired
5) Anything else significant to add? ----- I had no facial paralysis at all, and I'm lucky that this is maybe one of the small problems that I need to overcome. I wish my right side of my tongue and mouth would return to normal, but that nerve may have been damaged by the AN. The extent of my wonky head I think is minor compared to others, probably because my body had already begun compensating for the squished nerve for quite sometime.
-
If you had wonky head post surgery but it later subsided and you now feel mostly normal, please describe your experiences here.
How bad was it initially?
How long did it take to go away?
Did you do any PT or other activities that you believe helped?
Do you still have occasional days where it returns?
Anything else significant to add?
FYI had my retro op 2/11/10.
My wonky head I guess was pretty bad, compared to being non-wonky I guess. Bad enough that it has incapacitated me? No. I'm pretty much doing what I used to do (not as well, though), living WITH the wonkyness.
My brain has compensated, but the imbalance has not been eliminated. Lately, I'm guessing because of the weather and allergies, I feel my imbalance is just as strong as the day I came home. Good news is, I can deal with it, manage through it, go hiking, jogging, jump rope, lift weights, etc. But the imbalance (and wonky-head) still there. Compensation, but no elimination.
I did no PT (Doc said I didn't need it cuz I put on a good show of balance 3rd day after surgery), but I did Indo Board exercises before pre-op (big help!), then post op just did my best to resort to my prior exercise routines.
(http://socalskateshop.com/images/products/thumb_indomini.jpg)
My Wonky-head has never left me. I have accepted it may always be there, and I will have to deal with it. If it goes away, then great!
When I first tried biking, I wiped out within 5 feet of getting on. What a great experience! But I got back right on it, and rode successfully. Now I'm doing a lot of hiking, 2-4 miles for 3 hours, up hills, rocks, etc. ...... wonky-headed and all ...... but I did it and will continue to do it. I like it, I like the challenge .... I was scared out of my wits crossing a river log (had to do all fours), but that's on my to do list. Practice walking across a log.
If you like challenges, then IMO you can view your wonky-ness as aonther challenge. The seemingly simple things done before offer a bit more challenge (or adventure is another way) .... that's how I am viewing it.
But ya, wonkyheadness is really annoying. I have almost forgotten what it was like to be normal ..... but I haven't yet, and this can bum me out sometimes. But I say push and move on ... safely and reasonably, but plateaus can only be broken, if you try to go and and break them.
-
Actually, I haven't tried playing basketball yet. It's on my to-do list. I was a good player before. I'm curious to see how I will fair going against others. Will keep you posted.
-
Actually, I haven't tried playing basketball yet. It's on my to-do list. I was a good player before. I'm curious to see how I will fair going against others. Will keep you posted.
Basketball should be easy compared to some of the things you are trying. I don't play competitively, but I get around the court very well and probably shoot better now than I did pre surgery because it has become a primary exercise for me.
-
How bad was it initially?
- Pretty bad. I was never sick because of my wonky head, but it was very uncomfortable. It was difficult to walk at first.
How long did it take to go away?
- Slowly, and still not 100%. When I am very tired I notice it the most. At this point, most of the time it isn't so much 'wonky head' as it is just a feeling of being off balance.
Did you do any PT or other activities that you believe helped?
- Not really. I used the Wii Fit balance games and I really liked those. Mostly just getting back to life and my normal routine forced me to compensate.
Do you still have occasional days where it returns?
- A little. Like I said, when I am very tired or if I have congestion I notice it.
Anything else significant to add?
- Honestly, it is the new 'normal' for me already. I am only 6 months post-op, but I have already adjusted. Would I rather be back to my old self? Sure. But I am grateful for my outcome and I try to focus on all of the good. I will have a long and healthy life and if I am a little wobblier than I was a few years ago, so be it.
-
My surgery was 11/25/08 and I have the wonky head and much worse, still >:( My right side balance nerve was removed with the tumor but the left side has not compensated and never will, I'm told. They do not know what happened or why. I walk with a cane at all times or would fall over.I liken it to being sea sick all the time. I can live with the balance problems but it's the pain I still have in the head that is my concern. If I have learned one thing on this forum it is that No one is the same. Sneezing it like throwing a grenade inside my head :(
-
Kathy .....
ANs are technically vestibular schwannomas (see http://en.wikipedia.org/wiki/Vestibular_schwannoma) that begin growing when the cells of the outside covering of the vestibular (balance) nerve begin to multiply into a tumor. Since the nerve is inside the tumor then, the nerve has to come out to completely remove the tumor. Even if you have radiation therapy for treatment, the vestibular nerve is usually damaged from the tumor. As you have stated, normally the vestibular nerve on the non-AN side takes over when the AN side one is removed.
It sounds like your non-AN side vestibular nerve is not taking over. However, all is not lost since we have three systems to help us maintain balance: vestibular nerves, vision, and sensory-neuro (muscles, nerves, etc. in our legs giving our brains the necessary feedback). The issue now is for you to strengthen your visual and sensory-neural responses.
I have no functioning vestibular nerves due to brain surgeries on both sides. After the second surgery (the AN removal), I was sent to a trained vestibular therapist (quite different from a physical therapist) and spent many months working with him, as well as doing a home program. Initially after surgery I used a walker, graduated to a cane or someone's arm, then finally on my own power. My surgery was two years ago last February and I am aware of my balance issues when walking most of the time, but I have learned to instinctively maintain my focus on a stable object when walking. I always try to stay to the wall side of a room, or at least near something solid to grab, if needed. My friends and family all joke with me about my swagger and are watchful if I seem unsteadier than usual. I have learned to ask for assistance if I need to walk outside after dark. Interestingly, I have no problem driving in the dark ..... just walking. ??? Overall, it does not majorly change my lifestyle, at this point.
You mentioned being sent to a Balance Center, so I hope that means you have had therapy with a trained vestibular therapist. Initially I went to a physical therapist with vestibular training and there was a world of difference between the approaches of the two. The vestibular therapist did all the things I needed to strengthen me, as well as enable me to regain my confidence.
Although I am a retired teacher, I feel like I am physically strong enough that I could go back now.
Best thoughts. PM me if you have any other questions.
Clarice
-
Hey CF,
can you tell me if the indo board is more? or less? challenging than the half ball ( the ones you see at gyms with a flat side and a ball side?
If I'm thinking of the same thing you are referring to, I think the Indo boards are a bit more difficult because the roller underneath can slip out from underneath you. Well the one I have at least, it's a Lowes special! I bought some of that plastic / PVC tubing and simply use a wooden board on top of it. Total cost like $5. Check out youtube to see how they're used and how to build one yourself. If you buy an Indo board, the cheapest set on ebay is around $80. Most of these have have the ends built out to prevent the roller from sliding out from underneath you. I should have put those "end borders" on the bottom of my homemade Indo board. I believe the half ball tool is rubber on the bottom and you can tilt, but I don't it can slip off from underneath you?
Check out this clip
http://www.youtube.com/watch?v=tuEx3GSSqGo
-
I had my surgery 2 months ago, and I am still very wonky headed. I can drive, but have to be very careful because the turning of my head back and forth really is difficult. I can walk, but stagger back and forth at times. Walking in the dark is all but impossible. I have had 2 PT sessions and it is way to early for it to have had impact on me. I am NF2, and do not know if that is adding to my problem or not. The remaining tumor is small and may not have any impact yet, but I think some people have very small tumors that cause wonkyness...is that a word? I am 61 years old and install shutters, and work from ladders and have applied for social security disability because it is too dangerous to be on a ladder any more. I have found that I spend so much mental effort to balance myself, that it detracts from anything else I try to do. It is like talking on the phone and driving...there is some overlapping function in your brain that should be driving, but it is talking on the phone...then the accident happens...I should have been driving rather than talking on the phone. When I get really wonky, it is hard for me to listen to people talk, think, or do anything. Do any of you have problems like your brain is so busy balancing that you have problems doing other things?
-
James:
Our post-surgery recovery is a long one. 2 months is really recent. You will continue to see improvement althought it will be slower as time goes by. I'm 2 yrs post-op and continue to see improvements. Just 2 months ago I stopped using night lights throughout my house. I have a better sense of which way is up in the dark now.
Just saw my ENT this week & he stressed the importance of continuing with my vestibular exercises. The wonky head doesn't go away on its own. We must be proactive as the brain continues to adjust.
Wonkyness is a work around the forum.
Syl
-
James,
I have to agree with Syl.
It may seem a bit discouraging to hear that the recovery is so slow, but I am about 17 months post op and feel like I reached a new peak this week. Every once in awhile you'll take a small step forward. I think the harder I work on balance activities the better I feel.
Wayne
-
How bad was it initially?
- Bad. The first week was the worst.
How long did it take to go away?
- It never went away. I am 14 months post-op and still have the same degree of weirdness. My balance never shifted properly either. My balance nerve was cut during surgery. I don't need a cane during the day on flat surfaces. I usually have someone with me when i walk in a field or uneven surface. Night is very bad. I cannot do much without sufficient lighting. It's sort of like my eyes cannot keep up with the motion of my head. The doctors have diagnosed me with "Chronic Vestibular Deficiency". That was the term they used since they can't call it "Oscillopsia" since only one ear was affected.
Did you do any PT or other activities that you believe helped?
- I did PT and Vestibular exercises for months. When I went back to work, I could still not stand on the ball thingy without someone holding me. It seems that when there is a lot of activity or it is a narrow passage, I have problems more than if I am walking through an open area. Malls, narrow hallways, yuk!
Do you still have occasional days where it returns?
- I have this every day and the doctors say it is something I will just have to get used to.
Anything else significant to add?
- This is my new normal. I have to deal with continued balance issues and some vision issues. I look at it this way... Things could have been a whole lot worse so if this is all I have to deal with, then I can live with it. God has taken care of me so far and He will help me with this. It's a new day and I have had my one year MRI and it showed nothing there (but there is a brain). I went back to work too early. Take your time and get as well as you can before trying to get back to a "normal" life. Time takes time.
-
What is a "wonky head?' --newby
If you had wonky head post surgery but it later subsided and you now feel mostly normal, please describe your experiences here.
How bad was it initially?
How long did it take to go away?
Did you do any PT or other activities that you believe helped?
Do you still have occasional days where it returns?
Anything else significant to add?
-
It is that feeling of disorientation or disequilibrium ..... when you cannot figure out up from down ...... not the same as true vertigo or dizziness where things are whirling around.
Deb, were you the one who coined the term? Whoever did, the word wonkyhead sure fits.
Clarice
-
It is that feeling of disorientation or disequilibrium ..... when you cannot figure out up from down ...... not the same as true vertigo or dizziness where things are whirling around.
Deb, were you the one who coined the term? Whoever did, the word wonkyhead sure fits.
Clarice
Capt Deb did coin the term "wonky head" (I coined the term "brain booger" for an AN).... and Clarice :-* is on the money. I tend to describe it as taking cold meds, having the head "disconnect" feel with a hint of dizziness tossed in for good measure.
Phyl