ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Catflower on November 19, 2008, 02:53:10 pm
-
All of you veterans know what I mean when I say wonky head. After 19 months mine isn't getting any better. I find it nearly impossible to function in shopping situations like the Mall or Walmart. I was so hoping this was going to improve.
Linda
-
Hi Linda,
Sorry to hear you still have wonky-head. Have you tried Vestibular Retraining by a Physical Therapist who is familiar with it? Many have found that helpful. Ask your treatment team who they recommend.
Regards,
Rob
-
Hi Linda,
Although my wonky headedness has improved, it is not completely gone and affects me especially in situations like going to the mall or being in a crowd of any sort. I notice this when I walk outside too, but since it is so open, while I notice the bouncing vision thing, it is not as bad as the mall or a crowd. My doc suggested looking straight ahead and fixing my gaze on a stationary object and shifting it to something else as I get closer to it. It is not an easy thing to do, because is is just not something that comes naturally and because you can't windowshop as you walk. Trying to carry on a conversation while you're walking is harder too, because you can't look at the person you're with. I wil tell you this though -- it does help. Another thing that I find helps me is holding onto someone's arm. I thinik this happens because it's kind of the same thing as holding onto something when your dizzy, it stabilizes your sense of balance. Also, since I'm not paying as much attention to what is going on around me as much as I used to, I hold my pocketbook much closer and more tightly. I'm nobody's victim and don't intend to be.
Best wishes,
Wendy
-
Wendy: Thanks for the advice. I'll definitely give it a try. It's good to hear from someone who knows exactly what I'm talking about.
Linda
-
Hi Linda
I'm coming up on my first year anniversary and I'm still a wonky-head. And I'm in vestibular rehab. It's the visual stimulation that does it. Around the house it isn't bad. But once I'm outside with a lot of things moving around me, I'm a mess. I don't have any suggestions -- just empathy.
David
-
It's the visual stimulation that does it. Around the house it isn't bad. But once I'm outside with a lot of things moving around me, I'm a mess.
Hi David -
I think you hit the nail right on the head - that is exactly what I've always thought and what I said to my doc. His suggestion does help outside too and he said eventually this sensation should get better or go away altogether. According to him the key is to stay active and not avoid situations that cause the problem -- the more you deal with it, the better you will retrain your brain. If you think about it, it makes sense. I suppose there is a chance it will never get completely better but if you try what he suggested, it may help things improve, I think it has helped me, or at least helped me cope with this particular problem.
Best wishes,
Wendy
-
its really driving me batty!I started vest.rehab last week.some times i just get so frustrated.Yesterday went for a massage got nails done eyebrows haircut french manicure.Came out of spa wobbleing dow the street first day out when its been windy couldn't see
squat!got home & bawled my eyes out...first good cry since surgury..part of recoup i hope.
-
i dont know who came up with the term " wonky head" but it really is the best description, when i first heard it called that i said to my wife thats how my head feels in the supermarket" wonky " that word still makes me laugh!!!, oh yeah by the way it does get better the more you go to the market or mall, i purposely make many small trips to the market jjust for that reason, it also seems better if your looking directly left or directly right therers too much stimulation looking straight down the aisle especially if the market has very high ceilings.
bill
-
Catflower -
I only suffer from wonkyhead when I'm extremely tired, but IMO the advice Wendy gave you is definitely the way to go. It's what I've done since I was post op and it works wonders. I also did vestibular exercises both pre and post op and they helped me a lot.
If you find Wendy's suggestions don't work for you, you should ask your doctor about physical therapy. It's just my opinion, and I know everyone is different, but nineteen months seems like a long time to still have wonky head on a regular basis.
Good luck,
Jan
-
Cheri
Yep. I agree with you, although I had more problems with malls and such over being outside. But yes - the more you do it, the better it gets. I still force myself to do things that challenge me. When I feel a tinge of wonky headedness, I know that I'm challenging something that needs to be worked on. I just take it in small steps now, since I've normally been feeling pretty good. I even went to the mall on Black Friday. No wonky head, but still just a tinge of a challenge.
I'm hoping to be able to get back to my mini-trampoline at some point. But not yet!
Cathy
-
Cheri
In answer to your question about PT. My balance has improved some since May when I started, but the wonkeyhead days are still here. It takes a real concentrated effort to manuever my way through the outside world. But there is something to be said for getting out often. I've noticed that since I moved at the beginning of November -- my wonky-head days are more frequent and difficult. It may have something to do with spending so much time in my new place unpacking and getting organized. There are days at a time when I leave my place only to go downstairs to get the mail -- or a paper like today. It is really hard to put things into perspective since I can't seem to find a cause and effect. It's good day today, bad day tomorrow. Unfortunately, as far as I know, the medical community really doesn't get this. Theresa England my physical therapist at least acknowledges it. She has heard this issue frequently from her patients. Some describe it as waterballoon head. Others have said it takes every bit of effort to walk from one place to another and most of the time they just want to give up and sit down. I'm still looking for an answer.
David
-
I'm in the Watch and Wait group, but my biggest problem is wonkiness, or bobbleheadedness. I still have really good hearing, although that's in a sound booth. I have lots of pressure in my ear, feels like a tennis ball in there. The surgeon said about 60-70 chance of losing my hearing and that the feeling of ear pressure would not improve much. He said my balance and vertigo would be worse immediately after surgery and then hopefully get back to where I am now. Is that about what you all have experienced?
Steph
-
Actually Steph, I was much better immediately after surgery. I was cruising the hospital halls without effort. There was a balance issue once I got home. But the wonky-headedness didn't come until a month later. I still don't get it. I wish the medical community would address this issue. But it doesn't seem to be a big enough deal to them. After a year of it, it's the one thing that truly annoys me. Don't shove it off like it's no big deal -- it is to me. Excuse me for being cynical, but it seems that -- at least from my experience -- doctors are good at getting the thing out -- but really are disgusting when it comes to dealing with the aftermath. My apologies, but I am really getting tired of this with no answers. Heck, there probably isn't enough money in it to find solutions.
David, the honest cynic
-
David:
The surgeon I saw was too cavellier about the results to me, like when he said if I lost my hearing then it would be no problem, we'd just do the translab. No problem for whom?
I'm pretty inspired by the folks who are really working on their balance issues and vertigo, since these are my biggest issues right now. I would have tried the middle fossa approach to try to save my hearing, but the doc said he wouldn't recommend that because I have a seizure disorder, even if it well controlled. I feel that he was very straight with me about the possible risks of surgery or gamma knife, but didn't want to discuss the ramifications for me or my life. In fact, nobody mentioned my life.
Sorry you are not feeling better. The sensations in the head are really distracting.
Steph
-
Could someone describe this feeling a little better?
I am 3 1/2 weeks into my recovery and my general balance itself is improving, but I do have a feeling that's sort of combination of dizziness, feeling like a just woke up and need a cup of coffee, and being slightly off balance that I get when I'm in motion. When I'm sitting at the computer or watching TV, I don't notice it much. But when I get up and walk around or go outside for a walk, it becomes much more noticeable. Is this what you are talking about or the sensation more extreme?
-
Welcome to wonky head world! That's it. I am sure it does vary in how it feels to each person. It is worse for some than others. When it improves also varies from person to person. Keep working on walking and should get better in time.
Cheryl R
-
Thanks Cheryl.
Does almost everyone get wonky head after surgery? I don't recall reading about this in any of the post surgery symptoms documentation.
Is it reasonably likely to be somewhat better in another 2 weeks or so?
I'm a little concerned about it because I can't imagine myself driving in my current condition (it would be like driving after a couple of drinks) , but I am scheduled to go back to work on 12/15 and really need to do so then or soon after because I'm not on disability/sick leave etc... and have no income right now.
-
Wayne,
I would also like to welcome you to the world of the wonky heads (or bobbleheads as my doc refers to them). I basically have the same experience as you. I feel fine as long as I am sitting, but when I go for a walk outside, to the mall or am in any crowd it is a very uncomfortable feeling. Not really dizzy, slightly off balance and whatever I'm looking at doesn't look right. It either looks like it is moving when it shouldn't be or bouncing slightly. I also get a kind of weird feeling in my head that I have never found the right words to describe. I don't have any problem driving or being a passenger in a car unless I'm driving (or riding) around looking for a parking spot and that's not too bad either though. My doc told me this would get better in time and it has improved a bit. He also said that whatever challenges the vestibular system improves it. His advice to me was to not avoid situations that are likely to make me feel like this and to stay active. The more you expose yourself to whatever brings on the wonky-headed feeling the better you willl retrain your brain to deal with it -- it is unpleasant to be sure, but necessary. As for being able to drive to work, I would say probably, but as you can see, this too is slightly different for each of us, so ony you will be able to answer that quetion.
David,
I'm so sorry you are still having problems after all this time. I definitely do think that there are issues post-op the docs need to know more about. It seems that some are more on the ball than others, although I do have to agree that wonky head/bobble head is an issue that nothing I read about in any medical literature prepared me for. I thank my lucky stars for all of you, who know what I'm talking about! My doc didn't mention it to me until I mentioned it to him. I don't think there is really anything else that can be done about it. I guess you could be right and they just don't see it as a big deal. That idea makes me wish they could spend a day or two in our wonky heads and see how they like it. I hope vestibular rehab helps you. It did make a difference for me to some degree.
Best wishes to all,
Wendy
-
i dont know who came up with the term " wonky head" but it really is the best description
bill
That would be yours truly! Me and my cousin Cam, who also had a brain tumor the same time as me--we would walk around the back yard together and call ourselves a "pair of wonkyheads." He's in heaven now and would really get a kick out of everyone using the word.
Capt Deb
-
thank you to capt deb and your cousin, it still makes me laugh it also makes my pt laugh when she asks me how i feel i tell her i gots the wonky head and you know what? she understands, unfortunate ly no one knows
the feeling unless they have experienced it and the the only words to describe efeectively is "WONKY HEAD"
-
Does anyone have any experience with Wonky head where it actually goes away or lessens significantly or am I going to have to deal with this feeling permanently?
It's gettting a bit frustrating to feel unbalanced/dizzy/drunk all the time unless I'm sitting still or lying down watching TV.
No improvement at all in the last couple of weeks in that area.
-
Like David I also felt like I did better the few months after surgery, but lately the wonky head has been worse. Primary care doc said I had a lot of fluid in my left (good) ear. She had me on prednisone for 4 days and now I'm on Claritin & Sudafed together for two weeks. I don't know if that will help or not. The only thing I can say about combining those two drugs is it's a good way to supress your appetite ;)
I'll be scheduling an appointment with ENT since I've also been having a lot of sinus issues.
Linda
-
hi guy's and gal's.i'm 16 months post op and the wonky head is my main issue.it's worse some days than others???.and definetly when i'm most fatigued.and i don't do well in dimly lit rooms.like other said it feels like you need a couple of cups of strong coffee.(but it doesn't help).or like you've been drinking.(which i haven't been).i struggled with chronic fatigue for years prior to my surgery and that certainly hasn't improved.good luck to all and happy holidays to you as well sincerely ernie henshaw.
-
I had my 4-5 week checkup with Dr. Smouha (one of my two surgeons) this week and he said he expects my "wonky head" problem to go away within a few weeks. Besides saying it is not unusual post op, he said the problem is the coordination between my eyes and my remaining balance nerve. He didn't call it "wonky head" or anything like that, but he seemed to be very familar with it. He suggested getting out often, walking, and even riding the bus because of the stimulus. As a visual exercise he suggested that I draw the letter "B" on a piece of paper, put it on the wall, and move my head left/right and up/down while remaining focused on the letter. I'm not sure if any of this will help me. So far I'm not improving much (if at all) in the last few weeks, but I remain hopeful and will follow his instructions. I have another visit with him in 3 months and one with Dr. Post in about 2 months.
-
wcrimi,
I started vestibular rehab today and explained the sensation as being on a boat, constantly. Some days it feels more like ripples when other days, mostly when my brain has been 'taxed', it feels like I'm riding waves. The therapist kept running me through some preliminary tests then would ask, "Are you dizzy now?" I kept reiterating the word "dizzy" wasn't what I was feeling, and finally told her about "wonky head". ;D I then explained the motion sensation vs. dizziness. She seemed to understand. I now have some exercises to do three times a day for one minute, working up to two minutes, and will see her in a week. I will go twice a week after that. Please don't be too discouraged though. I've come a long way in 8 weeks and have been very blessed thus far.
David, my dear friend ... I wish I were there to sip coffee, or wine, or whatever with you. I can only imagine how frustrated you are. As for surgeon's not discussing the "after-math", I have to say I'm so glad to have had all of you because now that I think of it, there were no post surgery wonkiness stuff discussed with me. I just kept getting that the initial dizziness was normal and to be expected. I think, IMO of course, that the surgeons really don't know how we're going to 'turn out' after the surgery. We all know it depends on the size, location and the surgeon's. And, once they get in our heads it's all a guess. I obtained a DVD of my surgery and it's unbelievable the area they have to work in. Of course it's magnified but it's such a small, small area. They cut, drilled, packed, stitched, shot fat and put plates and screws in my head! What I'm getting at is, I guess we're all different and the surgeon's probably can't honestly tell us what may or may not be, afterwards. Dr. S did go over all the horrible things that could go wrong so I guess that counts for something.
As for the wonky headedness, it seems to be a bit of a mystery, doesn't it? You are all constantly in my prayers.
Cheri
Cheri,
Would you mind describing the exercises you are doing for your wonk head?
Wayne
-
Hi I'm still wonky-headed. 11 months in Some days are worse than others. I just try, try try to work past how I feel, and just keep on trucking. It makes me tired physically, and I'm not a the gal I was, however I'm just happy to be here on this earth to heal!
Donnalynn
I'm sorry you haven't improved. Maybe it just takes longer with some people.
Did it improve at all along the way?
Did the doctors tell you that you that it would go away during your initial post surgery consultations?
What do they say now?
-
Thanks Cheri. I might be able to mimic a couple of those things at home.
-
It's helped for sure. I can certainly tell how out of shape my legs have gotten with the marching part. Forgot to mention going from a sitting to standing position 10 times too. 8)
Cheri
Cheri,
I have one of those big exercise balls at home. So I tried it. I'm not sure what sized ball you use, but I can barely get my feet lifted off the ground doing the marching motion (just a few inches). Is that about right?
Either way, it's not easy to keep the marching and head movement coordinated while you are bouncing around on the ball and trying to keep balanced. I have a great deal of difficulty with any kind of walking, toe to toe walking etc... plus side to side head movement. So adding this in will probably help.
-
Hi,
From time to time I read about "wonky head". Although I haven't gone through surgery yet, I think I can imagine what wonky head is. There is one thing I've been wondering about and that is why some people get the wonky head-feeling. Has it something to do with the fact that one of the balance nerves doesn't function anymore or is it an issue because of the surgery? Is there anyone out there who knows?
As some of you already know, I have already lost my balance nerve on the right side prior surgery. Two weeks ago I got a drug in my ear that has slowly knocked out my balance nerve. The doctors here in Sweden believe that you'll be feeling less dizziness after surgery if you knock out the balance nerve and do vestibular exercises prior surgery to strengthen the balance nerve on the other side. Is there a possiblity that I won't get the feeling of "wonky head" after surgery?
Best wishes,
Helene
-
Hey Cheri
This tread has come a long way since Linda started it a while back. A lot of good input to offset my tantrums. Thank you for those exercises. I haven't gone through those in PT. Unfortunately, most of my PT has been focused on facial reanimation and correcting the synkinesis especially since I started the Botox. I'm going to do the exercises you suggested.
But I do have a question for everyone. Is there something else going on with you that doesn't seem to be a balance issue -- not dizzy -- just foggy. Sort of like tuning the dial of a radio and getting static then it gets clear. I feel like my brain is tuning in and out. It tends to be very disorienting and confusing. I can't describe it better.
My best to all.
David
-
Hi Helene,
I like your smile too, and I hope it will be same too. Nice picture! :)
I think wonky head is mostly balance nerve related, so you might be able to avoid it, but I'm not really sure. I don't think anyone is. ???
Steve
-
Just reading through these....fascinating how different the timing.....situations....treatment options/actions reported. I am 4 years out from CK @ Stanford (John Adler) I walked out of treatment...went to Stanford shopping center...shopped.....had lunch with my sister and daughter-in-law. We drove back to Montclair (Oakland Hills) and in a few very good days I came home to Fresno (central Ca.) I readily resumed my daily activities. I'm a widow...so had a company to headup...home to run....grandchildren to care for. I was very active with only slight issues....simple inconveniences.....I thought. 6 months later things really started to change....balance...hearing diminished...mood swings..(HELLO Prozac) vision impairment...gym excercises starting to be difficult.....trainer soon recommended NO free weight training....changed regimen...still not good...I've tried vestibular rehab...water training....yoga/meditation. At this point I have lost total hearing in left ear...facial/trigeminal pain ( HELLO Vicodin/1/4 5mg Valium)....body pain due to trying to stay upright...fatigue...memory loss/lack of concentration (had to turn over running of company to son) shop online (no malling myself) ride electric carts in Target etc.....use cane outside....visual "wonkyness"...no theaters(DVD's are great) insomnia and the beat goes on. I have a Wii system (sports edition/Wii Fit) I'm trying....more fun to watch grandchildren and their friends...but trying...I LOVE to travel...took myself to New York/Connecticut (with help from "people movers/car& driver) had a fabulous time. Driving at times is very difficult....sometimes just plain can't. Now my 161/2 yearold grandaughter is my driver....my new "Beamer..(don't know if I'm scared or crazy!)no...really quite happy to have her. I'm moving out of my "to big" house to a new one in a gated community with many social activities and a golf cart to scoot me around (Beamer in the garage) I consider myself VERY blessed to be here....going to keep up the good fight and enjoy my life....afterall...I could be on the wrong side of the dirt had my AN been the C word. It's not an easy life...but a good life...do I cry...you bet and it's ok..do I get frustrated,fearful YES,do I want to fix it YES. Thanks to all of you.....you're helping me to do just that. Keep trying....I am very appreciative and thankful for everyones input. You're a GREAT bunch! Judy
-
Seems no matter how the AN was taken many of the side effects are the same.It must be related to it being gone after you body
adjusts itself to living w/ it for so long.
-
Hi Cin.....mine was not removed. It was "killed" by cyberknife (radiation) evolveving in the "death throws" thus irritating brain tissue.....causing ill effects or the "aging process" per doctor. I am 68 years young....my question being.....if it's the aging process why do young people have same, similar or even different issues than I? Administering steroids was not the continuing choice for me as it held it's own side effects as well. I eventually declined them and went about coping on my own......Still am......finding I am having a much better outcome. "wonkyhead" or not I'm going to continue to be a strong advocate for myself.....I know my body well and will continue my "fight" with or without them.
Judy
-
Hello,
I think i commented on the wonky head thing before. I'm still pre-op. My surgery is in three weeks. When I found out about the AN in October, i was feeling fine. Early - mid December, my head was feeling always weird, wonky, off balance, etc. It's gotten a little better lately, or maybe i'm just used to it. I'm fine when I sit or am lying down, but like many of you, going to the mall is very weird and wonky! Here's something else, though. If my head feel wonky, if i go run, i usually feel better - more clear headed. I may stagger just a bit but it still helps. Is there something about exercise that helps? Usually instead of running, i'd rather just lay down though! (I was the one who was going to try to do another marathon before my surgery... what a joke!!)
That said, i think David - you've commented a lot on the wonky head problem. But you run as well, right (i think you said you did a 5k and half). Does that help you or is it difficult?
Again, than you all ! I always benefit from all the comments.
Keri
-
Hey, Keri - I have been wonky-headed for a good number of years and have always felt better once I did something physical - workout with weights, play tennis or just jog/walk. But put me in Wal Mart and it's a different story! Don't know the reason, I've just sort of accepted it and hope that now that I've had the AN removed and the offending balance nerve has been cut, that the other side of my brain will eventually work things out. Like Cheri said, the more you do prior to surgery, the better probably. I had been training for a 60 mile walk (3-Day) just prior to surgery - I did not need a walker or cane assistance after surgery. Don't know that the training had anything to do with it, but it didn't hurt ;)
Best of luck on your upcoming surgery! Be sure to keep us posted.
Cindy
-
Keri,
It does seem the more active you are the better the wonky-headedness is . That said, going to the mall or being in any crowd is still a problem for me. The visual stimulation gets to be too much for my poor brain to handle. I confirmed with my doc that this is exactly the problem. He suggersted fixing my gaze on something stationary rather than looking around and this does help, although it is not easy to do. It also makes you less aware of what is going on around you, so it is a trade-off. I personally deal with my weird feeling until it gets to be too much and then fix my gaze on some stationary object for a while and switch to another stationary object when I get close to what I've been concentrating on.
Wendy
-
I am thinking that I'll probably do the endoscopic surgery this winter or spring at SBI. What I hope is that my wonky head doesn't get worse. It got worse suddendly last summer, which made me insist on my first MRI and got the diagnosis. I didn't ride my horses much last summer because I just didn't feel well enough. Now I ride anyway, and I think that is helping. I may feel more dizzy toward the end of the workout and briefly afterward, but then it's like my body adjusts and I feel better than before. I've been using the treadmill for 40 minutes a few times a week and that seems to help, too. Crowds are still awful.
Steph
-
Donnalynn~
I never thought twice about WalMart until I got on this forum. I guess it is a good thing since I go there almost everyday! The greeter says, "See ya tomorrow..." when I leave and the other day one of the checkers said something about "didn't I have 3 girls?" LOL!! It is a supercenter too so it really big!! Maybe they do pipe in drugs & that is why I go so often!! ::)
K
-
I had a nightmare last night i was there & had all my stuff ready to check out in the cart & lost my cart.Talk about sweating out a dream.It was enough work out just to get the stuff from all over the store then to loose my cart OH MY GOD!Also in the dream my bearded dragon was in the cart! ;D.oh yeh all i took yesterday was a lorazepam before bed & a tramadol at about 12:00 noon.....hmm
-
I'd like to report some mild improvement that has lasted for more than one day. I worked yesterday and felt great all day (well at least compared to usual). Overall it was my best day since surgery. Typically whenever I have a good day in the dizziness/wonky head area, the following day I have a setback and get discouraged again. However, this time my balance, dizziness etc... seems to be pretty darn good today too. In fact, overall, this last week has been a pretty good except for Sunday. For the first time in 4-5 weeks I think I can honestly say I might be seeing some real improvement after such rapid improvement the first couple of weeks and then nothing for quite awhile. ;D
-
Glad to hear it, Wayne. Crossing my fingers that you continue to have many more good days than bad ones! Sounds like you're definitely on your way to iit.
Cindy
-
My PT vestub.rehab doc said the whole grocery store restraunt/walmart issues are from sensory overload.
-
I have a funny feeling we are classifying a combination of different issues as wonky-head.
When I walk (especially outside), I get a disoriented dizzy kind of feeling, but I don't notice anything different in malls, restuarants, etc... It's always more or less the same except that I tend to walk faster when I'm outside than when I'm in the house. The faster I walk, the worse it is.
The other issue I have is when I move my head left or right and try to keep my eyes focused forward. When I move my head to the right my eyes adjust perfectly. When I move my head to the left, there is a slight delay between the time my head moves and when my eyes adjust. That can also be a tad disorienting. The thing is, I don't even know if that's an issue related to the surgery because I've always had slight issues with focusing my eyes. I may have just noticed it now because of some of the PT exercises I am doing now. I'll be going to an eye doctor soon abut that.
Other people seem to be having more complex or different issues. Maybe they can describe it better.