Wonky Head

[sgerrard]

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

[JudyT]

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

[cin605]

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.

[JudyT]

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

[Keri]

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

[cindyj]

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

[wendysig]

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

[highlife]

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

[Kaybo]

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

[cin605]

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! .oh yeh all i took yesterday was a lorazepam before bed & a tramadol at about 12:00 noon.....hmm

[wcrimi]

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.   

[cindyj]

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

[cin605]

My PT vestub.rehab doc said the whole grocery store restraunt/walmart issues are from sensory overload.

[wcrimi]

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.