Just not gettin any better :(

[millie]

Hi Susie and everyone-
Susie , I sympathize...the wonkiheadedness is a  bothersome state  and I have found hard to define it well...  Whether it is a sense of being off but walking just fine, the feeling of a spirit sitting on the an side, lightheadedness as if having had two glasses of wine in succession (but having none)or simply something askew in there that was not there ten or five years ago(we know it is a different feeling from the way we used to feel before the an ) -it is a constant presence and it seems to worsen with noise and stress.  It comes and goes.  I think the SSD after translab compounds the feeling.  However,I THINK it is getting better for me (my surgery was Oct 17th) as I feel  much better  today than right after surgery .
I want to believe that as our tissues and nerves heal after the surgery, it gets better up there...and then, maybe, we just get used to  the residual wonk states.

[LakeErie]

Millie, I agree with you. I am 14 months post-op and the complications of the surgery have improved steadily, still are improving in fact. At the same time, to the extent that problems remain, I have grown more accustomed to them. As an example, I hardly notice the numbness on the right side of my tongue anymore, even though it is still numb. We do improve, we also get used to the new way we are now. 

[chloes mema]

I didn't have surgery but did have CK about seven months ago and the wonkihead or whatever it is is getting worse.  I went Xmas shopping at the mall for two hours Monday figuring I'd be OK; NOT!  I couldn't hear anyone that spoke to me, I had such a bad headache, was walking like a drunk, & feeling ill.  Was surprised that whatever this is also took a toll on me Tuesday, sort of had to lay low all day.  I never want to go shopping again & for me that's a statement   .

I notice now just walking "scrambles" something in my head & heaven forbid I'd ever have to run to or from something.

Hopefully, for all of us experiencing this it will come to pass - soon.

Karen   

[lrobie]

Karen,

I don't like to go shopping either and generally the following day, I'm exhausted.  I can't remember if you have tried vestibular therapy.  It might be a good time to start, especially the gaze stabilization exercises.

Lisa

[Seal]

Susierg,

Well all of the above is great advice, and of course everyone is different.    Only don't listen Clarice; I enjoyed my coffee as soon as I came home from the operation!!!        I think you are being too hard on yourself.    Maybe try backing off of things a bit and be sure to get your sleep at night.    I also found that NAP IS GOOD!!!     Anything you can do to let your body heal over time will help.   I also went through a period (distant memory  now) at around 7-9 months when I thought that I'd never get any better.    Lo and behold, the progress continued at a pace that was not always detectable but was obvious after the improvement.     As was said, you still have plenty of improvement to experience, right into 12, 15, or longer than 19 months.      Albeit, the progress is smaller, but its all still good.    Hang in there.   Listen to your body and get that rest it needs!

SteveK

[millie]

Thanks Steve.  Like the girls above, I went with my 90 year old mom to her doctor's appt. today, then grocery shopping with her, then returned some stuff to Kohl's and I have had it.  I started to feel really out of it in Kohl's plus I could not find what I needed.I too had  the feeling that is it ever going to get better.  I am feeling very bah humbuggy right now.  It is two months after surgery almost so thanks for saying it will probably slowly get better.
My left eye vision seems different too (an was on the left) and my facial droop has gotten better but I still have some droop.  One thing I have noticed is my eyelashes on the left eye are almost gone!  What happened to them and did anyone ever have that happen?  Maybe that's why it tears so much.
Mil

[LizAN]

Millie, did you have translab?  Did they take your vestibular nerve?  I wonder if that could be impacting your vision.

For the first few weeks after surgery, I had a very difficult time reading, working on the computer, or even watching TV.  I wasn't sure until just a few days before I went back to work that I was actually going to be able to do my job.  It is much better now, but I still could use some vestibular therapy and maybe even some gaze stabilization exercises.  I will probably check into that after I've healed from the upcoming BAHA surgery.

Best,
Liz

[spgreenfield]

My left eye vision seems different too (an was on the left) and my facial droop has gotten better but I still have some droop.  One thing I have noticed is my eyelashes on the left eye are almost gone!  What happened to them and did anyone ever have that happen?  Maybe that's why it tears so much.
Mil

Millie - I'm SO WITH you about the eyelashes!!!  LOL!  I actually BOUGHT some stuff that's supposed to help regrow them....not sure if it was time or the stuff that made the difference, but they're mostly back now.  Also - the eye droop causes them to lay flat when they would normally stand up more.  And I think rubbing was pulling them out quicker than they could regrow.  My vision drives me nuts at times - I just keep drops handy.  I also had prisms put in my glasses - and now when I am walking about the house without my glasses I am more dizzy - so you may even want to consider this.  Just be careful on how you tighten your muscles on your face....I have ended up with some synchinesis (sp?) on that side and now my eye is TOO TIGHT!  Go figure!  It's slowly (painfully slowly) getting better.  I'm still tempted to contact Jackie Diels about exercises as she has the ability to Skype with you for a fee - but we're unemployed at the moment....so funds are low.

So I don't know how many of you believe in supplements, but I take handfuls of vitamins daily - for bone and other things.  I take alpha lipoic acid, which is supposed to help nerves - don't know how much it will help, but I've increased the amount I take just to see if it helps.....maybe you should look into that kind of thing?

I guess I've just decided that I'm not going to hurry things as best as I can - but I am blessed with being home - I watch my 6 month old granddaughter for my daughter while she works, and that actually is a great balance challenge as I WILL NOT fall when holding her - forces me to be very careful with my walking and other things.  I've recently reduced one balance issue - literally fell totally out of control when I tried getting up and turning to walk behind me all in the same motion!  That was a couple months ago and it no longer happens, but I am more careful.  Just try to be patient.  What everyone is saying is true - overloads are no longer our "friends" at all!  I used to be a supermom....no longer.  Sad, but true.  No more crisis management for me!!!!   

Pam

[millie]

Hello everyone!
Best wishes for health and recovery in the New Year.  More balance.  Less wonkihead.  More eyelashes.  Patience and strength. Insight.
As I read these posts, I thank you are there to identify and share with -each and every one of you speaks to issues I well know and it is such a help.
Mil
PS I am being chased off the computer because my husband says I am on it too much and create my own problems.

[mikechinnock]

34 years post surgery I am still dealing with balance and other issues. Life is a dynamic process and sometimes one simply has to learn to adjust to the changes. Good luck in your efforts.

[stoneaxe]

Don't give in folks. I know everyone is different but I don't think my recovery is all that much different from what I'm hearing here. I did all the typical balance therapy and lots of it, had some minor improvement, but still had significant issues 4 years after proton beam. It wasn't until I went to the extreme that I saw real benefit and a return (or at least close to) the old me. I think standard therapy has limitations. You are usually inside with no good visual horizon to help establish a baseline. You are retraining your vestibular system to be more visual dependent. A broad flat horizon functions the same as the instruments in a plane that help pilots know which way is up in bad weather. One thing I know I disagree with heartily is that you can't rush recovery. Again everyone's circumstances are different but I was back on the water (with the blessing of Dr McKenna) a month after surgery back in training for the CCBC. There was no way I was going to wait. I knew that getting back to normal depended on it.

I don't know how many of you have read the standup paddleboarding thread but my recent post of the unintended experiment (not paddling for 4 months) really solidified my thoughts on the benefits. My return to wonkiness dissapeared after getting back on the water for just a week. Standup may not be the thing for you but find something that gets you outdoors where you can see the horizon and challenge your balance. Even if you bring a bosu ball to the beach and do balance exercises on it I think you'll find it more beneficial than indoors. Going out and doing it frequently, and sometimes pushing yourself to the point of exhaustion (much easier when the activity is fun) calibrates your system to understand up and down. When I come in from a hard surf session my head is rock solid...not the slightest hint of wonkiness. Unless its foggy...another way I know this works. It all goes out the window trying to surf in the fog when the horizon blends into the water. If you can't get outdoors for it use a strip of tape at eye level across the wall for visual reference while exercising.

I've also gotten a standing desk at work. Raises to standing height or I can lower it to sit if needed...usually only if I eat at my desk. I try to stand as often as I can. Not only does it give you better kinesthetic feedback and help balance but there is lots of current research that sitting for 8 hours a day is as bad for you as smoking. You also burn a lot more calories. At my size about 200 calories a day. that's about 14 lbs/year for those of you that count like myself.....every little bit helps.....

The simple fact is that if I don't go out and push real hard I quickly revert back to wonkiness. It takes hard work but I'll take normal.

[thursday49]

This is purely anecdotal help. The vertigo I had in spurts about 5 years ago responded well to taking about 5 mg of manganese,  maybe two three times a day. The vertigo would abate after I'd slept, after taking the manganese. It's available at health food stores, maybe GNC. But for sure at Vitamin Shoppe.

About 5 years ago, living in Albuquerque, I would get these spells and would fear driving because the road was moving to the right and I needed to vomit. I think this state is what you are mentioning as wonkihead.

I read in this Nutritional Therapy book by a husband and wife team, last name-Balch, he an M.D., she a nutritionist, that manganese is frequently lacking in people with ear problems. I showed the article to the ENT in Albuquerque. He read it and said, "if it works, what can I say?"

When the vertigo resumed two years after I moved to Austin, I was directed to the Emergency Room. They declared I'm so healthy, but gave me no help on my vertigo.  I mentioned it to my siblings via E-mail. My sister in law told me the exercises her ENT or some therapist had had her do leaning her head off the bed in certain directions. I've done that and never had any more vertigo.

Take all this with a grain of salt, as it's just my experience.