Wonky Head

[doody73]

I'm 6 years out from surgery and GK. The last six months I've been really struggling with wonky head; frequent, annoying, long-lasting headaches (not migraines, thank goodness), worsening synkinesis, feeling light-headed and sleeping a lot.

I saw my neurosurgeon 9/15. He said one more MRI 3/18 and then no more. Since then I've had to have one MRI (3/16) and now I'm scheduled for another one next week. I'm almost hoping that they will find something on the MRI that would justify all these issues.

The only thing that has changed in my life is that I quit going to the gym a year ago. I want to start going again, but I'm not feeling confident in my balance right now. It's kind of a Catch-22. I need to strengthen my core muscles to improve my balance but I feel to wonky-headed to do the exercises.

My doctor is going to treat me with Botox for my facial muscle problems.

Anyone have any advice on the wonky head issue? It's come and go before, but it has never lasted this long.

[ANSydney]

Your MRI next week will tell you if growth is an issue. That will be an important piece of information.

I'm pretreatment and also find that I want to sleep more. From what I can gather, that's one of the effects of having an AN. It may be just to escape from the symptoms.

Can't help you with your observations, but it will be interesting to hear from others that are a few years post GK.

[doody73]

Pre-treatment I was VERY sleepy. I fell asleep while standing in line at Michael's craft store at Christmas time. When I went to see the neurosurgeon to get my diagnosis I was sound asleep in the reception area--another patient had to wake me up when they called my name. It did get better post treatment.

I had to have physical therapy for a chicken-wing arm, uneven gait, and to learn how to balance. Once that was over, I headed to a gym where I worked with a trainer. Best thing ever. I learned to jump and run at the same time my granddaughter was learning.

I'm sure you must have some wonky-head issues. Hopefully they will go away after treatment.