Balance improved after CK!

[Tumbleweed]

Hi, everyone:

I'm happy (make that thrilled) to be able to report with confidence at this point that my balance has very significantly improved since getting CK. I've waited this long (now 9 months post-CK) to "officially" report this in a post because my balance function fluctuates from day to day, and I wanted to establish a trend before pronouncing any firm conclusions.

Immediately after getting CK, my balance worsened by about 15 to 20% (subjectively). I had intermittent waves of dizziness occurring one or more times per day for the first six months after treatment (I didn't have this before receiving CK). But after about 7 months, not only had that symptom disappeared, but my balance function seemed to improve to where it was better than it was before getting treated in one important regard. Read on.

For the past 8-1/2 years, since the onset of symptoms, I'd been experiencing what another forumite aptly described as "the invisible hand." That is, I'd be standing still  or turning while standing, and I'd start to fall over to one side, almost as if an invisible hand just gave me a gentle nudge. (I wouldn't feel the "hand" on my body, but the inertia would be the same as if someone had pushed me.)

To my surprise, that annoying and chronic symptom has been virtually gone for the past 2 months (i.e., beginning about 7 months after I received CyberKnife treatment). A few times, I've had the very slightest tipsy moment, but nothing that couldn't possibly be chalked up to normal, momentary imbalance. I have to conclude that that symptom, at least for now, is no more! 

I still have a nearly constant sense of disequilibrium or "wonky head," as it is commonly referred to on this board, when I walk and sometimes even when at rest. But the more dramatic tendency of suddenly beginning to fall over to one side without warning, that's seemingly gone.

Hopefully this report will be an inspiration and comfort to those in watch-and-wait mode who are considering CK, as well as to those who recently underwent CK treatment and are struggling with worsened balance symptoms. There is hope!

Best wishes to all,
Tumbleweed

[ppearl214]

do you know just how thrilled I am to hear this news?   all is falling into place.. and you got the infamous hugglez and wellness wishes coming for continued good health!

Great news! Congrats!  If you could only see my grin... fab news!

Phyl

[Mickey]

Great news! Very happy to hear positive things from treaments. I don`t think I`ve experienced any dizzyness but still glad to see something thats helped you and may help others some day including myself.  thanks, Mickey W+W

[stoneaxe]

That's great news! Have you been doing any therapy to help it?

[Jim Scott]

Hi, everyone:

I'm happy (make that thrilled) to be able to report with confidence at this point that my balance has very significantly improved since getting CK. I've waited this long (now 9 months post-CK) to "officially" report this in a post because my balance function fluctuates from day to day, and I wanted to establish a trend before pronouncing any firm conclusions.

Hopefully this report will be an inspiration and comfort to those in watch-and-wait mode who are considering CK, as well as to those who recently underwent CK treatment and are struggling with worsened balance symptoms. There is hope!

Tumbleweed ~

Thanks for that great report and congratulations on regaining your balance abilities.  Your experience certainly is an inspiration and I hope your balance continues to improve.

Jim

[Anomar11]

Tumbleweed,

I'm delighted for you!   Thanks for the update.  Overall I'm doing fairly well 6 months post CK with a few bumps.  Your story is an inspiration that the bumps are likely temporary.   Take care.

Mona

[Tumbleweed]

Thanks for your support, everyone!

Stoneaxe, yes, in a sense I've been doing a lot of therapy. Most importantly, a lot of hiking. The more I hike over uneven ground, the better my balance is (much like the benefits you've reported from doing your paddle-boarding, or whatever you call it  , out at sea).

I've also been doing a ton of supplements each day to keep tumor swelling down (e.g., curcumin, bromelain, Flavenzym systemic enzymes, etc.) and nourish my nerves (vitamin E, calcium, etc.) and avoiding sugar, chocolate, and so on.

I think the biggest help may be just getting a lot of sleep.

Thanks again to everyone for your well wishes. It feels like home. 

Best,
Tumbleweed

[sgerrard]

and avoiding sugar, chocolate, and so on

You lost me there. 

I think a report of recovering balance after CK is very important; it is in my mind the number one potentially nagging problem after radiation treatment.

Congratulations on your progress, and best wishes for more of the same.

Steve

[mk]

Tumbleweed,

Congratulations for the good news. I know that balance has been a serious issue for you. If I remember well you should be coming up for your one year post-CK follow-up. I hope that you will get some good news on that front too and that you have avoided any swelling.

(By the way, I also take curcumin to avoid sweeling - but can't cut down on chocolate  )

Marianna

[Tumbleweed]

Thanks, Marianna. Yeah, my second post-CK followup MRI is coming up in June. Unfortunately, my last MRI already showed some mild swelling. But I'm guessing it's gone down since, based on my improving balance.

My main concern is the second "lesion" they found in my hypoglossal canal. They're pretty sure it's another schwannoma. Hopefully it hasn't gotten any bigger. I've actually been able to put it for the most part out of my mind for the past 4 months. But as the time for my next MRI draws near, I know I'll start to get nervous. I really hope I don't need to get my brain cooked again.

Oh, and wouldn't it be great if we could find some chocolate-coated curcumin at some healthfood store?  Not sure it'd taste anything but horrible, but at least it'd immediately nip any caffeine-caused swelling in the bud! 

Best wishes,
Tumbleweed

[Tumbleweed]

Unfortunately, my last MRI already showed some mild swelling. But I'm guessing it's gone down since, based on my improving balance.

Tumbleweed

On second thought, it might be that the radiation or continued tumor swelling has damaged my vestibular nerve further on that side, thus decreasing the signal strength and letting my good side compensate more easily. 19 months ago, tests showed I had only 29% balance function remaining on my AN side.

Whatever the reason, I'm grateful and hope my balance continues to improve.

TW

[jerseygirl]

Tumbleweed,

Sorry I am late to post but nevertheless please accept my congratulations! I am sure your balance will improve even further with continuous exercise. Great news!

            Eve

[wendysig]

Tumbleweed,

Congratulations on the improvements you're seeing.  Nine months seems to be a point where a lot of change  can be noticed for all of us.  Wishing you continued wellness.

Wendy

[MAlegant]

So glad to read this.  And so happy for you. 
Best,
Marci