Numb tongue after Gamma Knife

[kathy g]

I just had (5/20/09) GK in Fremont, CA and  I wonder how long/if some of my symptoms will take to go away, like the dizziness and the numb tongue?
Is there any alternative medicine that I can do to make the healing go faster?


So far, I do not notice anything different, which worries me.  My next MRI is in August.

Kathy

[mk]

Hi Kathy,

I wouldn't expect your symptoms to resolve so soon after treatment. After all the AN is still there, and still pressing on your trigeminal nerve (which is causing the numb tongue), vestibular nerve, etc. I am now a bit more than a year post-GK, and my numbness is still there - I don't expect it to go away either knowing the nature of the treatment, just hoping that it won't get any worse.

My understanding is that if you don't notice anything different, this is good news. I was worried that the treatment hadn't worked, because I didn't experience any symptoms, but I was told that if everything is going well (i.e. no swelling etc), then I shouldn't be feeling anything out of the ordinary. They were right, since both my 6 month and 12 month MRI showed necrosis and stable size.

You are still early in your journey post-treatment, so hang in there. Be aware of any increased diziness when turning fast your head from one side to another, and of any sudden hearing loss or sudden onset of any other symptoms. Report anything like that right away to your doctors. In the meantime, no change and no news is good news. Vestibular therapy has helped quite a few people here with their balance issues and I found that warm compresses and ibuprophen help ease the odd sensations due to the trigeminal nerve irritation.

Marianna

[Betsy]

Hi Kathy,

Did you have a numb tongue and dizziness before GK too?  Before I had my treatment, my doctor told me not to expect much improvement, because the nerves had already been damaged.  The goal of radiation was to kill the AN, but it wouldn't reverse any damage that had already been done.  However, my tongue numbness DID get better gradually, and now it hardly ever happens anymore (mine wasn't constant though).

Overcoming the dizziness took some work, but vestibular therapy really made a difference.  The physical therapy works pretty fast, at least it did for me.  Plus, it felt good to be doing SOMETHING positive during a time when so much was out of my control.  I've also heard Tai Chi is good for balance.

You might not see much change on your August MRI.  Radiation takes time to work.  I had a 5 or 6 month MRI and it was unchanged from the time of treatment.  That was actually good news, because the AN hadn't grown.  Then on my 18 month MRI, it showed necrosis and shrinkage!

Have you talked to your doctor about your concerns?  Let us know what he or she says.  In the meantime, take good care of yourself.

Betsy

[kathy g]

Thanks so much, it really does take a lot of patience. It is good that this is normal. The doctor is in SF and I just saw him for the GK, but I will try to talk to him. THe doctors often do not know what it is to experience this.

 I had a numb tongue and dizziness before.  I have been taking mushroom powder that an acupuncturist recommended, not sure if they are doing any good in terms of decreasing inflammation.  I will try the therapy for dizziness.



Kathy

[sarahinPA]

Hi Kathy,

My doctor told me that my symptoms could get worse before they get better with GK. it may swell up, but my swelling went down after about 4 days ( i think my symptoms started to reduce) but they still come back stronger than the everyday symptoms that i feel. I was also told by my neurosurgeon and Neurologist that my tounge numbness could be from nerve damage and it may or may not go away, and nerves are the longest part of your body to heal. nothing they knew of to speed up the process, good luck and stay strong

[kathy g]

Thanks so much. Do you still have numb tongue and dizziness?  How long ago did you have the GK?  Do the side effects still come back?

[sarahinPA]

Kathy,

I had GK on Jan 12, 2009..in pittburgh, pa at UPMC. my 6 month mri is july 1st my tounge is still numb sometimes, i think it may be there all the time but ive gotten so used to it i dont feel it always. When i get stressed or really tired i cal feel it more. Also i do get dizzy and off balance sometimes- usually when i go up stairs. ive been doing yoga wich has helped a little bit with my balance issuse but still is discouraging to not be able to balance well. Ive been told it all takes time so hang in there and if you or anyone know of any natural remedies to support nerve growth please please pass them along!