desperate for help

[Blazee]

Greetings, a little history & then my plea for help.
4.5 yrs ago I had GK since then my tumor has not gotten any bigger. Right after the GK my face felt numb on the side of the AN. I developed dry eyes & mouth. 9 months ago I started to have at times facial spasms, facial twitching & severe stabbing pain in my ear ALL in the AN side. 
Per my medical Dr went to a Neurologist, he said " I don't know maybe the tumor should come out go see the surgeon".  My surgeon has said "it is not the tumor causing the problems because it has not grown, I don't know what it is! go to see a neurologist"

Is there ANYONE who has had these problems 4 yrs after GK??? what do I do??? where do I find help???
Has anyone gone to a Neurologist @ Thomas Jefferson in Phila PA??? after GK???
thank you all for helping - I am so depressed
Diane

[Patti]

Diane-How big was the tumor? From what I understand, the goal of GK is just to stop growth.  Maybe it is the tumor causing the problem.  Patti

[kentcorbin]

I'm so sorry to hear you are going through this. 

It seems like more opinions are called for. I hate to contradict medical professionals, but I am skeptical that anyone can say "it is not the tumor causing the problems because it has not grown." ANs of any size can produce impressive symptoms.

Also (according to one of my doctors) its pretty difficult to say conclusively that an AN "has not grown." There is about a 3mm depth change between each MRI slice, which leaves a margin for error in measurement. Any change in size, even tiny, might (I should think) be capable of causing new or worsening symptoms.

All of this to say that meeting with other surgeons and other neurologists might be a good idea. I hope you find some relief.

[ppg01080]

Get a second opinion. My tumor is small but is causing several symptoms. My surgeon's response was that my nerves are getting tired. According to him your symptoms can get worse without tumor growth.
Patty

[Blazee]

PPG could I ask what symptoms?? 

[ppg01080]

I have hearing loss in my right ear, taste issues, balance issues, tinnitus and have had 2 episodes of vertigo.

[Blazee]

TY having also the same issues & have developed trigeminal nerve neuralgia this is all so scary & isolating

[ppg01080]

I had a colleague tell me I heard what's going on with you and you'll be ok. I'm grateful that I'll be ok but the symptoms can be very debilitating and isolating. I started vestibular therapy and I feel better because I feel I have some control.