Gamma knife failure

[Andrewsworldrocks]

Hello I'm Drew,

I was diagnosed with an acoustic neuroma late 2013. I had the gamma knife procedure August 2014. Now it's March 2015 my follow-up MRI I was told that the tumor was still growing. My only option now is to have surgery I was wondering if anybody else on here has had the gamma knife fail and if you have the surgery done what was the outcome?

[Mimispree]

Hi Drew:

I'm sure others who had GK will reply to your post, but I wanted to say I'm sorry you have to continue in the uncomfortable hallway between discovery and removal of your tumor.  There are so many surgical success stories and I look forward to reading about yours.

Be well,
Michelle

[SueLL]

Drew - How large is the tumor now?  How are your symptoms?

It is my understanding that it takes about two years before you can see the full results of GK - although recently someone mentioned that time span might be even longer.  It is a very slow process and swelling in the first year is very common.  I'm sure you'll receive some very good replies to your post, so please do some research and possibly get another opinion before jumping into surgery.

[Andrewsworldrocks]

Yesterday i had the appointment with the neurosurgeon to go over the results of my latest MRI. According to him the tumor is approx 30 percent larger in mass and still growing. I asked if there was some mistake because the GK facility assured me it was gonna be fine. I started getting even worse symptoms. Really bad dizzy spells, headaches, increased ringing in my ears. Unsteady. The doctor concluded with the only option being surgery to remove. I'm just at a loss mentally right now.

[Andrewsworldrocks]

I will also add that my symtoms have been really bad. The dizziness comes on suddenly and out of nowhere. It's terrible. I don't drive much anymore because of it. I knew something was wrong because my symptoms have gotten increasingly worse over the last 7 months since the GK.

[Echo]

Hi Drew,

Have you reviewed your MRI results with the specialists at the GK Centre where you had your treatment?  Is the neurosurgeon you met with fully experienced with GK treatment and it's results? There are many specialists out there, and some with substantially more experience than others regarding Gamma Knife.  I would not jump into surgery without a second consult. 

Prior to my GK treatment I met with neurosurgeons who knew about GK, but did not perform GK.  I then found a neurosurgeon who excelled at both surgery and GK.  He made it very clear to me that it could take 2 to 3 years before he would confirm if my GK treatment had been a success.  He told me that swelling could come and go throughout that time frame as well as a host of symptoms and that everyone reacts differently to receiving radiation. 

During the first 3 to 10 months post treatment I had a substantial amount of trouble with my balance, wonky head and ocular motor issues.   I couldn't walk a straight line, I felt exhausted all the time and walking at night was terrible with lights and buildings bouncing all over the place!  Grocery shopping was horrible, scanning shelves looking for specific products made me nauseous.  Somewhere around the 10 - 12 month time frame I started noticing huge improvements.  I am now 1 1/2 years post treatment and feel great. I feel like the worst is behind me now and I'm no longer having the issues I mention above. 

I would strongly recommend a second consult prior to making any decisions.  You may just have a tumor that is swelling aggressively and perhaps a round of steroids would help to settle things down.  Worst case, the tumor is growing and surgery becomes your only option, but I would move forward at this point with caution and make sure you aren't jumping into a situation that is not necessary.

If surgery is required, make sure that your neurosurgeon has lots of experience removing AN's.

Best of luck and let us know how things go.
Cathie

[Andrewsworldrocks]

Yes, same neurosurgeon as GK, UCLA medical. I do know about swelling after GK. I specifically asked if it was post swelling or growing. He said its growing. I am consulting with another neurosurgeon at UC Irvine. Wish it were just swelling.

[stoneaxe]

I had regrowth 3.5 years after proton beam......different juice but juice. Same kind of problems as what your talking, bad balance, headaches, tinnitus was a brass band. Surgery the second time around. Headaches lessened, balance actually improved though I had done lots to mitigate my balance problems otherwise. My tinnitus is now a steady state tone a little less intrusive. Headaches are less also. There are some tradeoffs I have some minor issues from surgery but I'm better overall. Definitely get more info before jumping but if you do have to jump coming out the other side can mean improvement.

[Andrewsworldrocks]

Hey all, Drew here.

Just want to update you all on what I'm going through. Since I last posted. I have consulted with 2 ENT's and 2 neuro's. Bottom line due to the severity of the symptoms and the increase in size in the last 7 months. The tumor has to come out. I have an appointment to meet with a surgeon at the house ear clinic in Los angeles this week to set a date for removal. Don't want to do this surgery. But, the impact this has had on daily life is excruciating.

I know all outcomes for gamma knife are different for all people. If I had a do over I would have had it removed surgically before; when it was smaller and due to my age from the professionals I have spoken with younger people may not want to opt for the gamma knife procedure. Too late for that now. I will continue to post as I go through this experience.

[Andrewsworldrocks]

I would also like to thank all of you for posting your views. It is nice to have a site for this type of thing. I am grateful, woo hoo.

[MG]

Wishing you the best of luck Andrew. My thoughts and prayers are with you for a speedy recovery.

MG