Problems after gamma knife treatmentl

[miltonpool]

I am checking to see if anyone has had the same problems I experience after my gamma knife.  When I had the surgery I was just having hearing problems.  Three months after I began having balance problems, empty ear feeling, feeling bad.  When I had cold the problems got worse.  Sometimes hard to take.  Its been two years since th surgery and I still have bouts of dizziness, balance problems, feeling bad.  Has anyone else experience this after surgery?   MRI's show it has not grown but also has not srunk. milton pool

[PaulW]

I guess what you are describing are fairly common symptoms for people with AN's both before and after radiation.
I certainly had a lot of those things before treatment. Gamma Knife does not stop the tumour instantly it can take years.

As for the tumour shrinkage my understanding is that lack of shrinkage at two years is pretty meaningless.
What is important is that it does show significant growth at 3 years. Most tumours will show shrinkage at 5 years.

Shrinkage, necrosis, and death of the tumour may seem to be nice things to have in theory with radiation, but are actually unimportant.
The idea of radiation is to give it just enough radiation to stop it from growing, and to do as little damage to surrounding tissue as possible. My personal opinion only, I think what you are going through is pretty normal.

Tumours shrinking rapidly and necrosis can actually cause problems.
In years gone by when higher radiation doses were used rapid necrosis was common.
Having a dead piece of meat in your head caused issues and often meant surgery.

Of course don't take my word for it, please talk to your doctor if you want real medical information.
 

[Tumbleweed]

It's not unusual to have symptoms 2 years after radiation treatment. I sometimes still get symptoms, over four years out. But they become increasingly less frequent and more mild as time goes by. You can reduce the severity of your symptoms by leading as healthy of a lifestyle as you can manage. That means no alcohol, coffee, smoking, refined sugar, etc. and getting plenty of exercise and sleep.

I respectfully disagree with PaulW about tumor shrinkage being unimportant, although I suspect he was overstating to reduce your anxiety. While many tumors don't shrink after radiation treatment -- only about 25% of CK patients at Stanford University Medical Center see significant shrinkage over time -- shrinkage is a good thing because it can take pressure off cranial nerves that were formerly impinged upon before treatment. That said, tumor shrinkage is not necessary for treatment to be deemed successful. The most important goal of treatment is that the tumor's growth is halted. That appears to be true in your case, and it's a reason to celebrate and be thankful. Now, become a "health and fitness warrior" and you'll begin to feel much better over time.

Best wishes,
TW

[miltonpool]

Thanks PaulW and Tumbleweed.  I thought it was odd that I didnot began the symptoms of everyone else until after the gamma surgery.  It was about 3 or 4 months later that I began having the problems.  I guess maybe the neuroma must have swelled up and died after the surgery.  I have good days and bad days.  The bad days are more than the good days.  I cannot understand this since the darn thing is suppose to be dead.  My Dr. has left it up to me as to have it taken out.  On bad days I think about calling him and asking for surgery and on good days I think well maybe its over.  I really don't want the surgery because I'm afraid I will lose all the hearing in that ear.  The hearing in my other ear has gone way down. I have troubles enough hearing as is.  Thanks guys for your imput.  milton pool

[Tumbleweed]

Milton, it's possible that the symptoms you're having are due to (vestibulocochlear) nerve irritation from the radiation or from the tumor producing inflammatory compounds as it died (you could try taking some anti-inflammatories such as ibuprofen, and see if that helps your symptoms abate). Or it could be that the tumor did some additional damage before it completely died (damage that it would've done regardless had you not sought treatment).

If you were to have surgery now, you would likely only exacerbate your symptoms further, because it would further traumatize the cranial nerves the (dead) tumor is adhering to. Since the tumor hasn't grown since your treatment, you don't need to worry that it's putting any greater pressure on the cranial nerves, all the less reason for having surgery to remove it. I would suggest you just leave well enough alone and give yourself another couple years to heal. It takes time. Surgery is generally more traumatic to the cranial nerves than is radiation. You don't want to aggravate your symptoms any further.

Be proactive about your overall health and have faith your body will heal over time. You can do it!

Best wishes,
TW