Sterotactic radiation

[Larry]

3 years ago I had an AN removed removed and it has now been diagnosed as having returned. I still have a little hearing left in that ear but further surgery would sacrifice all my hearing in that ear and of course worse tinitus. The other option is sterotactic radiation treatment or Gamma Knife as it is called in the U.S. I was wondering if anyone could share their experiences with returning AN's and also radiation treatment

cheers


Larry

[jcinma]

I had surgery in 1996 and lost all my hearing. Post-op report stated total removal.  A year ago I was diagnosed with a reccurrence (3cm).  I had surgery this past February to debulk and I followed up with FSR.  My goal was to preserve the facial nerve (succeeded) I have my first MRI in November and needless to say I am very anxious.  I chose FSR because what tumor remained was adhered to the facial nerve and I didn't want to jeopardize the nerve.
Jane

[sdinapoli]

Jane, Curious to what approach they used in 96' also any idea why the second tumor grew twice as fast than the average??

[jcinma]

In both procedures the retrosigmoid approach was used.  Back in 96 both my surgeons (ENT & Neuro) were optomistic about saving my hearing but unfortunately the tumor had wrapped it self around the nerve.  No one knows for sure why the tumor grew so rapidly.  I strongly believe it had a lot to do with the hormones that I was taking to control uterine fibroids.  For years the medical society has said that the AN tumor is not a hormone receptor but my ENT said he was beginnning t have his doubts.

[Larry]

I understand that AN's have strong growth spurts and then may stay dormant for an indefinate period of time. Its quite remarkable reading people's experiences with AN's. They differ widely. One treatment may be suitable for one person but not another due to other complexities.

Anyway, I'd also be interested to know if anyone experiences headaches without a lot of relief. I've had them for 3 years and the only drug that seems to have an affect is neurontin. I've tried all of the standard painkillers and anti inflamatories.

Jane, good luck with your MRI in November. I will be having one then as well to see if my regrowth has got bigger. Big month coming up.

Larry