Hi everybody,
I have a recurring AN. The original 5mm tumor was retrosigmoidally operated in 2001. I had a CSF leak, and lost hearing on that side, but there was no damage to facial functions. Recovery was long and very painful, over one year of daily debilitating headaches.
The removal was partial, with some residue seen on the first post operative scan. Follow ups demonstrated a 5mm growth within a span of 10 year, from 5mm in 2002 to 10mm in 2012.
The latest scan revealed a much faster growth rate - the tumor had grown by an additional 10mm within just 21 months. It is now 20mm and protrudes the CPA. I have no facial weakness, headaches, dizziness, or vision problems.
It is also worth mentioning that on the opposite ear I have a substantial and progressive hearing loss and tinnitus, but no tumor has ever been observed on that side.
Of course my main concern now is preservation of the facial nerve, and removal of the tumor, or at least stopping its growth. My legs start shaking at the mere thought of going through surgery again, but seems like most doctors think that's the best way to go now. I guess any other idea will be helpful.
As for surgery, surgeons that were recommended to me are Dr. Brackman at the House Clinic, Dr. McKenna at the Massachusetts Eye & Ear Infirmary, Dr. Roland at the NYU Medical Center, and Dr. Mario Sanna in Italy. I know that Dr. Brackmann is considered number one for resection of Acoustic Neuromas, and is both very knowledgeable and a pleasant person. One neurosurgeon I consulted with feared that damage from the previous surgery might make the upcoming one harder, with a higher risk to the facial nerve.
The other alternative is radiosurgery, with Dr. Lunsford at the Pittsburgh Medical Center recommended as top choice. Thing is, I understand that sometimes tumors expand after irradiation, and that they might continue doing so for up to 3 years before the treatment is considered a failure, in which case I might find myself facing an even larger tumor. I also read that irradiation complicates salvage surgery by means of tissue scarring and tumor adhesion to healthy tissue.
Another option I read about is proton therapy, but the volume of treated patients seems much smaller, and I encountered no concrete comparisons with other treatment strategies, nor research regarding the long term effects of this approach.
Yet another option I encountered is minimally invasive surgery, but the doctors I spoke with so far say this is still a new approach that has not yet accumulated enough experience and statistics. I also don't know who performs these surgeries, except for the Skull Base Institute in LA, which I was warned not to deal with.
To make things a bit more complicated, my wife and I are expecting a baby 2 months from now, so that means either go for the earliest available date for treatment, or wait with a fast growing tumor for 4 more months or so.
So, can anyone share any helpful insight into the above dilemmas? Can anyone suggest other treatment strategies? Does anyone have experience or knowledge about the doctors and medical center I've mentioned?
Thanks in advance!
