Hi Cheryl and welcome.
First, take deep breath. The general wisdom with a tumor the size you have is that you have time to make a decision. I live in the Richmond area and will send you a private message with my phone number and email so we can talk directly if you feel it would help.
Second, as I share with you my experience, please keep in mind that it is certainly not the norm. On Dec 31, 2009 I had an MRI at St Francis (in Chesterfield) after experiencing a similar set of symptoms to yours. The following Monday, after a very long holiday weekend, I got the news from the ENT (the radiologist had already told me that I had a brain tumor and that he had contacted the referring physician already) that I had a largish tumor pressing against my brainstem. About 4.5 centimeters give or take...a little larger than a golf ball. From what I had read over that weekend, I knew that radiation was not an option because of the size. So the answer was surgery, the question was where and who?
I was referred to docs at VCU/MCV for the following week. During that time, after reading copious pages on this site, I had found I could send a copy of my MRI to the House Ear Institute (HEI) for a free telephone consult. I did that. I also met with a neurotologist (an ENT specializing in these tumors and surgery) and the neurosurgeon he works with. They outlined their thoughts about how long the surgery would take, what approach they would use, how long I would be in the hospital, when I could return to work, and all that. In between the two appointments I also had two conversations with the docs at HEI. Given that I had a blended family situation at the time with various members with their own disabilities, I wanted to have this done close to home if at all possible. I was able to make that decision because all the docs were making the same statements: 14-18 hours of surgery, 3-5 days in ICU, a couple days in a regular room, and then home and back to work 4-8 weeks.
It didn't work quite that way. I ended up with 32 (or 36 depending on who you talk to) hours of surgery, about 39 hours of waiting room time for my family, six days of intubation, two weeks in ICU, and 10 weeks at home before returningto work. I also had some typical deficits (temporary facial paralysis, eye problems) and atypical deficits (paralyzed vocal cord, swallowing difficulties). But those last ones are very unusual and I had large tumor in a very bad place that was very difficult to get to, but the surgeons just refused to quit until they felt they could really accomplish no more. Ultimately, the feel they removed 85-90% of the tumor.
14 months later I am doing extraordinarily well. My voice is returning, my health is excellent, and most importantly, my family survived. This was harder on them than it was on me. I am doing so well, that in 10 days I will be on the Appalachian trail for 56 miles with part of my scout troop. Life is good.
Third, and perhaps most importantly to you, and keeping in mind that I am not a doctor, neither Gamma Knife, nor Cyber Knife (or for that matter, any of the radiation surgeries) are likely to cause a cancerous tumor. There are a number of people here who can speak more completely about the topic. For my part, I have my 14 month MRI on Monday and if they tell me that "Bob" has started growing again, I will not hesitate to proceed with GK, CK, or the other radiation options.
I had extraordinary care at VCU/MCV and continue to have such. There are some fabulous doctors there. There are also a lot of people here who swear by their experiences at HEI and elsewhere.
I'm glad you have found us, although I'm sorry that you had to.
-Tod
