Petgroomer,
I have read about your plight and I am sorry I am jumping so late. I had 2 AN surgeries, one in 1988 for a 6x3x3 cm tumor and the second one in 2007 for a regrowth attached to the brainstem. My first tumor spanned most of the cranial nerves, from 3 to 12 and it was huge (I am a very small person with a small head) but I functioned perfectly. Even my hearing was perfect as evidenced by an audiogram before surgery. The discovery of such a huge tumor was quite a shock to everybody. I stood to lose all the cranial nerves affected but lost only the 8th where AN was. So, I was practically in the same boat as you are now, if not worse. Who could predict that I would have the second surgery on the same already damaged cranial nerves and it would work out? That was a difficult situation, too, not so much comparing to the first surgery (that was no comparison - first situation was infinitely more challenging) but comparing to what people go through with AN now. Nevertheless, I made it and this should give you hope that you will make it, too.
I met with a lot of surgeons and radiation specialists during my AN adventure. I also did not like what HEI told me, so I did not go there. I do have the utmost respect for them and all other surgeons who spent their time consulting me. I feel they clarified and explained the situation so I eventually could make the right decision. I never spoke with Dr. Fukushima and I am curious as to what he has to say. I ended up at SBI for my second surgery after so many surgeons gave me poor odds and one even refused to see me even though he was highly recommended on this board. Don't get me wrong. Dr. Shahinian at SBI is no magician and he might not be the right person for you after all. Just because my surgery worked out is no guarantee that yours would, too. At this point, though, a consultation with him is very worthwhile and I would love to know what he thinks. There is one other doctor in NY whom I seriously considered. That is Dr.Sen at St. Lukes Roosevelt hospital. Let me know if you have trouble finding his phone number. I can help you with that. Both Dr. Sh and Dr. Sen seemed to me to thrive on challenge (don't we have plenty for them) and both took out very difficult tumors when other doctors refused.
From my consultations and experience, I doubt that any surgeon in the world can remove such a huge tumor in its entirety while keeping the nerve it is on.I could be wrong on that one. However, they can remove most of the tumor while preserving the vagus nerve. The nerves 9,11, and 12 should be spared. The tumor thus can be debulked with a little being left on the vagus nerve from which it originates. If the remainder starts to grow, it can be radiated. Vagus nerve is more robust than facial or hearing nerve and is VERY resistant to radiation, as I was told by radiation specialists. Small size of the remaining tumor means that other nerves will get a minimum of radation and therefore a minimum of damage. Moreover, the total amount of radiation needed will be minimum as well. You might experience some vagus neve damage but it can be definitely lived with. It is not the same thing as the vagus nerve absence. By the way, which side is your tumor on?
I hope everything works out for you. You are facing a challenge, for sure, but I don't think your situation is impossible. There is a lot that can be done. Best of luck!
Eve
