Most major decisions in our lives are somehow based on this, right? So here I am, with a new MRI showing growth and my neurotologist recommending action - either surgery or radiation. He has, in the past 6 yrs, started doing GK himself, in addition to surgery.
I'm curious how and at what point in your research did your gut feeling kick in ... and, importantly, did it ever change once it did?
Oh my yes! I often decribed it as "kelp" in the ocean. Without getting into a semantic debate over gut or not gut, the reality is that ultimately it is our body and we must make the best decision with the information we have at hand. How lucky people are to be technologically savvy enough ( I say that because the typical age is middle age at diagnosis. We are all digital immigrants not digital natives like those young uns out there).
I learned about facilities and treatment types more from folks on this forum (or listserv) that I would have not known otherwise.
Our tumor
size, location and our age are going to be part of the decision making process. Some by nature of the size of his/her tumor are limited in choice.
I have never met anyone who didn't want to be the same after a treatment as they were before a treatment. I looked at patterns in the posts and I read about outcomes relative to treatment when coupled with size of tumor, and I asked the doctor "how many of this surgery he had done" and "how many of that they had done" and his/her statistics relative to hearing and facial nerve.
When I first learned of my acoustic I was referred to an ENT. I thought with certainty that I would go to a research hospital in Chicago.That lead me to a doctor who although did not do treatment himself had trained under a doctor who did. I also asked around and learned of a renown neurologist at a well known hospital and was featured as one of Chicago's best docs... However, I learned that it was not he who was known for AN's, it was another colleague at Loyola. When I contacted this organization, I learned about Mary (she was a godsend) who was my WTT person and she gave me names of the two most used doctors in Illinois. I consulted with both of them. I learned about House and sent my MRI's and report there. All in all, I consulted with multiple surgeons.
I did make contact through email with a GK doctor out of UPMC and and sent my MRI's to a FSR doctor (Cyberknife was just coming on the scene in 2001). I ended up making contact with both radiation and surgery treatments. I learned something from each one.
Here were a few of the patterns I found: (through my consultations and research experience)
1. It is documented that in surgery the shorter one can be under, the better. I found in my research that House Ear Institute's surgery time was almost half of what other institution surgery times were meaning you were "under" for a shorter period of time. Typically, they are between 4 and 5 hours. There is a thread about this now in this forum.
2. Just because a doctor tells you there is a high rate of hearing preservation, ask for his stats and ask around. Although the doctors I visited in my own area discussed the retrosigmoid surgery as "hearing preservation" ( I had 100% prior to surgery), in all the folks I met, not one in Chicago had their hearing preserved with retrosigmoid (not to say I met them all:-) (and I know there are examples in this forum of some who did). Yet each of those folks went in hoping to preserve hearing. I also went to an eye doctor used by the folks I use in Chicago and he said I was a surprise as the patients that come to him after AN surgery did not keep any hearing.
3. Regarding side effects: It seemed that the most longterm "headaches" (after the healing process) came from those with retrosigmoid and I found research to confirm that. (~10%)
4. Radiation doctors state that it is no more complicated to have surgery after radiation then it is before and surgeons ABSOLUTELY disagree because the area when radiated is "burned". I asked the House Surgeons and they explained why it was more difficult.
5. Work with your insurance company to try to go to the facility of your choice. In my case, the insurance company assigned a case manager and after contacting House, House agreed to be an "in network" provider even though they were in California and I was in Illinois.
6. Regarding radiation: Gamma Knife has the most history and research behind it.
7. Surgery effects were known typically within six months while radiation effects are often not known until 2 years later.
8. All doctors have their prophets depending on individual outcomes...look at the statistics relative to all of their patients.
9. There are times that no matter how thorough we are, unanticipated consequences happen.
10. The time to question yourself is prior to making a decision...Once you make a decision with the best information at hand, don't look back and second guess yourself...
11. Sometimes "fear" relative to one treatment is used by others as the "reason" to have the other type of treatment.
12. One size does not fit all.
13. Until your tumor is treated, you won't know your outcome...no matter how much you read.
In the end, I tried to match the patterns with the tumor and my best hopes: facial nerve preservation and usable hearing (and in that order). I also looked at the patterns with residual side effects. So mine was a combination of research for information and patterns and then matching it to my best hopes.
I have also started a thread about the decision making process to help bring clarity about what is important to each person. I called it "One Size Does Not Fit All."
http://anausa.org/forum/index.php?topic=9601.0All the best to each of your trying to figure out your own path.
Kate
