4cm AN that
turned out to be a 2.5
My name is Robbie Wigley and I was diagnosed with a 4cm AN that turned out to be a 2.5.
I would like to fill you in on the progression of my AN issue, but before I do I want to state that the choice you make is your own. No one can tell you what is best for you. I just feel that it is incredibly important to research and explore every option before you make a decision, so that whatever you choose, you go into it with the very best and most positive attitude possible. You then become a part of the team and are your own best resource for healing.
I was diagnosed with a 4cm tumor in July. I had just been with my son in New York for 2 weeks for emergency spine surgery (a failed fusion from a car accident 4 years ago), returned to Minnesota and 3 days later spent a week in the hospital with my daughter for scoliosis surgery. I was encouraged by my chiropractor to see someone about the off balance condition I continued to have. I was diagnosed within 3 days and had an appointment with a neurosurgeon within that time. I was scared and agreed to pursue surgery at once and was scheduled with an ENT for the week I returned from the second trip to New York, in August (I needed to be with my son for another surgery at the beginning of August).
Needless to say the stress level was high. At that point I attacked the Internet. I found many sites, and continued to explore the options I felt I might have. I looked at:
Staten Island, http://www.siuh.edu/radoncology/acoustic.html
John Hopkins http://www.med.jhu.edu/radiosurgery/trial/acoustic/nf_acoustic.html
House Ear http://www.hei.org/welcome.htm
Mayo http://www.mayo.edu (do a search on their site)
as well as a local neurosurgeon who does about 100 ANs a year.
I saw both a neurosurgeon and radiosurgeon at Mayo and was not at all happy with the way I was treated. The surgeon would not talk to me and spoke only to my husband even if I asked the questions. Mayo is a great place for some stuff but I couldn't see myself there. At this point I still thought the only option for me was surgery because of the size.
When I went to New York in August, I took a train to Providence RI hospital (http://www2.lifespan.org/services/gammaknife) to see Dr. Noren. He has done Gamma Knife on many ANs but has developed a fractionation of the protocol explained by Victoria Meyerink. Dr. Noren was puzzled as to how the measurement of the tumor was done. He said it was a 2.5cm, and while large, it was well within the limits of considering radiation. I think I have discovered why this size misconception was never corrected by the others I saw. The surgeons categorized it as a large tumor, and they take them out, so size did not really effect anything they were recommending. With radiation there really is a limit to the size they consider for the procedure. Any way for what ever reason.... I now had some choices.
I saw an Neurotologist who trained for many years at House Ear and was very good to consult with. He told me that he really recomended surgery because that is what he does. He also said that with the research I had done, he would not tell me that it was the best for me. He said that it is possible that within 5 years they all will be doing radiation and he was open to learning all he could. He was really interested in what I decided to do and asked to follow my case here in Minnesota. I was elated, because I was concerned that should something go wrong, I really needed someone here.
This is my thinking for choosing Fractionated Gamma Knife with Dr. Noren; each person has to follow his own path to health.
The down side was wearing the head frame for 5 days and staying in the hospital, and getting my insurance to cover it. The insurance was really done by the people at RI. It seems that the procedure and hospital stay will be covered. Everyone's insurance is different though.
On Oct 1, 2000 my husband and I left MN for RI. We stayed in a nice little historic B&B close by the hospital. The Gamma Knife unit is a part of Brown University School of Medicine. I went into the hospital on Oct 2nd.... had the head frame attached (which was not as bad as I anticipated).... had the MRI, CAT scan, and other measurements done. We were able to trace the path of all four of the nerves involved with the CAT and MRI overlay.... taken with the head frame on, it was amazing.... therefore avoiding them and hopefully not damaging them. We were also able to achieve complete coverage of the tumor without over radiating any part of it. I saw the complete protocol before anything was done.
Dr. Noren developed the procedure to treat my tumor.... angle, number of times etc and then I received the first in a series of 5 treatments. I went into the Gamma Knife 23 times for intervals of between 18 seconds and 4 min. Each time they made about 8 adjustments to the headframe which targeted the radiation point. There was a neuroradiologist, a radiation oncologist, a medical physicist and a specially trained nurse, all supervising the administering of the radiation. The staff at RI was fabulous and caring, and I was very comforted by Dr. Noren. I was given relatively small doses of steroids for swelling and really felt pretty good through out the entire treatment. I wore the frame for five days and frankly would have worn it for longer if it meant saving my hearing. Aside from being tired and not being able to lay my head on a pillow (it is a trick to figure out how to sleep), everything was easy.
Here is my album with the pictures we took for my kids so they were not so freaked. I was the 8th person to have the Fractionated Gamma.... I met the 6th person when she came in for her 6 month MRI. Her tumor had already began to shrink.
We are now waiting to see when my tumor will die and start to shrink. I am taking it one day at a time. Some days I feel really good and then the next I don't. So far my hearing, facial function, trigeminal nerve are all uneffected or no worse then before. I still have many of the symptoms I started with: balance off, tingley mouth, spots of numbness.... However, the quality of sound I hear in my left ear seems to be better. Some of the numb spots are better; I am seeing some return of feeling around my ear, which is where I first noticed the numbness. I am taking a good multi vitamin, ginko, and grapeseed extract for circulation in the brain. I am also seeing a Chinese MD that is doing acupunture and chinese herbs... The tinnitus is probably damage to the brain and not in the ear at all and at this point is pretty loud. I am hoping that it settles down.
I feel I made the best decision for ME. Some people find it hard to deal with having a tumor and not removing it. I do not feel that way, so this made perfect sense to me. I am assuming that with any treatment, surgery or radiation, it still takes about a year until we know what we are dealing with, what are the long-term effects. For me, time will tell. I can function and as long as it doesn't get any bigger I will be happy.
Robbie Wigley <robbie AT gofast.net>
Last Edited: Friday, November 01, 2002