ANA Discussion Forum
Archive => Archives => Topic started by: Paulette on May 05, 2005, 03:40:14 pm
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My name is Paulette Martini and I am diagnosed with Acoustic Neuroma resulting from a MRI I had last week. To me, the Gamma Knife Seems the best way to go rather than microsurgery. I would appreciate some input. Doctors also welcome. my email is: mimirules24@aol.com.
thanks
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Hi Paulette,
I was diagnosed with a 12x18mm AN the first of April and have spent the last month doing the research. This list is great and the advice of taking your time to see what is best for you is absolutely true. I dismissed surgery after learning what is involved. I have a friend who had the surgery in Cleveland and has not had any problems other than the hearing and balance loss. One friend of a friend has a lot of problems two years after the surgery. The key does seem to be experience, experience, experience!
I am opting for FSR at Johns Hopkins after having a consultation with Dr. Rigamonti there. I am in Columbia, South Carolina and we have a Gamma Knife here but they have only done 81 of these treatments. I have a doctor friend whose wife had her AN treated here two years ago and her AN has been reduced to the size of a pea. So, all the treatments have good and not so good results and you have to do your homework and decide what is best for you. I am talking like I am an expert and I am definitely not as one month ago I had never heard of Acoustic Nerouma but I have imposed on a lot of folks on this list and others who have given me wonderful advise like make an informed decision and get comfortable with it and don't second guess yourself everyday! This seems to be one of the few medical problems where the patient has so many options and decisions to make. I am used to the doc telling the patient here is what you have and this is what you have to do. I am lucky that I am retired so I have spent full time on this and I am comfortable with my decision and am prepared if my choice of treatment does not work and I have to have the surgery. Dr. Rigamonti is very clear and straightforward about the options for a failure with the FSR.
I wish you the best with your decision.
David Jameson
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Sweetie, contact Dr. Thomas Graham...903-595-2441. I have a large AN against my bran stem, and he saved my life with th x-knife treatment. Bless your heart....Karla
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Hi Paulette!
You wrote: "To me, the Gamma Knife Seems the best way to go rather than microsurgery."
How is it you decided this?
Best wishes for the wisest choice which should consist of 2 or 3 opinions from both neurosurgeons and radio-oncologists.
Russ
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Look into x-knife radiation, it is better than gamma. Good luck...Karla
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Hi Karla
Seems "x-knife" is a brand name for a linear accelerator used mostly in FSR. http://www.irsa.org/linac.html It can be used like a GK unit in one setting however. It would not have the cobalt pellets. I think if "x-knife" were to be superior, it would depend upon whether it is used for 'radio-surgery' or 'radio-therapy'.
Take care! -Russ
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Hi Russ, When an AN is treated and not removed, there is always a chance that it can someday start to grow. The Gamma leaves the tumor very hard and tough, and if ever the tumor had to be removed, it is much more difficult, and side effects much worse. It is considered the "old" way to treat not remove an AN. The x-knife, is either a one time strong amount of radistion given, or it can be given in small amounts over a few weeks. I choose the one time strong amount. It kills the blood supply going to the tumor, and if the tumor does start to grow and surgery then is the only option. The x-knife leaves the tumor very soft, kind of mushy, where removing it is much easier and much better recovery. Dr. Graham and Dr. Kolker have specialize, and have done the x-knife procedure for over 10 years. Dr. Kolker use to work out of Chicago, and he told me that Dr. GRaham and his staff is the best he has ever seen. I saw two doctors in Dallas, that only did Gamma or cutting it out of my head. These doctors in Tyler are wonderful, I had a MRI a couple of weeks ago, and my tumor as responded in one year, what they were hoping in three. My AN was large and against my brain stem. So, I thank God for these wonderful doctors who treated me. Karla
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Karla,
Just wondering how big was your tumor?
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My tumor was a 2.5cm...Karla
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Dear Paulette,
It seems wise to get a few opinions from your doctors and make sure your doctors have done plenty of the surgeries and/or can show you the relative rate of success. Deferring to the surgeon (as long as you have faith in him) is recommended.
Microsurgery is very successful and ressection of the tumor is usually the rule rather than the exception.
It's my understanding that the surgeon will recommend treatment/suregical options based in large part upon the size and location of the tumor.
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By- the-way Paulette, I meant to tell you that the doctors that did the x-knife on me, has only had one patient that had to have the tumor removed. When the tumor receives the radiation, it will swell slightly from the treatment, then start to reduce in size in time. When I had my x-knife procedure, Dr. Graham and his staffl, were ready with a surgical room, just to be prepared. Dr. Kolker did the radiation. One time during the radiation treatment, a man's AN started to swell too much, and they rushed him right into surgery. But the radiation he had already received, left his tumor very mushy, Dr. Graham told me that it was easily removed, and he recovered very well. But, this man,s tumor was very large to begin with and against his brain stem. I can't remember the exact size of his tumor, but I know it was over 3cm. It will take up to 10 years for my tumor to die, but my tumor was a 2.5 cm against my brain stem, now a year later after the x-knife, my last MRI shows it has shrunk to a 1.5cm. I was lucky to have doctors that were honest with me and answered my questions. I do not have to have another MRI until a year from now. Yea!! I hate contrast, it makes me feel dizzy and sick at my stomach. And with the balance problems from the tumor....who needs to be extra dizzy. After a MRI with contrast, I walk like I just polished off some tequila. haha That is why I am lucky that I have loved ones to help me get home. I hoped I helped in some way sweetie, but it is your AN, your future. You do what is best for you. Research all options..ask many questions. Sweetie hang in there, it is hard I know. If you ever need to talk teacher2b@prodigy.net Take Care and God Bless!!!! Karla