has anone had gamma knife at cleveland clinic recently?

[maxine]

Hi,

 I"m wondering if anyone has had or considered gamma knife at the Cleveland Clinic recently. I was recently diagnosed with an AN that is about 1.3cm. I am leaning toward radiation although I worry about the potential long-term risk of developing a malignant tumor. The drs. I met with to consider surgery and radiation both seemed knowledgeable. I am sending my records to UPMC in Pittsburgh for a second opinion. The doctor I spoke with in Cleveland does about 25-30 AN gamma knife procedures a year, as well as many other gamma knife procedures for other tumors. I can't remember the exact figure but I estimated he's done about 200 gamma knife procedures. I guess I'm wondering if  I should wait and change insurance and go somewhere that has done more, or if that's enough experience.  By the way, thanks to all of you for posting on the ANA site. It's really been incredibly helpful.  Thanks!

[Jim Scott]

Hi, Maxine ~

I'm sorry you were diagnosed with an acoustic neuroma but glad you found the ANA website and decided to join the discussion forums. 

I can't answer your query regarding the Cleveland Clinic (others will, I'm sure) but I can tell you that the chances of a radiated AN ever becoming malignant is somewhere beyond 1 in 1,000.  Essentially, an infinitesimal risk.   

I underwent 26 FSR sessions on a 'debulked' AN (in 2006) and never worried about the radiated tumor somehow becoming malignant because, although a shrunken 'husk' of the debulked, radiated tumor remains, it's ability to re-grow, much less, turn malignant, died along with the tumor some time ago. 

Jim

[maxine]

Thanks Jim.  I'm glad I discovered the site too. Lots of invaluable information, and it's great to see how many of people are doing well post-treatment -- and how wonderful that you are willing to share your experience and help those of us who've just been diagnosed. I'm looking forward to getting the treatment behind me, and also to getting a hearing aid as I lost all of the hearing in my left ear very suddenly. Do you know if most people wait to get a hearing aid until they've gone through the treatment? I don't expect to get any hearing back in the ear.

[lrobie]

Hi Maxine,

I sought out a 2nd opinion from the Cleveland Clinic as I live in Erie, PA.  The neurosurgeon suggested restrosigmoid.  The radiation oncologist told me he wouldn't recommend radiation for me because of the unknown malignancy issue.  I am 45 years old.  I knew there was a very small chance of malignancy, but I did not want to take the chance as I had been through caring for my father-in-law while he battled brain cancer.  I was also very surprised that the actual oncologist would say that to me.  Anyhow, UPMC is rated highly for their gamma-knife procedure.

As you can see below, I had middle-fossa surgery in Los Angeles on July 18th.  I'm still working through my recovery process which has gone fairly well.

I wish you the best in your decision-making process.

Lisa

[maxine]

Hi Lisa,

Glad to hear you are doing well. Thanks for posting so soon after your surgery. It's interesting the radiation oncologist told you that. I am 54 and at first my ENT sent me to see the microsurgeon.  I liked her very much and felt comfortable with her, but I have three kids and short of going away somewhere for recovery I can't imagine having the surgery and dealing with the recovery period. When I said that the surgeon sent me to the radiologist. My husband came with me to the appointment and asked the radiation oncologist which option he would choose and he said, not surprisingly, radiation, because there are seldom complications with surgery, but when there are, they can be bad.

I guess I am leaning toward radiation but now I'm obsessing about whether I should wait until I can change my insurance and go to UPMC, that seems to have high patient volume and a great reputation, or whether I should do the gamma knife here, where they seem current on the literature, do a lot of gamma knife procedures, and do a moderate number of AN gamma knife procedures a year (this particular radiation oncologist does 25-30 a year.)

Thanks for your input and hope your recovery continues to go well,
maxine

[Jim Scott]

Maxine ~  Re: your question regarding when to obtain a hearing aid:

AN patients who are SSD (Single Side Deaf) either have a BAHA (Bone Anchored Hearing Aid) abutment implanted at the time they undergo the AN surgery or a few weeks later.  Some AN patients wait until they are sure about their extent of hearing loss before opting for either a BAHA or other hearing aid device.  As you can see, there is no hard and fast rule on this.  It's a personal choice.  I'm SSD and don't employ a hearing aid.  It works for me and I accept the limitations.  However, I'm retired and don't have to deal with a workplace environment and I don't have young children, making my choice much easier.  Besides, my 'good' ear works quite well.

There are many threads and scads of information regarding BAHA and other hearing aids in the ANA forum archives.  Just use the search function to find them.  Type in BAHA and you'll see many threads pop up.  In addition, some of our members have a lot of experience with BAHA and other hearing devices and will be glad to share their expertise with you, I'm sure.  Jan B. ('leapyeartwins') is our go-to person for BAHA information.  I'm sure she'll be along soon to help answer your questions about hearing aids.

One note that relates to your doctors comment about the choice between surgery and radiation; although he is correct that AN removal surgery is usually complication-free (mine was) but if there are problems they can be daunting, I have to add that although radiation treatment is far easier and faster, it, too, has risks.  In addition, radiation treatment requires annual MRI scans for many years afterward to ensure the radiated tumor hasn't re-grown.  These are not insurmountable risks by any means but I wanted to make sure that you weren't led to believe that radiation treatment is a panacea.  If it were, no AN patient would opt for the more complicated surgical approach.  I underwent both procedure; Retrosigmoid 'debulking' surgery followed by 26 FSR treatments.  The intent being to destroy the tumor and spare my facial nerves.  It was totally successful.  No surgical complications whatsoever and the radiation, while tedious, was uneventful with no side effects.  Obviously, one persons experience is not a template for every other AN patients experience but I certainly hope that your experience will have a similar outcome. 

Jim   

[rupert]

When a doctor tells you there is a risk of the tumor becoming malignant in the long term, and advises against radiation.  Ask them how many they know about caused by Gamma knife.  Please show proof and statistics.  How many they've ever seen, and how they came to that conclusion. 

Plenty of good advice on this sight.  Take your time making a decision and good luck to you.