Radiation the Right Choice?

[Bax]

I am in my 50's and am trying to make a decision regarding whether or not to consider radiation.

Is this a very effective method--has anyone had success with this?

[Sheryl]

A website that may help with your decision is: www.cyberknifesupport.org  You can actually post a question to a doctor who will answer in a short period of time.  I have "waited and watched" for 3-1/2 years and am now leaning towards radiation.  Good Luck.

[sallyschindel]

I did Gamma Knife at Barrow Neurologic Institute in June 2004 for a 1.5 cm AN.  I could not be happier with the result.  It was outpatient in the morning, I had lunch out that day and worked in the afternoon, my 6 mo. MRI showed a little shrinkage in the tumor, no headaches, no facial nerve damage.  Negative side effects were very few - weird tastes for a couple of weeks, some little shooting pains through the radiation area from time to time but they are NOTHING, not like a headache at all, just little shooters.  The most significant change has been some loss of balance, especially when fatigued, difficulty turning on a bike, vertigo when I push a hike or climb or bike ride.  But that is all getting better with vestibular exercise, has not been very limiting or at all dibilitating.  My age is 55.
A year after my sudden hearing loss (about 70% loss), I'm even getting used to that.  Life is good.
Good luck to you!
Sally in Prescott, AZ

[amn70]

First, I wish you the best as you seek out your treatment options. I know for myself that it was not an easy decision and it took me two months to ultimately decide my course of action after I was diagnosed with an 8 mm AN back in June 2001. I ultimately decided on FSR (fractionated stereotactic radiosurgery) at Johns Hopkins with the late Dr. Williams (October 2001). I did a great deal of research and was impressed that he was not olnly a board certified neurosurgeon, but a board certified radiologist as well. He had an impeccable bedside manner and I felt I was in excellent hands. Unfortunately, my tumor did not respond to the FSR and after my April and Oct. 2004 MRI's (I had to have follow-up MRI's every six months after the FSR) it was discovered that my tumor had grown from being a little under 1 cm to 1.5 cm. The Hopkins docs said I needed to have the tumor removed (I am only 34 years old). I had surgery (translab approach) at Loyola Chicago this past January 2005 and am continuing to heal and recover (LONG ROAD). Do I regret my earlier decision to have FSR?? NOT ONE BIT!!! I unfortunately was in the 3% group where FSR failed. If I had to make the decision over I would still choose FSR. I was angered by my current neuro-otologist who basically chastized me for choosing FSR and saying how difficult it now would be for him and the neurosurgeon to get at my tumor because of scar-tissue residue from the radiation. Don't let other docs blast other treatment options. Their purpose is to inform you of THEIR treatment and not to blast other treatments. It is hard enough that we are left making such a decision and there is no one, clear-cut answer. I also know that even though my tumor was 'successfuly' removed, that there is NO 100% guarantee that it won't grow back. I don't live in fear, have a good attitude and just live my life as though it will not. GOOD LUCK!

[treefarmer]

March 12th was the 1 year anniversary of my Proton Beam radiosurgery at Mass General Hospital in Boston. I  spent 4 months aggresively researching the alternatives. My decision was based on trying to minimize the effects of treatment. From what studies I could find the numbers show less side effects from radiosurgery than the traditional  surgical approaches. Shortly after treatment I had serious vertigo/dizziness for about one month. I missed work for a short while because I felt driving would be dangerous.  I still suffer from occasional bouts of vertigo. In August of last year I started suffering from killer headaches. I also have the occasional sharp stabs of pain, similar to what Sally describes above. I also have 90% hearing loss in my left ear (it was at 70% pre-treatment)
At my six month MRI the tumor showed no change.
The Proton Beam is a very focused delivery of radiation. A brand new $50 million facility has been contructed around a 3 story cyclotron used to generate the beam. Treatment involves the placement of 3 small marker BB's imbedded in the skull ( a painless quick procedure), a combined CAT Scan & MRI mapping of the tumor and then a 1 hour outpatient procedure for the actual radiosurgery. At least that was my experience. The physics of the proton beam allow for a very targeted dosage.
Today I still suffer from headaches. It is bearable though (with help from the pharmacy) and life in general is pretty good. I would still choose radiosurgery over traditional. I was looking for 20 more years of quality life and not as concerned about the potential for future tumors. I figured if this doesn't work I can always go back to regular surgery. I think that it is the $ talking when Doctors attack radiosurgery. Doctors that do both let the circumstances and wishes of the patient direct the treatment.
Best of Luck to you.

[kathy1024]

I too am struggling with the decision on radiation. I have a 1.5 cm tumor and also 55 years old.  I have no hearing loss, but have imbalance issues and can't tell if my memory lapses are from this tumor or just plan too much going on!  There is a new machine called the Novalis.  The radiologist recommended low dose and single shot radiation.  I just have not heard anything about that as the gamma knife seems to be the most common. I also asked the dr to refer previous patients to me and so far, I have not heard from one of his patients...that concerns me.  Thanks to this website, I am getting more information. Good luck!

[Mark]

You might want to visit the CK Society web site which is for physicians using the Cyberknife. They have a page there that compares the various radiosurgical machines currently in use. they are at cksociety.org

[Russ]

Hi
  I wouldn't be concerned with pt. replies. They have probably gotten on with their lives.
  The concept of ST isn't so new and is comparable to GK.
  http://www.novalis-surgery.com/scripts/website_english_novalis.asp?menuDeactivate=1&articleID=991&articleTypeID=77&pageTypeID=14&article_short_headline=Novalis%AE%20Shaped%20Beam%20Surgery

[dowdog]

amn,
who was your surgeon at Loyola who chastised you?  Was it Lionetti?

[ppearl214]

Thrilled with my CK decision as of today. Will have my 1-month post treatment appt next Monday to follow up on brain edema, etc etc etc. Side affects still there but diminishing.... and am not questioning my decision at all.

[Mayfete]

I learned I have an AN last March after going to ER with what was diagnosed as "Acute Viral Labyrinthitis".  It took awhile for them to decide what was wrong.  MRI showed a small AN.  I'm finding you need to have as much information as possible and be proactive in getting help.  Audiologist and primary physician seemed to take the "wait and see" approach - no big deal.  But things I've read on web indicate it's preferable to use radiation when tumor is small.  I have a friend here who had surgery for AN.  She's a poor advertisement for surgical success - lost her hearing, balance and has facial paralysis.  I see some are sending their info to specific centers for evaluation.  I'm in Portland, OR and there's a GK facility here, but it seems rather new.  I see there's a CK facility in Seattle - the Swedish Medical Center.  Does anyone have experience with either of these?  With specific doctors at either?  Feedback on CK versus GK?  I appreciate all the information I've read in postings and am checking out links provided.  I'm new to all this and would appreciate any help.  Looks like my next step is seeing a neurologist. Thanks.

[Raydean]

I can't answer your  question, but i do know someone that could.  Please consider contacting
Dr. Sandra S. Vermeulen.  She is associated with Swedish and other centers in Seattle.  She's a pretty amazing lady and is very knowledgable in the field of radiation.  She on the board of IRSA.
her phone number is 206  386 2323

I hope this helps
Best to you
Raydean

[Mark]

Mayfete,

Here is a link which discusses differences between the primary radiosurgry / radiotherapy machines. It might be helpful for some of your questions comparing systems.

http://www.cksociety.org/PatientInfo/radiosurgery_stereotactic_technology_comparisons.asp

Good luck

Mark

[debora]

I know there are positve outcomes with radiation and hopefully it will kill the tumor.  Make very sure the surgeon knows what he is doing.  I had my balance nerve zapped and have been dealing with vertigo for the last 13 months, the first 10 months  were very hard and I have spells of vertigo that make me sick, I am pretty sick again right now, there always seem to be motion going on in my head at times pretty awful, feels like you could fall down and get violently ill.  Ask many questions.  Don't mean to scare you just want you to be aware.. Take care.  Deb

[amn70]

dowdog--yes, it was leonetti at loyola. thankfully, I had an excellent rapport with dr. douglas anderson (neurosurgeon) and still went ahead with them anyway.

amn