how old were you when you had CK or Gamma done?

[mindyandy]

Hi my question is how old were you at the time you had CK or Gamma done. How are you doing today? I am considering having CK done and I want to know how everybody that had it done awile back is doing today. I am 29 years old & am afraid of the possible effects later down the road. I do appreciate your input.

Mindy

[Lorenzo]

42 then, 47 now, doing great! Later? Who knows, and that goes with all options.

[Mark]

Mindy,

There is a thread on this forum about what age people were when they were diagnosed and I think the vast majority would land in the 45-55 range. So the "long term" effects question is limited to roughly a 25-35 year window given average life expectancies. Given that GK was first used on an AN almost 40 years ago and the lack of any compelling evidence of post treatment malignancies during that period, one could argue that the question is being answered favorably.

Your age of 29 puts you on the early side of the AN diagnosis curve, so it's a little harder to find a population of AN patients who have been treated at that age range and are now doing well , say 50 years out. However, it would be relevant to look for the "universe" of patients under 30 that had radiosurgery for benign tumors like an AN and see if there are any studies on that element.

I think the best place for your question is over on the CK message board where there are several radiation oncologists who are infinitely more qualified to address the issue. radiation effects are pretty misunderstood from my research for a variety of reasons. One aspect is not understanding the difference between high dose and low dose treatments. Very low doses are shown to create cell mutations which is what cancer arises from. This is why people worry about the effects of cell phones, airplane trips, high voltage lines, radiotherapy treatments etc. High doses are designed to destroy the abnormal cell DNA of the tumor, so there can be no mutation. The bigger issue is exposing healthy tissue to a toxic dose and destroying it which is why accuracy is so critical to radiosurgical machines.

That being said, I am not a radiation oncologist and have never seen studies that I can offer a definitive answer for someone your age or younger. In the same vein, I'm pretty sure no one else on this board is either, so I would not put much stock in answers that essentially parrot the opinion of someone's surgeon who said it was high risk. I think your best option is to talk with a radiation oncologist who either has access to definitive studies (if you find them , please share with the rest of us  ) or can articulate the biology and dose impact effects where you can feel comfortable with the level of risk if you went down that treatment path.

FWIW

Mark

[gordy]

43 at trime of gamma and still 43. had it in july

[kat]

Hi

 I was 56 when I had my GK

 Regards Kat

[GM]

I was 42 when I had my GK treatment...I'm 46 now...    Same level of hearing, slight increase in tinnitus.  Tumor currently hanging out at 2.1 cm for almost 4 years now...(it swelled from 1.8 to 2.1 over a two year period after GK treatment).

[ceeceek]

Currently I am 43 and just had treatment..so far so good.I emailed you a private message from the cybersupport.org site so check your messages,,but Dr. Medbury is very well informed on this subject, and so far, it seems to be a viable treatment. I was concerned as well and especially since I have some tumors..unrelated...due to radiation poisoning as a child....due to dental xrays.....so of course the idea of having more radiation in an area that I already have problems from was somewhat unnerving...however, after reading all the info, this type of radiation wether it be cyber, gamma, or  other...they are all similar types of radiation and the long term effects so far seem to be completely non existent.
At your age, you should recover well, and really have no side effects at all from treatment, and yes,,,,10, 15 or 20 yrs down the road, it may need to be re-treated..one of the advantages to cyber and other forms of fractionated treatment..and I think gamma too...not to mention the technology that will exist down the road...something to consider. When I first found out I had this tumor I was really mad as I had previously had a ct scan, it did indeed show the tumor...but the radiologist or whomever, did not pay enough attention...and they missed it at that time...dont know how..it is the size of a walnut.........well, boy was I PO'D,,,but it worked to my advantage cause five years ago, the techniqe used to treat me now, was not in existance, and I would have been faced with traditional surgery..and in my case ..a skull base tumor..it would have left me brain damaged as a result..so....as you can see in just a few years, the treatments have really advanced and it worked in my favor...
Hopefully, one treatment and you will be good to go forever,,,many people are, and you are at just as much risk..or even more..I think of having the AN come back with surgery..so this is not invasive,,,easy to do,,,,has good long term results, and so far..no long term consequences after 40 yrs of study....I dont think even tylenol can tout the same....so rest assured, it is a safe treatment.
Good luck in your decision and take you time to decide, what is best for you.
Ceeceek

[Pascale]

hello everyone,

well, I'll be getting my GK treatment on Nov 29th, at the age of 25....I think about what could happen 20 years from now, and the doctors keep on telling me that because it's radiation, I MIGHT have some effects 20 years down the road...but hey, I don't think about it...it's not healthy...

So since we don't know what can happen, the only thing we can do is hope we have a happy life, which is what matters 

Pascale

[Richey]

I was 57 when I had my GK

after two years the tumor has not grown but it has not shown signs of dying either

Lost my hearing on that side a few months after treatment and the tinnitus is bad

I do much better with my balance which was my first symptom, I guess my brain has learned to compensate.

Waiting a year this time to MRI, that will be FEB-08

Best of luck on your decision and results, be sure to explore all your options and don't be afraid to get more that one opinion.

Rich

[ppearl214]

crap.     Ok, I'll fess up my age.... dang it....

at time of treatment, er..... 45... Ok, there, I said it... I was 45......

*runs off to sob over not being 25 anymore.....* 

[fbarbera]

Hi Mindy, I just had CK done in August 2007 and I'm 34 years old.  My AN was a fairly large 2.6cm.  Basically, I became convinced in my consultations that the chances of things going wrong many years down the road (i.e., tumor continues growing, malignancy) are the same regardless of which treatment option you choose.  One of the key factors for me was quality of life post-treatment and my own research suggested that the chances of debilitating side effects were greatly reduced in radiation.  It's been only two months and I have posted on this site about some of the symptoms I've been experiencing since treatment.  Overall, though, I'm told that the symptoms are transitory and will likely recede as tumor necrosis sets in over the course of the next year or two.  I still have very good hearing in my tumor-size ear (though I suspect I've lost a bit since treatment), no facial paralysis, and none of the many other debilitating and unpredictable side effects that seem to accompany surgery.  It hasn't been a total cake walk, but overall, my life is not that different than it was prior to treatment. 

Best of luck to you,

Francesco

[Jan2]

Hello,
My daughter was diagnosed with a 7th cranial nerve (facial nerve) schwannoma five years ago when she was sixteen and a junior in high school.  We've taken the "wait and see" approach up until this point.  She has no facial paralysis.  Although initially she had dizzy spells and episodes of what she termed, "heavy head" episodes, those lasted only a few months.  Now, her only symptoms include muffled hearing in the affected side and decreased tearing in the eye on the affected side. 

Our doctors here in Louisiana  incorrectly diagnosed her with an acoustic neuroma and recommended surgical intervention right away.  Had she had surgery, they would have found a 7th cranial nerve tumor instead of an 8th cranial nerve tumor and surgical removal would have resulted in complete facial paralysis on the affected side.   My prayer was that God would lead us to the right doctor and He did.  We found Dr. Slattery at the House Ear Clinic and he recommended the "wait and see" approach."  Meanwhile, in the past five years she has completed high school and will graduate from college in May 2008 and her life has been great!  Although her symptoms have not increased, Dr. Slattery now says that because of gradual growth of the tumor, now is the time to do something.  He feels we have a chance at preserving faciial function with GK.  I've also consulted with other experts across the country and sent her MRI's to them for review as well and they agree that now is the time and GK is the most appropriate treatment for her.  She is scheduled for GK at The House Ear Clinic on 12/19.  We thank God everyday for  Dr. Slattery at the House Ear Clinic.   

[mindyandy]

Jan
I'm glad to hear that she has little symptoms and hopefully that will stay true. I have decided to go with CK and I will find out the 29th when that will happen. Your daughter is so brave and please keep us posted on how she is doing. I wish her the best and BIG HUGS TO YOU BOTH!

Hello,
My daughter was diagnosed with a 7th cranial nerve (facial nerve) schwannoma five years ago when she was sixteen and a junior in high school.  We've taken the "wait and see" approach up until this point.  She has no facial paralysis.  Although initially she had dizzy spells and episodes of what she termed, "heavy head" episodes, those lasted only a few months.  Now, her only symptoms include muffled hearing in the affected side and decreased tearing in the eye on the affected side. 

Our doctors here in Louisiana  incorrectly diagnosed her with an acoustic neuroma and recommended surgical intervention right away.  Had she had surgery, they would have found a 7th cranial nerve tumor instead of an 8th cranial nerve tumor and surgical removal would have resulted in complete facial paralysis on the affected side.   My prayer was that God would lead us to the right doctor and He did.  We found Dr. Slattery at the House Ear Clinic and he recommended the "wait and see" approach."  Meanwhile, in the past five years she has completed high school and will graduate from college in May 2008 and her life has been great!  Although her symptoms have not increased, Dr. Slattery now says that because of gradual growth of the tumor, now is the time to do something.  He feels we have a chance at preserving faciial function with GK.  I've also consulted with other experts across the country and sent her MRI's to them for review as well and they agree that now is the time and GK is the most appropriate treatment for her.  She is scheduled for GK at The House Ear Clinic on 12/19.  We thank God everyday for  Dr. Slattery at the House Ear Clinic.   

[ToneControl]

Hi Mindy,

Well... since I had my first CK treatment today, I can now officially say "42".  Mine was only 1cm when diagnosed, but I became aware of changes in my hearing early on (I'm an audio engineer).  After several months of compulsive Googling, I decided on Cyberknife, and when I realized that my insurance would cover treatment here at Stanford (I live in Spokane), I opted to come here.  Of course, having a sister living in San Francisco helped sweeten the deal.

After my first treatment I can say that I think the only scars I will return home with on the plane are from a nurse nicking my arm while dry-shaving it looking for a vein for the CT contrast IV.  All in all, I could do much worse.  I also had a great chat with Lorenzo and Gennysmom on Monday, and their insights were greatly appreciated.  My appreciation extends to all who post their experiences on the board here.  I feel fortunate to have access to the collective knowledge, and hope to be able to contribute myself.

I wish you luck, Mindy.  I'll check in again post-treatment (or maybe later tonight, if the Decadron keeps me awake!   )

- robert

[mindyandy]

Yes please let me know....especially how the deacdron feels.

Hi Mindy,

Well... since I had my first CK treatment today, I can now officially say "42".  Mine was only 1cm when diagnosed, but I became aware of changes in my hearing early on (I'm an audio engineer).  After several months of compulsive Googling, I decided on Cyberknife, and when I realized that my insurance would cover treatment here at Stanford (I live in Spokane), I opted to come here.  Of course, having a sister living in San Francisco helped sweeten the deal.

After my first treatment I can say that I think the only scars I will return home with on the plane are from a nurse nicking my arm while dry-shaving it looking for a vein for the CT contrast IV.  All in all, I could do much worse.  I also had a great chat with Lorenzo and Gennysmom on Monday, and their insights were greatly appreciated.  My appreciation extends to all who post their experiences on the board here.  I feel fortunate to have access to the collective knowledge, and hope to be able to contribute myself.

I wish you luck, Mindy.  I'll check in again post-treatment (or maybe later tonight, if the Decadron keeps me awake!   )

- robert