GK descision

[Greg M]

Hi all, I haven't posted in a while. To tell you the truth my brain was tired of thinking about this thing so I quit thinking about it until my appointments come. Then I just give myself healing vibrations, play with my 3 1/2 year old son and being with my beautiful wife keeps my spirits high and from there just keep pushing on, wow what awesome therapy!

I am blessed not to report any new symptoms. That is one of the main reasons I am seeking treatment now rather than waiting. I want to keep and save as much as I can (hearing, facial movement and balance). Insurance and location are playing a role in my treatment choice (GK,CK). I am going forth with the Gammaknife treatment, I met the team at the Gammaknife Center in Portland Oregon, I feel comfortable with the radiologist there, Dr.Bader. One thing that I didn't get is that he said it did not matter so much, who the Neurosurgeon was? I had a choice between the doctor he usually calls on or a doctor from the OSHU team. I know the machine does the treatment but I thought the neurosurgeon mapped the brain and AN for the machines info to be entered in before the treatment? He said both have expirience treating AN's, and both are capable but should I research this one?, like who has more expirience than the other? I'm kinda burned out on reasearching but I will do what needs to be done.

 I would totally go for the Cyberknife treatment for the reason of hearing preservation alone, I have 85% left but in the state of Oregon there is only Gammaknife avalible. There are other radiation options in Oregon (FSR, etc...) but i'm going with what has been recomended to me, GK. I am on state medical, I don't have the funds to travel around, I also have a beauitiful family I need to work and provide for...The Gammaknife facilty in Portland has expirience with treating AN's and they seam very confident in there work, so that is good. I'm a little worried about the one BIG dose, one day compared to the CK, 3-5 smaller doses over 3-5 days, one worry is hearing preservation, the CK seems the gentler way to go. He said that either radition treatment was going to hurt my hearing one way or another. Was he being just really honost or just preparing me for the worst? Another worry is swelling. I know both machines are guilty of these after affects but it seems more with the Gamma, but what do I know anyway, i'm just a guy with a tumor in my head, like I'm suppost to be the expert. I am humble right now more than ever in my life, I am truely grateful for my life!!! It's all good, I just want to move on, am I ready? I think I am, I want my life back!!!!!

 I'm still very nervous about this whole thing, I would be more gun ho if I was feeling a lot of symptoms but I have mild hearing loss and a little tinitus. So it's a hard descision to go forth with, as all of you know..... I go see another nurosurgion, that is apart of the Gammaknife team, and then from there when ever the insurance clears I will go termenate this mass once and for all, the tumor will fall!!! Wow sounds like the termenator. So maybe a month or two.

I really think another huge role in me feeling at peace with this whole ordeal is all of you taking the time to talk to me, it made the WORLD of difference, thank you.... From now till treatment I will probaly have questions come up so you might be hearing from me. I am mostly worried about keeping the swelling down, if any, after treatment. I am looking at things I can do myself at home to prepare for this event before and after. Well thanks for listening Peace through love Greg

[macintosh]

Hello Greg--

The question of how much the individual physician matters when you're dealing with CK or GK is one that I've asked about on this forum and on the CK forum. The answers have been sort of ambiguous--generally, doctors who do GK and CK say that the machine does the work, so the individual doctor doesn't matter very much, then they say something like, as long as the person running it takes the time to program it properly.  I think if the people at OHSU are experienced and conscientious, then you should feel confident that they'll do a good job.

As far as side effects go, results vary, but it may not be that bad. I had one-shot LINAC for a small AN, and I had a relatively mild version of what we call on the forum "wonky head" for a while. My hearing seems about the same as it was going in--it was pretty compromised already.

Good luck. I found the whole experience less traumatic as it went along. I hope the same happens for you,

Mac

[Vivian B.]

Hi Greg,

I totally understand how you feel. Coming to a decision is difficult. It helps when the doctors recommend one treatment over the other. On the other hand, now that you have decided, you should feel a little bit more at ease and not worry about the procedure. I have done a lot of research myself on Gammaknife as in Toronto, Canada, this is the only type of radiation we have and it seems to be an easy procedure. I understand you will be a little sedated and won't feel much of the process. I think you need to be at the centre most of the day but the actual treatment does not take long supposedly. Some have said one hour at most. What takes the majority of the day is the testing they do prior and the waiting after treatment is done I think due to sedation. I don't think they put you to sleep. As far as the swelling, and I am not sure about this, but some people were prescribed steroids following treatment to avoid swelling. I understand swelling could occur but subsides over time. Hope this helps and good luck.

Vivian

[leapyrtwins]

Hi, Greg.  Good to see you again.

Congratulations on making your treatment decision - I know from experience that it's a very difficult choice.

Good luck with the GK.

Jan

[Nancy Drew]

Hi Greg,

Sorry you have to go through this whole AN ordeal.  I had GK on my small AN on Oct. 21, 2008.  I won't go into all of the details, but I will have to say that making the decision was the hardest part of the whole process.  The procedure itself wasn't so bad.  I would have to say that being in the GK machine was actually easier and less traumatic than having a MRI.  I did have a slight reaction to the Versed (medication) which was supposed to put me in the twilight zone, but it is possible that it interacted with some other medication I was taking.  In retrospect, I would have skipped the Versed and stayed only with the Ativan they gave me.

End result:  I came out with the same hearing I went in with (and I had good hearing going in).  I also had a post GK balance test that came out normal.  At three months I had a MRI, and my AN is already starting to shrink. 

I think a lot of people are scared about of the head frame.  I was, but it was no big deal.  Just remember that you will have a team developing your GK plan so it's not like it is just one person making the decision.  The two people who played the biggest part in my treatment were the radiologist and physicist (the psysicist was the one "behind the "wheel" so to speak).  If you take a CD with you, that helps a lot.  You can also talk to the physicist at any time, and if you are having a difficult time they told me you can take a break without the treatment being interrupted.  I was only in there for 27 minutes, but then again my AN was small.

After my treatment I stayed in the recovery area for about 20 minutes, skipped the valet parking and walked up four flights of stairs to my car and stopped at the 7-11 on the way home to get a diet Coke.  I took a six mile walk three days after GK, but I will admit that fatigue did hit later on and hung on for a while.  I had one balance issue that resolved itself and took one round of prednisone "just in case".

Everyone's story is different.  Mine has been positive so far, but I am only a little over six months out from treatment.  I have other stuff that is bothering me more (like my son being in Iraq), and I will be honest that I don't think much about my AN anymore.  I had lunch with two other AN folks today (we all had treatment around the sime time), and the subject of our ANs did not dominate the conversation.  We are all doing good and getting on with life with just a few bumps in the road from time to time.  Best wishes to you.  It is a difficult process so don't be hard on yourself.  Sounds like you have done your research.  Go with your gut.

Nancy

[Jim Scott]

Hello, Greg:

I'm so pleased to learn that you're at peace with your treatment decision.  That is crucial to handling this experience.  I had surgery then FSR, so I don't have a comparable experience to draw on in order to advise you.  However, I'm aware that most GK patients seem to do quite well, overall.  Post-op swelling is definitely an issue but I believe most doctors will prescribe steroids to control it, if necessary. Of course the experience and skill of the doctor who 'maps' your GK is important.  My neurosurgeon teamed with a youthful (30's) radiation oncologist for over 4 hours to program my FSR.  I appreciated their effort.  The FSR treatments were easy (if tedious, day after day, as an out-patient) but caused no problems except for my remaining AN, which, at my last MRI (August, 2008) showed some shrinkage and definite necrosis. 

I will hope and offer prayers that your GK will be successful with no complications and that your recovery will be swift and unimpeded. 

Jim

[mk]

Greg,

congratulations on your decision. I am happy that you have found a facility that you trust close to home.
As Vivian mentioned, some of us didn't have access to CK facilities nearby. I suppose this makes the decision easier, since there is no choice.
Quite a few of us recently have had good hearing preservation with GK, at least in the short term. Long term preservation is always problematic, no matter what the treatment choice.
My main concern was the same as yours, swelling. I am not sure that there is any data to prove that CK is better to avoid swelling - from other ANers reports on this forum it seems that it may happen no matter what the treatment choice, but it can also be avoided. When a team is too concerned about swelling, they may reduce a bit the radiation dose. This is what they did in my case (and by the way I didn't experience any swelling), but I think it is not likely for you since your AN isn't big. For me it was an issue, this is why they applied a slightly lower dose.
Oh, and I had no sedation whatsoever.
Make sure to give your body plenty of rest - I found that resting and avoiding stress was the best medicine.
Good luck
Marianna

[sgerrard]

Hi Greg,

Moving along, I see. 

I met Dr. Bader, he struck me as a good man as well. I ended up going to Stanford for CK, but I would have been fine doing GK in Portland with him as well.

The neurosurgeon and Dr. Bader do most of their work before the treatment, developing the treatment plan. The computer does all the calculations, but they have to adjust the plan to make sure that the tumor gets enough radiation (the oncologist's job), and that the surrounding brain anatomy doesn't get too much (the neurosurgeon's job). I would be fine with the one that Bader usually uses, and also the one from OHSU if they have done GK on ANs before.

Congratulations on the decision and best wishes for a good outcome.

Steve

[suboo73]

Hi Greg!  So good to see you on the Forum again!
I am in your position with a smaller AN.  Since i am in W & W, i am not positive what type of treatment i will use, if needed.
However, i think with the smaller ANs we have a chance that with radiation, even if there is some swelling, it will OK.
Marianna is doing well, and she is just one example of many. And her AN was not as small.  She communicated with her team and they planned accordingly. 

Go with your gut and congratulations on your treatment decision!  That must be a HUGE load off your mind.
Best wishes with the treatment and then you can get on with your life and your beautiful family!

Sincerely,
Sue