Tell me about your GK experience

[allegro17]

Hi again!!!
I know that by now I probably win the award for most indecisive, but I am trying really really hard to figure out what to do and have found this forum soooo helpful.  I am hoping to get some people to chime in on their experiences with GK treatment (most specifically Gamma knife, but welcome all!).  Here is what I would like to know:

1. What kind of radiation did you choose and what was the dosage used?
2. How old were you at the time of treatment?
3. How big was your AN/was is NF2 related?
4. How long ago was the procedure done?
5. Any side effects/immediate or delayed?
6. Has it proven to be effective on controlling your AN (shrinkage? stable?)

I know it's a lot of questions and thank you for taking the time to answer them

Laura

[LisaP]

Hey all,

I too am interested since I am on the "watch and wait".  Anyone out there please feel free to let us both know.

Thanks

LisaP

[Sefra22]

Hi Laura,
I had my GK just about 2 years ago. I chose it because there is no where in Maine where I could have had GK or CK. So, since I had to travel for treatment, I went with the GK so I could get it done in one session.

I was 44 at the time,my AN was 17mmX15mm at the time, and since then I have been told there has been some shrinkage, but I was not given dimensions.

Any after-effects I have had I blame on the AN itself and not the GK. For example, my hearing did get worse, and I experienced some temporary vertigo 4 months after treatment. I was told that my hearing most likely would have gotten worse whether I had treatment or not, since the AN compressed that nerve and damaged it. My balance is only slightly compromised. My ENT conducted some balance tests on me last week, and about the only thing I can't do is walk heel-to-toe. But, how often in life do I really have to do that? I just remember that I only have one functional vestibular nerve, and I think I'm doing pretty good!

I am happy with my decision to have GK. Good luck with whatever option you decide to go with. Don't hesitate to ask if there is anything esle you would like to know.
Lisa

[sgerrard]

Not sure if you want Cyberknife experiences, but you're getting one:

1. Cyberknife. 6 Gy per day, 3 days.
2. Age 53.
3. Size was 8 mm. Not NF2.
4. Done 17 months ago.
5. Had nasty sinus infection at 3 months. Don't know it was CK related, but I blame CK anyway.
6. Yes. Size was down to 6 mm at 6 months. Hearing also stable.

Steve

[ppearl214]

Hey Laura,

I'm a CK'er like Steve, so not sure if I qualify with my answers, but here goes:

1. What kind of radiation did you choose and what was the dosage used?  Cyberknife, 30Gy total, spread out over 5 days (6Gy/day)
2. How old were you at the time of treatment?  over 40... I'm leaving it at that.  Age is a sore subject for me.
3. How big was your AN/was is NF2 related?  As noted in my sig line below, 1cm at time of CK.  Not NF2.
4. How long ago was the procedure done?  Just shy of 3 yrs ago (first week April, 2006)
5. Any side effects/immediate or delayed?  Some balance issues, enhanced tinnitus and vertigo within 1st (approx) 8 mos... all has pretty much calmed down now.  Typical issues that come with any form of radio treatment for AN's.
6. Has it proven to be effective on controlling your AN (shrinkage? stable?)  Had appt 2 wks ago with my back-up brain surgeon.  Definate necrosis going on and she noted to me, out of the blue, she saw some shrinkage. Please keep in mind that the goal of any radio treatment for AN's is not to shrink the growth, but to stop it from growing anymore.  Shrinkage can occur, but is not the ultimate goal of radiation on an AN.

Added notation (possibly add to your list of questions)... hearing retention?  Hearing level before treatment and post treatment. 
For me, I was at 96% word recognition at time of treatment.  Approx 6 mos post treatment, I dropped approx 15 db in my AN ear due to tumor swelling.  It calmed down.  Had my hearing test 2 wks ago, I'm back at 96% hearing retention.  My goal in CK was hearing preservation since I had high serviceable hearing before treatment.  For me and my personal goal, it was achieved and has maintained the same level. Please remember that this is not the case for everyone going through radio-treatments for AN's, but many do note either same hearing levels or a diminishing of some hearing... some have lost it as well.  Again, this is just a side note.  With GK, many typically choose it when much of the hearing is already gone.  With CK, many choose the "fractionated" approach (vs. GK one-shot/dose) to help preserve hearing.


Well, hope this helps.  Keep asking questions.... you are truly becoming the "best, well-informed patient you can be".

Phyl

[GRACE1]

Never apologize for being indecisive about AN treatment.  Take all the time you need!

1. What kind of radiation did you choose and what was the dosage used?
GK.  I don't know the dosage used.

2. How old were you at the time of treatment?
56

3. How big was your AN/was is NF2 related?
See my details below my post for size.  Not NF2 related.

4. How long ago was the procedure done?
Dec 2006

5. Any side effects/immediate or delayed?
No side effects at all.  My hearing went from 40% loss at diagnosis to 80% loss at one year post GK, but I had lost more hearing between diagnosis & GK but did not have a hearing test.

6. Has it proven to be effective on controlling your AN (shrinkage? stable?)
Yes.  My AN has reduced in size 50%.

Good luck,
Laura

[allegro17]

I am very happy to hear you have all had such positive outcomes!
I got pretty freaked by one doc about doing radiaiton, and can't seem to get back to my pre-consultation level of comfort about the treatment.  It's been tough.
Just to be clear, the purpose of radiation is the same as surgery, correct?  Goal being permanent control of the AN, and not just a way to "extend" quality of life?  I am feeling slightly confused as to whether or not the statistical outcomes of radiation on AN control diminish over long term follow up.  Saw a study somewhere quting something to the effect of 96% effectiveness over 3-5 years, dropping 90% over 10.  Basically, I want to feel comfortable that this downward trend would not continue indefinitely as years go by.
It's funny that while some would indicate against radiation and for surgery in someone my age (29), I almost see it as the opposite.  I am so active at this point in my life that it is hard to imagine taking months off of my activities to recover from surgery.  Still I know I'll manage either way.
Thanks  

[ppearl214]

Laura,

I'm really going to try my best at your last post.

Surgical treatment is to attempt removal of the tumor.  Not all tumors come out easy via surgery and some residual may be left behind.... which can possibly be later treated with radiation to help prevent future growth.

With radio treatments, the AN remains (does not disappear) and the goal is to stunt/stop its growth, but there will always be something there (even if it turns into a blob).

Your research is showing you that nothing is guaranteed.  Surgery can have issues... as can radio treatments.  You will know in your soul which direction you are leaning for treatment... for which will be best for you, your AN and your situation.

We always note here to go with the gut.... I know your gut will tell you what is best for you and your situation..... have faith in your gut.

Phyl

[Greg M]

I'm also seeking radiation. That's a good ?, what's the stats after 10, 20 yrs with radiation? I'm leaning towards the CK treatment, it is less invasive than the GK. I think having radiation doses over a period of 3 days compared to all in one day makes sense to me. All at once seems too much but I'm not a doctor. From what I have read the CK has the best chance at hearing preservation. I'm 32 and yes i would like it to be a done deal after my treatment. But this is a sensitive area of the body, it's hard to get to and it's a tumor. Anything goes with these things and everyone body reacts differently with treatments. Ones experience is her/his own deal. I feel the same as you do (Laura) I feel like being young I don't want to risk brain surgery, I have a three year old son and I am very active. So the radiation makes sense for me. But I am also worried about long term, where I have yet to read about 20 yrs down the road with outcomes from GK or CK. Well more research to be done. With these slowwww growing tumors we can take the time and research and go with our gut feeling. Good luck with your decision. Peace Greg

[GRACE1]

As I understand it, the goal of GK is to stop the growth of the AN.  You do not want it to get any bigger.  It is wonderful when it shrinks the AN, but that is not guaranteed. 

Grace

[Sue]

I might suggest that you search for Nancy Drew's posts.  She did quite a bit of research to come to her decision and a lot of what you are asking, she asked too.  Finding her questions and answers may help you both.  Or, you might send Nancy Drew a personal message.  Just a thought.  I know that she might now qualify for her PhD because of all the research that she did! 

Sue in Vancouver USA

[mk]

Seeking out Nancy Drew's posts is a great idea, since we went though all that discussion back then. But since then there has been quite a bit of GK/CK activity, so I guess it is worth an update.

Here are my answers:
1. What kind of radiation did you choose and what was the dosage used?
GK. Due to the size of the AN, the dose was 11 Gy, which is slightly lower than the 12-13Gy that are the norm.

2. How old were you at the time of treatment?
39

3. How big was your AN/was is NF2 related?
My reports said "unilateral AN", thus not NF2 related. I have had many opinions about the exact size, depending on who read the MRIs, but based on my own measurements, the maximum diameter of the portion outside the IAC is 2.9 cm. The radiation oncologist said that the volume was 10 ccs.

4. How long ago was the procedure done?
10 months ago.

5. Any side effects/immediate or delayed?
No side effects.

6. Has it proven to be effective on controlling your AN (shrinkage? stable?)
6 month MRI showed stable size and darkening at the centre. Of course it is still too early to tell for sure.

Marianna

[GM]

Don't feel bad about the flip-flop decisions...we've all been there....

1. What kind of radiation did you choose and what was the dosage used?   Gamma Knife (GK)  All done on the same day...the radiation treatment itself took about 20 minutes, (three different settings).  I don't remember the radiation totals ...I'd have to search through my medical records)

2. How old were you at the time of treatment?   42 years old.

3. How big was your AN/was is NF2 related?   At time of discovery it was 1.8 CM...it was not NF2 related.

4. How long ago was the procedure done?  In 2003     (University of Virginia (UVA))

5. Any side effects/immediate or delayed?   None that I can truely point to...maybe a bit of increased tinnitus.


6. Has it proven to be effective on controlling your AN (shrinkage? stable?)  My AN swelled slightly after treatment over a two year time frame (totally normal).  It's currently hanging out at 2.1 cm. for about 2 years now.

Hope this helps.

Gary

[Betty-jane]

Hello everyone!  This is my first post here, so new to the process.  I to am trying to decide which way to go.   Just saw Dr. yesterday and got the run down...asked some questions and of course thought of more after I got home.  I have heard that if you have the radiation first and the tumor grows again, it is harder to get out with surgery. Has anyone had the experiance of a re:growth after radiation?  If so, how long after? I am 56 now.  If I have radiation now and it happens that it does start to grow again it could be 10 - 15 years down the road and I will be that much older to go through surgery. Also I don't know if I would be happy knowing it was still in there. Do you not still have some pain from it? On the other hand...If I have surgery now and it comes back, radiation would be easier to take at a later age....But there are the side effects....seems more with surgery!  I know it is my decision but if any one has some in put?  Thanks for listening.

Betty-jane

[Frances]

Hello, I am new to this forum but am a frequent lurker and find it very useful.

My husband has an acoustic neuroma (about 1.5cm) and had GK in August 2008.

In December he started to experience worsening symptoms of his tinnitus and a feeling of 'fullness' with localised headaches. He has improved somewhat since then so we are hoping that this is a sign of transient swelling following the treatment. He has had an MRI this week and will get the results tomorrow. I have everything crossed that he wont get bad news!

I have taken solace in the posts on here about post radiation problems and hope I'll be able to report back with encouraging news!

Frances