Gamma Knife - Question

[smallbutmighty]

Hi All
Dont know if I have posted that much here but the help I have received from reading others stories has been tremendous. I have a 2mmX8mm AN treated by GK in sept 2009. I have not gone for any post treatment MRI's as I was told to wait 2 years...As for side effects, its been 10 months and the first thing I noticed was 3-4 months after GK. There were these electric zaps in my brain that were brief but uncomfortable about 4 total. After that I got headaches and took some aspirin. The side effects have been MILD! But still there. I usually loaf around the couch but recently started weight and eliptical training (can't use the treadmill as I still feel as though I'm moving when I'm done). I have SO much more energy every day to accomplish what I need to! The nausea though, came on about 2 months ago and its actually caused me to puke once. Its worse when I'm tired and if I drink caffeine everything is worse, tinnitus, all of it. I wake up early around 5-7am because of the nausea and drink water to settle my stomach but have to get out of bed. I also have a video my husband took (sneakily) of my GK process if anyone wants to see it let me know! For me I use medical cannabis to help with the symptoms because that is better to me than steriods or opiate drugs like valium. I just look forward to the day that I feel good in that ear but the exercise has helped make it more tolerable in this body!

[steph28]

Hi Sarah

I hope you are well.

Were about in England are you having the GK?

I was diagnosed September 2009 and had surgery to debulked the AN in December 2009 as my was huge. I am due to have GK at the end of the year, but because I have facial paralyses they have decided to wait to see if the nerve recovers anymore.

I am due to have mine in Sheffield with Mr Kemeny.

[Louise UK]

Hi Steph28,

I had surgery for a large AN in March 09, I also like you had the remainder zapped with GK, 7 months later. I had my GK done by Mr Kemeny in Sheffield too. Hope you found him as lovely as I did.

Im from Wales, I was also young at the time I was diagnosed, 26. Just wondering where abouts you are from?

Louise. x

[ceepee]

Sorry I am nearly 6 months out of date. My AN was dianosed in 2005, wait and watch untill 2008 when AN was 1.8cms. Gamma Knife surgery carried out June 2008, two nights in Sheffield UK Hallamshire Hospital UK, staff were great, proceedure lasted most of the day(MRI and Gamma Knife equipment in different Hospitals). Yes the head frame was a little uncomfortable, but no real pain. I drove home the following day 250 miles back to the south coast with no problem  No change in my hearing, ie I still have some hearing in my poor ear.
Now 3 years later haven't found a hearing aid that helps me, tried a commercial digital aid, plus many adjustments, got my money back. NHS now provided me with a similar aid with similar result, next they provided a CROS aid which was better but after 4 months I came to the conclusion that it was not that better than without any hearing aid. Background noise and hearing speech differentiation being the main problems. Currently looking at possiblity of trying a Transear a USA product that aims at single sided deafness.
I have had a MRI every year since, showing some reduction in density and size, hopefully if things are still OK next year, the following MRI will be 2 years later
The only other small problem is that I believe my balance is not as good as it was in 2005, is this due to my age (77), or the AN and gamma knife surgery.
No real long term effects, back to playing tennis and regarding myself as being very lucky to have had the AN diagnosed relatively early, and to have had it treated with Gamma knife. Thank God for modern technology, MRI and Gamma Knife, and the skill of consultants in developing teatments, and carrying out the new procedures

Ceepee

[steph28]

Hi Louise

I live in Buckinghamshire, I had surgery in Oxford with Mr Kerr and Mr Milford. I know I still have issues with my facial nerve and a sizeable AN, but they were both great. I cant fault them at all.

Mr Kemeny was very nice when we saw him. My private healthcare ran out at the end of June and he did wont to complete GK before it ran out, But due to my facial nerve Mr Kerr wontted to wait for 6 months, which is no problem for me. All I would get privately is better food. Its all the same treatment which is what counts.

Is your facial nerve effected? I always knew because of the size of my AN my facial nerve would be effected.

Steph
X

[Louise UK]

Hi Steph,

My facial nerve seems fine, my face looks the same as it did before I had surgery, which I am extremely grateful for. Although I do have some tingling in my cheek most of the time. I think it was the goal to preserve my facial nerve and have the remainder GK'd.

I think its a good idea that your surgeon wants to wait for a bit before you have GK. Have you any improvement in your face since your surgery till now?

Louise. x

[Vivian B.]

Hi There,

Just had gammaknife myself in Canada on June 30/2010. So far , I have been O.K. The rining in my ear is slightly back, headaches in the morning, a little nauseated by the afternoon, but overall, can't complain. I am not sure myself  what is next in terms of side effects, but the oncologist told me to expect some facial numbness since the facial nerve is right underneath the tumor. But that is just for me, may not be with everybody. The whole experience was overall good and very interesting.

Vivian

[steph28]

Hi Louise

There has been some improvement in my face, but not a huge amount. (I would of hoped for more by now). If I'm not talking my face looks near enough normal, which at one point it didn't.

My surgeon has said the bottom of my mouth is a lot stronger then the top. My bad eye reacts with my good eye even though it doesn't fully blink it does move. Plus the eye has started to water on its own and I'm using less of the eye drops. Plus it now closes on its own when I'm a sleep, which it didn't use to do. My wonderful boyfriend has taken photo's of me sleeping!! He actually nearly given me a heart attach as the flash has woken me up before.

The idea was to was to keep the nerve and have GK on the rest, but I think due to the size of the AN the nerve was under pressure.  anyway.

Steph
x

[Louise UK]

Hi Steph,

It sounds as if slowly but surely your face is improving. I know I cant fully understand how you feel as had didnt have facial palsy, but I was SO expecting to come out of surgery with some palsy as my AN was quite large. Also being young like you my face is quite important to me, although im sure it is at anyone's age. But it sounds like you have such a good attitude towards all this.

Im sure you'll see further improvement as time goes on,

Take care,

Louise. X 

[S.arah]

Hi All!!

 Sorry havent been around for a while... been 6 months already! gonna have my 1st MRI in a couple of weeks... Got my treatment done in London at St. Barts.... everyone was really wonderful. Great team!

Things have been good generally... my tinnitus though is quite loud now... though i can still live with it... i got these neck and head tensions that last about 5 mins at a time.. anyone experienced these? i dont feel like i can hear myself and just feel a lot of pressure all over...they tend to happen more often when i'm tired...

hearing has decreased but can still hear.. hope everyone's doing well!! stay strong and happy

[cakulmom]

When my then 23-year-old med. student son was diagnosed with a glioblastoma multiforme (12/09), he did a LOT of research and now takes massive doses of Celebrex and Accutane (with oncologist's blessing) for their anti-angiogenetic properties, along with his regular chemo.  He also read Ben Williams' book (a long term GBM survivor) who advocated lots of stuff.  Among them his diet recommendations (my son said) made good scientific sense so now he eats pounds of blueberries and broccoli and drinks green tea he imports directly from a researcher friend in Japan.  And so do I.  The link below gives the information.  Anyway, diet is one thing we CAN control so why not eat healthy?

http://www.alternativecancer.me/therapy/anti-angiogenesis-foods-agents-fight-cancer-natural/

[Lizard]

I will vote for chocolate too.
I was quite depressed during the period following my treatment, so chocolate definitely helped 

I can't even tell you how many bags of chocolate I ate, it was my saving grace...had surgery in nov of 08 so I basically sat around all winter eating bon bons ; )

[ppearl214]

I will vote for chocolate too.
I was quite depressed during the period following my treatment, so chocolate definitely helped 

I can't even tell you how many bags of chocolate I ate, it was my saving grace...had surgery in nov of 08 so I basically sat around all winter eating bon bons ; )

Deca-crap (Decadron) had me in a chocolate feeding frenzy post-CK.... oy... the weight I gained.

To the original topic, there is no proof that diet  or suppliments affect our outcomes, but yes, they sure do help us to feel better.  Proper nutrition, rest and exercise are key to any "recovery" and as for radio (GK or any other type), by doing the 3 items I just noted certainly helped me counteract any fatigue that may have set in (immediately post-radio, the fatigue was truly a bear to deal with).

IMO, you do what helps you to feel better. Chocolate was my craving, but by watching my diet, resting and exercise certainly helped me post-radio.

Just my 2 cents....
Phyl

[KathleenMary]

I have pretty much decided myself that I will have the GK.  I was so glad to see this post that was geared all to gamma knife.  One of the questions I have is that there were several comments about being uncomfortable with the metal frame.  My neurosurgeon stated that he would give me Verset (sp) which is a conscious sedation.  Did any of you have that and still feel uncomfortable?  I forgot to even ask today when I met, how long does all of this take?  Can you give me an approximate time frame in hours?  Thank you all so much for your forthcoming answers.
KathleenMary

[nanramone]

KathleenMary - for me, the entire time from installation of headframe until removal was about 5 hours. I was the first patient of five ( a busy day I was told) to be treated. I came in at 5:45 am, and treatment began immediately. I remember little of the entire event, because I was drugged. I remember people looming over me and asking me if I felt ok, but I was in lala land and felt nothing.

two days later I had an unusual (according to statistics) acute reaction and had to take steroids for one week. During that event, I lost all hearing in AN ear (which has since returned).

Im ok now