Gamma Knife info needed for newbies

[GRACE1]

Since there is so much more info posted about Cyberknife than there is on Gamma Knife, it would be great for those who've had GK to inform others on their experiences and feelings.  I think it would be very helpful to newbies and would provide a greatly needed balance on this site.  Thank you.

Grace

[Nancy Drew]

Grace,

DITTO.  I would love to hear more GK stories.  Hopefully the GK people are having good results.  If they are then hopefully they will post.  If they aren't then it would be helpful to hear their stories, too.  The CK stories are great, but I would also like to hear from more GKers.  Speak up folks.

Nancy

[leapyrtwins]

Have either of you searched the forum?  There are a lot of GK stories.  Some of them are a few years old, but there are a few newer ones.

Here's one http://anausa.org/forum/index.php?topic=6297.0

Here's another one http://anausa.org/forum/index.php?topic=5815.0

Another http://anausa.org/forum/index.php?topic=5875.0

You get the picture 

You might also want to PM members who had GK and ask about their experience.

Jan

[Jimbo]

Grace,
I had GK procedure at Columbia Presbyterian 3 weeks ago, and have felt great ever since.

It is obviously too early to assure that tumor growth has stopped, until at least the 1- and 2-year MRI results.

This past weekend, I experienced extreme dizzyness and even seeing double. Doctors say this is a normal reaction, and a positive sign that the tumor is dying.
Started treatment with recommended anti-inflammatory ibuprofen, which helped considerably, but still was not completely steady. Now on the fourth day of a 5-day regimen of steroid dexamethazone, which has relieved the balance issues. Side effects of steroid are sleeplessness, and hiccups, so I have cut the dosage in half, after consult with Dr today, and all symptoms are relieved.

Have resumed all normal activities, and resumed working out at the gym yesterday. We are scheduled to go on a vacation trip to Europe next week.
Life is good!

Jimbo

[GRACE1]

Jimbo,

Sorry about your dizziness and double vision, but that's to be expected sometimes.  I am truly glad you did so well.  Have a great time in Europe - l'm jealous.

[Nancy Drew]

Jan,
Thanks for the sites.  I will be checking them out.

Jimbo,
Glad to hear that your GK procedure went well.  I am hoping to have it done soon.  What size was yours and symptoms?  I have fairly good hearing, and I hope to come out of GK with decent hearing.  I know people say CK is better for hearing preservation, but I just don't feel comfortable going that way, and it is not available for me in this area.  I am scared about the steroids because they cause me to have terrible, terrible depression.  I am still  in the asking phase with the doctors.  In the meantime, it is nice to see positive GK stories here.  Hope things continue to go well for you.  Keep posting.

Nancy 

[gordy]

i had gk last year for 1.5 by 1.5 tumor. the precedure wasnt bad at all. the worst part for me was when they were removing the screws from the frame and head. i told them hes screwing them tighter when in fact it was the pressure from him unscrewing them. after my 6 month mri there was some swelling  but there was darking of the tumor. 2 weeks ago had my 1 year mri and it showed shrinking my 2 mm i think he said. the doc was busy so they offered to send me a pic. 2 weeks ago and still havent recieved it but i guess the results were what thery were hoping for. hope that helps someone here. i read here often just dont post much. if anyone has questions of what i experienced let me know. good luck to you all.

[Nancy Drew]

Gordy,

Thanks so much for posting your positive GK story.  Hope the thing continues shrink.  Keep posting.  Seems like GK people don't post as much, and it is always nice to hear a positive outcome. 

Nancy

[Dana]

Hiya,
I had Gamma Knife at Univ Washington/Harborview July 19, 2007.  It was, basically, a breeze.  A little pain 'screwing' the headframe into my forehead, but I'd just say "ouch" and they'd shoot me with more ... I believe it was novacaine.  I of course was on "la-la" drugs via IV.  I was on steroids for three days afterwards and REALLY got the house cleaned!  (Actually, my husband and I got legally married three days later, on July 22nd... a mini-home wedding, just to legal it, but a wedding nonetheless.  I told him if I ever wanted a divorce or annulment, I could argue I was drugged..... tee-hee.  (Won't happen, don't worry.)

I had followup MRI 6 months later, a little growth and a little grey necrosis starting.  By the way, the 'growth' may have been no growth at all since the EXACT 'slice' that an MRI image takes can't be exactly the same as one taken previously.  On the other hand, ANs often swell in response to the GK.  In any case, it wasn't a very large increase in size.

I thought my hearing had gotten slightly worse, but a hearing test at the same facility showed that my hearing was exactly the same.  The balance issues I had before GK are about the same.  Sometimes better, sometimes worse.  Nothing worse than looking like I've had a little too much to drink, sometimes having to catch myself.  No accidents yet.  I've just s..l..o..w..e..d down:  I do one task at a time.  Open the car door, then put my feet out, then get out, then get my purse, then shut the door, then lock the door.  Instead of doing it in one motion, as I would have previously.

My tinnitus is also about the same as before GK treatment; luckily I can hear it as simply 'white noise' and it's not an annoying sound.

I do think that my sound recognition may be deteriorating a little, so I'll probably start looking into hearing aids at some point, although I also have psorisis (sp?) in my right ear, so I'm not looking forward to tickling it more!!

I was a little fatigued during the month after the treatment (after the steroids that is!!), but otherwise no symptoms.

Just gotta wait to see if the GK kills the AN and gives me my "mummy".

If you have questions, fire away.

Ciao,
Dana

[mk]

As Jan mentioned, there are indeed many threads and posts on GK. Most of these posts deal with recent treatments, i.e. people who just had their procedure done, or are a few months post-GK. What I guess is lacking, and is the reason for so many questions and anxiety, is that there are very few follow up stories, describing what has happened after a couple of years, or more. At least this is what I found frustrating at times, that it seemed that most of the people who did GK did not provide any long term follow up. So, there is no real way to tell what the long term outcome was and of course, this is what people who are researching treatment options would like to know. I wonder if this means that the outcomes were positive, this is why people didn't feel the need to participate actively on the forum, or if there is any other reason

Anyway, I have already described my story in one of Nancy's previous threads, but I guess I have one of the largest ANs on the forum that was treated by GK, a few months ago, in April. I was diagnosed in October 2007, and back then the radiologist had undereported the size (2.4 instead of 2.9 cm). None of the doctors I consulted mentioned the discrepancy, and I decided to have GK being quite confortable with the size. I only found out what the real size was after a second MRI, just a week before my scheduled treatment. The doctors did raise some concerns about the size (the previous day before my treatment!) but eventually they were OK to go ahead with it because there was no brain stem compression involved. Needless to say, that last week after I realized the true size was hell!
Anyway, they used a somewhat reduced dose (11 Gy instead of the standard 12-13 Gy), because of the size. I have read in the medical literature that this is pretty much standard dose for these sizes. Treatment itself was not too bad (of course frame and all, as everyone else has described). I only had some minor swelling in my forehead, and this is pretty much it. No medications, no steroids, nothing.
After treatment I haven't had any symptoms of fatigue, diziness etc, hearing is still at 100%. It basically feels as I had nothing done at all. The 3 month MRI showed everything is stable for now, no change in size, no swelling.
So far so good 

Marianna

[leapyrtwins]

Marianna -

I think your theory about GK patients not always posting after their treatment is a valid one.

However, in addition to you, there are still people posting on this forum who had GK a couple of years ago.

I can think of two active forumites off the top of my head - GM (had gamma knife in 2003) and Sue "from Vancouver" (had gamma knife in 2006) - and I'm sure there are several more.

Jan

[Sue]

You betcha!  I had GK in April of '06.  So far, so good.  My experience was fairly normal I think.  Nothing too horrible happened afterward.  The first week afterward with the steroids was not so much fun because of the insomnia aspect of the drug.  I had some dizziness, but not a lot.  The doctor is happy with the way things are progressing, so that's good.  I hoped that my symptoms would ALL GO AWAY, but that's not going to happen.  Tinnitus, facial numbness, hearing loss, odd little nervy things going on (tingling, tastes, tiny pin prick pains, that kind of thing) vague disorientation at times (Wonky Head, as we say), and things like that that I am still coming to terms with are with me daily.  But, it's better than it was.  And I'm grateful it's not worse.  And the dumb thing is dying.  Life is good. 

Sue in Vancouver, USA

[ppearl214]

Vancouver Sue!!!!!     

I know you are on my heels for radio treatment and just had my MRI done this week (I peeked at my films... can you all say YAY for what I saw!?!    )  Sending my continued wishes to you as my hope (and for all here) that your films show that head thingy you got is dying its fugly death.

thanks for sharing your GK story here. I knew you'd show up to help out!

xo
Phyl

[leapyrtwins]

Phyl -

let me be the first to say "YAY"   

Congratulations!   

Jan - heading home tomorrow

[Sue]

Aww, Phyl, you're the greatest!  I can't wait for your update.  You know, the main thing I am disappointed with is the absence of any super powers.  I mean really.  After getting nuked in the head, you'd at least expect something fun - like X-ray vision - or something. But nothing. Nada. Zero, and Zilch.  (Gee, I hope some Celebrity doesn't name their twins that combo....And here are the boys, Zero and Zilch!)  I mean, I watch Heroes...and I'm thinking...so why can't I control the space-time continuum?    It's just not fair.  

So how's it going in Boston town?  Got any Olympic champions?   We have the Women's Fencing champs, right out of Beaverton, OR, I do believe.  Awesome.

Sue