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Gamma Knife experienced complications.

kulaken
Posts: 14
Joined: Sep 2011

I am scheduled for gamma knife next week and am concerned about any complications from this procedure , my tumor is on my right visual horn and has been been deteriorating my left visual field. the edema as well as the lesion has been the culprits of my deteriorating my eyesight , as a carpenter im in need of my vision to survive financially,

Any personal experience with this procedure would be of great help to my research on this illness, ,,

kulaken
Posts: 14
Joined: Sep 2011

Since i posted my question back in feb , i received no information on this gammaknife procedure i had undergone , my treatment was on the feb, 14'th ,, out patient , i seemed fine for the first 3 days , but all the sudden i started shuffling around , hard to walk slurred speech , balance was like a toddler learning to walk , mild headaches , fell down a couple of times , ,, the Dr's put me back on dexamethasone ,, thinking i had some more edema or swelling from the treatment , here it is now april 12 'th , and im doing better ,, scheduled for another CT scan w/ contrast in 2 weeks to see what had happened ,, im still weak , sometimes disoriented , loss of cognitive skills due to the full brain radiation i went through back in oct , last yr , but hanging in there ,, after being diagnosed with stage 4 GBM , aug 4'th , im surprised im still here ,,

Ken

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

Sorry you had no replies. I have AA3 diagnosed on 10/20/09, and had never heard of the Gamma Knife until I joined this site. I had a resection, radiation, and chemo. I have had good MRI's since with the exception of a small cyst that came back after a couple months post operation. The cyst has not grown any since they noticed it.

I hate that I have no information you are looking for, but I will keep you in my prayers!!!

Michelle
Mobile, Al

mike999
Posts: 3
Joined: Apr 2012

Hello Ken,

I'm pleased to read that you are still fighting and hope that you continue to do so successfully.

I start combined Chemo and radio shortly on the site of where the tumour was after being 100% removed in a 6hr operation.

I am like you in that I need to work to survive financially and hope that in one way or another I will be able to do something to earn.

But first I have to try to hold this off.

Thanks for sharing your experience with your treatment and best wishes and good luck.

Mike

pjohns
Posts: 3
Joined: Apr 2012

I to had my tumor behind my left eye, and was told they would have to use gamma knife right away or I would lose the use of my left eye and possibly my right. Even when I was laying in the radiation chamber, my eye ached. I ask about the side effects and was told that they differed from person to person. It has been a week and I have tried to stay busy. My side effects are disorientation, vision coming and going, slight headaches, bright lights really bother me and I know I have swelling. No one really prepares you for the effects. I received very little instruction. One nurse said that she had worked in the area from the beginning. She said the most important thing to do is to try everything that I could do to reduce brain swelling. She stated that along with steroids that they could give someone diuretics for swelling. She said that I should stay away from salt or anything other than natural type foods. She also told me absolutely not to lay flat. She said that it would increase brain swelling. She said that if there was any brain swelling at all, the symptoms and complicaations would increase with lying flat, as the brain would swell more. I have not seen that advice in print anywhere, so I thought that I would share. Also, the peak of the side effects do not occur until 1 1/2 years after the procedure.

kulaken
Posts: 14
Joined: Sep 2011

Ty johns:
I havent heard the lying down flat aspect of swelling ,, but i do know after all the research i have done ,, as they say ,, Every one is different ,, the 1 1/2 yrs i have heard before , im in hopes im out of the woods for now , im starting to ween myself off the steroids now , as the swelling seems to have diminished after the gammaknife , i have regained a good part of my balance , eyesight has cleared up a bit , cognitive skills i still struggle with as well as thought possess , planing etc , I did quit coffee , the steroids created anxiety and the coffee just made it worse .

I do know salt retains water , i dont know how much remains on the brain , but i do crave salt , I eat just about anything i want or can find in the house ,, hoping the hunger goes away ,, 21 lb gain in 3 weeks , ,

Thanx for your response Johns : hang in there and good luck ...

Ken

Tubbs
Posts: 51
Joined: Jul 2009

Dang, Ken! You're a fighter. Good to read that you've regained some of your balance and your eyesight is clearing up. Keep up the good fight.

kulaken
Posts: 14
Joined: Sep 2011

Thanks Tubbs ,, a daily issue ,, sometimes it is min by min ,,, but being brave is important , also quality of life is essential .. even a few min looking at the ocean , or swinging in a hammock does wonders...

Aloha Ken

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