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   Anyone tried/ know about gamma knife
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   Author  Topic: Anyone tried/ know about gamma knife  (Read 338 times)
sgarner
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Anyone tried/ know about gamma knife
« on: Feb 27th, 2004, 11:02pm »
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In the talking stages with my doctor about this procedure . All help and comments appreciated.
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BobG
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Re: Anyone tried/ know about gamma knife
« Reply #1 on: Feb 28th, 2004, 12:18am »
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Be careful. Be very, very careful when it comes to surgery. You may end up with a numb, saggy face and still have cluster headaches.
Please click on the links below.
 
http://www.clusterheadaches.com/wwwboard/messages/74124.html
Rodger Griffin (1-11-01, Stereotactic Radio Frequency Rhizotomy)  
 
http://www.clusterheadaches.com/wwwboard/messages/100398.html
Margi (7-12-01) list of posts about NOT having surgery
 
http://www.allsands.com/Misc1/gammakniferadi_uux_gn.htm
describes Gamma Knife Radiosurgery
 
http://www.neurosurgery.ufl.edu/ClinSpec/trigeminal.html
Microvascular decompression (Janetta procedure) surgery for Trigeminal Neuralgia
(Be VERY wary of this site. I don’t believe a word it says.)
 
http://drjho.com/id68.htm
Endoscopic Microvascular Decompression and Percutaneous Glycerol Rhizotomy    Trigeminal Neuralgia surgery (I wouldn’t trust this site or doctor. I only put it up to show what bullshit is available for the right $$$’s)
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Re: Anyone tried/ know about gamma knife
« Reply #2 on: Feb 28th, 2004, 1:27am »
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i didn't know the surgery was done by gamma knife.  over on achenet, someone asked about surgery for clusters and the expert there said that there are currently two surgeries available, but ya gotta find someone who really knows what they're doing when it comes to surgery and head pain.
 
be safe,
lizz
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Re: Anyone tried/ know about gamma knife
« Reply #3 on: Feb 28th, 2004, 2:28am »
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I've had a Glycerol trigeminal rhizotomy, a Microvascular decompression and a Trigeminal nerve root section all within a 4 year period - in that order. Half of my face is now numb, I bite my tongue and cheek regularily (due to lack of feeling) and i've had 3 corneal abrasions since my last surgery (again due to lack of feeling in my eye).  
 
Although all have worked for me for a short time, I still have these headaches. If the surgeries would have taken them away, I would do them all again in a heartbeat.  
 
If you have this procedure done, make sure it is after you've exhausted all other options.Do some research on the Neurosurgeon that will ultimately be doing the procedure. Find out how many he/she has done for cluster headaches in the past as well as the success rate. Find out about ALL of the possible side effects. Then make an informed decision.
 
If you have any questions, please IM or email me and I'll do my best to get you the answers.
 
This site shows some of the different procedures used to treat CH's medically and surgically:
http://www.mhni.com/clusterheadaches.html
 
Good luck and keep researching!
 
Graham
 
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Re: Anyone tried/ know about gamma knife
« Reply #4 on: Feb 28th, 2004, 6:53pm »
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Bob has given you some excellent links.
 
Just wondering: you must be having a bad time with the headaches to even consider Gamma Knife. What meds and procedures have you already tried ?
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sgarner
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Re: Anyone tried/ know about gamma knife
« Reply #5 on: Feb 29th, 2004, 12:54am »
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Thanks for all the help. I haven't tried enough medications to agree to the surgery nor is my doctor ready for me to.  He knows how I like to research and mentioned that if my meds did not work that the surger was a possibility and that there was only 1 surgeon in Alabama that would do it (and that was guranteed).  My doctor will no longer prescribe Prednisone because of the law suits.  Currently on Verapamil
and Bacoflex.  Just added Indomin (not real sure of these spellings).  He is not through with his bag of tricks yet.  The severity of the pain is not near what is was a year ago (althought I still have those 2-3 per month. I am still having headaches 3-4 times per day of the 3-4 range on a 5 point scale.
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Re: Anyone tried/ know about gamma knife
« Reply #6 on: Feb 29th, 2004, 1:38am »
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on Feb 29th, 2004, 12:54am, sgarner wrote:
 He knows how I like to research and mentioned that if my meds did not work that the surger was a possibility and that there was only 1 surgeon in Alabama that would do it (and that was guranteed).  
Did your doc mean he guaranteed there was only one surgeon in Alabama that would do it or did he mean he guaranteed the surgery?
IMHO, if he guaranteed the surgery to be successful to cure you of the cluster pain I'd be real skeptical of his knowledge of clusters.

 
 I am still having headaches 3-4 times per day of the 3-4 range on a 5 point scale.
That ould be a 6-8 on the kip scale. We have a special pain scale for clusterheads. Click 'the kip scale' button on the left side of your screen. If we all use the same scale we all know what we're talking about.
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sgarner
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Re: Anyone tried/ know about gamma knife
« Reply #7 on: Mar 4th, 2004, 10:43pm »
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After reviewing the kip scale you are correct 6-8 scale 2-3 times per day. 9-10 scale 1-2 days per month.
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