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Topic: TRIGEMINAL RHIZOTOMY (Read 514 times) |
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EDHASFORDS
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TRIGEMINAL RHIZOTOMY
« on: Jun 17th, 2004, 1:17pm » |
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I am new to this board and would appreciate any info. on the procedure. My neurologist wants me to do it and I am a little concerned about what all is involved!
I am a chronic cluster head 4 years and overall cluster sufferer 18 years. A long time with the beast!
Any feed back would be helpfull!
callie bro. 
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CALLIE BRO.
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don
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Just curious.
How long have you been seeing this neuro and what other treatments have been tried?
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EDHASFORDS
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Re: TRIGEMINAL RHIZOTOMY
« Reply #2 on: Jun 17th, 2004, 2:37pm » |
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I had my first appoinment 3 weeks ago. I have been to many neuro's including UCLA and SC headache center. I have been on most preventivities you see on this sight. Prednisone is the only one that has had any impact on slowing or stopping a cycle. I use imitrex, 02, zomig (when not on imitrex). Believe me if it was offered, I tried it!
I do like this Neuro as he seems to know more than me!
Please dont take that the wrong way as I have been to many doctors that I had to explain what a cluster was!
Hope that helps a little with my background!
callie bro.
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CALLIE BRO.
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don
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3 weeks seems to be a short doctor/patient relationship to be suggesting radical treatment.
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EDHASFORDS
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rRe: TRIGEMINAL RHIZOTOMY
« Reply #4 on: Jun 29th, 2004, 6:58pm » |
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I am sorry I have not been available the past couple of weeks however, I did want to reply to your last statement re: Doctor, Patient relationship time wise!
I have known of this Neuro for several years as he is in the same med group that my GP is in. I have had several appointments to see him but never got around to it!
I assume that the Trigeminal Rhizotomy procedure is not common place. Yet, the Neuro seems to think it is a walk in the park.
Still haven't made up my mind!
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CALLIE BRO.
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Kris_in_SJ
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Re: TRIGEMINAL RHIZOTOMY
« Reply #5 on: Jun 29th, 2004, 8:36pm » |
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You might want to check out the "getting to know ya" board. There's a recent link posting by un_solved that describes all the various procedures he's gone through. Don't know if this is one of them, but he's sure been through alot.
For some reason, anything that ends in "otomy" sounds like more than a walk in the park to me! Probably too many psycho movies ....
Keep us informed.
Kris
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miapet
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Re: TRIGEMINAL RHIZOTOMY
« Reply #6 on: Jun 29th, 2004, 10:43pm » |
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Sounds scary to me . . . how many of these surgeries have been done? and how many has this particular doc done?? and what have been the results??
*positive light and energy*
miapet
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Clusterbusters Rock
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UN_SOLVED
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Re: TRIGEMINAL RHIZOTOMY
« Reply #7 on: Jun 29th, 2004, 11:01pm » |
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Quote:| "Trigeminal rhizotomy is the destruction of the sensory root of the trigeminal nerves above or at the trigeminal ganglion,for the relief of trigeminal neuralgia" |
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Quote:| "The most common surgical techniques used are Dandy's operation and the Frazier-Spiller operation. Rhizotomy is used for pain relief associated with neuralgias such as migrainous, trigeminal, occipital, and glossopharyngeal. It is also used for spinal cord injury, chronic lumbar radiculopathy, severe intractable pain, vasomotor rhinitis, cluster headaches, tic douloreux, and severe bone pain due to metastatic osteosarcoma" |
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>> CLICK ME <<
I've had some of these surgical techniques that were a little different. The RFG and some of the other "blocks" uses medications or microwaves to temporarly "block pain signals".
Anything that "destructs" the nerves may lead to facial paralysis permanently. I would advise seeking other treatments before destroying nerves that may help the cluster but possibly leave your face and tongue paralyzed forever.
Have you tried OC blocks, Sphenopalatine blocks, Facet blocks, RFG, or possibly even a neuro stimulator ? They are all non-destructive options.
See the procedures I've done here:
http://www.chhelp.org/michaelsprocedures.html
Anything I might be able to help you with, just ask !
Best wishes,
Unsolved
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EDHASFORDS
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Re: TRIGEMINAL RHIZOTOMY
« Reply #8 on: Jun 30th, 2004, 6:39pm » |
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Thanks to all who shared! Special thanks to UN_Solved.
I am begining to think this should be looked at a lot closer. The possiblities are too questionable!
When you have been in pain as long as some of us, a few more days, weeks, whatever the time, it just makes good sense to get it right!
I know that there is a light at the end of the tunnel!
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CALLIE BRO.
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Re: TRIGEMINAL RHIZOTOMY
« Reply #9 on: Jul 1st, 2004, 10:44pm » |
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Just ran across this person who has had this procedure ... or one very similar. Doesn't sound too good!
Here is her story:
http://www.chhelp.org/barbara.html
Unsolved
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EDHASFORDS
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Re: TRIGEMINAL RHIZOTOMY
« Reply #10 on: Jul 2nd, 2004, 3:39pm » |
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Thanks again to UnSolved for all the informaton from your perspective and others!
Your input has really made up my mind not, to have this surgery! Not that I am afraid of a little pain but what the final results could be.
Now, back to the drawing boards. I am leaning toward something that grows in cattle fields. HMMMMM, I wonder if my Neuro has anything in his little closet?
Just kidding!
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CALLIE BRO.
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MichaelForman
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Re: TRIGEMINAL RHIZOTOMY
« Reply #11 on: Jul 5th, 2004, 9:06pm » |
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I have a very mild case of trigeminal nerve compression caused by spasm of the trapezius muscle. The symptoms are pain behind the eye, watering of the eye, and soreness of my neck just behind the ear. I am on a muscle relaxant and deep fiber massage of the neck by a physical therapist. So far 90% cure.
When I feel a headache coming on, I reach behind my neck with the opposite hand and massage the muscle running from my back and shoulder to my head just behind the ear. I also try to touch my opposite shoulder with my ear thereby streching this muscle.
Michael Forman
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UN_SOLVED
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Re: TRIGEMINAL RHIZOTOMY
« Reply #12 on: Jul 5th, 2004, 9:51pm » |
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on Jul 5th, 2004, 9:06pm, MichaelForman wrote:| I am on a muscle relaxant and deep fiber massage of the neck by a physical therapist. So far 90% cure. |
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Glad the muscle relaxers and massages are helping you.
This WILL NOT help a 'clusterhead' with 'cluster headaches' though.
Unsolved
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gore2424
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Re: TRIGEMINAL RHIZOTOMY
« Reply #13 on: Jul 12th, 2004, 2:15pm » |
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Hello everyone my name is Terry and I live in Iowa. I got layed off from work Jan. 2002 due to a staff reduction (yeah right). I was missing too much work and life was hell I was always in basement pacing banging my head on wall before I turned to go to other wall. I have been caught in garage pounding my foot toes with hammer to try to draw pain away from head. Was going to ER every 7-10 days for a shot for the pain. I went as far as going to Mayo and had a (TRIGEMINAL RHIZOTOMY) done. They cut nerve on right side of face leaving it all numb for my lifetime but only got 3 months relief. Talk about going into depression. I am now on a combo of meds only have a few nasty 9-10 kips a week. So with-in the month I filled for diability. Was deined 4 months later and had to do the appeal thing. This time I got every record I could find going back 10 or more years. Plus I wrote a 17 (front and back) page of what my life has been since I went chronic in Nov. 1999. And also in this letter I wrote down every med I was on at the time and their side effects. I was aproved in Nov last year and was paid for 3 months because after they make decission for disablity they take off 5 months from when you filed the very first time and pay you back pay. I was very lucky that my unemployment lasted til 3 days before aproval. I hope that helps you its just give them all info you can and go back as far as you can on the records and write them and let them know the quality of your life and the meds effects on you and family and your job if working. If I can help anyone I will but please please dont contact me if you are trying to scam the system. Its not fair for others that really need it. Terry (gore2424@aol.com)
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UN_SOLVED
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Re: TRIGEMINAL RHIZOTOMY
« Reply #14 on: Jul 14th, 2004, 11:12pm » |
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on Jul 12th, 2004, 2:15pm, gore2424 wrote:| They cut nerve on right side of face leaving it all numb for my lifetime but only got 3 months relief. |
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damn sorry to hear about that Terry.
Goodluck and i'm hoping for some PF time for you.
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