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Topic: I have a SERIOUS decision (Read 494 times) |
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UnsolvedEquation
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I'm at a hotel near MHNI and Chelsea hospital. The next step at trying to stop my headaches is not an Occipital Nerve Stimulator like i thought. They are recommending a new kind of "RF" ( radio frequency ). The docs seem real excited about the procedure. They also say there is little to no harmful side effects. I believe I will be the FIRST CH'er to have this procedure. I guess I'm going to go through with it on Monday. First is a 3 day DHE treatment (hooray). Does anyone have any thoughts on the "RF" procedure or does anyone know of anyone who's had it done ? Please input quick. I can only check this board until Saturday at 4 pm.
PS...this is NOT the procedure where they permanently cut, burn, or damage the nerves. As far as I know...it is a 'heating' procedure that will stop pain signals from the head and face from reaching my brain. Supposed to last 12 - 18 months. ???   
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Karla
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Re: I have a SERIOUS decision
« Reply #1 on: Aug 29th, 2003, 3:01pm » |
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I have not heard of this procedure. Good luck. Hopefully this will work for you. I will be praying for you. I am just glad it isn't an invasive procedure that cuts or numbs your face. Sounds like there is no side effects so I would go for it.
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Karla
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Tom
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Put «radiofrequency rhizotomy» into the Google and read !
Below several informations and links:
wipain.org/stateoftheart.pdf
«Cluster headache as a syndrome is well described. Reports of open trials using RF treatment of the sphenopalatine ganglion indicate good results, though these findings need to be confirmed by controlled trials».
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http://www.mayfieldclinic.com/PE/PE-TRIN.HTM
Percutaneous stereotactic radiofrequency rhizotomy (PSR), also known as electrocoagulation, produces a heating current to destroy some of the trigeminal nerve fibers that produce pain. PSR eliminates pain but also causes partial numbness of the face. This outpatient procedure is performed under local anesthesia and sedation. While the patient is awake, an electrode is passed through the cheek to stimulate the nerve and locate the pain-causing area. The patient is then anesthetized as the surgeon destroys the portion of the nerve that carries the pain.
PSR is effective because it provides the most lasting pain relief by destroying part of the trigeminal nerve. PSR provides immediate pain relief for 99% of patients. Of the 15% of patients whose symptoms recur within 10 years, medication, repeat PSR, or another surgical procedure will again be considered. PSR can cause minor complications, such as double vision or weakness of the jaw. Partial numbness in the area where the pain existed is a normal side effect. Other complications, such as blurred vision or chewing problems, are usually temporary
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http://www.tna-support.org/Tnalert/heat.html
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http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed &dopt=Abstract&list_uids=97171484
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http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed &dopt=Abstract&list_uids=95358792
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Well, this procedure is a pretty old and a well known one, it's a ±modified trigeminal dissection - to undergo it is a SERIOUS decision, indeed !
Thomas
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| « Last Edit: Aug 29th, 2003, 3:24pm by Tom » |
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TomM
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Re: I have a SERIOUS decision
« Reply #3 on: Aug 29th, 2003, 3:17pm » |
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Wow!
Unsolved, Good Luck with the procedure.
TomM
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2late
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Re: I have a SERIOUS decision
« Reply #4 on: Aug 29th, 2003, 5:34pm » |
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haven't heard of that procedure, best of luck & let us know. ...........Jack
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UnsolvedEquation
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Re: I have a SERIOUS decision
« Reply #5 on: Aug 29th, 2003, 5:40pm » |
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Thanks for your replies everyone. I will let you know what happens as soon as I can. I may be hospitalized for up to 2 weeks. Tom check your IM...I think what I am having done is maybe a 'modified' version of RF that concentrates on the Occipital Nerves. Anyone else have any comments ... please post ! Thanks all !
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UnsolvedEquation
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Re: I have a SERIOUS decision
« Reply #6 on: Aug 29th, 2003, 5:42pm » |
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OH YEAH >>> MORE VIBES PLZ !!! I think i'm gonna need em' !!   ;D
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Cooked Brain
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Re: I have a SERIOUS decision
« Reply #7 on: Aug 29th, 2003, 5:46pm » |
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good luck Unsolved, i hope this will SOLVE something for you
vibes and positive thoughts coming your way! Hang in there and let us know how it went...
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Kirk
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Re: I have a SERIOUS decision
« Reply #8 on: Aug 29th, 2003, 5:46pm » |
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Could you give the exact name of the procedure please. I think I might be confusing two similiar ones.
I say enough stupid things as it is.
Good luckmy friend.
TTFN
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Patrick_A
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Re: I have a SERIOUS decision
« Reply #9 on: Aug 29th, 2003, 7:25pm » |
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Oh man, scares me to think about sumptin like that. You are one brave person! I hope this works for you.
HUGE VIBES
Patrick
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| « Last Edit: Aug 29th, 2003, 7:27pm by Patrick_A » |
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Charlie
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Re: I have a SERIOUS decision
« Reply #10 on: Aug 29th, 2003, 8:21pm » |
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Hope all goes well for you.
Charlie
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Mr. Happy
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Re: I have a SERIOUS decision
« Reply #12 on: Aug 30th, 2003, 12:20am » |
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on Aug 29th, 2003, 2:49pm, UnsolvedEquation wrote:| Supposed to last 12 - 18 months. ??? |
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Might want to ask what happens in 12-18 months.........
Damned shame you have to hurry into this.
I always hated going first.......didn't you........
RJ
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firebrix
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Re: I have a SERIOUS decision
« Reply #13 on: Aug 30th, 2003, 12:57am » |
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All the very best UnsolvedEquation!
Please keep us posted.
firebrix
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Carl_D
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Re: I have a SERIOUS decision
« Reply #14 on: Aug 30th, 2003, 1:07am » |
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I've been there many times. MHNI that is (Michigan Head-pain and Neurological Institute. For a couple of years I lived near Ann Arbor, and was under the care of Dr Weintraub. That was when I was first put on Lithium and Verapamil, which did wonders for me at one time. Now it doesn't do much at all for me. I kinda feel left out in the cold with no abortive, no pain management, and the CH attacks are getting more frequent. Now my fear is that it will fuckup everything I have going right for me right now.
Peace and PFDs&ns,
Carl D
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Mahle421
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Re: I have a SERIOUS decision
« Reply #15 on: Aug 30th, 2003, 3:42am » |
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I hope it works for you. Let everybody see the results. If it works for you, why wouldn't it work for others?
Good Luck!
Jason
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UnsolvedEquation
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Re: I have a SERIOUS decision
« Reply #16 on: Aug 30th, 2003, 10:27am » |
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Thanks everyone. I'm headed to Chelsea hospital now. I'll post as soon as I get out and let you all know exactly what they did and how things are going.
Here I go !!
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STABBINGPAIN
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Re: I have a SERIOUS decision
« Reply #17 on: Aug 30th, 2003, 11:28am » |
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Hugs and kisses !My thoughts and prayers will be with you.. Hope the best and may God bless the doctor to do an excellent job.
Karen
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totka
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Re: I have a SERIOUS decision
« Reply #18 on: Aug 30th, 2003, 9:17pm » |
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Good luck! I hope so it will solve your "equation"
totka
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hdbngr
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Re: I have a SERIOUS decision
« Reply #19 on: Sep 2nd, 2003, 4:31pm » |
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Yep, they are excited about this procedure, aren't they? I had two of them, spaced several months apart, but it didn't work for me.
I certainly hope this procedure is the answer for you, though, and you will be in my prayers.
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BarbaraD
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Re: I have a SERIOUS decision
« Reply #20 on: Sep 2nd, 2003, 4:41pm » |
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I had the stereotactic radiofrequency trigeminal rhizitomy (or however you spell the darn thing) and it didn't work, but I've got some great optic nerve damage and a numb left side and a paralyzed chewing muscel. But other than that, I'm in great shape.
Good luck with the procedure. Let us know how it turns out.
Hugs BD
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