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roachbear1970
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has anyone tried surgery?
« on: Jan 2nd, 2005, 10:16pm »
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i keep seeing articles on trigeminal nerve sugery. has anyone had it? does anyone know someone who performs it??? barrett.
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unsolved1
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Re: has anyone tried surgery?
« Reply #1 on: Jan 2nd, 2005, 10:40pm »
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This type of surgery is not guaranteed success and it has a potential for MAJOR side effects (like facial paralysis). Many patients who have had this surgery have had CH to switch sides. This surgery could also cause another condition which includes facial pain 24/7 (Like a never ending cluster headache).  
 
I believe its [Major nerve destruction]
 
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« Last Edit: Jan 2nd, 2005, 10:43pm by unsolved1 » IP Logged
RichardN
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Re: has anyone tried surgery?
« Reply #2 on: Jan 3rd, 2005, 5:00am »
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  Operative words, "DON'T DO IT!"
 
  Do a search on this board and I think you'll find the general feeling is you try EVERYTHING before you do a "tri-nerve cut".
   Due to other medical probs, I haven't been arround a lot for the past 20 months or  so, but I recall at least two and maybe three on this board who'd  had the procedure and I  believe two of the three had the CHs return on the other side.  And . .. . . for the rest of your life, daily eye drops, constant "novacain lips (like at the dentist) on that side of the face.  Women note that it's very different/difficult putting on makeup when you can't feel what you're doing.
  Didn't mean to go on and on about this, but this is not a step to be taken lightly.  
  Just because they can do it, doesn't mean they absolutely have to do it.  You're the one who's going to live with the outcome.
   How long have you suffered the beast? What have you tried.  What doctors/specialists have you seen.  Intensity?,duration?, abortives?, preventatives? . . . . let us know.  
 
    PFDANs
 
  Be safe,  
 
    Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
don
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Re: has anyone tried surgery?
« Reply #3 on: Jan 3rd, 2005, 7:32am »
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You will not be a candidate anyway unless you are refractive (is that the terminology?) to all medication. None of which you have mentioneed here.
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unsolved1
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Re: has anyone tried surgery?
« Reply #4 on: Jan 3rd, 2005, 9:20am »
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Don is right.  No doc would do this unless you had a HUGE history of failed medicinal / procedural attempts.
 
Have you done:
DHE drip?
Occipital Nerve blocks ?
Sphenopalatine  nerve blocks ?
Facet Nerve blocks ?
RFG ?
ONSI ?
Histamine Desensitization ?
 
All of these and many medicines MUST be tried first.
 
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karma
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Re: has anyone tried surgery?
« Reply #5 on: Jan 3rd, 2005, 9:57am »
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The alternative mushroom treatment has shown great success in breaking cycles and skipping cycles all together for both chronics and episodics.
This sounds much more attractive than having someone put a knife to my head for dubious results.
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nani
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Re: has anyone tried surgery?
« Reply #6 on: Jan 3rd, 2005, 11:40am »
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Have not heard good things about the surgery. I know of one person who had it done, suffered from facial paralysis and it returned full force on the other side.
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Re: has anyone tried surgery?
« Reply #7 on: Jan 4th, 2005, 12:12pm »
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hello i had the operation done in may 2002 where they cut the trigeminal nerve inside my head on the right side I got 3 months relief then bamm cluster came back full force I was the 6th person the Dr in mayo clinic had done this to 2 people headaches gone forever 2 less intense headaches and me and another no luck this was a last chance for me having been on massive drugs of all combos right now I wear a pain patch and take depression and panic attack meds and I get by altho I had to go on SS disability because of drug side effects but I am still alive and kicking and yes i feel nothing on right side of face Terry
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Re: has anyone tried surgery?
« Reply #8 on: Jan 4th, 2005, 12:36pm »
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Cutting the tri nerve is not the only surgery.  There is also the occipital nerve stimulation in which a device is impanted which sends periodic electrical zaps to the occipital nerve and also the deep brain - hypothalmic situlation which the Italians have done (it makes them better lovers too).
« Last Edit: Jan 4th, 2005, 1:49pm by Bob P » IP Logged

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Re: has anyone tried surgery?
« Reply #9 on: Jan 4th, 2005, 1:31pm »
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Quote:
hypothalmic situlation which the Italians have done (it makes them better lovers too).

 
Like they need assistance.
 
The Occipital device is being used for pain management for many other conditions now as well. I think Jerry Lewis had the procedure done and it changed his life.
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unsolved1
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Re: has anyone tried surgery?
« Reply #10 on: Jan 4th, 2005, 3:23pm »
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on Jan 4th, 2005, 12:36pm, Bob P wrote:
There is also the occipital nerve stimulation .

 
I was the first in the US to have the bi-lateral Occipital nerve stimulator. Didn't help at all.
 
on Jan 4th, 2005, 12:36pm, Bob P wrote:
and also the deep brain - hypothalmic situlation which the Italians have done .

 
I'll probably be the first in the US to do this too
 
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