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Tiannia
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Opinions Please
« on: Dec 22nd, 2003, 1:27pm »
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One of the docs that I am seeing wants to burn the occiptal nerve and the trangeal (sp?) Nerve on teh left side of my head, since that is where it all centers for me.  Please let m eknow if anyone has ever done thi or knows if this is just really stupid?  
 
any points of view would be appreciated.
Tia
« Last Edit: Dec 22nd, 2003, 1:28pm by Tiannia » IP Logged


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Re: Opinions Please
« Reply #1 on: Dec 22nd, 2003, 1:33pm »
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This kind of thing is tricky I believe. Others here can tell you more but it can after other areas. This may be the "droopy" face problem. Not something to take lightly.  
 
Damn I hate what this horror puts us through.  
 
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Re: Opinions Please
« Reply #2 on: Dec 22nd, 2003, 2:39pm »
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Sounds frightening to me Tiannia. Anything around the eyes makes me nervous. My opinion is you need a second opinion from someone qualified. Good luck
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Tiannia
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Re: Opinions Please
« Reply #3 on: Dec 22nd, 2003, 2:50pm »
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Aye - Not really happy that this guy wanted an answer right then. He did an injection into the nerves and it did help for about 3 days.  But I got slammed the hell today.  This the beast is mad that he lost me for a few.  bash  But I am supposed to go and see him again on the 15th of Jan and hopefully my referal for a neuro will be done by then.  But I am just not comfortable with the idea of burning a nerve. Did not think about the droopy face, but just the idea of half my head or face being numb.  I was hoping that someone had heard abut this and might be able to give me any insight.  When I hurt really bad it sounds great especially right now having had 3 days PF.   It seems like if we all pool our info, someone has tried about everything. Not that much of it works.  
 
Please any insight or ideas please post. I want a list of questions to ask the doc. So I am putting it all together.
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Re: Opinions Please
« Reply #4 on: Dec 22nd, 2003, 3:32pm »
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This Doc is not a neuro and he is offering to burn nerves. That makes me nervous.
 
TTFN
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Re: Opinions Please
« Reply #5 on: Dec 22nd, 2003, 3:45pm »
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My own personal opinion -  way too much risk involved!!  The Trigeminal nerve (if that's the one you're talking about) does a whole lot of important things. If the whole thing were obliterated well, you might as well cut your head off and sit in the corner.  
 
I would be way too scared to take that kind of risk!!!!
 
I don't know, but I couldn't take the chance of something happening and then your REALLY screwed forever!!! Its bad enough we have the headaches - don't want to add anything else!!  
 
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Tiannia
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Re: Opinions Please
« Reply #6 on: Dec 22nd, 2003, 3:47pm »
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Thanks guys. That is how I was looking at it, but I wanted to get your thoughts.  This is what I want to have when I call and talk to him about trying to work with the pharmasy on the imitrex nasel spray.
« Last Edit: Dec 22nd, 2003, 3:48pm by Tiannia » IP Logged


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Re: Opinions Please
« Reply #7 on: Dec 22nd, 2003, 3:50pm »
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I was given the choice two years ago, 50 -50 chance of it working, 100 % chance of droopy face.  I'm too vain, I told him no way.  Besides these things can change sides, what do you do then?
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Re: Opinions Please
« Reply #8 on: Dec 22nd, 2003, 4:03pm »
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Never heard of that one, but after 12 years of all kinds of stupid shit that docs have put me through with no lasting effect I would say forget it, but we all have to make our own choices Tongue
 
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Re: Opinions Please
« Reply #9 on: Dec 23rd, 2003, 1:20am »
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My opinion, for what it is worth, is NO!!!
 
Everything that I have read about others who have had nerves cut, blocked, burned, etc. etc. etc. have had little if any success.  As Thomas mentioned, it can and often will change sides in such a case.  
 
I would ask him how many such operations he has done, and what his success rate is.  Then I would ask to talk with some of his patients that he has operated on.  My bet is you would get no response.  
 
When I injured my back in an accident several years ago my Ins. co wanted me tohave surgery because it was quicker than the therapy I was getting.  The Neurosurgeon I saw about the surgery told me to think carefully about it because "once it is cut it can't be put back if it doesn't work,"
 
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Re: Opinions Please
« Reply #10 on: Dec 23rd, 2003, 7:32am »
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I had it done in 99. The neuro surgeon gave me about an 80/20 chance going in. It didn't work and it damage my optical nerve. He'd done about 1000 of them and was one of the best in the field. Dr. Wayne Hurt in Houston. It's done mostly for Trigeminal Neuralgia and works well for that and sometimes for Clusters. Two cases that contacted me it did work well for. My left side is numb and burns (doesn't make sense but it does). I also have a paralysis in my chewing muscle on the left side that was supposed to go away -it didn't.  
 
Think long and hard before you try something like that. It's a LAST resort when NOTHING else will work.  
 
It's called Stereotactic Radiofrequency Trigeminal Rhizitomy. If the guy isn't a neurosurgeon and hasn't done 1000 of them and doesn't know who Dr. Sweet is DON'T let him touch you. (Dr. Sweet is the Doc who came up with the procedure).  
 
Good luck with whatever you decide.  
 
Hugs BD
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Tiannia
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Re: Opinions Please
« Reply #11 on: Dec 23rd, 2003, 11:57am »
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I showed this thread to my husband last nihgt. And I thought he was going to flip.  Even if I somehow decided that this was the right way to go he would not let me. hehe my knight in shining armor.  
 
Anyway, when I go see this guy on the 15th of Jan, my neuro referal is supposed to be done.  I'm not letting him do any cutting on me.  They wanted to do that for my back as well and the Ortho Surgeon I saw said he would not touch me at this time. "When your disks rupture, then we can talk about surgery."  Not that I liked the sound of When rather then if, but at least it was not shoved down my throat.  
 
The more ammo that I have when I see this guy the better as far as I am concerned.  I prefer to know what the docs are talking about rather then feeling that like I'm a college educated idiot when they use all of the medical terms.  
 
Thanks Tia
« Last Edit: Dec 23rd, 2003, 11:58am by Tiannia » IP Logged


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Re: Opinions Please
« Reply #12 on: Dec 23rd, 2003, 12:35pm »
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Had a nueuro surgeon remove disks c5-c7 - had some nasty herniated dick....  My right arm was numb and ached like hell all day long.
 
They fused it with a titanium plate and 6 screws..  
The bill said $6000 for appliance...
 
here are the xrays
http://www.inovion.com/~reality/front2.gif
http://www.inovion.com/~reality/side2.gif
 
Bottom line..  my hand is still numb and it still hurts...  now I just beep when I go through security at LAX.
« Last Edit: Dec 23rd, 2003, 12:36pm by athos » IP Logged

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Re: Opinions Please
« Reply #13 on: Dec 23rd, 2003, 9:14pm »
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T,
 
  Way to go, never, never let a doctor intimidate you into a descision that HE/SHE doesn't have to live with for the rest of thier life.
 
 I woulda said hell no too...........messing with facial nerves is just kinda freaky.
 
 
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Re: Opinions Please
« Reply #14 on: Dec 23rd, 2003, 9:32pm »
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Wow!
Quote:
Had a nueuro surgeon remove disks c5-c7 - had some nasty herniated dick...

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Re: Opinions Please
« Reply #15 on: Dec 23rd, 2003, 9:34pm »
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[quote author=athos12 link=board=general;num=1072120541;start=0#12 date=12/23/03 at 12:35:41]Had a nueuro surgeon remove disks c5-c7 - had some nasty herniated dick....  My right arm was numb and ached like hell all day long. quote]
 
I am glad i aint never herniated mine!! LMFAO!!  laugh
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Re: Opinions Please
« Reply #16 on: Dec 23rd, 2003, 11:24pm »
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IMHO, don't do it.
Here's some more to read about cuttin' on your face.
 
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)
« Last Edit: Dec 23rd, 2003, 11:25pm by BobG » IP Logged

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