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spinal cord stimulator with chiari?
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spinal cord stimulator with chiari?

HI guys, I've had Chiari and been battleing the Dr's here for several several years, hunting and searching suffering insurance and medical ignorance.  Today I was told the ONLY hope for me is a spinal cord stimulator. implanted, in my body, to treat the stenosis and spinal cord impingment at c5/6/7 ( because chiari isn't real according to the ONLY spine surgeon here and he's been saying that to my face for 4+  years).  I argued the no spinal tap, I argued the I have to have MRI's every year.   He told me no one needs a yearly mri, that's a scam, and they can just do a cat scan I don't ever need an mri.   when we had to ask him ( I was already in tears because he really doesn't care or believe anything I print out from Chiari experts so why would he care)  if there could be ANY problems putting an electronic device that high in my C spine when I have chiari, he rolled his eyes and told me to look it up.  I haven't googled anything medical in over 4 years, for my own emotional preservation.  So here I am googling and crying, reading symptoms, problems, and the fact my life, my quality of life, my entire way of life, is so irrelevant this genius can't spend even 5 seconds googling chiari,  literally less time than 1 level of angry birds, nope, my life, my childrens lives, aren't even worth that.   So here I am life in the hands of a ton of suffering strangers asking if anyone knows anyone who has had a neuromodulation spinal cord stimulator at the upper C's of the spine and how it affected their chiari.  ** he is NOT putting in the stimulator to treat the chiari,  he is doing it to eliminate the pain, which he thinks is the reason I have siezures, fall down,  can't feel my hands and legs, and a million other typical chiari things because chiari isn't real, or a big deal, and his view is that the stimultor will cure the problems of the c5/6/7 and then I will be fine becasue again.  Chiari isn't real.  I don't need to get worse, I can't live any worse.  So please contact me if you have any info, experience or even a doctor you trust that has an opinion.  Thanks.
5 Comments Post a Comment
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4816750_tn?1368808270
Good morning and welcome.  From what I have read you need to see another doctor.  He sounds like a EGO man.  He is always right and nobody else know nothing.  So do yourself a favor and find a specialist.
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620923_tn?1413427272
  
  Hi Peachy...I know u r stuck in who u can get to, and I know how frustrated u r with Drs in ur area....and other then to ask if u can get to that Dr in Florida, I do not know what else to say.

I know bcuz u r so upset that this Dr is not giving u the best option for u....I do know we have had other members that had the spinal stimulator but I think they got their post op for perm nerve damage....

Also make sure u do not have EDS if they want to implant nething in u bcuz those with EDS tend to reject foreign matter more times then not....

((hugs))
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1306714_tn?1327260680
So sorry to read your having all these problems, but I highly suggest you see another Dr because of this procedure he wants to do to you.  I acturally brought this up to my NS the procedure because I cam across a woman that had one put in, and my NS stated "YOU can not have this put in"  which I wasn't wanting one, but thought the procedure was interesting.  He told me anyone who has Chairi should not have this done ever..  Please look into someone else.
Linda :)
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906843_tn?1245212494
Love you guys.  yep I was a little upset when I asked this, I am beyond frustrated.  The Neuro folks here, are really pushing the implant of the stimulator for my c5/6/7   and when I bring up mri's or chiari they act like I am speaking in tongues and stupid or drunk.   It's very very very hard emotionally.   they told me to find out if it's a problem and bring them evidence..   even the thought of me having to continuously educate the non willing medical community let alone PROVE to them why it might be a bad idea makes me want to vomit.   I have learned to trust a handful of great doctors that I might never meet ( and thankfully they are so wonderful they will do things on line or via phones)  and the chiari family. You guys, especially Selma and Shane.   I wish I could make my insurance pay them, they are more knowledgeable and helpful than any doc i have met.  I trust my fellow Chiarians, and respect your choices, your stories, and your courage.. I apologize for my lack of character during the original comment, my heart was broken, yet again.
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620923_tn?1413427272

  Peachy u have nothing to apologize for....it is understandable, I was the same way after I saw a few NS's around here...got the same type of thing...I was told I had Chiari, next Dr said no u  do not u need surgery for bulging disks and nothing more, the next Dr said yes u have it but it is beyond me....so I do know how u feel....I was not told once I had the DX that it was mental issues, but long b4 in my teens I was sent to a shrink and therapy....what a waste of time...they even gave me prozac....

U educated urself,stay strong to what u know is the truth....and keep pushing for answers....I can only suggest u get a Chiari specialist that is willing to consult with ur Drs there....

  ((hugs))
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