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.
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....
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.
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.
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....
I had an MRI in my twenties. The brain MRI showed no Chiari. I had a spinal cord stimulator trial. Two weeks later, I started to develop neurological problems within two weeks. It started with intractable rectal spasms.It then progressed to spasticity from the navel down. This developed into urine retention, constipation,sexual dysfunction,severe G.I. problems, lower extremity weekness, etc.I had the surgery to decompress the Chiari... After this operation, I lost balance, coordination,and severe dystonia in my left hip. I believe that the spinal cord stimulator trial is responsible for the problems. I have an intrathecal drug pump and Baclofen seems to help with the spasticity,but all my other problems are permanent. I can't find a single neurologist who said they could help. So I suffer with you.
I am a bit confused by what you say happened to you....your MRI showed no Chiari , but they implanted a stimulator...and symptoms worsened then they did the decompression surgery for Chiari on you?? Is that correct?
May I ask was your Dr a true Chiari specialist? And were ALL related conditions ruled out?
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