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:( [quote]I will be attending the conference in Omaha in September 2017. I had an implant in Nov 2016, and was told if it worked a permanent implant would be done in Dec. The neurological team agreed spinal cord stimulation would be a good option for me, as I am taking 6 mg of Clomazapam a day.
Surgery- a implantation of a cylindrical lead was inserted into the epidural space until stimulation in both lower limbs. An external stimulator was attached and adjusted. At high level of stimulation the effects were minimal, when stimulation turned down to a thumping feeling ,I was able to stand still for over 5 mins. I was seen by the the the surgeons assistant 3 days after to check dressing and effectiveness of device, as well as neuropsychologist, who saw the large change and my ability to stand. Surgery was scheduled for the next month, to have permanent implant. Two days before scheduled surgery I was informed the procedure was denied. I was shocked, the day they removed the temporary implant I was back to my previous state. Unable to stand for more than 20 secs without having to move. With it in, I was able to shop at a book store comfortably, I even turned device off when entering a large craft store, and was only able to get to the back of the store,while looking at things on the way. But then I had to sit and turned device back on and was able to do my shopping normally.
The device was made by Medtronics for SCS for chronic pain.
The device is only approved for intractable pain, and the surgery is not accepted or OT in the Medicare coding books.
We need to join together to get these things changed, if we want some relief from our disease and symptoms. My doctors were unable to get around the denials sent, and I am only getting worse.
OT patients count too, I realize there is not many of us. Do you have intractable pain? How about emotional pain. I have had two traumatic falls, not due to OT, breaking my foot and crushing my right shoulder, requiring replacement in 2014 and a fall in July 2015, fracturing my upper left humorus. I have arthritis in all those places, so the pain in my thighs, which is like a burning and throbbing pain at all times.
I will be available at study in Omaha in Sept, and am open to any questions and may do a presentation.
Looking forward to seeing you all,
Annetta Muir
Hello all,
I have been in touch with Annette over this and will arrange for her to give a presentation - possibly more than one so that anyone interested can hear about this in Omaha in September.

I have also contacted Dr. Torres about this. He is aware of this procedure and I asked if he will talk to us about this at the symposium that is going to be held in Omaha and he will, so that is excellent and we can ask him questions.

Hi Annetta, I am so interested in your experience and am glad you are sharing it with us. I just think it is so promising and wonder how you were able to get a doctor to do it. Was it his idea? My Doc. does not seem to be willing to try it. I'm also surprised that it has not gotten more attention on this site. Do you really think it would be a permanent solution? I wish i could attend the conference,but can't. I'm really hoping this will be in my future-sounds good to me. Is there any progress in getting it approved? I have so many questions about it and look forward to getting results of conference and your experience with Dr.Torres. Good luck ! Margie1627
Permanent placement of Spinal cord Stimulator was denied twice by my insurance and Medicare, after my doctor sent in documentation, that the trial had been successful. He used a stimulator that he knew was off label and no code for it in ICD Medicare code book for this orphan diagnosis. After this my Dr seemed to become nervous about going forward. Why do trial when permanent device can not be used after positive trial. Very frustrating
Hi, I'm still wondering if you have had any success in getting a permanent implant. I'm also following the clinical trial being conducted in Paris in which they are placing the device exteriorly. The action could be the same. but does't involve surgery. I look forward to your thoughts. Thank you,Margie1627
No, I never did get the spinal cord stimulator implanted. My doctor put in for a reconsideration, which was also denied. After that he did not even want to attempt to go any further. I got relief from the tremors for about 5 minutes, before they started again, but after I moved a few steps it worked again. This was the external device and could only be left in for a week due to risk of infection.
I, myself do not want to do this again, until approved and others have shown it works. My experience has left me disalusioned, and I am trying to get my life back. I have been decreasing my clomazapam slowly since last Sept from 6 mg a day to 2mg a day. I am more able to think clearly and the 2 mg in the am keeps me going for a good part of the day.
I still shake when standing still and on line in store does me in. I sew and quilt and have 5 chairs spread through the room.
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