Spinal cord stimulator thread: Questions, experiences, and stories

Rebecca Cappello, thank you for inviting me to this forum to share my experience with the Spinal cord stimulator and Ankylosing Spondylitis.


How I arrived to point of stimulator implant and where I am now with it....




I moved and i switched to a different Doctor. This Doctor found that my calcium levels were high and referred me to a specialist who found by looking at my records, that the 1st specialist that did surgery to remove the adenoma had failed to remove it and had in fact ignored the pathology report that stated he had only removed some tissue...so 5 years later, I finally get it removed and for a short while feel better.
My physical decline drastically started within the year following that second thyroid surgery. My back pain drastically increased over the year as well as knee pain. I was forced into giving up my supervisor position at work because I could no long walk the facility keeping an eye on things and was basically placed on light duty. By the end of that year, I had been in and out of hospital with one issue after another( vestibular neuronitis, breathing problems leading to diagnosis of COPD with Asthma) by end of the year, my doctor was telling me I should go ahead and start filling for disability. I had also been diagnosed with severe osteoarthritis, fibromyalgia and sleep apnea at this point.
To date, I have had both knees totally replaced, my right thumb became drawn under and in towards my palm, had had thumb joint removed by wrist and now have 45°curve in thoracic spine and scoliosis now neck area and also in lumbar as well as spine trying to twist around in lumbar area.
By the time I became disabled, I could only stand for 2 minutes max before I would be in tears with the pain and my thighs numb. I could no long stand yo cook meals, do laundry, do any housework. I lost any and all ability to do most anything..I sank into deep depression as my weight began to drastically go up with all lack of activity. I was trying everything...physical therapy, aquatic therapy, epidural steroid injections, nothing would help very much or last very long.
I happened to catch an episode of the show Doctors I believe it was, there was a guest on talking about the spinal cord stimulator and how it had given her life back. I started researching info on line about stimulator and I inquired about it with my Interventional Radiologist who was giving me the injections. With in a few months is had completed the requirements to proceed with the implant.
The Spinal cord stimulator started giving me relief and I was able to start standing few minutes longer...anything was better than the 2 minutes I had gotten to. I then started back with the aquatic therapy on my own at our local community center and gradually began to build up some muscle back in my back and started loosing a little bit of weight..and my spirits started lifting as the stimulator kept helping more and allowing me to gain a bit more of my life back.
The stimulator is wonderful. It has helped so much with the pain. I very highly recommend it...however my pain started building a bit more then I ended up with a few more hospital stays for pneumonia, congestion heart failure and during my stays, the lab work started coming back with blood cell counts out of wack... I ended up referred to my local Cancer treatment center and was told I needed a bone marrow biopsy as things were indicating possible Multiple Myeloma. THANK God the results of the bone marrow biopsy proved that not the case but did finally lead to the diagnosis of Ankylosing Spondylitis...that has been a journey in itself..lol. My Rheumatologist I was referred to put me on Humera injections that seemed to help some but not a whole lot..then I was forced to change Rheumatologists due to insurance change making current one out of network...next to the spinal cord stimulator, this was the best thing to happen because my current Rheumatologist would keep trying other medications and even infusions...each would help just a bit more for a little bit but not enough...I am now taking Cosentyx injections 2 injections a month both same time and along with the spinal cord stimulator and the cosentyx injections I am now able to grocery shop without riding on the power chair...actually walking pushing a cart!!! Yay!! Lol. I am also able to clean house more though I do have to take breaks, I am able to do it. I can now stand longer and walk farther than I have in a number of years!!!
I am so grateful for the spinal cord stimulator and the cosentyx for giving me my life back!!
I am sorry that this was so long ( trust me, I cut alot out and tried to condense..it was a ten or 13 year process). I hope that my story will be one of encouragement for someone who is going through similar situation. If you are considering the stimulator, I want you to know that it was the best decision I have ever made and that I have had no issues or regrets at all with mine. Please become an advocate for your own health and don't be afraid to research.
Best of luck on your journey and God bless. Keeping you in my thoughts and prayers.
Sincerely,
JodyTaylor

I am considering getting a spinal cord stimulator for full spine pain that has been worsened/not helped by surgery. I would love to hear stories of efficacy after implant. I think this may be my next step after thoracic spine surgery to relieve the pressure the discs are putting on my nerves. Has anyone implanted for neck pain?