Thank you.

CRPS, fibromyalgia, and Small Fiber Neuropathy sufferer. Had a Spinal Cord Stimulator implanted in my 2nd, 3rd and 4th vertebrae and unfortunately I was unable to ever use it, it made my CRPS much worse. I’m scheduled for removal surgery but would love to talk to someone who has gone through the same. I’m told this is a really tough situation because of the placement being in my upper neck.

I got the Boston scientific wave writer Alpha implanted back in 2022. After a successful trial, I found out that the battery shifted during a fall up against the rods and screws in my back, causing even more interference, especially near my husband who has diabetic and CGM. So they moved my battery away from the rod and screws out near me. I started losing weight causing it to shift bringing it closer to the skin. In doing so after a few falls, it started reacting up really bad. I felt electrical shock even my therapy was turned off. I’ve gone in for several reprogramming. I’ve had CAT scans MRIs and too many x-rays. I’ve never been able to get off of my narcotics. I was just able to lower my therapy for a while until I had another fall after a seizure. Looking at the programming, the rep assured me that nothing was wrong and that there was , everything on the programming that showed I wasn’t having any electrical shocks that they could detect. What I have felt in my own body and I can tell you with 100% truth, honesty and extreme physical responses that have brought me to my knees, I have had shocks . Since having my SCS implant, I had both knees replaced. I can’t turn my stem on for longer than 20 minutes due to the healing of the tissue around my knees still healing. It makes me feel like the back of my hamstrings all the way down to my calfs are plugged into an electric socket . Every time I have gone to have the Boston rap reprogram and evaluate my settings. They say there is nothing wrong. I know that there is but nobody will believe me. I have a long history with Pain after numerous falls car accidents patient accidents, slip, and fall on ice , hell I even have the talent of falling walking upstairs! I also take for analeptic drugs. I take an antidepressant. I’ve taken muscle relaxers along with medications that are supposed to help with
Neuropathy pain. They threw me in the category of fibromyalgia so suddenly everything gets dismissed under that diagnosis. I’ve tried literally everything from chiropractic acupuncture massage therapy, cupping, CBT, oils, and even pot. Only to be dismissed because I’m bi polar.. As if that diagnosis would explain a way the proof of scoliosis and degenerative joint/disc disease! I’ve been to every specialist under the sun with them only to put hard-core proof in the term practicing medicine. July 3 I fell and broke my wrist, landing hard enough that witnesses said I actually bounced. I’ve been to two emergency rooms one South Carolina and the other in Colorado where I live. I’ve seen three different orthopedics. Am I pain management doctor twice along with my PCP. Yet in all of this time I can’t get anybody to x-ray let alone or MRI anything but my wrist. The pain in my wrist is so bad that it radiates I’ve been to my neck . But the worst part is I’ve told all of these doctors that I am getting daily shocks from my SCS that has been turned off since the middle of May. But in doing the report, it shows no damage to the leads so I am just dismissed. If I had it to do over again , I would have never had this placed! Because even having MRI controls so that I’m supposed to be able to get the scan facilities have turned me away saying that my device is not compatible. All I wanted was to be able to severely decrease my narcotics, if not , totally being able to stop taking them. At my last pain management appointment my doctor said that I needed to be realistic due to my health conditions. I was never going to be able to stop my narcotics and the other medicines that are supposed to help relieve my pain . But due to the opioid crisis that our country faces I get looked down on at the pharmacy for coming in at every month to receive the quantity and strength of my narcotics. Since 2015 when the CDC changed the rules I haven’t been allowed to take clonazepam or Xanax due to doctors not wanting to take on that risk. My anxiety has gotten so bad that I don’t know what to do.. My heart felt prayer go out to you. I hope that my comment gives you some clarity and perspective. Do not beat up on yourself for the Cards. You have been dealt! Some people would say that you got lucky enough to fall for the snake oil scam.. my advice is learn how to breathe so you can play the recorder and charm them back into the basket 😂