Anyone had Spinal stimulator removed? Replaced?

@mamabear62,
I'm tagging @24swart @genomacc @jimhd and @sparshall in case they have experience with switching stimulators and having the leads removed. You may also be interested in these discussions:
- Has anyone one tried the HF10 Spinal Cord Stimulation Device? https://connect.mayoclinic.org/discussion/hf-10-spinal-cord-stimulation-device-relieves-back-and-leg-pain/
- Spinal cord stimulation: Will Nevro help when Medtronic didn't? https://connect.mayoclinic.org/discussion/nevro/

Have you considered non-surgical options?

@mamabear62

I had a Burst DR spinal cord stimulator implant in June of 2015, which worked great for the first 2 years. During the 3rd and 4th years, I had to have the amplitude adjusted every three months. This past year, year 5, it's been doing less and less, so by now it's doing nothing. On Friday I have an appointment with the neurospecialist to discuss a dorsal root ganglion stimulator implant. If I decide to do it, I'll have the SCS removed. From what I've heard, removing a stimulator is a minor surgery.

Could you tell me why you have chosen the hf10? I don't know anything about it, but I'm going to look at the links Colleen mentioned.

@colleenyoung - KateC's son has had both the scs and the drg implants. Perhaps she would be willing to share their story.

Jim

Thanks for the tip @jimhd. @katec, might you have some thoughts about removing stimulator leads or replacing one stimulator for another?

@mamabear62 @colleenyoung @jimhd

My son did a trial for 7 days of a DRG stimulator. When you do a trial, they only implant the electrical leads into your spine and the actual device is externally taped to your back. It was a pretty minor surgery to implant the leads and my son was able to go home that same day. Had the stimulator provided some pain relief for him, they would have done another minor surgery to insert a small device just under the skin and it would be controlled by a phone. Since the DRG didn’t work for him, he just had an office appt to have the “leads pulled”. He said it was uncomfortable but not overly painful to have the electrical leads removed. I think the worst part was how irritated his skin was from all the tape/bandages that were there to keep the leads and device in place. If you do a trial, you will have a representative from the drug company who will do the “adjustments” for you and make sure everything is working properly. Ours was wonderful and was devastated when it didn’t provide any pain relief for my son. Our experience was with the trial for a stimulator and not a permanent one, so I’m not sure how similar/different the two would be from each other. Hope this helps!

@katec How is your son doing? The burning in his thigh was a temporary problem, right? I'm curious if he's found any medication that helps with his pain. The last one my pain specialist prescribed in September (Imipramine) worked for a few months, but has gradually lost its effectiveness. The neurologist started me on Prednisone, with the thought in mind that it might slow the progression of neuropathy. I have an appointment with the neurospecialist tomorrow to figure out where to go next. As you know, I continue to pray for him daily.
I don't mention his name because I'm not sure you want it to be public.

Jim

@jimhd You're so sweet for asking about him! I try and respect his privacy by not mentioning his name Since he’s so private about this entire situation. I try and tell him that people aren’t being nosy but are genuinely asking so they can maybe offer a suggestion or even just a simple prayer but at 16 years old with this condition, it’s just hard so I try and look at it from his point of view.

But, he had his first IVIg treatment a couple of weeks ago. He hasn’t had any pain relief yet, but his doctor wasn’t expecting anything this early. He will have two more rounds before we assess whether or not he’s seeing any pain relief and if we should continue. The only side effect he had was a severe headache the second day of treatment, so he was given another bag of fluids after his Day 3 treatment and that seemed to make a big difference and no more headaches. Hopefully we figured this out for the second round and he won’t get that awful headache at all. 🤞🏼

If the IVIg doesn’t work, we will reconvene with his doctor and see where we go from there. I’m assuming back to trying different meds to see if we can find him any kind of relief.

Jim, I’m so sorry to hear your meds aren’t working anymore. My son tried Prednisone for 30 days and didn’t respond, but didn’t have any side effects either. His doctor did want him on calcium pills while taking the Prednisone so make sure you ask your doc about that for yourself! Another doctor recommended Vimpat, but his neurologist wanted to try the IVIg first, so that may be a drug worth mentioning to your doctor.

Thank you for your content prayers!! They mean all the world to me and to him as well.

Kate

@katec

I'll ask the neurospecialist tomorrow about Vimpat. I don't remember hearing about that one. My regular neurologist is having me talk Prednisone to try to slow the progression of the neuropathy. I haven't noticed that it had any effect on the pain, except that it is helping the arthritis in my thumb. I'm a pianist, and I hope that arthritis won't mess with that. I had a cortisone shot a couple of months ago, but I told the doctor that the arthritis pain is going to get really, really bad before I get another shot that hurt that much.

I've seen discussions about IVIG, but it's never been suggested by a doctor. I need to look it up and see if it's something to consider.

Being a 16 year old boy is challenge enough, without the added medical issue. Dealing with the pain of neuropathy as a nearly 70 year old is hard, but we expect to be taking on the various aches and pain of advancing years. Not so, at 16. I surely pray that he will find a treatment plan. And I pray that you will have the strength to walk through it with him.

Jim

@katec Sorry about your husband. What is wrong with his spine and I'm not familiar with the treatment he's having. I hope something works there's nothing worse than pain. I am post- op a fusion to my back from T-10 to my low back of my spine. It was a 9 hour surgery with some complications. I will pray for him.

I had a Hf10 stimulator put in July of 2020 and now I have more pain than I can hardly bare ! The doctor the hospital was differently a mistake and it traumatized me to the point I'm afraid to go back! The trial went great but when the permanit one was put in they couldn't find my setting and the unit was turned off to see if it was causing me pain which I turned off but still I was having more pain than before the surgery and in places that I wasn't even hurting in to began with such as my side and under my rib cage! So I began physical therapy. At first it really helped then once again the excruciating pain returned! I feel HOPLESS!! And the unit has been off for almost the entire time! The doctor that did my surgery only practices in one Hospital which I refuse to go back ! I live in a small town but the biggest town 4 hours away called Birmingham alabama I'm trying to find someone there to help me. I dont know IF ? It needs to be removed or if it's just my petite size that's the problem? I'm a very active person at least I was Can someone plz plz help me? Wanting to die has never crossed my mind until now! Bc this pain is so intence I'm not sure how much more I can take!

I think you need to talk to the company that makes the stimulator itself and have them suggest a different doctor/pain management team. Obviously something is very wrong...you shouldn’t be feeling like this! Has the point of service rep been helpful - for the stimulator company? They usually work with more than one doctor and should be able to give you other names! You may indeed have to travel further.
This is JUST A GUESS on my part but having been a hospital RN in a hospital - 3 hospitals serving a city of 225,000 people plus wider outlying areas - we used to see all sorts of patients who’d been misdiagnosed/mistreated as in undertreated...from smaller rural hospitals. If you have something unusual going on they may not be even able to recognize what “it” is. You need to see someone who treats patients like you daily/weekly. Good luck!