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Thu, Jun 25 6:28pm · Anyone had Spinal stimulator removed? Replaced? in Spine Health

@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

Thu, Jun 25 4:23pm · Anyone had Spinal stimulator removed? Replaced? in Spine Health

@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!

Sat, Jun 13 8:43am · Covid delays my Mayo Pain Rehab hope in Neuropathy

Oh no, I know how much you were looking forward to getting started! Everything happens for a reason, but still so frustrating

Fri, Mar 27 9:40am · Small Fiber Neuropathy burning? in Neuropathy

Thank you so much for your response. His “flare” has gone away for now. Makes me wonder if it’s stress related (all that’s going on right now) or just the disease taking its course….I’m sure some of both!

Mon, Mar 23 10:15am · Small Fiber Neuropathy burning? in Neuropathy

@rwinney Rachel, we are still working with insurance regarding the IVIg. They’ve been pretty difficult (losing forms, saying they’re incomplete, etc) but our doctor has been great in following up with them. I’m actually supposed to call insurance today for an update so fingers crossed!!

Sun, Mar 22 7:51pm · Small Fiber Neuropathy burning? in Neuropathy

@jimhd Your prayers are so appreciated!! I cannot thank you enough for them!

He had a DRG trial last summer. He didn’t get any relief from it (no ill effects either other than with the trial device it’s awkward to move around with the wires and tape) and it baffled the drug rep and pain doctor. He would feel the sensations of the DRG in all the right places (where he had pain) when they would adjust it but it never provided any pain relief. It was disappointing, but it was just added to our long list of things tried for pain relief that failed. So far, we still haven’t found anything. Insurance is still reviewing his case for IVIg, so even though it’s taken a long time, at least they haven’t said “no” yet! If he does get approved, who knows when he could start it with the quarantine.

We have some lidocaine that’s been prescribed in the past that I will offer him if it bothersome tonight when he’s winding down. This quarantine is tough on him because he can’t go on walks or hikes around the neighborhood because it just hurts so much, but he has all this energy and desire to do stuff. Since it’s supposed to stop raining this week, we will heat up the pool for him but since he’s a kid he’ll want to run around it, wrestle with his brother, jump around etc so he’s in pain then too. Oh well, one day we will find something that works for him!

I hope you have great success with your DRG, if that’s the route you choose to go. Everyone deserves to not be in pain and do the things they want to do!!

Stay safe and busy during this quarantine!!

Sun, Mar 22 7:38pm · Small Fiber Neuropathy burning? in Neuropathy

@artscaping thank you so much for your input! He’s having that burning pain on top of his thigh just like you described. Right now it sounds more like a nuisance and just new so he’s unsure about it. I will def let him know to tell me immediately if his pain/burning travels anywhere else, especially to his torso!! This is all new to us, so I really appreciate your thoughts!! Thank you!

Sun, Mar 22 7:34pm · Small Fiber Neuropathy burning? in Neuropathy

Thanks Rachel! He hasn’t been too descriptive with this new pain other than calling it burning. He had this one other time on his wrist when he was on Gabapentin, so I just assumed it was the drug. I’ll run it by his dr, but I thought this group would have an immediate answer for me and I was right!! Thanks so much! I always appreciate your input and advice!! I hope you are feeling well!!