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mamabear62 (@mamabear62)

Anyone had Spinal stimulator removed? Replaced?

Spine Health | Last Active: Mar 29 2:22pm | Replies (23)

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@katec

@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

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@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.