• kelly-miller

    May 6, 2021 at 12:10 pm

    I developed severe hip pain around age 45-ish. I went to the MDA neurologist b/c I wasn’t sure if it was SMA related or just from sitting in a wheelchair for the last 40+ years. He told me that b/c I was part of a set of SMAers that was beginning to live longer for the first time, it was difficult to tell which caused the problem, the sitting or the SMA. Regardless of the cause, there was nothing to do about the pain other than stop sitting more than 4-5 hours a day. Well, that wasn’t going to happen! I had a f/t job and a social life.

    I have to say I was pretty angry at that doctor, but I later calmed down and understood what he said. His only other suggestion, which I didn’t like, was pain meds. I wasn’t really into taking pills, so I tried other things first, the most helpful being an injection and radio frequency ablation. This was done at Shephard’s Spinal Center in Atlanta where I lived. They were strictly for spinal cord injuries along with neurological issues such as SMA for one. This doctor knew what he was doing! The shot of steroid in my back, in my spine in the lower part, did stop the hip pain. He said it would probably only last a couple of yrs tops, but this is going on 13 and it hasn’t needed repeating. Unfortunately, the ablation did not work on the sciatica that developed shortly after the hip. B/c of my spinal fusion, it was impossible to get the medicine into my spine between the proper vertebrae. He tried me on a tens unit, but that didn’t work either. The only answer at that point was pain meds b/c the pain had gotten so severe it made me cry.

    I won’t bore you with the progression of meds thru the yrs. I’ll say I’ve been on heavy duty opioids for the past 3 yrs, and they work tremendously. I take extended release morphine twice/day and hydrocodone 3x/day. It’s the only thing that’s gotten rid of the excruciating sciatica. They don’t make me sleepy or out of it, just help me deal. Along the way, I’ve tried life without the meds a few times (usually during hospital stays when  non-SMA or non-pain mgmt Drs thought they knew better), but it would go back to unbearable pain. As long as this works and doesn’t make me out of it, I’ll stick with the plan.

    The most important thing to remember is that everyone is different. You may never have pain, someone may be able to fix it without meds, or a dose of tramadol might do the trick for you. Don’t worry about something that may never happen.  It’s also been those almost 13 yrs since I first saw that neurologist. Hopefully their knowledge has changed (I haven’t heard of it yet.)

    • deann-r

      May 7, 2021 at 9:33 am

      Thanks for being so candid about your struggles Kelly. I’m sorry you’ve had to go through that, but glad you’ve at least found a regimen that somewhat makes your pain manageable. Curious, do you see a physiatrist for pain management? I was referred to one once but couldn’t stand the guy. He thought he knew more about SMA than I did because he had a girlfriend once who had a kid with it, smh.

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