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Chronic Pain Management Support Group

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18d

Anyone on here that’s in their 20’s. Im a 22 year old female and I have been struggling with chronic pain and just would love to feel less alone in this. :)
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1m

Hello, it's me, Samantha, again!
This may be a TL;DR but if you're willing to read thru that will mean a lot to me. Sorry for taking so long to update everyone here regarding my stem cell tx last year. That said, I now know I *really* need the support and will be on here more often.

I have a severe case of discogenic L5S1 back pain due to a spontaneous L5S1rupture (connective tissue disorder) while sitting in a chair on 10/11/2018. I have not been able to sit upright in a chair since that time. Never been overweight or old; it was the connective tissue disorder that caused the disc to pop. No radiculopathy/nerve involvement at all, but no matter, I still can't sit. I use a portable zero-gravity recliner EVERYwhere I go to keep my quality of life (work, restaurants, church, waiting rooms, concerts, etc etc). My maximum sit/drive time only continues to reduce over time. I can sit upright just long enough to use the toilet, and I can drive for 20 minutes, with a driver seat that has been expensively rigged into a recliner.

Last summer I was able to drive for 60 minutes before the flareup would set in. Then in Sept 2021 I regrettedly exceeded that 60 minute limit resulting in one of the worse flareups I have had including complete inability to drive, and even having to squat to use the toilet, until my next epidural. After the "September incident", my max drive time went down to 20 minutes before developing that debilitating axial (central) deep upper sacral/L5S1 bone pain flareup that never ends until I get an epidural.

Even after several failed conservative treatments and a new lifestyle of daily physical therapy, nobody had recommended back surgery because the cause of my back pain is discogenic, which most of the pain docs in Tucson seem to be clueless about.

In November 2021 I travelled to TX to one of the best neurosurgeons in the US, Marcella Madera MD, and had intradiscal stem cell injections L3/4/5/S1. I was told to wait 4-6 months before testing its effectiveness.
6 months later, in May 2022, I tested out the effectiveness of the stem cell treatments by attempting a road trip (with my best friend along for the ride just in case). However, *once again*, 20 minutes into the drive, I had to hand over the wheel to my friend, and ended up needing another epdural. So,THE STEM CELL PROCEDURE DID NOT HELP my case, and my condition continues to worsen. The TX neurosurgeon recommended I try Lumbar disc replacement at the TX Back Institute. Wanted to try some more things because my insurance is catastrophic only. (AZ has no options for self employed individuals)

2 wks ago my pain doctor (Dr. D) finally realized my pain was discogenic (which I guess is rare and none of the Tucson pain docs have much knowledge about this) and he recommended a "basivertebral ablation". Last week I consulted a back surgeon (Dr. H) who immediately diagnosed me with discogenic L5S1 pain, and he recommended a "sinuvertebral ablation". I will be trying both of these (out of pocket as my insurance is useless). Dr H, the surgeon from last week, said if those ablation procedures do not help, he recommends I seek help at.... you guessed it... the TX Back Institute, saying I was a perfect candidate! This happens to be also the same place that Jay Resio the founder of this forum had told me about approx a year ago.
So......This is a big reason why I am getting back involved with spine nation. I have a pretty good career (I'm a doctor and now I see my patients from a recliner using a lap desk, and my office has two standing desks) so I've saved up $30k over the past 2 years in event that I might need the lumbar disc replacement, but I am scared that I might have to cash out my retirement fund to pay for it. I guess I am just hoping to get advice on how other people have been able to afford the LDR procedure. Odds are highly that everyone here has real health insurance. I have heard about LDR procedures done in Germany which I will start to explore if it will be less expensive (but only if the quality is just as good). Anyway THANK YOU for reading to the end of this, if you did !!

P.S. I will be starting a *comedy-chronic-pain* support group at my medical practise. I already have about 15 interested people. I might be able to recruit clients via telemed, but I have to look into the logistics of that. This will give me (and others) some spiritual peace of mind regardless of whether or not I am ever able to sit again. :-)
-Samantha
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