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STEM CELL TREATMENT FOR ARACHNOIDITIS
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TOPIC: STEM CELL TREATMENT FOR ARACHNOIDITIS

Re: STEM CELL TREATMENT FOR ARACHNOIDITIS 1 year ago #3098

  • JerryBorsh
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Almost 3 weeks now and still pain free from adhesive arachnoiditis after a stem cell transplant by a neurosurgeon, Dr.Shehadi in Columbus Ohio. This is my own blood spun down to concentrate the stem cells and then reinjected into my spine and by IV. I woke up from the procedure completely pain free and no symptoms of that damned arachnoiditis.

This certainly worked for me.
The following user(s) said Thank You: ann, bradfranklin23

Re: STEM CELL TREATMENT FOR ARACHNOIDITIS 10 months, 3 weeks ago #3108

  • Debwilson
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That’s such good news. Have you continued to be pain free??

Re: STEM CELL TREATMENT FOR ARACHNOIDITIS 2 months, 1 week ago #3336

This is so interesting... I wish I had read this sooner. 50% seems like a decent success rate if the adverse event rate is low.

I received MSC from my own adipose tissue in June 2017 after two years of hellish pain (and 900 mg of gabapentin at time of stem cells). By July I was 95% lower pain and off gabapentin.

I had a lumbar puncture in 2009 that started this with a pressure feeling, but no pain until 2015. The connection between LP and arachnoiditis is clinically clear, according to my doctors. though they won't put arach on my chart (actually removed it). My MRI is clean as of 2019 January, EXCEPT for S1/S2 TC that are deemed minor and were present in 2015 unchanged, but missed and only found in retrospect.

I never had pain down my legs/feet (OK, only a little, after progression started) before my first round of stems. It was nearly all torso, around the L1/L2 location of LP. Playing basketball in 2018 March really hard because I felt normal, I really caused a flare that went down my legs / feet. Got more stem cells in May 2018, this time bone marrow from my ischial spines, because cheaper ($6K). 10 days later I was back off of gabapentin and remain so despite lots of running (tippie toes only, short distances no grown-up basketball). I get the flares 2-3 days later but I consider myself extremely fortunate. Yeah, I have buzzing most of tthe time, and some numbness, but no lightnight strikes most of the time. Those were unbelievable. Wow. My best guess is inflammation exacerbated TCs in S1/S2 and led to this. Thank god for stem cells. I literally can't imagine what my life would be like without them, but i know my kids wouldn't have much of an active dad.

Dr. Tenant just mentioned that he is seeing more stem cell success stories. Of course it's costly stuff thanks to insurance not paying because of lack of clinical studies and of course big pharma runs the show at every point in decision process.

I'm sure I saved my insurer way more than $25K in gabapentin and eventually opioids by spending that much myself. Imagine the human suffering that could be relieved even if the 50% rate held true. Of the 30ish folks I'm tracking with on FB - many long haul arachnoiditis folks doing much better, much lower meds and more active.

I think the description here is the best Ive seen about the potential mechanism... local immunoregulation via stem cells or possibly exosomes crossing bbb. We know from another recent Dr. Tennant bulletin that MAJORITY of arach folks have CSF leak so there is clearly some loss of integrity of BBB, which may actually help stem cells do their work. It would make sense that body would allow communication between CSF and blood under inflammatory conditions (either by plan or by failure of BBB).

LOL, I just saw my posts from years ago in this thread. So I guess this is an update. I'm being interviewed by statnews.com about my stem cell / arach journey. I believe it's a small contribution to our community. I hope, anyway - I think the author has integrity and will tell my story with it. I will share when I see it.

Also see veteransinpain.org/ and www.mystemcelltherapy.com/arachnoiditis/ for more info about stem cells for our condition.

My experience suggests that if finances are not an issue, there is no health reason NOT to try IV stem cells. I'm not a doctor, just saying I've heard only one person say they felt worse after stems, but weren't sure if it was natural progression. And they have many conditions, so that's something to think about. If you want to go further and try something more invasive, that's obviously different. Intraspinal doesn't have great risk of going spinal or exacerbating things, but who knows. Many are doing intranasal as well. Not sure. Some are doing exosomes and getting good results but only recently so no clue about long term outcomes.

All I got were IV stem cells, which, amazingly enough, changed my life.... twice I'm a relatively early case but major improvement seems to be available to the majority - strong majority even.

I'm not claiming panacea, I can't advise anyone else, but I didn't want to pull any punches on the very real, very widespread success I'm seeing over the course of several years now. I'm 2 years 2 months post-stem cells and counting. Honestly I'm seeing a slow trend toward worsening over time, but then I'll have these incredible 3 month breaks where I feel normal. Usually feb-April when I've been less active over the winter.

Just finished a long haul move, so now I'm back online looking for latest stem cell developments and trying to reassure myself there's another parachute available if I go back into free fall. It's not like we can just keep taking bone marrow, and fat is pricier, or at least it was. So maybe exosomes next.

Re: STEM CELL TREATMENT FOR ARACHNOIDITIS 2 months, 1 week ago #3337

I do know one person whose intraspinal stem cells MSCs formed a tumor. It was removed and she is still way better off. So I'm not sure how worth it the intraspinal MSCs are. Seems like IV is better risk/reward to me. The science is basically this: when you get in a major car wreck, or even a sprain, there are stem cells mobilized to help with healing.

Basically, getting stem cells is releasing the healing of a major car wreck, and they don't just act locally... they put your body in a different state, esp. those areas emiting cytokines, etc. IF you've seen movie "miracles from heaven" where a girl is healed from chronic condition (gut, terminal) after a fall from a tree, you get the idea.

Stem cells are a miracle just as our own bodies are... plenty of caveats, of course. Your mileage will vary. But that's true with nearly all drugs. The main differences is that insurance will pay for drugs, some of which can devastate us. I know Stem Cell Network of clinics are conducting outcomes-based research (not controlled studies) for many years now. I have no idea how or if that will impact the situation, but one would like to think it will.
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