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Medications & Treatments For discussion about medications and treatments for any disease or health condition, including issues of medication toxicity. |
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04-04-2019, 10:12 PM | #1 | ||
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Sadly, SCT (shortened) has gotten a very bad name over the years. Some hoot and holler about the wonders of it; others have spent their entire life's savings and end up no better. Thus, I wanted to share my journey and results.
I first want to tell readers that I am married to a research scientist. This has come in handy countless times over our 21 years of matrimony and this was one of those times. Now for the backdrop, and I'll try to be brief. I don't want to bore anyone.
My brother has a chiropractor that hired a nurse practitioner that "specializes" in this and, at first, I was excited and on board with this. The cells come from umbilical cords and supposedly there are millions of them per CC. My aforementioned wife is extremely uneasy so I back down and let her put her "researcher hat" on and she digs in. By the time she's done, she informs me that the provider of this serum has been in major trouble with the FDA due to making false claims of stem cells! I quickly put on the brakes and start reading up on what she had found. Her searching took her (then me) to Regenexx and the mountains of data that they have on their many years of experience with SCT. They openly tell viewers of their videos that they have tested (with their extremely sophisticated equipment) samples of umbilical and amniotic fluids and can find no viable stem cells (they use the medical term that I can't pronounce, much less spell) in any of the samples. While there is a large number of PRP (platelet rich plasma) present, which does have regenerative benefits, this is the extent of what was found. They have had all of their success (and they have had a LOT of it) pulling bone marrow from the patient themselves, then spinning down the fluid to identify and separate both PRP and stem cells, then injecting THAT into the affected area. Despite the data that's out there that says this is ineffective (and it is out there, my wife found it) that is all old data and the newest research says this is what works. Well, my ortho surgeon practices this method of SCT. She was all for doing this for my knee joint but had never heard of SCT being helpful to a damaged nerve. We had found some (not much) research that said it CAN be effective. Then my primary (family) doctor informs he knew of a patient that was a quadriplegic and went to Taiwan; spent $80k and an unknown number of weeks undergoing SCT and came back able to move his hands and feet. Not able to walk yet but with that control over his extremeties my doc felt it was just a matter of time and he'd be walking again. Enough for this first post - stay tuned for part 2!
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"Thanks for this!" says: | kiwi33 (04-05-2019) |
04-05-2019, 12:52 AM | #2 | |||
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Grand Magnate
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You have my sympathy.
I don't know of any stem cell treatments which have been shown to work for neurological problems. This has not stopped "clinics", in exchange for lots of $$$, selling unproven treatments. Some good work is going on, mainly in the areas of MS and Parkinson's Disease. This is at early stages; proof of principle or very early (Phase 1) clinical trials. I hope that this is successful; evidence-based stem cell therapy would be excellent for people with either MS or PD.
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Knowledge is power. Last edited by kiwi33; 04-05-2019 at 02:16 AM. Reason: Clarity. |
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04-05-2019, 08:43 AM | #3 | ||
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Okay, to continue this story.
(First, thanks for the sympathies kiwi33 but thankfully they're no longer needed as you'll soon see) My next decision I had to make was, do I go with the Regenexx (RGX for brevity) doctor/facility (they actually have one within a few miles of where I work) or go with my orthopedic surgeon? Clearly, the RGX team have exponentially more experience and their equipment is unmatched. When they do their extraction of stem cells (called "aspiration" or "bone marrow aspiration") they separate the cells and actually COUNT how many SC's they have and ensure they have a certain number (can't recall what that number is). They also extract blood from a vein in your arm and spin that down for a highly concentrated concoction of PRP. Their research suggests that the combination of PRP and SC helps the SC last longer in the joint. The PRP provides a very friendly environment for the SC's...but we couldn't find any documentation in their library to corroborate this claim. So, I visited the local clinic and, quite frankly, did not like the doctor (he was cold, "all-knowing", wouldn't listen to me, cut me off, etc.) and I left quite convinced if he wouldn't listen to me now there's a chance he wouldn't listen to me if I moved forward with his center. Not to mention his price was exactly twice as expensive as my Ortho doc. Back to Dr. Ortho I went, and I scheduled. I specifically asked her to "bathe the (nerve-name) in Stem Cells before putting the balance of the cells into the knee-joint" even though she didn't personally have any knowledge of this helping to heal damaged nerves...she agreed (nice to have a doctor that listens to you!). And...she did. After aspirating 50cc of bone marrow and spinning down the cells (took about 20 min) she came back with a huge syringe and we were ready for the next step. She injected just under 1cc directly on top of the Saphenous nerve (that's what got crushed in the accident in '76) then moved around to the other side of the knee and injected 11cc directly into the knee joint. This was Feb 19, 2019. Over the course of the next few days, I tested turning off my spinal cord stimualtor (SCS) but was too scared to leave it off. I had experienced a malfunction in it, once, where it mysteriously shut itself off and I didn't realize it until I was hit with a 9.9 level of pain that had me collapse in a chair my wife graciously ran to grab and put under me, writing in untold pain and tears, unable to speak a word. That memory was very vivid as I even contemplated turning it off. But ... on March 1st, I took a leap of faith and shut it off - keeping the control unit in place and on my person 24x7. Hours turned into a day, then days turned into weeks until now, one month and a few days later, I no longer need the SCS at all and I will be scheduling to have it removed...FOR GOOD!! The joint itself? Exponentially better - I have my life back. I no longer have to think, "shortest distance between 2 points" and I love walking from one point to another with a "spring in my step" ... and zero pain. My pace has already picked up, significantly. And now, as of this afternoon, I start PT to start strengthening the muscles in my R leg that are incredibly weak. My Ortho called it, "Atrophy" and I knew it was bad, just didn't know it was that bad. I truly hope this helps SOMEONE at least consider this amazing procedure. It is absolutely NOT for everyone. If you are bone-on-bone there's little chance it can help but - do the research, talk to knowledgeable people. I am a HUGE success story so I know it CAN work...for both a damaged nerve and osteoarthritis. Absolutely, LIFE-CHANGING for me. I hope I never have to amend this story with bad news but - just, wow!
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04-05-2019, 04:02 PM | #4 | |||
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Grand Magnate
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Bone marrow contains haematopoietic (blood cell forming) stem cells. This is why a "bone marrow transplant" can be used in treatment of otherwise intractable blood cell cancers and related disorders.
Bone marrow may also contain stem cells which can generate other cell types.
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06-01-2019, 11:03 PM | #5 | ||
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OP: I've had regular Prolotherapy in shoulder about 10 yrs ago and had 3 yrs pain free relief. Then over the years I've had Prolo in my right OA knee and had 4-5 injections and doing good and then the last one I had left me with a staph infection from the WHO KNOWS WHAT....it's been a nightmare. I believe in Regenerative Medicine and live with a botched horrible hip replacement now going on 9 yrs....
Prolo, PRP and SCT are not insurance covered and that's a tragedy I believe. Insurance pays for huge surgeries and not this work. I hear pros/cons on Stem Cells for joints....costly and many do not get help. Athletes around the world use PRP mostly and with good results. We have an MD here in LA who does SO MUCH of this work: Dr. Marc Darrow and I have not seen him yet and just can't afford the PRP. But I hobble with this OA knee mess but cannot do a replacement. Thanks. |
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07-28-2020, 12:17 PM | #6 | ||
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Member
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Okay, it's now been 1.5 years since my SCT (stem cell therapy) and I can continue to report amazing results. Yes, the knee joint itself is a bit more painful now than a year ago because arthritis is a degenerative disease and as such the repair done by the stem cells will slowly revert back. This is/was expected.
BUT... The huge "wow" to all of this is the 95% improvement to the main nerve that's been so problematic. I had heard/read that stem cells can actually repair a damaged nerve and I'm here as living proof that this is the case (at least in my case). I've not yet had the stimulator removed but once this COVID mess is a bit more behind us, I sure plan to get it out. It is now in a state of "hyper-discharge" (Medtronic term) and I'm concerned the battery could leak.
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07-28-2020, 12:57 PM | #7 | ||
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Good report, way to go with this work. I know the PRP/Stem Cells and Prolo do work, it's just finding the doc to do them and the $$$ and belief in this work.
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07-28-2020, 08:32 PM | #8 | |||
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Grand Magnate
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This article may help members to decide whether or not there is any convincing evidence that prolotherapy is of any use.
Prolotherapy - Wikipedia Note that prolotherapy does not involve stem cells. There are many kinds of stem cells. For example, some specific stem cells are responsible for making the various kinds of blood cells. In my view a "one size fits all" approach is not appropriate; the specific stem cells which make blood cells will be of no use in treating a disorder which does not involve blood cells.
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07-28-2020, 10:55 PM | #9 | ||
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Kiwi: Prolotherapy is like a umbrella over the 3 types and has been in existence for eons...Prolo injections are primarily dextrose and often lidocaine added, some docs add some vitamin, depending on the doctor offer the Prolo.
Over the years came PRP, then in more recent years Stem Cells...with each advancement, more costs. |
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