First of all- Happy Living Donor Day! It’s a very small pool of people who can say they are a living donor of some sort of organ! And yes, stem cells for a transplant are considered an organ! Anyway, thanks for sharing your experience! Bummer about the headache but super glad you got it squared away. Congrats on your successful donation! Sending positive vibes to you and your patient for their engraftment!!
Gonna preface this by stating I'm no where near an "elite athlete" or have infinite money to throw at my pain.
I do have DECENT health insurance (by US standards) and I've been in pain since 2022, so over time, I'm sure I've thrown a decent chunk of money at this problem (I would rather not think about how much exactly bc it's depressing.)
I've tried just about everything you can possibly think of.
I did contact a clinic in town here about PRP/stem cells initially for my hip labral tear which I believe contributed to my eventual back injury that occurred the same year.
This clinic (Bluetail) is specifically working with the FDA to try to get insurance to start covering these procedures.
And even THEY told me they would not advise getting either stem cell or PRP for my back. They indicated it might work better for my hip.
Fast forward about a year after my injury, I finally saw a very well respected hip preservationist surgeon at Washington University in St. Louis about it and she basically told me not to bother with any stem cell procedures. She indicated that the "type of stem cells needed to make an actual difference would be illegal to administer in the US." I'm paraphrasing here a bit bc it's been ages since I've seen her but that's the gist.
Since insurance doesn't cover it, I figured it would be a very expensive gamble.
Instead of this procedure, I opted for Intracept procedure bc I was able to get my insurance company to approve it. Without insurance, it costs $45,000, roughly.
It's been since January 21, 2026 that I had it. I just traveled over 4 hours on a plane last week and my back did really well, so maybe the surgery is helping me.
Also a coworker of mine has had both PRP and stem cells on his bad knee and neither of them helped so he basically just lit like $14k on fire. Ugh. I've heard some ppl say they work. I'm starting to wonder if it's just a placebo effect though.
I had a post surgical MRI that confirmed my BVNs were fully ablated post op from Intracept so at least I know my surgeon was effective at killing those nerves that live inside my L5-S1 bones that are responsible for carrying discogenic pain signals to the brain.
Anyway I just wanted to share my perspective as someone dealing with this crap since 2022. I also worked with some of the very best PTs including Aaron Horschig (Squat University) and a guy at the Central Institute for Human Performance (McGill certified clinic.) have also communicated with Stuart McGill directly over email. I thought about saving up some money to go see him in person for an eval but I'm waiting to see if Intracept helps first.
My diagnosis is DDD at L5-S1, multi level lumbar facet arthropathy, disc herniation and annular tear of L5-S1, right moderate foraminal stenosis, left mild foraminal stenosis, modic type I changes, slight retrolisthesis, and a few disc bulges at other levels that are more minor. Plus L hip tear, hip dysplasia, impingement, B/L acetabular retroversion, and persistent bone marrow edema of the right SI joint which may be nr-AxSpA.
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u/CapitalElk1169
I was just approved for PRP/Stem cells here in Canada
Will only cost me about $1000 CAD
I looked into it in USA first and was looking at $15k USD until I found out it was available in Canada as well...
Happening in a few weeks, I'll post about it after it happens and we'll see what the results are like....
A tip that's too late for you but maybe someone else will see it. I went through the same thing, and filgastrim was part of my original treatment. I still need a shot on occasioin. While the evidence can be considered anecdotal, my oncologist and several nurses recommended taking Claritin for bone pain. It worked like a charm for me, and for my wife who took some medications for osteoporosis and was saddled with horrible bone pain. I've seen similar stories here from other people. It's a shame no one told you ahead of time.
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u/Lazy-District-7076
I learned my lesson when I only took Claritin for a few days. I made it a daily regimen and never had bone pain again.
Interesting perspective from a non-MM patient going through harvesting. As an MM patient my guy did this for his ASCT and then when the stem cells were returned he had more injections, maybe another 4. Just remember they were in our hotel refrigerator until they were needed.
It does sound like your experience with side effects was more unpleasant than my guy’s. But then he was already fatigued as he prepared to go through it. I think he experienced some bone pain but don’t recall nausea.
Wanted to especially wish your dad a smooth transplant and remission. How wonderful you were able to provide your stem cells. When does your dad begin his transplant?
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u/Jagang187
God I remember my Filgrastim, I am lucky enough to be young and caught the MM before my bones turned to dust so my main cancer symptoms were just headaches and tiredness. Those injections wrecked me though. For 2 days, it felt like I had shards of broken glass in every joint and I could even feel the tiny bones in my ears. 2/10 experience but the transplant was worth the pain and subsequent recovery!
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u/Sorcia_Lawson
The high dose of Filgrastim sucked for me. If no one had warned me that it can make your sternum hurt, I really would've thought I was having a heart attack. And, severe growing pain type pain. I needed the extra painkillers that they gave me.
It also crosses the blood-brain barrier. At the high dose for collection, it gave me night terrors and anxiety.
I've also had both it and Neulasta - the long-acting form at regular dosing levels (to increase my white cell count) and had zero of the same side effects.
I’m a 48 yr old mom who is not sporty and I have recovered completely, I’m about 18 months post op. I do jog with my dog a few days a week and hike occasionally, in addition to working a physical job, and have had no issues. I had a medial posterior root repair with the tibial anchor and microfracture with stem cells. I can tell you that the tibial anchor point hurt worse than the knee itself! I was in very significant pain from the time the block wore off through the first week or so, and then it gradually eased.
My biggest PT tip is to do whatever home exercises they give you every single day. Your thigh and calf muscles will shrink faster than you can believe while non weight bearing, so do anything they advise to keep your muscles awake and going. I did PT for 4 months after my surgery to build my strength and ROM back.
There was recently a great discovery.
Inhibition of the 15-PGDH increases PGE2 which causes cartilage to regenerate as hialine cartilage.
In mouse of course.
Im a researcher and im trying to get to do an experiment on dogs (pet dogs with severe arthrosis), as a mid step.
The other day speaking with a traumatologist, she was really interested, so maybe in a couple years we could try this on humans…
Do what you need, but if i could, id wait for 2 or 3 years.
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u/Ryan_MedConsultant
Totally understand the hesitation. From what I’ve heard after asking doctors, some regenerative knee treatments have been used for years in China and aren’t necessarily considered “new” there. That said, outcomes still seem to depend a lot on the exact diagnosis, imaging findings, the doctor’s experience, and whether the case is actually a good fit.
If it were me, I’d want a very clear explanation of what problem is being treated, what the realistic outcome is, and at what point surgery becomes the better option.
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u/Bodigaron1981
If you have access to an orthopedic surgeon specialized on stem cell therapy I would ask him directly with your medical reports and imaging. If you don’t have one I can get the feedback from one of them for you
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u/ThanosFisherman
Bro what kind of surgery? What's the diagnosis?
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u/alopecia-no-more
I’d definitely try stem cells! You’re young and they work better when you’re younger. It worked so well for my daughter (alopecia)and me (autoimmune disease) that we started a stem cell clinic in Central Florida! I’m a believer!
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u/Extension_Move1094
I would give stem cells a try for sure. My knees have improved so much after 25 million injected into each knee. Also, research walking backward. For me? I would do anything to avoid knee replacement surgery seeing all My friends with mixed results. With arthritis, you can’t wait until it’s the worst stage and expect SCs to help however. Better to do it sooner. I would recommend talking to Dr. Ivan at the Carabella Clinic in Tijuana and go from there.
Same exact situation, down to the knee and injury placement too! My mom suggested it though, I did acupuncture a few times and I did recall it feeling more agitated after. Maybe it’s a placebo but when I drank bone broth and herbal chicken soup daily it did feel better. Lol there’s a Chinese saying that you eat part you’re missing (e.g. bone broth after fracture)
Have you discussed whether this could be autoimmune, i.e. rheumatoid arthritis?
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u/Efficient-Salad3594
Four years of this since you were 15, two scopes, years of physio, multiple injections and still no clear answer. I can only imagine how exhausting and demoralising that journey has been and I want you to know that your frustration is completely valid. This is genuinely one of the more complex anterior knee presentations I have come across on here.
What strikes me most about your history is actually the lidocaine response. The fact that intra articular lidocaine gave you significant temporary relief tells us something really important. It suggests the pain is coming from inside the joint environment rather than from a pure tendon or soft tissue source outside it. That is actually a useful clue that not enough people are paying attention to.
Given that both scopes showed hypertrophic fat pads and large medial plicas with otherwise normal looking cartilage, and given that excision helped the grinding temporarily but not the deeper pressure, I think there are two things worth exploring that may not have been fully considered yet.
The first is synovial sensitisation. After years of chronic inflammation and repeated procedures the synovial lining of your knee can become hypersensitive in a way that standard imaging will never show. The joint looks normal on paper but the pain processing has essentially been turned up too high. This is a real and recognised condition and it responds to very different treatment than mechanical problems.
The second thing worth exploring is whether there is any subtle patellar maltracking that only shows up dynamically during movement rather than on a static MRI. Standard MRI alignment can look perfectly normal but under load and in motion the kneecap can still be behaving abnormally. A dynamic patellar tracking assessment or a weightbearing CT scan can sometimes reveal things a regular MRI completely misses.
Regarding PRP and stem cells, I would hold off until you have a clearer diagnosis because those treatments are very target specific and without knowing exactly what you are treating the results will continue to be variable.
Please seek out a sports medicine physician or orthopedic surgeon who specifically specialises in patellofemoral disorders rather than a general knee surgeon. This is a niche enough presentation that it genuinely needs that level of subspecialty experience. You are 19 with your whole life ahead of you and this is not the end of the road, it just needs the right person looking at it. Do not give up. 💙
So in the 8 months since the stem cell treatment, you repeatedly had flare ups of your knee and think that everything was fine? Did you go to a physical therapist ? Being young will not mean that a bucket handle tear will repair itself. You do need surgery and also should start prehab now. This might give you more time before you need the operation but you do need it.
I work with cell laboratories in Thailand and I have to say the quality here is very good when you have the right clinic. Two things that matter even more: get it done by and orthopedic surgeon not just a normal generalist, and find a place that plan for you a whole package, not just a knee injection. This is the way you can tell when a clinic cares more about outcomes than money
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u/revolution_farmer
I went for stemcells to Saigon only one hour from bbk..and a lot less $$$.I'm extremely happy with my results. The doc.is italian and they have European standards...Euro stemcells Saigon
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u/Repulsive_Hurry_3984
I went to Swiss Labs, they were pretty good
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u/Severe_Place_119
I did stem cells for my knee in Medeillin Colombia at a clinic called You regenerative clinic as it was closer and cheaper for me from UK to get there. The prices were very good also.
The Doctors and clinic was very professional. They gave me free hyperbaric chamber sessions. Was increíble experience.
The results have been nothing but spectacular.
I can walk and play golf without pain.
They are specialists in many areas for stem cells in Colombia.