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Anyone had MSC (aka Regenexx) done to knee and ski'd to tell about it?

post #1 of 95
Thread Starter 

Sorry about being a new poster to this board.

A bit about me...

I'm 55 and have osteo-arthritis on my right knee. It's getting tough, but I can still ski w/ pain. I can turn right, but not left. Considered myself at one time a good skier when I did collegiate racing and moguls. Come to think of it, I haven't missed a season since I've been 10 years old. But, I've had 3 knee surgeries, 1 torn MCL stapled and 2 menisectomies. Alas, I can't keep up w/ my daughter anymore as the pain is getting unmanageable, and it's time to do something. I have read here good skiing results from folks who've had total knees TKR's. I am at the crossroads and was looking at various alternatives. I, like many, am leery of a TKR and read a long thread about mesenchymal stem cell (MSC) injections. Regenexx is the trade name out of some bloke out of Colorado, but now there are others w/ similar or improved processes. Read it on kneeguru.com if you're interested:

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=40048.240

Blah, blah, blah...

Anyway, it sounds like it is a partial solution, but also long lasting, unlike SynVisc or steroids. 

Has anyone here have any experience w/ this or know of anyone in the context of skiing? I'm not a shill for anyone as I'd just as soon ski w/ pain than do something stupid. Guess I'm just chicken for surgery again.

Thx in advance.

post #2 of 95

I'm located in Colorado and came across the Regenexx website this last weekend while searching for information on the SynVisc Injections.  I've had two knee surgeries...

ACLR in March of 08 from a ski accident

Microfracture in August of 09 from a Roller Derby accident

 

I contacted Regenexx on Monday, spoke with Jane (very helpful and friendly) and now have an appt with Dr. Hanson next week to see if I'm a good candidate for the procedure.  I've been searching online, non-stop, the last couple days and have not found any negative reviews, other than political opinions and arguments on FDA approval.  I'm really hoping I'm a good candidate!  I'll post back what I find out.

 

post #3 of 95

Great timing as I'm going in to see my ortho next week.  I would love to know the results as well as I'm in a similar situation.  I haven't had an ACL since 1979.  I quit skiing for about 25 years, and got back in 6 season ago.  I was amazed.  Just like riding a bike, though I actually ski better now than I did when I was in college.  Anyway, . . .

 

I'm not sure how the procedure would help anyone with osteo-arthritis as this results (at least with me) in a great deal of bone deformation with the attendant loss of cartilage for excess movement in the joint.

 

I took a fall on some stairs before this season and been working through this (I'm pretty sure I tore more cartilage and maybe strained may PCL from the way it feels).  I'm not in constant pain (even went to the gym last night), and some time away from needing a TNR.  But I really want to reduce my irritation level and increase flexibility if possible.

post #4 of 95
Thread Starter 
Pls post any info or impressions. I understand they regenexx have 500+ user their belt, but im still thinking snake oil because the same testimonials get cited. Good luck with the process and pls post.
post #5 of 95
Thread Starter 
I also gathered from the threads it costs around $8000. One guy may have persuaded his insurer to cover it as well.
post #6 of 95
Thread Starter 

Maybe I'm AM trying to pump the subject, but for selfish reasons only wink.gif. Here is a TED vid article about a similar subject.

Stone seems to be another one where not much peer reviewed data exists so take it accordingly. Still fascinating...

 

http://www.ted.com/talks/kevin_stone_the_bio_future_of_joint_replacement.html

post #7 of 95
I have a friend who did regenexx about 1.5 years ago, and it worked beautifully. She is going for a TKR on the other knee this week, though, because she is not sure about the slightly different procedure they are using now due to FDA stuff. also, because insurance won't cover regenexx; I think it cost her about $10K.
post #8 of 95

From the email I received from Regenexx...

"One Regenexx cycle costs between $1200 and  $6000 per site depending on the treatment protocol recommended by our doctor. This is not covered by insurance. If it is determined and you consent, there may be other treatments for your condition that will help in your success at an additional charge.  For best results, we recommend that most patients repeat the cycle 2-4 times, returning to our clinic every few months between cycles."

 

post #9 of 95
Thread Starter 

Between $2,400 to $24,000 is a pretty wild swing. That's up to 20 pairs of the new DPS ski's I've got my eyes on!

Guessing this must be a bell curve w/ the center around $10K hopefully.

 

I wonder if there is a bell curve, efficacy vs. $$$. Everyone is different of course, and that wouldn't be a meaningful metric unless there was

a way to normalize it. But if one were given the choice of "best for $24K" vs. "good enough for $10K", that wouldn't be much

of a choice, for me at least.

 

I looked at the application and I need to go get an MRI of my knee to send them so they can review whether I am a good candidate.

Thx Rockett, keep it coming...

 

post #10 of 95

I didn't read the whole thread, but I would be skeptical.   I also have OA and my ortho told me I was not a good candidate for PRP, which seems similar.  I've had two series of Orthovisc injections and it helps, but I know eventually, I will have to go with TKR.

 

I know quite a few people in Aspen that have had TKR and skied with a patroller yesterday that just had a double. Almost all of them say they wish they had done it sooner?  I'm holding out as long as possible, because I think they get better at the procedure every year. 

 

post #11 of 95

Sorry it has taken me so long to give an update.  I met with Dr. Hanson at the Regenexx clinic approx. 3 weeks ago to review my MRI.  Based off my MRI and the Ultrasound that was used, it looks like my MCL is degenerative along with a little cartilage damage behind my knee cap. 

 

I had my first set of Regenexx SCP injections yesterday.  Regenexx SCP differs from the Regenexx C procedure by only using a blood draw rather than the bone marrow aspirate and also cost...my first set of injections were $999 total, including the blood draw and the injections.  I will likely need another 1-2 injections 4-6 weeks apart.  The descriptions of the different procedures can be found in much more detail here...

http://www.regenexx.com/regenexx-procedures-family/

 

The blood draw was just your simple blood draw.  The Regenexx SCP injection on the other hand was a bit more intense.  The platelets were injected directly into my MCL along with a couple tendons.  Quite honestly, it was extemely painful, and for future injections I will be asking for a pain medication to take prior to the appointment (otherwise, I don't know that I will be able to convince myself to show up for the injection appointment).  I was able to walk out of the office about 15 minutes after the injection; however, still in a bit of pain.  I took it easy yesterday resting all day and today am moving around and feeling much better.  My knee is definitely sore, but nothing compared to a knee surgery.    I am relieved to be able to get around as I was on crutches for 7 weeks after microfracture which was aweful!  In a few more days I will be able to ride my stationary bike which will be awesome!

 

As for whether or not the procedure has actually worked...I won't know for 4-8 weeks and will post an update then.

 

Rockett.

 

post #12 of 95
Thread Starter 

Good luck w/ that. Please keep posting. It looks like they no longer do the MSC culturing. I think that's where they

got into it w/ the FDA. Maybe I missed it in blurbs though. How is it now that it's been a couple of days?

post #13 of 95

I'm now 2 weeks post Regenexx SCP injections and don't have much to report, other than I basically feel the same as I did prior to the injections.  Walking and riding my bike (spinning with low resistance) is not painful at all.  I have an appointment with Dr. Hanson in two weeks to check progress and most likely schedult the 2nd set of injections.  He did say that I could take pain medication prior to the injection so I'm feel more at ease with the procedure going into the 2nd round.  I'll ask him about the Regenexx C injections being available.  I was unaware of them being off the market...

post #14 of 95

I'm in the midst of trying this out.  I had my second Regenexx SD about a month ago.  I had the first one in mid-Feb and skied the late season (early April to early June) after that. 

 

I would say that :

 - the first round of the procedure really brought my knee inflammation down

 - it was hard to identify other benefits with any confidence a few months out from the first treatment

 - certainly nothing got worse, which is frankly not true for any of the conventional orthopedic procedures I've had

 

Also

 - the Regenexx guys are the least snake-oily of the stem-cell people I have found

 - the evidence that the procedure is safe is quite good

 - you are still talking a pretty experimental procedure; essentially all of the published clinical stuff is from the Regenexx guys, and while they do have some nice published results (their website links to a published case study with before and after MRIs which show clear cartilage growth, which I think no one else has ever shown for pretty much anything), it's pretty limited

 - also, a lot of the results are from the "Regenexx-C" version where they multiplied the stem cells in culture before re-injecting - a procedure which our beloved "here to help" government shut down, not on the basis of any evidence of any problems, but on the basis that the procedure hadn't gone thru the full "drug certification" protocols, after they had randomly decided stem cells multiplied outside your body are "drugs", but stem cells extracted from your body and re-injected without being multiplied are not

 

In the end I think you are looking at an expensive procedure with almost no downside and unproven and poorly known but possibly huge upside.  I think it's mostly about how much money you have and how much you value your knees to be honest.

 

BTW:

 - I heard a rumor you might be able to get the original cultured version again soon, either because they think the FDA will realize that they are going to lose in court and drop the "stem cells are a drug claim" or because they will be partnering with someone outside the US to do the re-injection of the cultured stem cells ala Bartolo Colon

 - PRP might be comparable to stem cells for things like tendon healing, but for osteoarthritis there is way more evidence that stem cells might help than there is evidence that PRP might

 - if you look under the hood almost nothing in orthopedics from ACL replacement to meniscectomy to microfracture really has "peer reviewed science" published to support it, so this isn't necessarily that terrible

 

My bottom line is:

 - I decided to do it, after 1 round of treatment I opted to pay for a second and if the "C" version becomes available again then I will pay for a third round.

 

YMMV

post #15 of 95
Thread Starter 

I subscribe to this thread, so it's nice to get your update. Is the procedure you had essentially a PRP?

Would you feel your knee is more ski-able when it stabilizes a bit? I've had Cortisone shots and they do help a lot.

It doesn't last and it can still hurt while skiing, but the pain is less. Of course, the knee always hurts 24/7, but I'm good

as long as it's tolerable. It affects my skiing where I can't turn left comfotably. And icy conditions are just miserable.

I preach to the choir if your reading this, but I'm not going to do a total knee w/ stem cell research progressing as it is.

 

If the C procedure comes back, I would opt for it. Other than a bag of money, there isn't much downside as you say.

I had heard about adipose (fat) stem cells coming along. Regenexx has a myth busting section on this and lack of studies and hyperbole.

As for myself, I am going to head up to the Stone clinic in SF to get a feel for their procedures since I live in the general area.

Keep the posts coming

post #16 of 95

anyone on this post have an update? I am considering the Stone Clinic or the Regenex.  Any updates??  Thanks!

post #17 of 95

Hey guys - just wanted to see if anyone could share an update about their stem cell procedure.  I'm considering getting injections in my shoulder, so I'm wondering if this would be helpful.  Thanks!

post #18 of 95

Hope to hear some more from Rocket about his progress. 

post #19 of 95

Thought I'd update:

 

 - you can get the C procedure again, but it's thru their Cayman Islands clinic

 - I'm really happy with how my knee is holding up this ski season; there is a dramatic reduction in inflammation from what I was experiencing pre-Regenexx and I have no pain while skiing or skinning

 - I'd continue to say that if you have the money, I would do Regenexx before anything else for cartilage (maybe do PRP for tendon, etc) because I believe there is a total lack of donwside (other than money)

 - my improvement might not be from Regenexx but the orthopedic surgeons certainly told me to expect stability or slow decline, not improvement, so for now I am giving them the credit

 

Steve

post #20 of 95

Steve,

 

What shape was you knee in prior to the procedure?  I'm thinking that mine, after more than 30 years without an ACL and substantial and visible bone deformation, probably isn't a candidate as I can't bend my knee much beyond 75-degree without pressure, pain and, for lack of a better term, blockage.  I just skied three days at Bachelor last month logging 21K on the last day.  But I paid for it needing a week off and periodic icing.  Bumps kill me and heavy chop can tweak the knee painfully. I can't really ride my bike right now.

 

What do you think, doctor? smile.gif

post #21 of 95

Any other opinions on Stem Cell procedures?

post #22 of 95

Telemarker Steve,What was the final cost of each series ?

post #23 of 95

I don't know how much the state of the knee would affect the amount of benefit you might expect.  If you are starting from a worse place, then I guess you'd expect to wind up in a worse place but it might be quite a bit better than before.

 

My totally unsubstantiated impression is that more badly damaged knees benefit a lot from these sorts of procedures but the benefits are shorter lived than those experienced by less damaged knees.  Most of the Regenexx patients are actually folks who are being told they need TKR, which sounds like about where you might be?  So they do have lots of experience with that situation, but my knee was not too bad yet - it was just getting worse every time I had a check-up - so my experience might not be too relevant.

 

In terms of cost, I think I wound up around 5-6k per procedure for SD (same day) + AD (fat stem cells) + fat graft.  I don' t recall exactly.  If I did it again I'd almost certainly go cultured or C procedure.

 

In terms of other stem cell procedures, I really know nothing about them.  When I was looking I couldn't really find anything else besides Regenexx in the US, except clinical trials that weren't available to me.  I'm sure there's other good stuff out there and other bad stuff out there but I don't know anything about it.

post #24 of 95

just stumbled across this and had done research on these "characters".. not one published study (and don't post the one citing that there were no tumors as a result of the treatment), no double blinds, no "anything" published and reviewed by peers; how many years in business and not one professional study...... interesting how many 1-3 time posters up there. I smell something rotten here. I also saw some similar posting activity on another forum with postings like above.   If this is so great why aren't there other companies doing this?

post #25 of 95
Quote:
Originally Posted by Finndog View Post

just stumbled across this and had done research on these "characters".. not one published study (and don't post the one citing that there were no tumors as a result of the treatment), no double blinds, no "anything" published and reviewed by peers; how many years in business and not one professional study...... interesting how many 1-3 time posters up there. I smell something rotten here. I also saw some similar posting activity on another forum with postings like above.   If this is so great why aren't there other companies doing this?

Nothing rotten ... just no incentive to spend the money to do the studies. Maybe you could fund one. ;-) I have known several people who had this done, all aging tennis players like me from CO (where the clinic is), and they were all thrilled with it. 

post #26 of 95

I have an instructor friend (ski instructor mentor really) who had TKR done for both knees last fall. He taught full time all last winter and seems happy with it. He also said that he wished he had it done earlier. I think he is going to be really P.O.ed though if it turns out there exists a better treatment.

post #27 of 95

I think sometimes people compare what's done to a scientific ideal (large randomized, double blind, controlled studies), rather to realities in medicine.  No single practice can afford to do studies like that - especially when the government changes the rules and disallows your from doing the things that you had been collecting data on.  So it basically never gets done with surgical techniques and other things that don't scale - double blind trials are pretty exclusively for pharmaceutical contexts where the cost of the trial is spread over some large potential future customer group. 

 

Then once a technique is sufficiently accepted, you can't do studies anymore because withholding treatment for the control group is immoral.  I don't think double blind studies have ever been done with things are common as microfracture because it went from a "let's try this" treatment to a "we can't assign a group with no option of this highly beneficial treatment" without a single double blind study.  The studies that have been done for meniscectomies and even ACL replacement vs bracing don't actually show statistically significant benefit for those procedures and, at least in the latter case, the interaction between post injury activity level and which treatment is pursued makes the study uncontrolled (and nowhere near double blind since you can sort of tell if you are wearing a brace for years).   I sure as hell wanted my ACL replaced when I tore it.  Now did I want hamstring or patellar tendon graft? Allo or auto?  What kind of fixation device?  Which rehab protocol?  Basically none of those questions have been settle by controlled studies you know.

 

This isn't really a black and white "we know this works" vs "we have no reason to believe this works" area of medicine.  We have lots of reasons to think this works and no reason to believe that we know it does.  So there you are.

 

The Regenexx guys are salespeople sometimes, but they are nowhere near snake oil salesman.  I can understand why insurance doesn't cover it but I definitely think it's a valid practice of medicine to try to improve cartilage health.  In my case, I have cartilage fissures in inoperable locations, so my alternative is "do nothing" and my knees are worth a lot to me.  I definitely had improvement in the aftermath of the procedure - quantifiable decrease in inflammation, for example.  Was it from time or from the procedure?  Who knows.  I do know that the year before the procedure my knee got worse and the year after it got better, so simple "passage of time" post surgery or injury isn't a natural explanation for the improvement.  That's my N=1 result

post #28 of 95

I was interested to read not long ago that researchers working with rats or mice have successfully injected stem cells that had been magnetized in some way and then were able to use magnets to guide the cells into the appropriate locations in the joints. They were actually able to grow new cartilage in these locations with this technique apparently. It seems that they accepted the usefulness of the stem cells (a particular type of stem cell) in this kind of treatment. That was implied anyway. The experiments seemed to be directed toward improving the effectiveness of the technique by being able to better move the cells in to location without the attending damage of a needle being inserted into the joint. I'm sorry that I don't have a link to this.                   

post #29 of 95

which stems cells? Were they the mouses own stem cells or another mouses? What was the protocol for the harvesting? How were they separated? How were they prepared?  Stem cells vary widely as does the methodology of harvesting, separating, culturing and placing back into the body.  This is a very promising treatment that one day will hopefully be developed into proven protocols for treatment. It has a long way to go however until there is scientific evidence and proof on the best way to use them, simply going by hunches and what seems to work is not the best course of medicine nor is it responsible.  Cavaet emptor in the mean time.  So yes, I truly beleive many could see improvement but maybe a cortisone shot or other injections could have been just as effective and cost a fraction of  what is charged at Regenexx and covered by insurance.

 

Why does it seem to work?  There is a lot of evidence that says some people will experience healing events when any kind of matter is injected into to their joints. Its known as prolotherapy here's another done in Canada that uses sugar as a main ingredient.   and a great article on Livestrong site You can also use Cortisone Like i just had done. It worked very well. Once the pain was gone, I was able to train my ankle get it stronger which led to much improvement. It didn't cure it but is 80% better.

 

Here's a good article from Outside magazine in which there were studies doen which have not supported the PRP approach but rather suggest the above is true.


Edited by Finndog - 6/4/12 at 7:58am
post #30 of 95
Quote:

Originally Posted by Finndog View Post

 

  So yes, I truly beleive many could see improvement but maybe a cortisone shot or other injections could have been just as effective and cost a fraction of  what is charged at Regenexx and covered by insurance.

 

 

I'm guessing most people who have gone through Regenexx have tried cortisone as well as many many other treatments. It certainly isn't to be entered into lightly, as it is expensive, time-consuming, and painful. (No anesthesia can be used, b/c it isn't good for the stem cells.) It's a last resort before TKR, for the people I know, nothing even similar to a cortisone shot. If you are that far gone, you've done all those other things, pt, prolo, cortisone, etc. To get profound relief is more than a placebo. 

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