Poster: A snowHead
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Stem cell therapy- I am writing this as a few people on the forum have asked me to share my experience, so here goes. I have suffered from knee issues since my thirties (I am 62), but the past few years have seen a significant worsening in both the cartilage loss and the amount of oedema and inflammation as a result of the bone on bone patella/femoral wear. To add to the problem, I sprained my MCL two tears ago resulting in a 1cm hole in the ligament near where it fixes on to the tibia.
The knees have generally worsened to the point that they were permanently swollen and going downhillI is a real problem. I have had numerous cortisone injections over the past 10 years or so which worked well initially but had reducing effectiveness with each one. I also tried Ostinel injections but I found no difference at all with them. I was told five years ago by a surgeon that I probably had “about three years left on the knees before I would need a TKN”. I skied on Ibuprofen and paracetamol, sometimes diclofenac.
By the end of last season I was in a bad way after about 50 days on skis- struggling to go downstairs and in pain at night.
I went to see my usual muscular skeletal doctor to see what he could suggest.
As it happened, he had cartilage issues himself and researched stem cell therapy extensively, opting to have treatment earlier that year. He suggested I look into it. He went with a particular company who, he felt, had the most extensive information available. They have only one practitioner in Europe who has a clinic in Brussels.
I did my own research and established that:
The process is considered experimental and there is limited and sometimes conflicting evidence of success;
Each patient is different and there is no guarantee that any given individual will have sufficient stem cells to treat the affected area, or even if they do, that the outcome will be successful;
The process demands a high level of commitment from the patient, including going on a very strict Paleo diet for 4 weeks before and 12 weeks after the treatment, taking a number of supplements ( Chrondatin, turmeric, various vitamins, etc.) for at least 12 weeks, and undertaking a 16 week physio rehab programme after the procedure.
The first stage was a Skype consultation with the doctor in Brussels which lasted an hour. Before setting this up, I had to send them recent MRI scans of both knees. During the consultation, the doctor talked through the actual process, whether he thought I was a good candidate and what sort of chance of success I may have. He gave me 50%.
Even with these provisos, I decided to risk it and see what happened. I started the strict diet, and booked an appointment for four weeks from the initial consultation. The process is a combination of PRP injections, the actual stem cell procedure, and then more PRP, spread over a week. The stem cell procedure involves harvesting bone marrow from the pelvis, separating out the stem cells, and injecting them into the bone. This part all happens on the middle day of the week. I was effectively house bound for three days, non weight bearing on crutches, until the 7th day when I had the final PRP injections and I left to come home the following day.
I was initially in an unloader brace on my knee with the MCL issue and a soft brace on the other for 6 weeks. I worked with my physio on the rehab process, slowly building up to full activity over 16 weeks. This involved swimming 3x week, weight training in the gym 2x week and exercises at home every day.
I had the treatment in June and finished the rehab in October.
By then, I had virtually no swelling in either knee. I have lost 20lbs which was an unexpected outcome, but this has been a result of keeping to such a strict diet and as such had been generally therapeutic for the knees.
I have skied 6 weeks so far this season, one week, a break over Christmas, then four, a two week break, and I am one week into my final four week block. I have kept to an overall ratio of one days rest for each two days of skiing. I have not taken any painkillers or anti-inflammatories since last winter. I am just starting to feel some discomfort in my left knee, and I will start doing shorter days and add in rest days if it worsens.
I remain cautiously optimistic but am under no illusion that this is a miracle cure-I am pleased I went ahead with it but I know there are no guarantees as to how long it will last. I don’t even know if the improvement is due to the PRP injections, the stem cell treatment, the weight loss, the supplements, or a combination of all of the above.
I would never recommend either way to people, I can only relate my experience. Everyone is different and it’s uncertain territory for sure. The only thing you can do is research the process and all of the providers in order to make an informed decision. The main thing to bear in mind is that it is unproven and classed as experimental.
If anyone wants to talk about it in more detail feel free to PM me.
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Obviously A snowHead isn't a real person
Obviously A snowHead isn't a real person
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@lynnecha, thanks for that. Great to hear some real life experience. I'm a living PRP advocate having had a positive experience on my knee. I've been viewing stem cell as the "next level" treatment and, at least in theory, a repair rather than a natural painkiller. Had no idea it was so involved - a very holistic treatment - but that may just be down to this guy in Brussels wanting a belt and braces approach.
I got the impression from the American specialist who treated me for PRP (who is licenced for stem cell in the US but not where I was treated so I just had PRP with him) that stem cell was a very similar day patient treatment to PRP. From a personal perspective, I would find the very intensive regimen that you undertook almost impossible with my day job so it would have to wait until I'm retired.
One thing I will say (from a personal PRP perspective) is that it continues to improve with time so even if you have some issues this season, you will probably find next season better still. Please keep us updated on your progress and good luck with it.
Sorry, one more thing having just re-read your post. I found that resting my knee when skiing didn't help. I skied without anti-inflammatories for 23 days straight the year after I was treated. After about 8 days it started to be quite sore but with very minimal swelling. It would hurt for the first 3-4 turns of every run and then the adrenaline would mask the pain. However, some time between the second and third week it stopped hurting and it's never really come back. I very much feel that the exercise made it stronger rather than weaker, as if the knee had to be re-programmed to what it was capable of after years of protecting it. Of course, that's a bit of a gamble and a stubborn approach so I can't advocate it for everyone but it may reassure you that a little pain is not necessarily a real issue and can be overcome with persistence.
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Well, the person's real but it's just a made up name, see?
Well, the person's real but it's just a made up name, see?
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I have had PRP procedures on my right elbow as part of a UK wide NHS trial. The specialist required 30 Guinea pigs for a paper he had to send to the Lancet medical journal. To cut a long story short, they remove some of your blood, clean the crap out of it via centrifuge and inject it straight onto the inflamed area. Out of the 30, it didn't work for 3, had a total pain removal on 10, and the rest had various degrees of success. I was one of the 10 so happy days.
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@Raceplate, yes, the whole experience pretty much dominated my life for several months- my physio said they could never do work like this with NHS patients as the time commitment required would just be unrealistic. I sort of enjoyed the focus, and it’s great being 55kg! All the better for general health I think.
Interested to hear your comments re: rest. I absolutely feel that the joints have been reprogrammed and I can see the argument that exercise makes it stronger. I will continue to monitor it with that perspective.
Will Report back as to how it feels in April!
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Anyway, snowHeads is much more fun if you do.
Anyway, snowHeads is much more fun if you do.
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For me it took several months to be cured. I would 'tweek' it lifting and feel some pain then question whether the procedure had worked. But, each time I jarred it subsequently, the pain would lessen until it disappeared.
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@Paul Chelski, how long ago did you have the treatment?
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lynnecha wrote: |
@Paul Chelski, how long ago did you have the treatment? |
I had prior cortisone injections which worked for a couple of months but the pain returned with a vengeance. I then had two PRP procedures, a few months apart, and I was 'cured' within two months of the second.
Cortisone coats the outside of the inflammation and tries to penetrate the tendons to commence the healing process whereas PRP is injected directly into the tendon to heal from within!!
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You'll get to see more forums and be part of the best ski club on the net.
You'll get to see more forums and be part of the best ski club on the net.
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@lynnecha, That is a really useful tale, thank you for sharing. If you can ski with a 20lb pack on with the same improvement that would be amazing. Probably better not though eh
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@motdoc, I think I will give that idea a miss!
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snowHeads are a friendly bunch.
snowHeads are a friendly bunch.
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managed an hour of telemark skiing today after my last set of injections and last year it would have been no way Jose...
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And love to help out and answer questions and of course, read each other's snow reports.
And love to help out and answer questions and of course, read each other's snow reports.
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PRP a good option. Stem cells much less convincing at the moment.
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Jonathan Bell wrote: |
PRP a good option. Stem cells much less convincing at the moment. |
How does someone get recommended for PRP?
Is it covered by insurance companies or is it something someone has to cough up on their own.
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You know it makes sense.
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Mine was part of an NHS trial which I believe was deemed too expensive to adopt. I'm guessing you would have to go private!
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Otherwise you'll just go on seeing the one name:
Otherwise you'll just go on seeing the one name:
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Poster: A snowHead
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@martinperry,
Drugs
Lose weight
Cycle to build up muscle and retain mobility.
Regular walking within pain threshold.
Must be tough as a dentist on your feet all day.
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Obviously A snowHead isn't a real person
Obviously A snowHead isn't a real person
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Frosty the Snowman wrote: |
@martinperry,
Drugs
Lose weight
Cycle to build up muscle and retain mobility.
Regular walking within pain threshold.
Must be tough as a dentist on your feet all day. |
Thanks!
Already cycling big time since 2012 - reckon thats what kept things stable thus far. However, knee is staring to give occasional nasty stabbing pains when pushed on the bike - that was what finally forced me to acknowledge a problem! Also lost 30Kg on the way (130 to 100 - im 6'4)
9kg has crept back on, which is in the process of coming off.
Reckon i will be resurrecting the Mojos which I used whilst huge!
Also, any excuse to avoid bumps when the kids insist will be welcome!
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Well, the person's real but it's just a made up name, see?
Well, the person's real but it's just a made up name, see?
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@martinperry, What was the NHS Dr's diagnosis? I'm interested as I have a lack of cartilage under my knee caps and going down stairs is becoming an issue (I'm 53)
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gixxerniknik wrote: |
@martinperry, What was the NHS Dr's diagnosis? I'm interested as I have a lack of cartilage under my knee caps and going down stairs is becoming an issue (I'm 53) |
Basically terminal arthritis - almost complete loss of meniscus and joint space laterally. Also lots of calcification on medial ligament (partial tear about a year ago!)
I am naturally "knock kneed" which cant have helped.
Suggestion was that there isnt enough cartilage left to repair, although if it was locking they would try arthroscopy.
Frustratingly, most of the pain seems focused on the medial so go figure??
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Anyway, snowHeads is much more fun if you do.
Anyway, snowHeads is much more fun if you do.
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@martinperry, @martinperry, Well done on the weight loss and fitness.
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@martinperry, well done on the progress so far.
I had a lot of what you describe. I have very little cartilage and medial ligament damage. I was also told that TKR is inevitable, which it still may well be. I am just trying to delay it for now (I am 63).
All I can say is do as much research as you can, but for me losing ten kilos has really helped (I now weigh 55 kg. so proportionately we’re in the same ball park).
As per my post above, I went through a pretty intensive year of trying to improve my knees and I must say they are better than they have been for many years. I don’t rule out a TKR in the future, but taking every day as it comes I am really glad I did it all.
I am going to try and use PRP injections as ‘top ups’ - I am going for some tomorrow after 9 weeks on skis (only 4 days per week over that time) to see if I can keep the present state of affairs going for as long as possible. Looking forward to hill walking this summer.
Having good professional advice really helped. Good physio, good muscular skeletal consultant, good surgical consultant. I felt like I really understood what the options/possible outcomes were and it helps me to make choices and align my expectations. Invaluable.
Good luck with it.
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gixxerniknik wrote: |
I'm interested as I have a lack of cartilage under my knee caps and going down stairs is becoming an issue (I'm 53) |
This was my main cause of pain. The underlying issue was a torn meniscus but once that was trimmed the pain was still there because the articular cartilage on the patella had already worn away. Just under 3 years on from my first PRP injection, I have no pain walking downhill and if I do one-legged squats I can hear the crepitus in my knee but I can no longer feel it. I'm 51.
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Raceplate wrote: |
gixxerniknik wrote: |
I'm interested as I have a lack of cartilage under my knee caps and going down stairs is becoming an issue (I'm 53) |
This was my main cause of pain. The underlying issue was a torn meniscus but once that was trimmed the pain was still there because the articular cartilage on the patella had already worn away. Just under 3 years on from my first PRP injection, I have no pain walking downhill and if I do one-legged squats I can hear the crepitus in my knee but I can no longer feel it. I'm 51. |
Was that a single PRP or a course of 3? - sounds very promising
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You'll get to see more forums and be part of the best ski club on the net.
You'll get to see more forums and be part of the best ski club on the net.
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@martinperry, my experiences are on the first page of this thread, and other threads if you do a search under my username and PRP. 3 injections over 6 months. Sometimes think I should have had a fourth but it might have been overkill. Big improvement almost immediately that just continues to improve over time. The most significant thing for me is that my Baker's Cyst has not returned and I don't use anti-inflammatories anymore.
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@Raceplate,
Thanks - read it all with great interest but didnt make the connection!
A faint glimmer of hope - thanks.
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snowHeads are a friendly bunch.
snowHeads are a friendly bunch.
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Hi @Raceplate, Thanks, I have read your very interesting postings on this subject. I thought I was close to your original diagnosis from what you posted previously.
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And love to help out and answer questions and of course, read each other's snow reports.
And love to help out and answer questions and of course, read each other's snow reports.
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@martinperry, @gixxerniknik, pleasure, let me know if there's anything else I can help with. Just a couple more thoughts that I don't think I've posted before:
It took me about 3 years to find a PRP practitioner; with hindsight I wished I'd tried harder. The costs were very high back then - they are much more reasonable now. Jonathan Bell posted earlier that he does 3 injections for £995 which is great value and a very worthwhile gamble if you're on the fence about it. It's the cost of a week's skiing for a potential who-knows-how-many-years-worth of benefit? Also interesting to see how a respected consultant like him has changed his opinion on it - 5 years ago he was pretty sceptical when I was saying I really wanted to try it - now he's an advocate.
There's also no downsides as I see it. If it doesn't work, it doesn't work but you haven't lost anything as you would with failed surgery. Or even successful surgery - I've had both my shoulders reconstructed and whilst they're much improved, they'll never be the same as they were. PRP has to be worth a go as a first option in my book. I think it's really important to keep your joints as original as possible for as long as possible in the hope that stem cell or similar will be able to rebuild it naturally within a few years. No amount of stem cell is going to rebuild a plastic knee.
For those advocating cycling, I used to cycle a lot. Thought it was perfect for strengthening quads for skiing without any impact pressure on the joint. Which it probably is. However, once my knee was injured I came to the conclusion that cycling made it worse, not better. I often wonder if the quad/hamstring imbalance that can be caused by over developed quads was a contributor to the injury in the first place. I've tended to concentrate more on weight training and maintaining hamstring strength since, which for me at least, seems better.
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@Raceplate,
Your second paragraph chimes precisely with my current thinking.
Assuming im a suitable candidate for PRP, I reckon its a no brainer.
Im based near Stansted, so anywhere M11 corridor or into London would be ideal.
Anyone got any suggestions?
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You know it makes sense.
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@martinperry, has to be Jonathan Bell. He's in Wimbledon.
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Otherwise you'll just go on seeing the one name:
Otherwise you'll just go on seeing the one name:
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Quote: |
It took me about 3 years to find a PRP practitioner; with hindsight I wished I'd tried harder. The costs were very high back then - they are much more reasonable now. Jonathan Bell posted earlier that he does 3 injections for £995 which is great value and a very worthwhile gamble if you're on the fence about it. It's the cost of a week's skiing for a potential who-knows-how-many-years-worth of benefit? Also interesting to see how a respected consultant like him has changed his opinion on it - 5 years ago he was pretty sceptical when I was saying I really wanted to try it - now he's an advocate.
There's also no downsides as I see it. If it doesn't work, it doesn't work but you haven't lost anything as you would with failed surgery. Or even successful surgery - I've had both my shoulders reconstructed and whilst they're much improved, they'll never be the same as they were. PRP has to be worth a go as a first option in my book. I think it's really important to keep your joints as original as possible for as long as possible in the hope that stem cell or similar will be able to rebuild it naturally within a few years. No amount of stem cell is going to rebuild a plastic knee.
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Totally agree with everything @Raceplate, says here. If you can afford it, and as above, in the context of skiing for the next who know's how many years it is fantastic value, there seems to be no downside. A TKR, whilst positively life changing for many, at the end of a day is a form of amputation. You can't go back.
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Poster: A snowHead
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@martinperry,
A scan isn't the best way to determine if your osteoarthritic knee is ready for a total knee replacement, an xray is necessary when advising joint replacement.
There is no doubt some wear in that knee but it all comes down to how much of what you want to do is restricted. Have other non op measures being tried and failed?
No op measures include: physiotherapy, pills (used strategically), devices like orthotics and braces, arthroscopy in selected cases and injectable treatments (steroid/hyaluronic acid or PRP)
We are not there yet with cell injections and beware of some who are pedalling fat injections.
If the registrar didn't go through all those options with you the problem hasn't been adequately dealt with.
Jonathan Bell
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Obviously A snowHead isn't a real person
Obviously A snowHead isn't a real person
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Jonathan Bell wrote: |
@martinperry,
A scan isn't the best way to determine if your osteoarthritic knee is ready for a total knee replacement, an xray is necessary when advising joint replacement.
There is no doubt some wear in that knee but it all comes down to how much of what you want to do is restricted. Have other non op measures being tried and failed?
No op measures include: physiotherapy, pills (used strategically), devices like orthotics and braces, arthroscopy in selected cases and injectable treatments (steroid/hyaluronic acid or PRP)
We are not there yet with cell injections and beware of some who are pedalling fat injections.
If the registrar didn't go through all those options with you the problem hasn't been adequately dealt with.
Jonathan Bell |
This post in itself would be really good as a sticky!
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Well, the person's real but it's just a made up name, see?
Well, the person's real but it's just a made up name, see?
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You need to Login to know who's really who.
You need to Login to know who's really who.
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Anyway, snowHeads is much more fun if you do.
Anyway, snowHeads is much more fun if you do.
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You'll need to Register first of course.
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Hmm. Have been diagnosed with ET - high platelets . Does not seem to have helped my knees that I produce 2x as many platelets as I should ...
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@martinperry,
Pain on the inside of your knee can be from the angled knee straining the ligament on the inside. Options there include some form of orthotic in the shoe or an unloader type brace. Ossur and Donjoy both make them but if you go down that route get it fitted by a good Orthotist. Patella osteoarthritis is very commonly seen in association with the knee that is primarily worn on the (lateral) outside. Your patella femoral pain may respond to physiotherapy. Your pattern of wear, in addition, is often one that makes the knee feel a bit unstable or you can find yourself catching your foot on furniture as the “brain” fails to recognise that the foot is no longer under the centre of your knee joint! Arthroscopy definitely will not help your knee.
Ultimately a knee replacement (arthroplasty)would straighten up the knee, rebalance it (including the patella), make it feel more secure and take the pain away.
Jonathan Bell
Jonathan bell
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You'll get to see more forums and be part of the best ski club on the net.
You'll get to see more forums and be part of the best ski club on the net.
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Jonathan Bell wrote: |
@martinperry,
Pain on the inside of your knee can be from the angled knee straining the ligament on the inside. Options there include some form of orthotic in the shoe or an unloader type brace. Ossur and Donjoy both make them but if you go down that route get it fitted by a good Orthotist. Patella osteoarthritis is very commonly seen in association with the knee that is primarily worn on the (lateral) outside. Your patella femoral pain may respond to physiotherapy. Your pattern of wear, in addition, is often one that makes the knee feel a bit unstable or you can find yourself catching your foot on furniture as the “brain” fails to recognise that the foot is no longer under the centre of your knee joint! Arthroscopy definitely will not help your knee.
Ultimately a knee replacement (arthroplasty)would straighten up the knee, rebalance it (including the patella), make it feel more secure and take the pain away.
Jonathan Bell
Jonathan bell |
Thankyou.
Depressing!
Would PRP help alleviate symptoms for a while?
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Just an update, finished the alpine season last week with 5 full days of telemark skiing and the knees were fine. Range of movement is much improved since the injections and swelling is much reduced. I did the self check Oxford knee score and was a 29 in May '18 NOW scored a 32 as of May 19
http://www.orthopaedicscore.com/scorepages/oxford_knee_score.html
Grading Oxford Knee Score
Score 0 to 19 May indicate severe knee arthritis. It is highly likely that you may well require some form of surgical intervention, contact your family physician for a consult with an Orthopaedic Surgeon.
Score 20 to 29 May indicate moderate to severe knee arthritis. See your family physician for an assessment and x-ray. Consider a consult with an Orthopaedic Surgeon.
Score 30 to 39 May indicate mild to moderate knee arthritis. Consider seeing your family physician for an assessment and possible x-ray. You may benefit from non-surgical treatment, such as exercise, weight loss, and /or anti-inflammatory medication
As far as I am concerned the PRP injections certainly made a good improvement for me.
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