Severely debilitating Chondromalacia Patella problems

[vickster]

It sounds like you have quite severe damage to the cartilage behind the patella, including full thickness on the lateral side (outside) I.e. the bone is exposed. It's not chondromalacia technically which means softening of the cartilage, which is more akin to. The grade 1 on the medial (innermost) side.. Once full thickness grade 4, unfortunately you're into the realm of arthritis as your post says

 The problem with the patella is there are big shearing forces exerted when the knee is bent and straightened and if it's not tracking properly in the cartilage wil wear away and keep wearing away. Hence needing something like a TTT osteotomy. Once it's gone, really it's gone, with full thickness damage, all the injections do is reduce inflammation and reduce pain hopefully. They won't grow back the cartilage without some sort of surgical intervention. Unless repaired with something like a cartilage transplant (maci in the UK), it's a waiting game for a replacement.  From my cynical perspective, lots of the new techniques with stem cells and what not seem to be a way of parting people from a lot of cash without very much real world evidence at the moment. My specialist has said in the past that there is research going on but we are still 20 years from having enough long term data on reliable cartilage regeneration

In the London area, the team at Spire Bushey are the main ones doing cartilage transplants. But from my experience (I went through the process with one of the surgeons in 2010) everything needs to be tip top and tracking well before going through the surgery. It's a 2+ year rehab and on the patella especially, the success rate is 50% at best. Professor Briggs there has a very good reputation, I'm sure he'll be aware of all the research and options in the UK (also trials).

There are other surgeons doing different surgeries privately. Anan Shettey down in Kent was pioneering something called Gel ACI. People on here who've seen him over the years say he's very thorough

The thing with these ops is that they are experimental, NHS trials have finished, private insurers are thus very reluctant to cover and paying out of pocket is very costly (£10k+)

There's no mention of the other other compartments in the knee so that's good news

There are good arthritis and patella primers in the information hub which will help explain the anatomy and the issues and potential treatments

I guess the best thing is to do the research, speak to some of the surgeons (when do you see the one who ordered the MRI?) and see what they suggest (and what you can afford)

Good luck

[vickster]

One thing looking at your first list, you say you got steroid viscosupplementation injections. These two things are not the same. You either get a steroid (mixed with local anaesthetic), a cortisone or depo-medrone. Or visco (hyaluronic acid). There are a few different brands, depending on the specialists/pharmacists preference, synvisc, ostenil, euflexxa, durolane.  These can be given as one injection or series of three. The cortisone is an anti inflammatory, the visco provides lubrication so the knee moves more easily, also reducing inflammation

If you've had one and not the other, it might be worth trying the other. Visco works well for me. Cortisone not so much

[Jasey122]

Thanks gain and yep, it don't sound too good  . Very distressing for me.  No wonder Ive been in so much pain.

But the size of the fissure doesn't seem overly large in comparison to other stories I have read on the site so Im guessing if injections are ruled out then Im looking at either micro fracture or a cartilage transplant.

Im willing to go to  Hospital for Special Surgery in New York where I here they do De Novo transplants. Does anyone know  any other suggestions.

Thanks again guys for your help

[vickster]

Most de novo posts on here seem to be west coast USA. I'd talk to Mr Shettey about his method, this says he's been working with Dr Saw who seems to be making good progress in cartilage repair

http://www.spirehealthcare.com/alexandra/our-facilities-treatments-and-consultants/our-consultants/mr-anan-shetty/

If you are wearing out the patella due to a poorly tracking patella that needs surgical correction, you'd need to figure that in to any cartilage repair, be it microfracture, ACI, de novo , or it could be an enormous surgery to no end

Have you discussed whether a custom brace may help?

[Jasey122]

Thanks again Vick. I was using a knee brace but my rheumatolgist was against it as she said it didn't strengthen the muscles whilst I was using it. What do you think?

Also, if I can go directly to Malaysia to see Dr Saw, do you think that might be the best of all the options? I have contacted his office for further info. Thanks

[vickster]

I don't know. I wouldn't before exhausting all options in the UK. But I've always to date had good outcomes from treatment and surgery here. I can't imagine myself ever travelling across the world for experimental surgery, and especially having to pay tens of thousands!  It was bad enough when I was referred across London thanks to the insurance company playing silly buggers. I'm happy to be back under the care of an excellent specialist 10 minutes from home!

On the brace, listen to the medics. Having strong and especially balanced leg muscles is crucial to keep the patella tracking as it should

[Silkncardcrafts]

At Pure Sports Medicine Dr Mike Bundy is very good.

You'd probably be better off seeing a Sports Physician first. Fortius is a great clinic too.

In general orthokine and PRP injections aren't very popular in the UK and Australia as there is very little research backing them up. You are taking a gamble when using them.

Both my knee surgeon and sports physician are head of their fields and both advised against them.

You have some brilliant practitioners in the UK, so there is no need to go overseas.

[gcoza]

At Pure Sports Medicine Dr Mike Bundy is very good.

You'd probably be better off seeing a Sports Physician first. Fortius is a great clinic too.

In general orthokine and PRP injections aren't very popular in the UK and Australia as there is very little research backing them up. You are taking a gamble when using them.

Both my knee surgeon and sports physician are head of their fields and both advised against them.

You have some brilliant practitioners in the UK, so there is no need to go overseas.

What are you talking about? What gamble? Orthokine injections are painless with no side effects. I have been twice on treatment. All he can lose is money. Let him try if he wants. Orthokine is the only thing that helped me with chondromalacia. Jasey122, if you want I can send you a contact? Orthokine in Croatia is much cheaper then in Germany. Also, you have direct flight from London to my town...

[vickster]

It might be worth doing a search on orthokine. I do recall a poster who had the injections in Germany but did unfortunately experience adverse effects. I can't remember the circumstances, details or outcomes

Painless is one thing. Evidence that a treatment is effective in the longer term for arthritis that has progressed beyond chondromalacia is another

[gcoza]

It might be worth doing a search on orthokine. I do recall a poster who had the injections in Germany but did unfortunately experience adverse effects. I can't remember the circumstances, details or outcomes

Painless is one thing. Evidence that a treatment is effective in the longer term for arthritis that has progressed beyond chondromalacia is another

Yes, I agree!
I also remember that post. He came from USA to Germany for orthokine injections. Maybe that was some kind of infection.

[Silkncardcrafts]

Orthokine is generally not recommended for the average person. Some elite sports people have used them but generally don't last long. I had a lengthy discussion with my knee surgeon about them.

You need to address the route cause of your problems.

[gcoza]

Orthokine is generally not recommended for the average person. Some elite sports people have used them but generally don't last long. I had a lengthy discussion with my knee surgeon about them.

You need to address the route cause of your problems.

Yes, that's probably right, but no one knows route couse of a arthritis problem. Average person or not, for me orthokine did just like advertised. 70% less constant pain. And it lasts like advertised (1-3 years). I was able to go back to my job and do ordinary daily rutines. Pain became tolerable. Before orthokine 5-8, after orthokine treatment 1-6 on a pain scale.

[vickster]

What was your diagnosis? What did the MRI report show?

[gcoza]

What was your diagnosis? What did the MRI report show?

MRI conclusions:

Left knee:
Chondromalacia patella. 12x9 mm lesion on the upper inner side of the patella with edema. The degree is not defined. Everything else is fine.

Right knee:
Some signs of enthesopathy on ACL.
Discrete horizontal rupture of the medial meniscus. Discrete chondromalacia patella with minimal lateral position of patella.

Who wants to take a peek at my knees, feel free to do it at:
https://www.dropbox.com/s/u7f3izpkt0oqyu5/RIGHT%20KNEE%20MRI.rar?dl=0
https://www.dropbox.com/s/f47z0no1scw4qnj/LEFT%20KNEE%20MRI.rar?dl=0
https://www.dropbox.com/s/49wn0olscm6fnqn/X%20RAYS%20LEFT%20KNEE.rar?dl=0

[Silkncardcrafts]

For PFJ problems there will be a reason why there is softening of the cartilage for example.

In my case I had trochlear dysplasia which was addressed by a trochleoplasty. I also have patella alta.