35 and no help for a worn out knee

[damianfawcett]

I have knee cap arthritis in both knees and to alleviate it my local hospital recently tried a lateral release (Nov 03). This has not only not worked it seems to have made it worse and now the OS says he can't do anymore as he feels I am too young for a knee cap replacement.

I am currently taking rofecoxib (25mg) but it no longer seems to help the pain and the locking that I experience through the day and, often at, night. I also have cocodomol (500/30) but although they give some respite I am reluctant to stay on these long term.

My next appointment is February next year (05) to determine if the condition has worsened but what do I do now?

Damian Fawcett

[dm]

Are your kneecaps too damaged for an articular cartilage transplant? Thats where they take out a sample grow it in a lab and put it back in.

Have they gone in there and shaved the kneecap and trochlear groove and smoothed out the arthritic areas? Having a clean up done doesnt fix it, but can relieve the pain for a while, as far as I know.

If they did a lateral release and you haven't been doing any VMO specific exercises to help keep the kneecap pulled over, I don't know what benefit an LR would have. Do they say if the kneecap is still out of postion after the LR. That could have something to do with the pain. Have you tried wearing knee sleeves with patellar buttresses in them to help control the kneecap position?
Has he said anything about the condition of the trochlear groove? That's the channel the patella rides in. If you have a naturally shallow trochlear groove, that could make things worse, from what little I know of kneecap problems.

I really don't know what else might help, as I have some patellar tracking issues, but not as severe. My medial meniscus being almost gone and my joint space collapsed so that the bones ride on each other is my main problem. I'm 32, so I know what you mean by being young and nothing they can do.

[MikeBetts]

hello.

just to add to the same line, im 31 and my knee is pretty awful as well.  

Im not saying you can't fix it, there are methods, such as has been listed above, but do keep a level head on the perspective that some knee conditions simply can't be fixed and you are better managing with what you have.

That said, I havent given up the fight yet!

Mike

[diaro]

hello
in my opinion may help some Synvisc

[damianfawcett]

Sorry for my delay in replying to your replies but a week in Amsterdam walking on cobbles nearly finished me off. At least I now know that I am not the only one with knees of a hundred and fifty year old. I apologise for not knowing all the terminology that you guys seem to know but I have just seen my GP and can at least try and have a conversation on your level.

The knee cap is very worn, too much for the articular cartidge transplant as what little was left was at best knackered. He did do a shave this time but what I forgot to mention earlier was that I had both knees shaved when I was only 15 years old due to problems I had been having for quite some time. My OS did a smaller shave this time and also cleaned all the debris away and the groove is quite prominent.

I have seen my GP for further advice but he is not that au fait with kneecap arthritis but tells me my OS is extremely good and would not not treat me further if he didn't have a good reason.

Diaro what is synvisc? I am intrigued.

Cheers,


Damian.

[Heather M.]

Damian,

I'm suspicious of doctors who say that they can't help you further because 'nothing can be done.'  More correctly, it should be that they don't know how to help you further.  

I've discovered a definite branching of schools of thought in orthopedics.  One school says that we are all going to get arthritis and the interventions are less than 100%, so those unfortunate few with early arthritis should just learn to live with it until they're old enough for a total knee replacement.  I had one doctor from this school of thought who told me to "get a cane and get used to pain" at the age of THIRTY-TWO!!!  These doctors are usually good for one or two tries at fixing the problem, but if results aren't good they throw in the towel.  

The other school of thought is much more focused on quality of life.  These doctors tend to see younger and more athletic patients who have used up their knees or people like me with congenital problems.  These types of doctors look at things like cartilage restoration techniques (ACI/Carticel, mosaicplasty, microfracture, etc.) to help improve the quality of life of patients who are too young for a total knee replacement.  They often tend to be knee specialists.

So I guess my advice to you would be to see one of the latter types of doctors who is up with the latest treatments for younger patients with worn out knees.  There are many non-surgical ways to deal with this problem, SYNVISC or HYALGAN among them.  

The best place I've found that explains the situation and options would be:  1) the Steps to Enlightenment on the upper right corner of this page.  Read it all, with a focus on Step 5 Patellae.  2) This is a web page for my surgeon, one of the pioneers for non-invasive cartilage restoration http://www.steadman-hawkins.com/patientEducation.asp  reaad the sections about knees, especially the chondral defects, patello-femoral pain, and microfracture.  Also, the TKR section might be of interest.  3) http://www.patellapain.com  This is a fantastic, if slighly technical resource.  Slog on through the different sections dealing with patellar damage.  This goes through the realignment surgeries that are designed to unload a damaged patella and may be an option for you.

Finally, just an observation:  doctors who don't perform these more sophisticated or intensive intervetions for patella damage tend to be very negative about them.  The difference between a good doctor and a not so good one is that a good one will TELL you about these other options and even refer you to another surgeon who does them.  A not so good doctor will tell you there's nothing else to be done....what he/she means is there's nothing else that he or she can do.  BIG DIFFERENCE.

Anyway, you've got a lot of research to do, because it's really best to be well-advised about your condition.  That way you can respond if someone gives you crummy advice.  It pays to be educated and involved in your case.  As I've advised repeatedly on this page, you've got to interview a whole panel of doctors, research your condition, then pick the doctor whom you trust and whose recommended treatment you can live with.  That's the most anyone can do.

Heather

[damianfawcett]

Sorry for the delay in replying but two young children mean my signing on time is limited.

Heather,
Thank you for your advice ( I bow to your superior knowledge). I am currently reading up on the websites you listed trying to get to a level of understanding that will at least show my doctors that I at least take this seriously, and will take the time to educate myself so the discussions are a two way conversation as opposed to the nodding dog they currently see. I assume that by your level of understanding you must have the same, if not worse, knees that I do so I guess I won't be seeing you on stage in Riverdance/Lord of the dance anytime soon.

Regards,

Damian.

[tsanford07]

Hello Damian,

I am just reading your posting.  Were you diagnosed with chrondromalacia patella?  That is knee cap arthritis....How did your appointment in Feb 05 go.  You may want to also check out www.carticel.com
I have knee cap arthritis in both knees.  I have had both knees operated on in 03.  One of my knee caps was at stage 3 and the other at stage 4.  The cartilige had pulled away from the knee caps....I will have a permanant disablity.  After being on crutches for a year and a half I have now been using a cane for almost a year.  I am back in therapy to prepare for more surgery.  They want to try the carticel and rescontruction surgery which means on one knee I will have 2 to 3 operations.  I will be 32 this year so we talked about just replacing or removing the knee cap.  But my doc thinks technology will be better in 5 to 7 years that they might be able to help me better until I am old enough to get a knee replacement.  How are you knee joints are they still healthy because that will make a big difference in what they do?  My joints are healthy but my knee cap do not align properly and my ligaments are strecthed out and that can not be fixed.  I also had one doctor tell me that there is nothing they can do for me.  He felt that there isn't enough long term evidence on these procedures that they grow cartilage or put in artifilce cartilage...and he didn't want to do any more operations.  A suggestion I have for you is to go to physical therapy and keep the rest of your legs strong in case they do want to do another surgery.

I feel your pain believe me...My life has not been the same from dec 2002

Tara

[finnva]

I am so thankful for all that share their experiences on this board ... it's like a wealth of knowledge that I have been searching for years to find. (What did we ever do before the Internet?)

I shattered my patella as a result of dislocation in 1995 at age 18 (leaving me with almost two-thirds of the whole patella remaining), and have since had three surgeries. My most recent was a tibial-tubercal transfer, which corrected my Q-angle by 12 degrees. I have had little problems with dislocation and mal-alignment since and I can safely say that my knee tracks very well. However, as a result of my shattered-tattered little bone, I have managed to tear to shreds the articular cartilage that remains between the patella and femur.

I was basically told, in 1996 when I first started looking into cartilage replacement, that I should "just live with it" because the procedure would never be approved, or even work, for my location. Now, I’m 28 and I've been checking it out all over again, I went to see one OS who has been very active with Carticel (he’s performed only 8 on the patella in the last 5 years, but performs up to 4/month on the medial condyle), but I didn't feel comfortable with him -- I just got the feeling that he was more interested in boosting his numbers that helping me reduce my pain and get back to rowing and cycling.

I would also recommend to you, Damian, to check out Carticel.com, but I've found that they cover their tracks pretty well, considering that the procedure has only been approved for other areas of the knee (not the patella). A doctor friend of mine (not an OS) suggested in the fight with the insurance companies to pay for this off-label procedure is to try, “They can either pay about $30K for this procedure now, or for a TKR in 10 years. And then another in 15 years.”

Here’s the thing, once the osteoarthritis has really taken hold of your joint, I’ve come to understand, you have passed the point when Carticel will help you. And the cells aren’t “normal” in the sense that they aren’t the same as your original cartilage cells, and some are somewhat “hyaline” or translucent and brittle. But hey! It’s not perfect, but it’s a decent patch to help me endure the pain and stave off the arthritis long enough for the technology to make another giant leap forward. This of course, isn’t coming from an OS but just a fellow sufferer, so you should always talk to your doc.

I did find one Q&A comment saying that the Carticel procedure on the patella had been 100% successful (http://www.cartilagerestoration.org/cgi-bin/cartrest/faq/faq_view.pl?index=161), but that’s the only place where I’ve found a number higher than 55% success-rate for the patella.

I’ve gone on too long. Please, everyone, keep sharing your stories! I can’t tell you how please I am to be able to read the stories and suggestions of others.

Jamie

[Mr.F]

I am in the same boat.  I am 35 with worn out knees.  I had 2 opertions on each knee cap.  I have been to doctor after doctor who refused to do anything or told me they could do nothing.  I was placed on physical therapy (which did not work), ice (did not work), heat (did not work), OTC medicines (did not work), cortizone (did not work), and synvisc (did not work).  After my series of synvisc shots (now 4 weeks) I am in worse condition than ever before.  I had saw my OS Friday (Sept. 9th) and we talked over my options: 1)do nothing and live with the pain, 2)knee braces to support the patella, 3)pain management, 4)patellar-femoral replacement (this looks like the way I am leaning), or 5)Patellectomy (removing the knee cap- Talk about extremes).

Do some research on Patellar-Femoral Replacement and/or pain management.  Also if the OS tells you there is nothing seek out another OS.  I know that 35 and major surgeries make it almost im[pssoble to find an OS who will look at your problem(s) not just your age.

PS-I have had lateral releases on both knees and it was not helpful.

[shadehawk]

Hi all,

Well, seems like my knee problems are not quite as severe as some of you but just thought I would still join this conversation.  Knowledge does seem to help if other steps or other procedures are necessary in the future.

I had a bad fall off my horse about 9 yrs ago and fell right on knees.  Knees have gotten worse since then  plus several other falls.  Visited OS's for over two years and was basically told that since my problems seemed to be under my patella nothing could be done and 'I'd just have to learn to live with the pain' and 'limit all activities'.  I had just about given up hope until I found this knee site..No one has to just give up......

Now, I have just undergone a debridement/lavage & LR about 6-weeks ago and hope this will give more quality of life, I want to be active again.  I have pain going down stairs - I go down steps like a duck & still walk with a cane and limp due to the weight-bearing pain.  I have another 7 weeks of recovery before reporting to my OS......so time will tell if this has been successful - even though the odds are only 40% it was definately worth a try.  One has to believe.....

It seems like I am older, but I still think if a person wants to be active a person should not have to settle for pain or wait for a TKR surgery.  There are microfracture, ACI, OATS and other procedures like this Carticel procedure available.  It is just so refreshing to learn that there is always new procedures on the way & that specialists are trying other procedures on the patella now.  It does bring hope.

Good luck to all,

Shade

[damianfawcett]

I have just returned to the site after a long lay off but having read all the various replies I would like to thank everyone for taking the time to add their advice and support. I find it quite depressing that there are so many people who suffer with this condition at such an early stage of life and like me face a unknown future where pain is a dominant part of life.
My last visit to my OS, following a year after the unsuccessful lateral release proved to be a pointless excercise. He more or less said that my condition would have to be managed by medication as further surgery would be irresponsible at my age. With all the contoversy with Vioxx and other similar drugs I have, like many of you, had to make several trips to my GP to try many new types of anti inflammatory that largely do nothing other than cause unwelcome side effects. I am now taking Arcoxia, which the pharmacist was not pleased in giving me. After taking handfuls of co-codomol for some time I am now taking liquid morphine, which at least offers some respite and allows me some sleep but I am concerned about long term problems with such a powerful drug. As the morphine leaves me rather drowsy I avoid it through the day and while working but this now means having to grin and bear it or revert back to the co-codomol.

Has anyone found effective pain relief, anti inflamatory drugs that don't cause an upset stomach? Or even better found a pair of new kneecaps on ebay that will fit a big bloke from Yorkshire.

Regards,

Damian.

[Natalie.D]

Damien,

I'm in a similar situation as yourself in that my kneecaps are wasted.  I am now looking into kneecap replacement and have an appointment in October to see a new surgeon who specialises in this area.  I don't believe the answer is to just live with it and spend your life completely medicated to ease the pain.  Can you see another surgeon to get a second opinion?  You don't say how old you are (or did I just miss it?), your surgeon says to have more surgery at your age would be irresponsible but surely being on liquid morphine for the forseeable future is also irresponsible?  I'm 37 and my current surgeon has come to the end of what he is able to do for me so has just referred me to another OS who specialises in replacements, do you think your current OS would do the same for you?  It might be worth asking and I would definitely pursue it and not settle for the option of living in pain for the rest of your life.  Good luck.

Natalie.

[stgiles16]

Damian, I am in pain management. I take Zoloft, MS Contin, Tramadol, and Naproxin. NOthing completely stops the pain but it does get it down to a manageable level. I dont function normally but I do function. I too have arthritus in both knees but mine is mostly located in the medial compartment. I have an appt on  Oct 4th to see my OS about my "good" knee and have him recheck my bad knee. He has said that my next step is cadaver transplant but I would like to put that off for as long as possible, or until I cant stand the pain anymore. I am 42 and too young for a TKR.
good luck
missy

[damianfawcett]

Thanks again for the speedy replies. Natalie, I am 37 later this year and you are right to recommend asking for a further referal. A letter has been sent to my OS saying that, while his comments have been noted, the pain is now where more medical intervention is required, sooner rather than later, and if his position is still the same would he recommend another specialist in either pain management or the dreaded knee. Missy, I have tried most pain relief out there and have found little respite. I hope that you don't react to tramadol like I did as I was like a zombie with a hangover. I hear what you're saying about the morphine and at the moment I can only say that I'm trying to be disciplined so that I don't end up addicted and having to take more and more. I only take a shot before I go to bed and on a weekend when I know I can hide away from my children. Let hope that my OS has a change of heart and thinks twice about writing me off.

Thanks,

Damian.