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Knee & Hip Problems Message Board


Knee & Hip Problems Board Index


Hi all-
Looking for other patients of synovial chondromatoisis. Would love to know your experiences especially other treatments you might have had other than synovectomies. I've had a complete synovectomy in my left knee last Oct 05 and it has reoccured already in March. I'm now recovering from another synovectomy (open knee surgery) and am wondering what others have found on it reoccuring again. Would love to connect with more people on their experiences. I do have some tibial nerve damage but it's not too bad. Just can't stand the thought of it coming back again. Anybody?
Martha
Hi Jackie-
Glad to hear from someone. I was kind of giving up hope. I'm six weeks out from my last surgery but my knee feels just the same as it did before surgery. I think it is too soon for another MRI to see if it is back already but will be seeing the Dr on June 20th. I'll see then.

I don't know of a Dr who is VERY knowledgable but my Dr is an oncologist at our local Medical School. Everything I have read people say to go to an oncologist for the best results. Unfortunately there aren't many of us out there. He has treated many he said. One girl had 8-9 surgeries before they finally put in a new knee. I guess she was pretty young. Another he said comes back every 5 years and gets cleaned out and one has turned to cancer. Yikes!

I have read so many different opinions regarding radiation. If that is ever offered as a suggestion I would have to think hard and long about it. Most people just seem to keep going back to surgery and hoping for the best. This might not be life threatening but it sure is affecting my life. How are you coping?

Have they said they want to replace your hip? I'm 55 and feel I'm too young for a knee replacement yet. Would like to hold on a little longer before that happens. How old are you?

I'm in Milwaukee. Where are you located?

I hope to hear again from you too. Let me know how things are getting on for you. Ask me any questions and offer some info to me too if you have any suggestions.

Martha
Hi Jackie-
So did you meet with a new dr and get some new info? I've had an MRI again because I sure felt like it has come back again. I don't know what to make of the results. It says there are still 3 dominate pieces in the same area that was reported on the last MRI before surgery. Also states there is a synovium process still going on. I have two dr's who did the last surgery and I have met with the artho dr who did the front of the knee. Since there is no recurrence listed on the MRI in the front part that is all she would talk about. Wouldn't talk at all about the pieces in the back since she didn't operate on that. She feels my pain is due to a strengthening issue and I just need PT to continue. I'll meet with my oncologist at the end of JUly. She did hint that maybe those pieces where left in there on the last operation because of their location. You'd think someone would have mentioned it to me if they had left some in. Anyway I'm a little confused now if it has come back or not. I'll just have to wait and see.

I hope you are doing well and aren't in too much pain. This is all such a nusance to deal with. It sure has affected my life. Keep in touch.
Martha
Hi Jackie-
So just wondering how your appt went with the dr. Is he recommending a hip replacement or to wait a while longer?
I felt better this week and have been working harder at PT. So then today I had a little more active day than usual and feel like crap again. One day I feel a little better and the next right back where I was. I'm sick of being sick! I sure don't feel like my old self. Feeling pretty old and decrepid.
As far as dating again you should go for it. I think most people have some ailment or another. We all go into a relationship with some baggage or another.
I recently read a article regarding SC and they said the average number of years before a person gets a knee replacement after the diagnosis is 1 1/2 years. And get this there is a 25% chance of recurrence even after that. Won't this ever end! I have my dr's appt this Fri and hope we have a good discussion. I hate leaving the dr and feeling like nothing was accomplished. Feeling kind of lost on all this. It's hard to not dwell on it when everytime you move it hurts.
Hope to hear some good news from you. Keep in touch.
Martha
Hi-
Let me try this again. I posted a long detailed response and it didn't go thru so I'll try again.
My symptons started maybe 6 years ago. My knee started swelling off and on and I had a general full feeling with a slight pain in the back of the knee. It would lock sometimes when I'd get out of a chair but didn't last long. Also an unexplained numb heel. Could not completely flex or extend my leg either. My dr and I thought it probably was arthritis so he sent me to PT without any xray or MRI. PT helped a little but not much. Continued on with minor limitations until one day my foot went numb. Then I decided this was not normal and needed to find out what was happening. Went to the dr and got blood work first. Found I had low thyroid and low B-12 but this was affecting only one foot and not both so he sent me to get an ultra sound of the knee to check mainly on my blood vessels. Showed I had a Bakers cyst but blood flow seemed normal. So he sent me to an Orthopedic Surgeon who specialises in feet. He took an x-ray and it came back normal so he didn't know what was causing the foot problem. I told him the only other thing that hurt was my knee so he ordered a MRI. Finally it showed the tumors all thru my knee and they were pressing and stretching my nerves and blood vessels. He then sent me to another OS who specializes in knees. I had first an arthoscopic frontal synovectomy and got a firm diagnosis of SC. Then he did a posterior oen knee synovectomy. A couple of months later it just didn't feel right again and the nerve showed no improvement so I had another MRI and it was back again. He sent me to an Orthopedic Oncologist who preformed another frontal and posterior synovectomy. A couple of months after surgery I still don't feel right so another MRI shows I still have some tumors and still am having nerve problems. Not sure what my next step is. My nerve problem concerns me the most.
I hope I've answered some of your questions. Do you suspect you have this disease? Another synovium disease is PVNS which has similar symptons. If you have any other questions just write and I can see if I can help. The MRI is the best dx tool for this disease. X-rays don't always see it until it ossify's. Good luck to you in your research.
Martha
Hi Jackie-
Glad to hear from you again. Our situations sound very similar. I too went up the chain to the best doctor and still he missed pieces too. I think this is a disease that is very hard for any dr to conquer. Lucky us! The dr is very reluctant to go back in for a third time but of course just my luck one of the pieces is right next to my nerve and is still irritating it. He's concerned about this. And on top of that my knee is just falling apart now from arthritis. He wants to do a knee replacement and was actually scheduled for awhile to do it this Nov too. He says if there is an active synovial process still going on it will reoccur even with a new joint. I tell ya we just can't get rid of this. Anyway he's talking with another dr and trying to decide what my next step should be. I walk horrible and look forward to some answers. I'm not looking forward to another surgery but I can't keep limping around. Before you know it I'll have hip and back problems too.

I hope your surgery goes well and gives you some relief. If you find the magic pill let me know. Keep me posted.
Martha
Hello Graham-
Good to hear from you. So you too have it keep coming back. I'm wondering about your arthoscopies. Does that mean you have only had the front of your knee cleaned out? Do you have loose bodies in the back? Are they painful? Also with 7 surgeries do you have any problem with scar tissue build up? Do they say the disease has brought on the arthiritis? Will it hasten the progression of the arthritis? Would like to compare notes and dr's answers. I can't believe my arthritis has come on so fast and to the point dr's are talking knee replacement. I'm having a horrible time trying to make up my mind to go ahead with it or not. I'm going back to my original OS whom I like very much and get a 2nd opinion. I start out the day not too bad and the swelling just gets worse hour by hour. So if you ask me if I need a TKR in morning I'd so no but by the evening I'm ready to sign up. Do you have swelling everyday? Do you feel relatively normal for awhile after surgery before it comes back again? I just don't know what I should be feeling because not one day has been normal since being diagnosed. Maybe I'm expecting too much and this is how it will be.

Hope to hear again from you.
Martha
I'll answer in turn!
[QUOTE]Does that mean you have only had the front of your knee cleaned out?[/QUOTE]

Yup - I guess so.

[QUOTE]Do you have loose bodies in the back?[/QUOTE]

A few but they do not seem to trouble me that much. There is a bit of swelling but that's all

[QUOTE]Also with 7 surgeries do you have any problem with scar tissue build up?[/QUOTE]

A little, after the operations I try to get on my feet quickly. The best thing I found is walking up and down stairs. This helps, plus physio and also each operation the consultant removes as much scar tissue as possible. That's the painful bit :)

[QUOTE]Do they say the disease has brought on the arthiritis? Will it hasten the progression of the arthritis?[/QUOTE]

Yes definately. The surface of the bone is worn out where the loose bodies have been in the way. I saw an experimental treatment used to treat similar legions in the knee in sports enthusiasts where cells cultured from a healthy knee are implanted in the damaged knee. I have discussed this with my consultant but he believes there is no point trying to treat these problems whilst the knee is still actively producing loose bodies.

[QUOTE]I can't believe my arthritis has come on so fast and to the point dr's are talking knee replacement.[/QUOTE]

All I can say is try all other options if you can. Why not look at changes in diets or alternative therapies such as Homepathic treatments or acupuncture. All have been documented as helping with arthritis. At this stage the worst that can happen is nothing, the best is you won't need a knee replacement!

[QUOTE]So if you ask me if I need a TKR in morning I'd so no but by the evening I'm ready to sign up. Do you have swelling everyday?[/QUOTE]

My knee is permanently swollen and it does get worse throughout the day but it does not normally restrict my movement as it swells (I have a permanent 10 degree loss of flection). Best thing for this is to put your leg up in the evening, keep it iced. At work, I had a bag of frozen peas and iced my knee 3 or 4 times a day, I kept my leg horizontal where I could.

[QUOTE]Do you feel relatively normal for awhile after surgery before it comes back again?[/QUOTE]

Depends... I think twice I have come out with no improvement - this with a different consultant but otherwise I noticed a difference after around 3 weeks. Since being diagnosed correctly I have been back in for another op between 1 & 2 years after the previous one.

[QUOTE]I just don't know what I should be feeling because not one day has been normal since being diagnosed. Maybe I'm expecting too much and this is how it will be.[/QUOTE]

We all have high expectations from the medical profession but unfortunately it is still the case that some problems cannot be solved. This still frustrates me often and whilst I have now come to terms with the fact that I cannot do all those things a healthy 31 year old should be able to do I now count myself lucky that it is not worse. I still get days when I feel depressed and I am sure you will too.

I must also confess to feeling anger at those close to me sometimes, my wife in particular can get quite annoyed that I won't go on long walks for instance. It helps me when I realise that she cannot understand what it is like to be put in a position where you physically [U]can't[/U] do something rathern than [U]won't[/U] do something.

Get that second opinion, you need to speak to someone who has treated this before and keep an open mind. Don't let anyone tell you trying alternative therapies is not worth it, as I said, the worst that could happen is nothing!

[[COLOR="Sienna"]removed[/COLOR]]
Graham-
You sound like a very smart reasonable man. Why you are almost as good as a second opinion! Your symptons sound so familiar and I think I am expecting too much from the medical profession. I need to step back and calm down. This is my first year of this disease with 3 surgeries already and I want anwers but there really aren't any. You have a few years on me and are at a place I hope to be someday. A little more accepting and not so angry and shocked by it all.

I talked with the nurse today and the dr's have decided to wait on an MRI in Dec to see if there is any change in the disease. If the disease is back we'll talk a resection - if not we'll talk TKR. So this will be OK with me as long as I have no change in my nerve problem. That I won't wait on.

Understand completely about family. This disease is their disease too. My husband if very patient but they all say to just get the TKR so I can hopefully be more like my old self. They don't quite grasp that there is no turning back once you have a new knee. Mentally I'm not ready for it.

Thanks for you response it was very helpful.
Martha
Hi Jackie-
Good to hear from you. I did have my second opinion with my old OS and had a very good talk. He agreed that a knee replacement is justified but not absolutely necessary. Totally up to me. So I have definately made the decision to wait. I'm just not mentally there yet. I've had enought PT this past year and just am not up to more extensive pt. I'll wait until after my daughters wedding in May and then look back on the past months to see how bad it has been. Maybe it won't be so bad and I just need to give it some time. We talked more about the disease and a TKR and he agrees with my oncologist that a TKR would not remove the disease. Would slow it down and remove a good share of it but unfortunately for me the disease is not all in the knee capsule. In fact alot of it is outside the capsule in the back and a bursae too. He also said I shouldn't have another resection unless it is absolutely necessary but that is a possibility if it comes back. So maybe your situation with a hip is different. Maybe all your disease is in that hip socket and a removal would end it. Wouldn't that be wonderful! You will be having your operation soon. Hope all goes well. Look forward to hearing how you are doing.
Martha
Hi Jackie-
So have you found any new dr's with some knowlege of SC? You were going to HSS right? That stands for Hospital of Special Surgeries right? I have read good things about this hospital so I find it hard to believe that there isn't someone very knowlegeable on their staff. Maybe he was the one and just too rushed to do you justice. I have problems myself with that. I never know which dr is going to show up at the appt. My husband and I laugh on which dr is going to show up. Dr Good or Dr Bad. But in their defense somedays must be very hard for an oncologist. I too have read some scary things about tumor removal in the hip when they have to dislocate it. Good results with artho and a good dr but never quite gets it all out because they just can't reach all of the synovium. Hard decisions but maybe artho could at least buy some more time until the inevitable hip replacement. Let me know how it all unfolds. I hope you get a dr soon that's right for you.
I met with my oncologist today and got the results of my MRI. Good news. No new growths and the remaining ones are the same too. Radiologist still says a diffuse synovial process is taking place and the synovium is still thickening. Doesn't seem to be so aggressive though and has slowed down a lot. My knee has been feeling better and stronger and I'm not limping around nearly as much. It still hurst because of the OA now so I asked for a cortisone shot to see it it helps. To soon to tell tonight but I do see an improvement. That would be so great if this works and buys me time on a TKR. Keep your fingers crossed.
Now the bad news. My back is hurting now!!! I've had back problems for 30 years on and off. So I talked with the dr today about this and my on going nerve problem in the calf and foot. Could this numb foot really be associated with my back after all this? And we just happened to stumble on the knee first? I tell ya! He refered me to a another OS for spines who he acutally goes to. Having some siatica problems but hope to wait and see maybe after Christmas. Depends how bad it gets. I really want to be ok again but all and all feel much better. Not as depressed and am getting on with doing things again. Joined a low impact water aerobics class which I love. Flunked yoga - just not for me.
Happy Holidays to you! 2007 will be better we can only hope.
Martha
Hi Jackie and Martha,

How are you both, has the new year brought any relief to your conditions?

I had my first reoccurrence of symptoms a few weeks back. It feels to me like another nodule has become detached in my knee and is floating around! This since my op in march last year. The consultant has said I need a total synovectomy but I am going to leave it as long as possible this time - that's two months in bed and I may be a lazy man but not that lazy!

Anyway, I hope you are both well.

Graham
Charlie-
Boy it sounds like you have some tough decisions to make. You are so young for a hip replacement. I hope your drs are giving you lots of advice. They should be guiding you. 2nd opinion would be good too. I hear alot of negative things regarding the NHS. I had thought a national healthcare system for us in the states would be good but now I'm not sure.

Regarding other joints in the body aching, I do agree it throws you all off and can easily hurt elsewhere. I know my pt exercises focused alot on my hips while I was recovering from knee surgery. Now I'm having back problems and I'm sure those years of limping didn't help my back. I just take over the counter ibprofen for my pain when I need it. Most pain medicines make me sick to my stomach so I avoid them. Ibprofen seems to work really well for me.

Good luck with your decisions.
Martha
Charlie-
So this is it? Surgery on Wed. Sounds like a good plan. I'll be thinking good thoughts and look forward to hearing from you after. I'm praying for a speedy recovery!
I'll give my opinion on stitches here too. My first surgery (open) the dr used stitches and it healed up with a very minimal scar. The second (open) by my onconologist used staples. My scar is not very pretty now. Not sure if it is the staples vs sticthes or 2nd surgery vs 1st surgery. Equally irritating in removal. Used Vitamin E a little after both surgeries. Couldn't see much change. Be careful when using creams before your scar is healed. Can reopen the wound if done too early.
Sarah- very distrubing to hear you have SC in your other knee. Our worst nightmare. Keep us posted.
Jackie- any news on your end? Any new dr visits? Congrats on becoming a grandmother!
Graham-going in for a synovectomy? I've had two complete ones and I wasn't in bed for 2 months. First two weeks are the worst but after that things start feeling better quickly. I was back to work in 6 wks after the first one and 8 wks after the 2nd one. I do have a desk job so that does make it easier but I was off crutches by the end of the month.
A little update on me. Saw spine specialist and the EMG shows nerve ranges all normal. I just don't understand that. How can I feel so much and it is normal? Found my arthritis in my lower back is severe and extensive. Bone on bone he said. I started a drug called lyrica to see if it helps the burning in my legs. Has a lot of side affect warnings and I don't handle medicine very well so we'll see if it works. Kind of nervous taking it but looking for some relief here. See the onconologist the 23rd. Will report back on that.
Martha
Hello Bob-
It's a shock isn't it to be given this dx? And I know the feeling about visiting an onconlogist. It is scary. I still get worked up everytime my visit comes up. Surprised your visit from the OO didn't give you more advice. Doesn't he suggest another qualified dr to seek out? He should or maybe call this office and ask. If you are not in pain maybe it is a wait and watch situation but monitored closely for changes. Your foot numbness sounds all to familiar. That is what happened to me and it still concerns me the most. I've had two open posterior surgeries where most of my tumors were also located around the vessels and nerves. It is a very difficult operation and most dr's would shy away from it unless absolutely necessary. But if your foot is numb than that tumor is disturbing your nerve and I would take that seriously. I think you haven't found the right OS yet and would benefit another opinion. If the nerve is damaged too much you might not ever get your feeling back and maybe worse. Surgery is dangerous too so no easy answers. You say your knees are shot. Does that mean you have OA already? Would a TKR solve your problem? Sounds like maybe it is outside the knee capsule like mine and a TKR wouldn't solve it. Weird condition is right! Take care and keep us informed.
Martha
Hello Martha,

Thanks for initiating this thread. I have trolled the internet for info re this condition, and am looking for any info that can help me make up my mind as to whether or not to have this thing removed behind my right knee, so getting input from others with SC could be helpful, and for what it is worth I am happy to share any information I obtain that may help too.

I have seen three suregeons so far, and am going to schedule an appointment with a fourth. The one I went to intitially in Tucson where I live is retired from doing surgeries, but still does consults, and he referred me to the Mayo clinic in Phoenix to see the oncologist. After diagnosing me with SC, the oncologist took several days to return my many calls and when I finally got a hold of him he was not helpful at all and it seemed he didn't want to talk with me. I am told he is backed up with surgeries for canerous tumors for several months, and is the only doc in the state that can work on them.

Even though this thing is disturbing, and reminds me at all times it is there with my foot being numb, at least the doctors are reassuring me that it is benign so it won't kill me at least, so for that I am truly grateful.

So I went back to my original surgeon who is retired from doing surgeries and he referred me to one of his colleagues, another ortho surgeon in his practice who told me that if I do decide to get it removed, he will have to do it along side a vasular surgeon. He says this thing is so big they would have to open up the back of my leg with about a one foot incision. So I am currently in the process of scheduling an appointment with the vascular surgeon to see what he has to say.

At this point, it seems to me like the doctors are more or less telling me "well if you want it removed just decide yourself and we will get you on the operating table and give it a go", yet they either don't know enough themselves to give me more info as to whether or not to have it removed, or they are uncomfortable steering me in either direction because of liability I suppose, or what not.

Bob
Hi All-
Just a little update after my dr visit. Dr was sick (yes even dr's get sick) so I saw his PA today. No MRI but did take some more xrays. I think they are monitoring the OA more right now than the SC. Just a little more OA behind the knee cap because a spur has formed. But otherwise not too much more degeneration which is good. Feels about the same to me. Told her I'm still not ready to talk about a TKR. I'm not limping and am getting around ok so we'll wait a while longer. Just sick of feeling this stupid knee. Could try another cortsone shot but the 1st one didn't work so I'm not going to bother with another. She sent me home with info to read up on Synvisc and to call back if I would like to try it. That would be my last option and if that didn't work only a TKR would be left to do. Had her look and feel my suspicious bumps on my calf. She could feel them but wasn't sure what they could be. She'll talk with the dr about them. She could feel my SC that I knew I had behind my knee but we'll just wait and see if my knee starts getting the full feeling again before we react to that. My ROM is really pretty good. I don't feel any SC in the joint restricting it at all. I think the OA is bothering me the most and the numbness but I don't think I need to do anything at the moment. Probably just try the Synvisc. I'll keep in touch.
Martha
[QUOTE=MoLu;2943229]Hi All-
Just a little update after my dr visit. Dr was sick (yes even dr's get sick) so I saw his PA today. No MRI but did take some more xrays. I think they are monitoring the OA more right now than the SC. Just a little more OA behind the knee cap because a spur has formed. But otherwise not too much more degeneration which is good. Feels about the same to me. Told her I'm still not ready to talk about a TKR. I'm not limping and am getting around ok so we'll wait a while longer. Just sick of feeling this stupid knee. Could try another cortsone shot but the 1st one didn't work so I'm not going to bother with another. She sent me home with info to read up on Synvisc and to call back if I would like to try it. That would be my last option and if that didn't work only a TKR would be left to do. Had her look and feel my suspicious bumps on my calf. She could feel them but wasn't sure what they could be. She'll talk with the dr about them. She could feel my SC that I knew I had behind my knee but we'll just wait and see if my knee starts getting the full feeling again before we react to that. My ROM is really pretty good. I don't feel any SC in the joint restricting it at all. I think the OA is bothering me the most and the numbness but I don't think I need to do anything at the moment. Probably just try the Synvisc. I'll keep in touch.
Martha[/QUOTE]
Hi all-
I'm just checking in too. Love it when we all update. You just never know - your story just might be of help to the next person. Gbrown your note about your back really hit home. I'm on vacation and am having a hard time walking because of an intense pain in my left butt. I'm thinking it's a hip problem now. Possibly from walking incorrectly. I've never had any pain there before and it's a definite spot. I'm going to my OO this month and will complain about that now. Also called ahead and am going to have Synvisc injections started on my knee. Right now my pain in the butt hurts more than the knee. Also am going to try Lyrica for the nerve pain again. Dr wanted me to give it another try. I'm just so tired of having pain and constantly aware of leg pain. I feel the lump of SC behind my knee getting bigger but my flexion still seems ok so I think my interior knee is still clear which is great. I'll let you know how the injections work.

On a personal note it's been a little rough lately. Right before my daughters wedding my husband was dx with prostate cancer. He has surgery this week on Fri the 13th! Give me a break! We might have SC that keeps coming back and is a total pain but at least it's not cancer. We are so lucky.

Take care all of you and keep posting.
Martha





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