It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Knee & Hip Problems Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools Search this Thread
Old 11-09-2008, 05:29 PM   #1
Newbie
(female)
 
Join Date: Nov 2008
Location: Milwaukee, WI USA
Posts: 2
megs0212 HB User
Newly diagnosed with synovial chondromatosis - need advice!

Hi everyone - I am a 23 year old female with synovial chondromatosis. 6 years ago I noticed that I could not bend my knee all the way (I couldn't sit on the back of my heels). I was very active in cheerleading and dance and my GP said I had tendonitis and sent me to PT. I kept cheerleading all thoughout college, and just kept going to the athletic trainer for pain and swelling treatment. I have been out of college for 1.5 years now, and the pain has become worse. I went to an orthopedic surgeon and he did an MRI and found that I have loose bodies in my left knee joint and left tib fib joint.

My OS sent me to an orthopedic oncologist at our local medical college because he has delt with this disease before. The OO recommended 1) monitor to see if it gets worse 2) do a scope 3) do a scope and open up the back of my knee. I asked him if this is something I could put off for 5 years or so because it is not getting in the way of my daily life and is not too painful - he said he wouldn't recommmend it because it could damage my knee joint.

At this point, I am thinking of doing the scope and just taking out what they can get at (the dr. said he would use 6 scopes). I don't want to open up my knee if it will just come back again. After reading the other posts, I am wondering if this is the right choice. I didn't know that this disease was so debilitating. Right now, it is just frustrating for me, but I can walk fine and I have no nerve damage.

Is it better to get the surgery now before it gets worse or should I just wait and see if it gets worse? I think I might be in an early stage.

Please help!!

 
Reply With Quote
Sponsors Lightbulb
   
Old 11-10-2008, 09:10 PM   #2
Inactive
(female)
 
Join Date: Oct 2008
Location: wisconsin
Posts: 7
mart15 HB User
Re: Newly diagnosed with synovial chondromatosis - need advice!

Megs-
I just have to reply. I'm from Milwaukee too and have synovial chondromatosis. You probably have read some of my previous posts in the years past on this board. I very sorry to hear you have to deal with this stupid disease too. In fact I'm home recovering from a knee replacement I had just a little over two weeks ago.
We are all different and will react different and heal different but I'll give you my two cents worth. I was dx'd in 2005. Since then I have had two artho scopes on the front and two open synovectomies on the back and ending here with a TKR. More surgeries than I care to report. Each one did debulk the disease and when I had the TKR the dr said there was very little evidence of the disease. He could see thru the knee and see some in the back yet but I was aware that it was there by previous MRI's. I can't say yet how this will all turn out since it is so early but this TKR has been extremely painful.
In my humble opinion I'd wait until it really bothers you. The surgery itself can be very hard on a joint. I did wait for years before trying to figure out what was going on and probably waited too long. My knee was pretty much stuffed with tumors by that time and putting pressure on my nerves causing my foot to go numb. My nerve has never come back and I still have a numb foot. So you do have a gamble but surgeries are no picinc either. My OO also said that most people are happy with only one surgery and it is successful but he tends to get the ones that weren't successful. I don't know if you are like me though and just wanted to get it out of me. Kind of felt like cancer but thankfully it is not. I suspect you will eventually need surgery but don't jump into it. Surgeons like surgery. Maybe I'm feeling this way right now because I am having a hard to recovering yet from another surgery.
Good luck to you and if you have more questions please let me know. I would love to help or at least sympathize with you.
Martha

 
Reply With Quote
Old 11-12-2008, 05:18 PM   #3
Newbie
(female)
 
Join Date: Nov 2008
Location: Milwaukee, WI USA
Posts: 2
megs0212 HB User
Re: Newly diagnosed with synovial chondromatosis - need advice!

Hi Martha,

Thanks for responding! I hope your recovery goes well. You have been through a lot!!

I think I have decided to do the arthroscope and see what happens. If surgery is inevitable, this is the best time in my life to have it done. I am going to do it over winter break so that I don't have to miss school or work. I work in the summer - so that wouldn't be the best time for me.

How long does it take to recover from an arthroscope? I think my Dr. said 1 month - is that accurate? I am getting it done Dec. 18th and would like to be OK for New Years - not to go out, but to have a few drinks at home (my friends are going to sacrifice going out to be with me - isn't that nice?). I hope I'll be able to lay off the pain killers by then so that I can have fun. I am also hoping that I will be able to walk by Jan. 12 when school starts again. I'm a little nervous about walking 8 blocks to class in the WI winters with all the ice and snow. I'm sure my Dr. will tell me all this when I meet with him next Friday, but I'd rather hear it from someone who has actually gone through this.

Also, my Dr. said that he would be removing the entire synovial lining when doing the scope - is that what you had done? The doctor that is doing the surgery is my OS, not the OO that I saw (he doesn't do scopes). The OS said he does about 2 of these surgeries a year. That does not seem like a lot, but he is excellent with a scope in general (he is the surgeon for all the pros in MKE and the MU athletes) so I'm pretty confident in him.

Any insight you could provide would be very helpful.

Thanks,
Megann

 
Reply With Quote
Old 11-13-2008, 08:45 PM   #4
Member
(female)
 
Join Date: Nov 2008
Location: Milwaukee
Posts: 93
Mart16 HB UserMart16 HB UserMart16 HB User
Re: Newly diagnosed with synovial chondromatosis - need advice!

Hi Megann-
It sounds like this is the right time for you to do surgery. There is no clear right or wrong decision with this disease but the timing sounds good for you. Most OS's never see this disease so it is hard to get anyone with any real experience. OO's tend to see more generally because most OS's send their patients to them. That is the OO's specialty - tumor removal. Benign or cancerous. My OO said he gets the recurrences most often after the first surgery wasn't a success. It does have a high rate of recurrence but many find that one surgery will be successful.
My OO did not do arthroscopy either so he asked another OS specialist to join him. The OS did the frontal synovectomy. The OS was going to attempt to remove the synovium and tumors in the posterior also but could not get a clear vision so she aborted that part of the procedure. The OO then did an open posterior synovectomy. I'm assuming you will be only having the frontal done. Am I correct? If this is correct I'd say that a month to 6 weeks is a likely recovery. Hopefully this will debulk it enough to make you comfortable and reduce any damage to your knee.
At this stage for me it is hard to say if the SC hasten the arthritis or the multiple surgeries. Probably all the above but at least there was very little evidence of the disease in my knee when they preformed the TKR. I am certainly hoping this is the end of SC but SC has been know to recurr even after a TKR. The odds are in my favor though. Just so you do realize that a complete synovectomy is impossible in the true sense. There are too many nooks and crannies for it to hide. I actually have it outside the knee capsule now. In one of my bursae but it does not bother me there at all. I still have a spot of it behind my knee that the dr could see thru the knee during the TKR but I was aware of that thru the MRI's. It hurts from time to time but nothing to warrant another surgery.
I hope you have a very successful surgery and keep us posted in the days ahead.
Martha

 
Reply With Quote
Old 12-23-2008, 08:30 PM   #5
Member
(female)
 
Join Date: Nov 2008
Location: Milwaukee
Posts: 93
Mart16 HB UserMart16 HB UserMart16 HB User
Re: Newly diagnosed with synovial chondromatosis - need advice!

Megann-
Just wondering how your surgery went? What did they find in your knee? Hope you are still visiting this site and will give us an update.
Hoping it went well and you will be able to enjoy the holidays.
Martha

 
Reply With Quote
Old 04-02-2015, 02:13 PM   #6
Newbie
(female)
 
Join Date: Apr 2015
Location: UT, USA
Posts: 1
bsuepape HB User
Re: Newly diagnosed with synovial chondromatosis - need advice!

Hey Mart16,

Your situation sounds really similar to my husband's. He is 28 and began having knee pain at about 25 years old. He had knee pain for about a year then saw a OS who did an exploratory arthroscopy and diagnosed him with SC.

The OS referred us to a great OO who has now done a second scope and 2 open surgeries from the back of the knee to remove loose bodies, all with only partial synovectomies (he says he is hesitant to do a total synovectomy because he is so young).

The tumors keep growing back within about 6 months of having surgery which is hardly enough time for my husband to heal before the next surgery comes. Each surgery is causing more and more scar tissue, scarring-in the nerves and blood vessels. He is in constant pain; from the tumors before the surgery and from the incision and the scarring after the surgery, making him unable to live a normal life.

His knee joint is so contractured now that he can only walk with a visible limp and forget about kneeling or sleeping normally. The OO released the joint capsule during the last surgery but that doesn't seem to have helped (my husband thinks its because he left some tumors in the front of the joint that are preventing full movement).

Physical therapists and the surgeons can't seem to do any good for him now. His OO recommended the knee replacement in the next year, but I know those only last about 10-12 years which does not seem like long.... I even joked about amputation and the surgeon said it honestly may be an option someday in the future.

We are just becoming so hopeless and can't figure out what to do next. Do you think he should do the TKA and just stop putting it off? I have thought about trying more natural methods like lymphatic drainage massage to slow down scarring, etc., but those just seem too tame for the aggressiveness of his SC. Ideas for any type of PT that works especially well? Any advice at all would be extremely helpful.

Last edited by bsuepape; 04-02-2015 at 02:16 PM.

 
Reply With Quote
Old 04-03-2015, 01:16 PM   #7
Member
(female)
 
Join Date: Nov 2008
Location: Milwaukee
Posts: 93
Mart16 HB UserMart16 HB UserMart16 HB User
Re: Newly diagnosed with synovial chondromatosis - need advice!

Hello there!
Your husband is in a sticky spot. That is alot to happen to his knee in just 3 years. We do have many similarities. I am much older so the decision was a little easier for me to get a TKR. The materials in a TKR are getting better and better and I bet you could have one last 20 years now. Even at that he is so young. I really think he needs to continue with PT to help work on his range of motion. Each surgery will just make it worse I'm afraid. Even with a TKR it is a fight to get your range of motion and you have to be diligent about it. Has he had a MRI after his last surgery? Do they see more growths? Get his reports yourself and compare them. The pieces I have left behind my knee really were never resected. They were right there next to the nerves and blood vessels and the doctor said they could not have been in a worse place. Each new MRI I could compare the results and you can actually see if its the same piece just left or an actual regrowth. The doctor said its a particular hard surgery because the pieces can be everywhere and in every nook and cranny. He said it is not black and white. He also said even if a dr says he is giving you a complete synovectomy it is really impossible to get it all out. And of course anything left can cause problems down the line. I'm glad you are seeing an OO for this. It has taken me years to come to some peace with my knee. It seems to have stabilized and I don't think the left in pieces are growing. I do have a tendon that pops over it when bending my knee but my range of motion is very good. I too cannot kneel. There is no SC that I know of in the front of my knee but it still hurts to touch it. So I'm not sure if the SC keeps my knee in an inflamed state or not. What does his dr say as to why he is still having problems? Is he confirming there are more growths? I really think you need more time to see how this goes for you. Once you do a TKR there is no turning back. I did know a lady that was in alot of pain like your husband and she too begged her doctor for an amputation. He would not do it. She is working now with a spine doctor and has had an operation to help with her nerve pain. I will contact her to see if she can tell us how that is going for her. Tell your husband I wish him well and strength to put up with all of this.
Mart

 
Reply With Quote
Reply Reply

Similar Threads
Thread Thread Starter Board Replies Last Post
Synovial Chondromatosis melred General Health 8 10-01-2009 04:51 PM
New member- synovial chondromatosis arthroscopy phil5667 Knee & Hip Problems 2 01-01-2009 02:04 PM
synovial chondromatosis MoLu Knee & Hip Problems 64 07-07-2007 04:14 PM




Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 06:59 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2015 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!