Banner - Hide this banner





Author Topic: Synovial Chondromatosis 3X's  (Read 21387 times)

0 Members and 1 Guest are viewing this topic.

Offline smeagol

  • Forum Faithful
  • ****
  • Posts: 192
  • Liked: 0
Re: Synovial Chondromatosis 3X's
« Reply #15 on: September 26, 2006, 07:33:31 PM »
Martha
it was just front, arthroscopic only.  just had my major bandages off today, no brace or anything, wish i did though the slightest twist is excruciating.  i have so far been just taking diclofenac (anti inflamms like ibuprofen).  im still feeling too sick to take anything more.  ive got PT to do, and i have to do it straight away, been doing little leg raises etc, now the bandage is off i can start the bending.  i cant take any weight at all on it yet though, way too painful.  ive been getting about with crutches, just so i keep trying to move and not lose the muscle.  i have ice on it at the moment, dont know how i would cope without the ice, i think i would swell so much it would explode!  so far i have slept loads and for some reason my knee feels loads better after a good sleep so i keep sleeping then exercising.  so far i havnt been able to stomach any food so im feeling a bit light headed.  might try some toast tonight and see if i can cope with that. 

Good luck with the oncologist, tell me how it goes.  im sure its a good sign that it went ok with work, i think its what you need, you've had too mcuh trying to fix it, so better to replace it.
charlotte
About 10 years of pain, 3 arthroscopys, and still no help with my condition or my current problem.  And I'm only 20!

Offline MoLu

  • Regular Poster
  • ***
  • Posts: 142
  • Liked: 0
Re: Synovial Chondromatosis 3X's
« Reply #16 on: October 03, 2006, 03:29:14 AM »
Charlotte-
Sounds like you are doing well.  Are you?  Since it was only arthoscopy you should bounce back quickly.  You had said previously that you knee was full of tumors so I'm a little concerned that arthoscopy is enough.  What about the tumors in the back of the knee?  What did the dr say about those?  Did he notice any damage to your knee due to the many years of inflammation from the SC?  I'd like to get other dr's spin on all of this.  I like to compare and hopefully learn something new.

Well I'm still up in the air about my next step.  I've taken my name of the surgery list for the time being.  Had another meeting with him and he is going to talk with my other OS about my situation and get back to me.  I'm waiting it seems all the time for some answers.  This all is just not going like I had planned.  That it would be all over and be back on track with the last operation.  He did say that a new knee will not cure it.  Will slow it down but if there is a synovial process still going on it will come back new knee or not.  It can't damage the new knee since it's metal and plastics.  Also talked about my tibial nerve problems.  So then he suggested after a knee to come back and have another posterior open knee surgery to remove those other pieces.  He cannot access them thru the knee replacement because they are out of the knee capsule.  Or we just might wait and MRI again in Nov to see if there is any change.  From 1 surgery to 2 surgeries to MRI or maybe even do nothing.  Nobody knows what to do.  I'm going to my old OS to talk things over and get a 2nd opinion.  He was easy to talk to and I really need to talk this mess over with someone.  No easy answers here I'm afraid.

Well keep me posted and share with me and any other future patients your recovery process. 
Martha
Synovial Chondromatosis
9/16/05 Frontal synovectomy and tumor removal
10/26/05 Posterior open knee surgery and synovectomy with tumor removal
3/8/06 Disease is back
4/26/06 Frontal arthoscopic synovectomy and posterior open knee synovectomy
6/23/06 Disease is back
7/24/07 Synvisc
10/23/08 TKR

Offline MoLu

  • Regular Poster
  • ***
  • Posts: 142
  • Liked: 0
Re: Synovial Chondromatosis 3X's
« Reply #17 on: October 19, 2006, 04:32:29 AM »
Charlotte-
I'm just wondering how you are doing?  Healing well?  Curious if you have any knee damage from all those years of SC.  There seems to be a definate  link between arthritis and SC.  I'm not going thru with the TKR for awhile.  My daughter gets married in May and I don't want anything to spoil that so I'll live with it for now and assess it after the wedding.  Still limping a little and have pain when I walk.  It's very fragile and I have to watch what I do but not too bad.  Had a great talk with my old OS and feel good about my decision to wait.  I'll have another MRI in Dec to monitor the disease.  I'll keep you posted.  Let me know how you are doing.
Martha
Synovial Chondromatosis
9/16/05 Frontal synovectomy and tumor removal
10/26/05 Posterior open knee surgery and synovectomy with tumor removal
3/8/06 Disease is back
4/26/06 Frontal arthoscopic synovectomy and posterior open knee synovectomy
6/23/06 Disease is back
7/24/07 Synvisc
10/23/08 TKR

Offline smeagol

  • Forum Faithful
  • ****
  • Posts: 192
  • Liked: 0
Re: Synovial Chondromatosis 3X's
« Reply #18 on: October 23, 2006, 02:07:24 PM »
Hi
I still cant walk up stairs properly and im not safe down stairs either.  i cant bend my leg more than 90 degrees despite a lot of trying.  any sideways movement is still very painful and i keep getting random pains shoot through my knee.  the wounds heve healed well however, and are nice and neat.  the kne is extremely tender still and theres a lot of heat and swelling in it.  theres signs of minor damage in there,the surface of the articular cartilage is a bit worn, nothing too bad thankfully.  the back of the knee has been left, although if im still having pain and need another operation im going to insist they check out the back.  im getting very frustrated with it all. its so limiting.  i have a check up on the 8th november so i will know more then. 
ive been thoinking about the future and how my knee is going to affect it.  i dont want to be limping down the isle i want my wedding to be perfect (talking in a few years obviously), but with this problem keep coming back i dont know what to do.  i dont want to spend my life worrying about my knee hurting and many operations. 
its so frustrating that nothing can be done
charlotte
About 10 years of pain, 3 arthroscopys, and still no help with my condition or my current problem.  And I'm only 20!

Offline MoLu

  • Regular Poster
  • ***
  • Posts: 142
  • Liked: 0
Re: Synovial Chondromatosis 3X's
« Reply #19 on: October 28, 2006, 02:15:47 AM »
Hi Charlotte-
Good to hear from you.  I so understand how you feel that this knee is dictating our lives.  I feel the same way.  I don't want to but I am constantly reminded of it everytime I stand or walk.  I feel very fragile.  I seem to trip easy and my balance seems off sometimes too.  Luckily I'm in no pain while just sitting and can get away from it then.  Not good for my health to be only sitting around though.  I'm trying a little yoga but I thinking I'm flunking!  Is that possible?!  They probably have yoga classes for people with arthiritis and I should look into that kind of class.  I am trying to say yes to more activities than saying no whether it hurts or not.  Trying to just push thru it.  Some days are more upbeat than others.  I sure you know what I mean.

How is Uni going for you?  Able to get around and keep up?  Glad you didn't have much damage in your knee and hope you're feeling better day by day.  Keep in touch.

Martha
Synovial Chondromatosis
9/16/05 Frontal synovectomy and tumor removal
10/26/05 Posterior open knee surgery and synovectomy with tumor removal
3/8/06 Disease is back
4/26/06 Frontal arthoscopic synovectomy and posterior open knee synovectomy
6/23/06 Disease is back
7/24/07 Synvisc
10/23/08 TKR

Offline MoLu

  • Regular Poster
  • ***
  • Posts: 142
  • Liked: 0
Re: Synovial Chondromatosis 3X's
« Reply #20 on: December 16, 2006, 04:52:05 AM »
Hi All-
     I just wanted to post a little update.  I'm finally turning a corner I believe.  My knee is feeling stronger and I'm limping much less.  Saw the oncologist today and read my MRI.  No new growths and the old ones haven't grown anymore.  Radiologist still says the synovium is thickening but everything looks the same as my last MRI in Sept.  Still have some pain due to the OA now so asked if I could get a cortisone shot.  He thought we could give it a shot- ha ha no pun intended--so I went ahead with it.  Too soon to tell but it does feel better tonight.  If this works I could delay a TKR and I like that idea.  Unfortunately my back is starting to give me problems.  I had on and off siatica for the past 30 years but was always able to control it with over the counter pain meds.  Wouldn't that be a kicker if all along my back has been causing the numb foot and calf and we just happened to stumble onto the knee problem first.  He refered me to a spine specialist so maybe after Christmas I'll check him out.  We'll just see how it goes first.  I was hoping I'd be dr free in 2007.
     Well Happy Holidays to all!  Thanks for letting me vent and share my story thru the year.  It's been very therapeutic for me.

Martha
Synovial Chondromatosis
9/16/05 Frontal synovectomy and tumor removal
10/26/05 Posterior open knee surgery and synovectomy with tumor removal
3/8/06 Disease is back
4/26/06 Frontal arthoscopic synovectomy and posterior open knee synovectomy
6/23/06 Disease is back
7/24/07 Synvisc
10/23/08 TKR

Offline stgiles16

  • SuperKNEEgeek
  • *****
  • Posts: 2326
  • Liked: 0
    • My photo album
Re: Synovial Chondromatosis 3X's
« Reply #21 on: December 17, 2006, 05:03:40 AM »
MoLu, I sent you a personal message. Hope that you are doing well.
missy
2 ligament recons right ankle
2 arthroscopic,
5 open knee procedures
2 Plica removals
bone spur removal
2 microfractures
4 debridements
2 open LOAs all on left knee
Arthritis,both knees, ankles, shoulders, elbows, hands,spine
Fibromyalgia
Arthrofibrosis
LOA & PKR 2/15/06
RA
in pain mgmt
TKR JAN 2012

Offline smeagol

  • Forum Faithful
  • ****
  • Posts: 192
  • Liked: 0
Re: Synovial Chondromatosis 3X's
« Reply #22 on: January 25, 2007, 09:36:38 PM »
Hi Martha
Well, so gald you're feeling much better, at least the OA is something you can deal with.  Hope the cortisone shot has helped.  Such a relief to hear that theres no new growths, thats really really good news, maybe everything can be allwed to recover properly now and the last of the pain will ease and life can get back to more like normal. 
As for my knee, i still get pain going up and down stairs, but nowhere near as much.  I havent had any locking or giving way since the operation, although the muscle is still not responding quite right, it seems to delay response, meaning i have no balance or anything, but im working on it.  i still have a lot of acheing every day, but that i can deal with.  i still get a pain in the back of my knee, dont know what it is, but i need to recover from this last operation completely before pushing for more checks.  its still swollen looking and apparently will always be. 
hope all is still going well with your knee, would love to hear from you again
charlotte
About 10 years of pain, 3 arthroscopys, and still no help with my condition or my current problem.  And I'm only 20!

Offline MoLu

  • Regular Poster
  • ***
  • Posts: 142
  • Liked: 0
Re: Synovial Chondromatosis 3X's
« Reply #23 on: January 27, 2007, 05:47:04 AM »
Hello Charlotte-
Good to hear from you.  I always wonder how you are doing.  Glad to hear you have some improvement.  The stairs are still difficult for me too.  Dr's say that is the hardest to recover from.  I have stairs at work.  It's hard to do them but sometimes I feel like maybe that is helping me strengthen me knee.  Couldn't do it without the hand rails though.  Even after all these months it still hurts when I walk but I don't start limping to the end of the day.  I cannot tell the difference in pain between the OA and a SC knee.  Was feeling better and stronger after starting up some water eorobics and then I fell right on my knee on a slippery road.  Dumb luck!  Feels fragile all over again.  I curious as to what kind of follow up you have now with your dr.  I've had a MRI every 3 months since last April and in March it will be the first dr's appt without one.  Do you have any MRI with your follow ups?  I'm hoping it will be only once a year from now on.  Had that cortisone shot and it was great for only 4 days.  Bummer!  My knee is still swollen yet too.  I think your right that it probably will always be that way.  My nerve is still a problem but haven't had the courage to see another dr yet.  It's not any worse so I'm going to wait a while I think.  Don't know if that is smart or not.

How is Uni going?  Are you able to ride your horses?  Keep active that can only help it get stronger.  Keep in touch.
Martha
Synovial Chondromatosis
9/16/05 Frontal synovectomy and tumor removal
10/26/05 Posterior open knee surgery and synovectomy with tumor removal
3/8/06 Disease is back
4/26/06 Frontal arthoscopic synovectomy and posterior open knee synovectomy
6/23/06 Disease is back
7/24/07 Synvisc
10/23/08 TKR

Offline smeagol

  • Forum Faithful
  • ****
  • Posts: 192
  • Liked: 0
Re: Synovial Chondromatosis 3X's
« Reply #24 on: January 27, 2007, 10:22:23 AM »
Hi
Yeah i have to use a handrail with stairs, just dont feel steady enough without it.  im worried about slipping and going back on the recovery because its been icy here recently.  it one of those things though, somethings going to happen to aggravate it, fall on it, hit it, it always does!  I dont have a follow up with my doc, if i have more problems i fone up and go back, but i have to pay if i want an mri because they wont do one routinely.  they take x rays, but they dont show much really!  i cant get the courage up to ask about the pain i keep getting in tha back of my knee, it feels like theres loads of stuff behind the knee, and it hurts when i move it, but it feels like a big lump sort of thing.  every time ive mentioned it theyve said thye dont touch the back because it cant hurt, but it can!  i dont know, it might be something else, but it hurts.  with your nerve it might be a good idea to leave it sort of a year after the operation to see if theres any improvement, if not, and the knee itself isnt any worse then maybe they will have a look.  they dont want to take anything seriously enough if you ask me.  i bet if it was htem or their child or partner there would be everything possible done, and the uk is the worst place to be apparently, because the NHS doesnt want to spend money. 
oh well, i keep going, uni is hard, im doing about 50 hours a week to get the work done, but the things im learning are really interesting, and ill be finished in 5 months.  ive been trying to go for walks to help keep everything going, i cant really cycle, the pain is too much, but yes i have been riding, as much as i can.  i still cant run much or do many things, but i can get by for now.  Being able to speak to you about it all, someone who really understands, has made everything so mcuh easier, thank you.
charlotte
About 10 years of pain, 3 arthroscopys, and still no help with my condition or my current problem.  And I'm only 20!

Offline MoLu

  • Regular Poster
  • ***
  • Posts: 142
  • Liked: 0
Re: Synovial Chondromatosis 3X's
« Reply #25 on: April 26, 2007, 05:07:34 AM »
Hi all-
It's been a little while so I thought I'd update though nothing new really to report.  It's been a year already since my last surgery.  My knee is still swollen all the time and hurts but is not any worse.  No MRI with my last OO visit just xrays and only a slight degeneration comparing them to last years.  So that is good.  My cortisone shot in Dec didn't work so now we are talking synvisc.  I'm reading up on that to decide if I should go ahead and try it.  And actually why not?  Nothing to lose at this time.  Just might buy me more time before a TKR.  Any feedback on synvisc would be appreciated.  I some new bumps I pointed out in my visit down further in my calf.  They didn't seem too concerned but I asked when I have another MRI to keep it mind so we could include my calf area too.  Don't know if this crud can spread like that.  Should have asked.  Always think of those questions after I'm home.  Had another EMG and my nerve shows within normal ranges.  Don't understand how that can be when I'm feeling so much numbness.  That hasn't gotten any better and actually my calf seems to be a little worse.  No pain though just numb.  Found out I have severe arthritis in my back also but nothing to be bothering my nerve to make my foot numb.  Am having a burning pain in both legs so they started me on Lyrica.  Worked great but couldn't take the side affects so stopped them.  I'll call back and try something else for that pain.  So actually things are ok and just sitting tight to see how the OA progresses or the SC progresses.  Wait and see.  Can't complain but oh how I love to!  Just want to stop feeling like one big knee!

Charlotte-  Hope you are recovering well and your schooling is doing well.  Will you be graduating in a couple of months?  Check in when you get a chance.
Martha
Synovial Chondromatosis
9/16/05 Frontal synovectomy and tumor removal
10/26/05 Posterior open knee surgery and synovectomy with tumor removal
3/8/06 Disease is back
4/26/06 Frontal arthoscopic synovectomy and posterior open knee synovectomy
6/23/06 Disease is back
7/24/07 Synvisc
10/23/08 TKR

Offline MoLu

  • Regular Poster
  • ***
  • Posts: 142
  • Liked: 0
Re: Synovial Chondromatosis 3X's
« Reply #26 on: September 26, 2007, 04:20:21 AM »
Hi Everybody-
     Just another little update for us SC sufferers and fellow rehabbers.  It's been almost a year and half since my last surgery and am doing much better.  The SC seems to have slowed down and hopefully maybe even ending.  I can feel one lump behind my knee that feels a little larger but only aches a little.  The OA now in the knee gives me my most trouble.  Always swollen but my knee feels much stronger due to low impact water aerobics.  That has helped my recovery from my surgeries more than anything.  The stronger I can keep my knee the better to hold off the enevitable TKR.
     I feel at this time I really want to connect with those that are discouraged with rehab.  Never in my wildest dreams did I ever think it would take this long to recover from a knee surgery.  I just want to encourage all of you to keep at and it does get better.  This isn't just a physical ailment to rehab but a mental rehab is necessary too.  It has taken me all this time to finally start to be more like my old self and not just a sick person with a bad knee.  I know so many of you feel this way too after having multiple surgeries.  I expected way too much from this whole process.  Thought I'd have surgery- take out the diisease-heal-and be back to normal when the incision healed.  Totaly underestimated the emotional process of healing right along with the physical healing.  Anyway what I'm trying to say it does get better.  Hang tough and you will get better.
Martha
Synovial Chondromatosis
9/16/05 Frontal synovectomy and tumor removal
10/26/05 Posterior open knee surgery and synovectomy with tumor removal
3/8/06 Disease is back
4/26/06 Frontal arthoscopic synovectomy and posterior open knee synovectomy
6/23/06 Disease is back
7/24/07 Synvisc
10/23/08 TKR

Offline MoLu

  • Regular Poster
  • ***
  • Posts: 142
  • Liked: 0
Re: Synovial Chondromatosis 3X's
« Reply #27 on: October 18, 2008, 03:53:17 AM »
Hi All-
I can't believe it's been a year ago since my last update.  I was sounding pretty positive on my last apdate and that is about the time I turned a corner and was starting to feel better.  I kept up with the  water aerobics and still feel that has been the biggest help to me in my recovery.  But now the time has come to have a TKR.  I was able to buy another year before going ahead with it but I've run out of time now.  My knee has been a constant pain from day one but I am trying to be positive that this will work.  The disease is not as aggressive as it was but last MRI shows a process of thickening is still going on.  I can't tell the difference between OA and the SC at this time.  Pain is Pain.  I'll be very curious to hear what the dr finds in there when he operates.  My tipping point was a tumble that really aggravated my knee and has forced me to make this decision.  At leastI feel confident now that it is the right decision.  I have been waffling for years on this and the fall made it for me.  I'm very hopefull that the surgery will remove most of the disease but if the process is still going on it will come back even with a TKR.  That's the worst part of SC.  How do you stop this?  It's like some monster wreaking havoc on my knee!  I'll call it the "Creeping Crud"!  So anyways I'll let you know what the old dr finds in there and how successful the surgery is. 
Martha
Synovial Chondromatosis
9/16/05 Frontal synovectomy and tumor removal
10/26/05 Posterior open knee surgery and synovectomy with tumor removal
3/8/06 Disease is back
4/26/06 Frontal arthoscopic synovectomy and posterior open knee synovectomy
6/23/06 Disease is back
7/24/07 Synvisc
10/23/08 TKR

Offline MoLu

  • Regular Poster
  • ***
  • Posts: 142
  • Liked: 0
Re: Synovial Chondromatosis 3X's
« Reply #28 on: November 20, 2008, 04:06:52 AM »
Well there is light at the end of the tunnel!  I'm approaching the one month mark on having my TKR.  Just thought I'd let you know what they found in the old knee when they opened it up.  Here's the good news - not much!  He found very little evidence of SC so maybe the old monster has been beaten back.  The pain I was experiencing was from OA and several loose chondral pieces but not from SC.  He feels I shouldn't be bothered by it ever again.  Awesome!
This TKR has been no picnic and have had trouble finding the right meds for pain control.  ROM is slowly coming back.  Flexion has been my biggest struggle.  I"m only up to 95 but it is increasing each week so it will come back with alot of hard work.  It's hard to work thru pain at PT when you don't have control of your pain with meds.
So maybe I'll check in next year and let you know if I"m still SC free.  If I am I hope this gives hope to other SC sufferers that this disease can be beaten.
Take care everybody.  I wish you all well.
Martha
Synovial Chondromatosis
9/16/05 Frontal synovectomy and tumor removal
10/26/05 Posterior open knee surgery and synovectomy with tumor removal
3/8/06 Disease is back
4/26/06 Frontal arthoscopic synovectomy and posterior open knee synovectomy
6/23/06 Disease is back
7/24/07 Synvisc
10/23/08 TKR

Offline drewdrewdrew

  • MICROgeek (<20 posts)
  • *
  • Posts: 2
  • Liked: 0
  • Alex Smith
Re: Synovial Chondromatosis 3X's
« Reply #29 on: April 22, 2016, 03:35:04 AM »
Hi MoLu & smeagol I know its been a number of years since you've posted on this topic.. I was wondering how you're going?

I was diagnosed with SC about a year ago, since then have had an open & arthroscopic surgery on my knee. Lesions have returned and one is larger.. pain isn't as bad as you girls are experiencing..

Would like to share stories.. Thanks















support