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Author Topic: Synovial Chondromatosis 3X's  (Read 21827 times)

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Offline MoLu

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Synovial Chondromatosis 3X's
« on: June 24, 2006, 07:37:54 PM »
Hi All-
Well it's back again!  In less than 2 months my disease of Synovial Chondromatosis has returned for the 3rd time.  I can't describe how horrible I feel.  I'm going to keep posting my story for those other suffers who will be looking for info on this disease.  Helps me deal with this also.  It's been a great time line too so I can see how I felt thru the months and see the signs of it's return looking back.

For those of you who are wondering what this disease is I'll give a brief description.  The synovium in my knee for unknown reasons has decided to react inappropriately by sending out cartliginous cells.  These break off from the synovium and are nurished by the synovium liquid and grow.  They spread throughout the knee joint and also can break out into the tendons and bursae.  There is no known cure.  And the only management of this disease seems to be surgery for removal of the loose bodies and a complete synovectomy.

After my last surgery 4-26-06 my scars healed well but I continued to have more pain than previously in my PT sessions.  Dr's thought it was just a strength issue and to give it more time at my 1 mo checkup.  So I continued with PT and some pain did lessen under the knee cap but then that same feeling of fullness began along with my knee popping.  I just knew it was back.  Then my nerve in my calf started a very pronounced tingling that I hadn't had as of yet.  My tibial nerve has been compromised thru all of this and has caused numbness in the calf and foot from the very beginning.  Poor thing never gets a chance to heal before its pushed and stretched again.  Got my MRI done yesterday and asked for the results right away and they confirmed that it  is was back.  I'll be meeting with one OS next week to go over the results and the oncologist on the 21st.  So what will be the next step.  More surgery I'm sure but I don't know what other options will be offered.  TKR?  Radiation? Just surgery?  I mean how many times can this keep happening?  When will this end?  Anybody have any ideas?  I'm all ears.

Right now I'm feeling pretty low as you can imagine.  I worry about my job.  I worry about my husband's job and his absences to take care of me.  I worry about cancer.  I worry about amputation.  I worry about 4 surgeries a year.  I worry about my finances.  You name it I'm worrying now.  Thanks again for lettimg me vent.  I so need this.
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

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Re: Synovial Chondromatosis 3X's
« Reply #1 on: June 26, 2006, 01:01:01 PM »
Keep going, I know its hard, but keep at it.  there must be a way to help stop it, keep on at the doctors and they will find a way.  if more people become aware of the disease and how debilitating it is, then maybe someone will try to find out more about it and help us.
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

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Re: Synovial Chondromatosis 3X's
« Reply #2 on: July 10, 2006, 03:17:17 AM »
Charlotte-
Any news on you operation?  Maybe you've already had it done and are recuperating.  Let me know what's going on ok?

I had a visit with my OS last week and didn't get much info I'm afraid.  She would only comment on the front of the knee where she did her operation and there was no recurrence in the front.  So I didn't get much info at all.  She hinted that possibly the loose bodies reported in the MRI in the posterior were pieces left from the last operation.  Some pieces might have been to risky to remove.  So maybe I don't have a recurrence like the MRI states.  I don't know what to think at this time.  Don't you think maybe someone should have told me that they were leaving in pieces?  My knee still feels horrible but the OS said she still thinks it's a strenght issue.  PT has stepped it up on the strength exercises so I hope she is right and I'll feel better soon.  I meet with the oncologist in a couple of weeks and hope to get some answers.  All this worrying and maybe it's not a recurrence after all.  I'll let you know what they say.
Keep in touch on your surgery and let me know how it goes.

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

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Re: Synovial Chondromatosis 3X's
« Reply #3 on: July 10, 2006, 07:12:54 PM »
no news yet on my op, should have been having it now, but no date or anything yet.  im getting very frustrated.  its so painful now.

hopefully the few pieces are just ones they left for whatever reason.  a few in the back dont seem to hurt too much, ive had them for ages, and its the front that hurts, only had a little pain in the back in the last couple of months, pieces have been there for years.  i hope the pt helps strengthen the leg, and help it heal.  its going o take a lot of recovering.  i dont think after what its been through you will have any idea how much of an improvement there is for about a year.  worrying will just make you feel worse, so keep a positive attitude, hard as it is to do, and get that knee healed.  keep me updated on how it goes with the oncologist, im always here to listen, whatever happens.
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

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Re: Synovial Chondromatosis 3X's
« Reply #4 on: July 23, 2006, 05:22:59 AM »
Hi Charlotte-
Any news yet?  What's taking them so long?  Hope to hear from you that your surgery is done and you are recovering.

Well had my visit with the oncologist.  No he did not leave any pieces intentionately.  He thinks possibly some small pieces might have been missed and they are growing.  Right now he is not sure if it is a recurrence or persistence from the last recurrence.  Anyway he does not want to go back in unless absolutely necessary.  The problem is the nerve.  I've been having more charlie horses and twitching and muscle rolling because of the tumors.  Of course two are located right where my nerve and blood vessels are.  He thinks there might be some scarring on the nerve causing the numbness.  Anyway if he goes back in he'll have a plastic surgeon with him to work on the nerve.  Right now he wants me to go back to the OS with the MRI and discuss this with her.  The two will talk and decide what they feel is best for me.  So next week I'll be doing that.  What a mess.  Not sure where I go from here.  And what is weird is that the pain I'm feeling is not located where the tumors are.  The front of my knee hurts the most and the MRI showed nothing there.  Go figure!

I did ask him some more questions about the disease.  I asked if he felt there were 3 levels of this disease and he agreed.  1st one is a complete synovectomy and it never comes back.  2nd is a recurrence every few years and a synovectomy to get cleaned out and 3rd is the very aggressive one where it just keeps coming back.  He's not sure yet where I fit in.  Time will tell.  He also agrees that this disease can burn itself out.  It can stop just as suddenly as it starts since they don't know why it starts in the first place.

If anyone out there has any stories with nerve damage and repairs please join in the discussion.  I'll have to get the name of the procedure he is thinking about.  I didn't get it written down and I don't remember the name.  I know he said they will cut the nerve and a plastic surgeon would do it.  Neuro... something.  I'll get the name when I meet with the OS.

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

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Re: Synovial Chondromatosis 3X's
« Reply #5 on: July 27, 2006, 10:53:03 AM »
Hi Martha,
I foned the hospital the other day to find out why on earth it was taking so long, they said the docs on holiday til september so it wont be before then, ive waited nearly 5 months already!  its so painful, im off work again today because i cant walk properly.  i cant drive anywhere, cant do anything. 

At least theyre trying to fix your knee, they dont seem to want to look at mine.  im getting pain in more places every day.  i get it in the very middle, and in the joint on the inside of my knee, at the back and right at the front, and the latest pain is where the kneecap sits at the top when you straighten your leg, that one has floored me a couple of times.  but from the last few clear x rays i have pieces just about everywhere they can fit.  this is the 3rd op, had one cleanout, one clean out and partial synovectomy, so i think im with you on the annoying reccurance one.  i hope it stops suddenly soon, im literally going mad with all this pain, had it for about 10 years, and no sign of it going any time soon as it still seems to be getting worse.  the day to day pain is now too much to cope with and the bad pain is so bad im in tears. 

now my mum is having a go at me all the time because i cant do anything. she told me to go cycle up and do the horses, yes, i can do that on a bad day with my knee cant i, NO!  she just doesnt understand how muhc it hurts.
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

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Re: Synovial Chondromatosis 3X's
« Reply #6 on: July 28, 2006, 04:49:33 AM »
Charlotte-
I'm so sorry to hear of your constant pain.  I really find it hard to understand this horrible wait for an operation that you need so badly.  There is something so wrong with your health system that let's a person suffer so.  I know how it feels to have this disease so take over your life.  My daughter doesn't want me to dwell anymore on it but it is so hard to ignore when it affects your every movement.  My husband has been very patient but he's getting sick of it too.  It affects the whole family when you are down and out for so long.  I'm sorry to hear that your mom isn't more supportive you can use some support that's for sure.

I had my visit with my os today.  She and the oncologist have talked and feel right now I just need to focus on getting my knee stronger to end the pain in the front of the knee.  She didn't really want to say anymore about the nerve problem because it is not in her area to operate.  She cannot access the tumors thru arthoscopy so back to the oncologist for further instructions.  Back and forth.  I told her that too.  They are not eager to go back in so soon after all these operations and want the knee to heal more.  I just don't want my nerve to be damaged anymore than it is.  She is suggesting I see the plastic surgeon to discuss the nerve issue.  I want one surgeon that does it all.  I came home and was ready to just call it quits and said no more dr visits!  Then I sit here and my leg starts hurting and the nerves start buzzing and I just don't know what to do.  Maybe a second opinion would help me make some decision or would it just muddy the water more?  I'm pretty discouraged too today.  What a sad pair we are! 

Well 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

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Re: Synovial Chondromatosis 3X's
« Reply #7 on: July 28, 2006, 10:36:39 AM »
this stupid NHS is useless, i may as well pay for it all but it would cost me thousands of pounds and as a student i just dont have that kind of money.  Everyone keeps telling me its not that bad and come on do this do that, but you just cant and then it gets you down even more.  im getting to the point where i think im going to quit my summer job and live in york, at least i wont have mum yelling at me because ive taken painkillers again.  its the unrelenting pain that gets me. 

I think your doc is right, rest and recovery first.  i understand why they wouldnt want to do too much more too soon, i had to wait 2 years between operations because thye wouldnt even consider it sooner.  i would rather see a varietly of people and they all do well on their bit than see one that will just have a go at it all but not be as good.  i understand about the nerve damage, but hey, at least theyre trying to help it, and in a few years they should have the stem cell knowledge to rebuild it if they cant od anything.  keep at it, do the physio and get it stronger so they can go back in again and fix that nerve.  im so down today.  it hurt too much so itook painkillers, fell asleep and lost all morning, now i just feel very spaced out, and theres probably hundreds of spelling mistakes in this, im sorry.  i just cant take it any more, i dont know what i can do, its too much pain.
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

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Re: Synovial Chondromatosis 3X's
« Reply #8 on: August 05, 2006, 05:42:59 AM »
Hi Charlotte-
You sound so desperate and I'm so sorry.  I wish there was something I could do for you.  I feel your pain and your frustration.  This will be a long month for you to wait but I pray they call soon with a date.  If they could only give you a date to shoot at you'd feel better mentally at least.  Doesn't help the real pain I know.  I hope some days you are able to get some relief and hang in there.

I finally feel some improvement this past week with pain.  I think PT is finally beginning to pay off.  It's not totally gone but it has lessend considerably.  Still have numbness down the leg and into the foot.  That's my biggest worry presently.  I don't have to see dr's for the whole month of Aug so that's cool.  Did have PT feel a lump towards the top of my knee.  Sometimes it feels like my knee cap is catching on something.  He feels it too and doesn't have a clue what it is.  Not sure what to make of that.  I could feel the bumps before my last MRI and the dr's didn't say there was any problem in the front of the knee only the back.  Looks like a just wait any see at this time.

I've put my life on hold for the past year and finally it feels better so I need to get moving again.  I plan I going swimming tomorrow and spend some time at the beach.  I want to live again.

Let me know how you are doing.  I'm always here to listen at least.

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

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Re: Synovial Chondromatosis 3X's
« Reply #9 on: August 26, 2006, 08:01:30 PM »
hi
wow good news that theres improvement!  thats so good, keep going with the PT and everything, you must be so relieved to have some hope after the last few months.  it really gets you down when they just dont get any improvement. 
im still waiting for news on the op.  it should be september but if i havnt heard now i dont hold out much hope of that, then im at uni in october so i cant have it.  i cant miss any more uni.  im at the end of my tether, i just cant believe theyre delaying it this much, im in agony.  but theres nothing i can do.  no date, nothing to say how long i might have to wait for this, and im just going to ruin my degree.
i feel like i should just give up now.
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

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Re: Synovial Chondromatosis 3X's
« Reply #10 on: August 27, 2006, 02:59:33 AM »
Hi Charlotte-
It's good to hear from you.  I've been wondering how you are doing.  Don't give up on that Sept date with the dr for an operation.  The last you posted I believe you are expecting only a arthoscopy procedure right?  I bet you could get enough recovery time in Sept before your uni classes start up.  The recovery rate is much faster with the arthoscopy.  I was off crutches in a week.  And even if you needed to use crutches for a while it would be well worth it.  An open procedure would be longer but that might even be possible.  You probably would be off crutches in 3 weeks or so.  Unfortunately you know all about crutches so you could adapt and you are young.  I really think you might be able to pull it off.  Just depends when in Sept they schedule you.  Wouldn't it be great to get this taken care?  I so hope it can work out for you.  You deserve it!

My last post I was feeling much more determined and optomistic.  Things got a little better there for awhile but the past week the pain seems to be coming back.  It's so discouraging.  I'm scheduled for another MRI on 9-11 so I hope to see  just what is going on.  If only the three tumors are there and nothing new that might mean it's over or at least has slowed down.  If there are more than the process is still going on.  If there is nothing new I'd love to have one more operation and get my knee all cleaned out and maybe I could really start to heal properly.  Right now it still feels very messed up.  I'm continuing with PT until the 12th when I see the OS first.  If I have another surgery scheduled I think I'll just do exercises at home until that time.  My insurance won't pay for many more visits and I might need to save them up for a future procedure.

Well keep on fighting and think of your health for the long run too.  I'll let you know about my MRI results.
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

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Re: Synovial Chondromatosis 3X's
« Reply #11 on: September 22, 2006, 06:27:42 PM »
Just letting you know my operation is tomorrow.  Ill tell you how it goes after and through recovery etc.  Im more than a little nervous.  I just hope he can help reduce the pain, even slightly.  Ive got to recover asap ready for my uni again. 
Any news with your knee?  any improvement on the pain and numbness?
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

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Re: Synovial Chondromatosis 3X's
« Reply #12 on: September 23, 2006, 05:51:49 AM »
Charlotte-
Yeah! Sooooooo glad to hear from you and to hear you are finally getting that operation.  I pray it is successful and you have many years without any pain in that bum knee.  It can only get better.  You've been thru the wringer waiting so long and now it's here finally. 

I had another MRI on the 11th had some good news.  No new growths just the ones left behind but more arthritis setting in and synovium still thickening.  Unfortunately my knee is still painful and I limp all day.  I'm doing PT at home now because it just wasn't getting any better.  Knee still swollen and pain when walking.  My oncologist sent me home with brochures on a knee replacement and I am scheduled already for Nov 1st.  I have very mixed emotions about it.  If it will end this pain I'll gladly go thru another operation.  He thinks he will be able to reach thru the knee and grab a big tumor in the back.  The rest will just have to stay because he won't have any access to them.  I'm not 100% sure about this yet.  So much of my pain is below the knee now so not sure a new knee will do the trick.  At least taking out the diseased synovium will be a good thing I hope.  I need to go back and do some more talking with him to make sure this is the right thing to do.  Probably should get a second opinion too but who do you go to when most doctors have never dealt with it before.  My husband really wants me to do it.  He's a mechanic and thinks of it in those terms.  Like fixing a machine so just do it.  He doesn't have to go thru the operation and recovery though.  He's sick of me limping around and not wanting to do much.  I can understand.  I sure thought this would be over when I went to the oncologist.  Thought he'd go in there take out those tumors and I'd be back in business.  I've met another lady who has had one operation and is doing well.  I sure hope a new knee does the trick.

Well best of luck.  I'll be think of you.
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

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Re: Synovial Chondromatosis 3X's
« Reply #13 on: September 25, 2006, 05:35:28 PM »
wow a new knee, that should fix it properly.  i was told it would fix me, but im too young to have it.  i wish you all the best with that, i really hope its the end to all your worries.  my op went ok, i was rather ill after the op, but im a bit better now.  they went in and took loads of pieces out and shaved away every bit of synovium he could get to.  i have a knee the size of a football and it is extremely painful.  i cant walk even with crutches because my knee fells like its going to explode.  its only a couple of days since the op so im not too worried, im just being patient and letting it recover slowly.  the whole of my thigh feels bruised too so i think he did a lot of poking around in there, really hoping he got everything and the pain will ease. 
ill keep you updated on how it goes and tell me how its going with yours.
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

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Re: Synovial Chondromatosis 3X's
« Reply #14 on: September 26, 2006, 01:59:36 AM »
Charlotte-
Hurray!  I know you'll do just fine!  Give me all the details.  Was it a front and back surgery?  Open knee or arthoscopic?  Are you in a brace or just bandages?  I was pretty ill too after the surgery with the anasethic.  Couldn't tolerate the narcotics either so when I got home I just lived on Ibprofen.  Dr's were pretty shocked by I did ok with it.  Better than Blaaaaaah!  Will you be doing PT right away?  It's so important to get moving again or you will really stiffen up.  Don't forget the ice too.  I think I just slept the first two weeks and then there was a big improvement but that was with the open knee surgery.  If you just had artho you'll bounce back even quicker.

I meet with the oncologist again tomorrow to go over more questions.  I just need to feel very confident before this surgery.  Told them at work today and it didn't go over as bad as I thought it would.  Is that a good sign or bad?

More later and the best of luck to you with your recovery.
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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

Offline MoLu

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Re: Synovial Chondromatosis 3X's
« Reply #30 on: August 28, 2017, 05:45:19 PM »
Hello Drew-
I haven't been on this site in a very long while.  You will find more discussion on SC on Facebook.  I hope to see you there?! 
Still having pain in the knee along with pain in the hip and back.  It continues to be a struggle but notso horrible.  ROM after TKR remains very good.  I still do have a large chunk of SC behind my knee that is too dangerous to get at.  Could do more damage than good OO feels.  Not sure if that is what irritates the knee of if the pain is really being generated from my back.  I haven't been checked on my knee in 4 yrs but I am again seeing my TKR dr and I think the next step might be a MRI to see if anything is happening in the knee.  The knee is hard to get a clear image on after a TKR.  The metal components tend to scatter the image.  So I do understand your frustration when it comes back after surgery.  Come join us on FB if you haven't already.
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