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Author Topic: Synovial Chondromatosis 3X's  (Read 21386 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