Banner - Hide this banner





Author Topic: Undiagnosed chronic synovitis condition in right knee  (Read 16180 times)

0 Members and 1 Guest are viewing this topic.

Offline rhall97

  • MICROgeek (<20 posts)
  • *
  • Posts: 7
  • Liked: 0
Undiagnosed chronic synovitis condition in right knee
« on: December 14, 2009, 07:16:11 PM »
Hello, all.  I am new to this board.  Am a healthy 35 year old male who has had a swollen knee for the past few years.  I have no other joint problems, only my right knee.  Some days it will almost be normal, while others it can be very swollen and difficult to walk.  After trying to deal with it on my own for 2 years, I scheduled several visits to the primary physician, who then referred me to an orthopaedist and a rheumatologist.  The Ortho did an MRI, which showed that the synovial fluid was thickened, as well as a baker's cyst and some other particles that shouldn't be there.  He gave me a steroid shot and took some of the fluid out of the knee to look at it.  The steroid shot started working immediately, and my knee was good for about 6 months!  I knew it probably would not last, but it was great to be able to exercise for a while.  The fluid did not show anything "abnormal".  I went to see the Rheumatologist next and he could not really do anything since I had the steroid shot and it wasn't swollen.  He did draw blood for a series of tests for RA, Lupus, etc, and those tests all came back normal.  He also gave me a prescrption for 75mg of Voltaren/Diclofenac per day, which works a little but not that great.

Recently, I went back to the Rheumatologist after my knee started getting bad again.  He drew some fluid and looked at it under a microscope to rule out Gout by looking for crystals.  He said he didn't see any crystals although his PA said she might have seen one.  So, he ruled out Gout.  Then, he left the room for a while and came back and sat down with a serious expression.  He said that he didn't know what was causing this, but was concerned it could be RA.  And, if I didn't take care of this knee that it would be in a crippled state eventually.  He said he wanted to put me on a drug called Methotrexate.  He explained that this drug had been around for 80 years and it was very safe and effective.  He explained that the drug would be given every week through shot form, and that I would need to take a test every 6 weeks.  He said the side effects included mouth sores, nausea, birth defects, and that it was hard on your liver.  He said I needed to pledge not to drink alcohol, also.  I asked him when he wanted me to start this, and he said "why not now".  Well, I was really apprehensive about starting a drug that I knew nothing about, especially one that sounded so hard-core.  So, I left the office without starting the treatment.

Once I got home and talked to my wife, and researched Methtrexate, I am now really thinking that the Doctor may have jumped ahead to a more serious treatment than I may need.  For one, the RA website has 7 characteristics for diagnosing RA, of which at least 4 should be present to diagnose RA.  I have zero of 7.  Secondly, I would think there are some other treatments that we could try before heading down the path of Methotrexate. 

So, then I went back to my Primary Care Physician and asked him to send me to another Orthopedic Surgeon, who is a friend of a friend.  He looked at the knee and the MRI results, and took out some more fluid (15 cc's) and injected another steroid shot (only my second one during the year).  He said the fluid definitely looked like something which would be related to autoimmune disorders, but wasn't sure.  He wants to do a scope to remove the foreign bodies, obtain a biopsy and smooth out any irregular surfaces.  I am scheduling that for early 2010. 

After trying to find out what the root of the problem with my knee is through internet research, I did find something interesting ... Synovial Chondromatosis.  Apparently, I fit the "typical patient" pretty well (middle-aged, male, chronic synovitis, swollen knee, little to moderate pain, otherwise healthy, tested negative for lupus, arthritis, etc.).  I am going to suggest this to my Ortho next time I see him because it is apparently rare and maybe this is not something most doctors even see.  The MRI doesn't show many loose bodies, but it does state "There are a few small foci of decreased T2 signal in the thickened synovium which could represent rice bodies. There is a focus of decreased T2 and increased proton-density signal along the anterior joint line most suspicious for a small loose body."  Could those bodies be the tissues that are evident in Synovial Chondromatosis patients?  To me, this makes more sense than Rheumatoid Arthritis since I don't have any other symptoms for RA. 

I am new to all of this since no one in my family has arthritis, and no one in my family has ever had any issues like this.  I guess I would like to get other people's views who are more experienced with this stuff.  What are your thoughts on what I should do?

Ryan H

Offline TwoBadKneesUSA

  • SuperKNEEgeek
  • *****
  • *
  • Posts: 3340
  • Liked: 0
  • No matter how bad it is, my dog still loves me!
Re: Undiagnosed chronic synovitis condition in right knee
« Reply #1 on: December 14, 2009, 09:30:41 PM »
Ryan,

Welcome to the board.  I would first like to say that you were right in hightailing it out of the Rheumatologist's office.  Yikes!  I think it is a good idea to discuss what you have researched with the OS.  I hope they can figure out what is going on for you.  If I remember correctly, I think you can have up to 3 cortizone shots a year.  Ask your doc what the limit is though.  I just wish they had worked for me.  Glad they are helping you.

Milly
'83 lt knee scope
'88 lt knee LR
'89 rt knee LR (6 mos. after left)
'05 rt knee scope (clean up)
7/5/07 - scope, LR left, right clean
3/19/08 - LR failed, Supartz failed
http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=47974.0
8/21/08 - new OS apt
8/5/09 - TTT, LR, PFJR sched.

Offline gillyb

  • MINIgeek (20-50 posts)
  • **
  • Posts: 23
  • Liked: 0
Re: Undiagnosed chronic synovitis condition in right knee
« Reply #2 on: December 14, 2009, 11:21:07 PM »
Hi

There is a forum for Synovial Chondromatosis    -   www.synovial-chondromatosis.com/forum.html
There is a lot of information there. But beware, remember (like this site) sometimes it is the worse case senarios that people write about. Those with good outcomes often don't write about it so you need take everything with a pinch of salt!

My SC was diagnosed from the MRI but luckily is outside the joint and according to my OS is insignificant. Chronic synovitis was diagnosed by biopsy during an arthroscopy for a torn meniscus,plica excision and joint surfaces debridement. It settled down following a steroid injection. I am still working on improving knee strength 5 months post op.

Good luck with getting the correct diagnoses - make sure you see a knee specialist as SC is quite rare.

gillyb


Offline MoLu

  • Regular Poster
  • ***
  • Posts: 142
  • Liked: 0
Re: Undiagnosed chronic synovitis condition in right knee
« Reply #3 on: December 15, 2009, 03:58:40 AM »
Hi Ryan-
I have SC and it does sound like you might have SC also.  I believe the only definitive way to know is thru a biopsy.  I have never known anyone to have a confirmation by testing of the synovial fluid alone.   An MRI does tell a lot but it is not definitive either.  There are other synovial diseases also such as PVNS and possibly just chronic synovitis so I would think an arthroscopy of the knee would be in order.  As Gilly mentioned some cases are worse than others.  It can be a chronic condition or it can be cured by one clean out.  Not much is know about this disease.  They don't know why it happens nor do they know why it stops.  Luck of the draw.  Here's hoping if you have SC that you are a lucky one.  Let us know how it goes.
Molu
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 rhall97

  • MICROgeek (<20 posts)
  • *
  • Posts: 7
  • Liked: 0
Re: Undiagnosed chronic synovitis condition in right knee
« Reply #4 on: December 15, 2009, 11:18:41 PM »
After doing a little more research, I think it may very well be PVNS, so it's interesting that you mentioned that, Molu.  During aspiration of the synovial fluid, it was tinged with blood, and apparently, that is a telltale sign of PVNS vs. some of the other synovial conditions.  I also meet almost every one of the typical PVNS symptoms of it to a tee.  Some of these are so similar in symptoms, though!

I picked up my actual MRI images today, from back in February of 2009 when they did the MRI.  On some of those images, you can clearly see growths in the suprapatellar pouch/effusion.  Obviously, I am no Radiologist, but it seems evident to me....they look like little villi.  I have scheduled an appointment with the Ortho's PA on this Thurs to drop off the MRI and see if they have even heard of PVNS.  I read that it is a very, very rare condition.

Regardless, the recommended treatment for SC and PVNS are the same, so it looks like the surgery in early 2010 to scope the knee, and do a synectomy/biopsy will tell us the final answer of this neverending saga. 

Ryan

Offline MoLu

  • Regular Poster
  • ***
  • Posts: 142
  • Liked: 0
Re: Undiagnosed chronic synovitis condition in right knee
« Reply #5 on: December 16, 2009, 03:38:38 AM »
Hi Ryan-
Yes it does sound more like PVNS with the red tinged fluid  Tell tale sign of PVNS.  There is a new group of people on Facebook with PVNS that might be a good resource for you if this is what they find.  I believe it is called PVNS is Pants.  They use to have a very active site on the Delphi forums but have seemed to migrated more to Facebook now.  But on the Delphi Forums you will find a lot of good history to read in your research.

I actually was first dx'd just thru the MRI with PVNS but going in to do the biopsy they realized right away they had SC.  Both rare but I find more PVNS people than I do SC people.  I continue to read up on PVNS in my search for answers because of the similariaties as you mentioned.  I figure if PVNS finds a cure or helpful strategy it just might help us SCers.  It was thru the PVNS forums that I learned how important it is to go to an Orhopedic Oncologist for treatment.  Due to the rarity of the diseases very few doctors have had adequate experience in treating the diseases.  So most of these cases get referred to an OO.  I suggest that also.  If you are in the states look at your state's university hospitals for an OO.  Larger cities also but there are not too many of them.  They treat benign tumors right along with cancerous tumors.  PVNS can be very aggressive so do get lined up with a highly skilled doctor.

Good luck to you.
Molu
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 rhall97

  • MICROgeek (<20 posts)
  • *
  • Posts: 7
  • Liked: 0
Re: Undiagnosed chronic synovitis condition in right knee
« Reply #6 on: December 16, 2009, 03:04:24 PM »
Molu, thanks for the facebook suggestion. I found their page and posted there for some help.  This condition seems worse than SC!  At any rate, your suggestion for an oncologist is a good one.  I am trying to find a PVNS expert in my area (Atlanta, GA US), but there may not even be one. 

Good luck with your SC!

Ryan

Offline crankerchick

  • SuperKNEEgeek
  • *****
  • *
  • Posts: 1863
  • Liked: 25
  • How 'bout them Cowboys!
    • Derotation osteotomy & TTT Post-op diary
Re: Undiagnosed chronic synovitis condition in right knee
« Reply #7 on: December 16, 2009, 04:50:29 PM »
Sounds like the internet researching is helping you so much and kudos for holding on the methotrexate treatment until you could research it further. I tend to think about my doctor visits these days just like a trip to a department or electronics store: no impulse decisions!

I just wanted to add that one thing you might want to really think about is asking your OS about his/her experience with synovitis and the different conditions mentioned here before your scope. Through my battle with knees if there is one thing I've learned, it's that there are different doctors that have different experience levels with the different parts of the knee. It seems better to find the doctor now that has an interest and experience with the conditions you described before having the scope, that way that doctor can be the one to perform your scope and be involved in your treatment from the start. That just seems better than having the scope, hopefully learning what the problem is, and then still possibly wanting/needing to find a different doctor to treat it.

There are a lot of people that end up here after having the wrong person treating and operating on them and its only after the fact that they find the right person to treat their problem, but at that point they've already seen the gamut of doctors and had the gamut of procedures performed.
Mar '07 - plica excision
Oct '09 - femoral + tibial derotational osteotomy & TTT
Aug '10 - hardware removal
"You control your leg. Don't let it control you." -Smart trainer
"Get your a$$ in gear and go for it! Nothing will happen until you make it!" -Smart doctor

Offline rhall97

  • MICROgeek (<20 posts)
  • *
  • Posts: 7
  • Liked: 0
Re: Undiagnosed chronic synovitis condition in right knee
« Reply #8 on: December 16, 2009, 05:31:36 PM »
CrankerChick....I totally agree with you.  It kept me up last night thinking about it.  I have posted on the PVNS facebook page to see if anyone knows of an OS with experience for SC, PVNS, etc.  If anyone else knows of doctors in the Atlanta, GA area, that would be very helpful.  I have some time before I want to have surgery, so hopefully a contact shakes out from these message boards.

Offline TwoBadKneesUSA

  • SuperKNEEgeek
  • *****
  • *
  • Posts: 3340
  • Liked: 0
  • No matter how bad it is, my dog still loves me!
Re: Undiagnosed chronic synovitis condition in right knee
« Reply #9 on: December 17, 2009, 12:32:59 AM »
Good luck in finding a doc that has some experience with what you have going on.  I hope you can get some good treatment soon.  Best wishes.
'83 lt knee scope
'88 lt knee LR
'89 rt knee LR (6 mos. after left)
'05 rt knee scope (clean up)
7/5/07 - scope, LR left, right clean
3/19/08 - LR failed, Supartz failed
http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=47974.0
8/21/08 - new OS apt
8/5/09 - TTT, LR, PFJR sched.

Offline rhall97

  • MICROgeek (<20 posts)
  • *
  • Posts: 7
  • Liked: 0
Re: Undiagnosed chronic synovitis condition in right knee
« Reply #10 on: December 18, 2009, 02:43:26 PM »
I saw the PA yesterday and she is bringing the MRIs to the OS.  She said that the OS has worked on 3 PVNS cases in the past year.  So, at least I know that he is somewhat experienced with it.  The PA couldn't really tell from the MRIs if it was PVNS so we will see what the doctor says. 

I am beginning to think that maybe PVNS is more prevalent than the experts currently think it is.

Offline rhall97

  • MICROgeek (<20 posts)
  • *
  • Posts: 7
  • Liked: 0
Re: Undiagnosed chronic synovitis condition in right knee
« Reply #11 on: December 23, 2009, 04:16:17 PM »
So, the PA called me this week and said that the OS had looked at the MRI images.  He has "suspicion" that I do have PVNS but won't be sure until he does the scope and takes out the synovium.  He said that he wasn't surprised that the Radiologist missed this possibility since it is a rare condition and mistaken for RA a lot.

Offline TwoBadKneesUSA

  • SuperKNEEgeek
  • *****
  • *
  • Posts: 3340
  • Liked: 0
  • No matter how bad it is, my dog still loves me!
Re: Undiagnosed chronic synovitis condition in right knee
« Reply #12 on: December 23, 2009, 05:23:57 PM »
Sounds like the OS is willing to entertian the idea and want's a closer look at everything.  I certainly hope he can figure out what to do for you once he sees what's going on.
'83 lt knee scope
'88 lt knee LR
'89 rt knee LR (6 mos. after left)
'05 rt knee scope (clean up)
7/5/07 - scope, LR left, right clean
3/19/08 - LR failed, Supartz failed
http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=47974.0
8/21/08 - new OS apt
8/5/09 - TTT, LR, PFJR sched.

Offline Henry103

  • MICROgeek (<20 posts)
  • *
  • Posts: 1
  • Liked: 0
Re: Undiagnosed chronic synovitis condition in right knee
« Reply #13 on: April 02, 2013, 03:22:11 PM »
Hi RHall97
I realise that you haven't posted for several years; but I am interested in your outcome. I have similar problems with just my right knee affected; prescribed Methotrexate and still swelling. I am now considering the Synovectomy route.
Regards
Andrew

Offline rhall97

  • MICROgeek (<20 posts)
  • *
  • Posts: 7
  • Liked: 0
Re: Undiagnosed chronic synovitis condition in right knee
« Reply #14 on: April 02, 2013, 07:30:43 PM »
Hi, so my update since 2010 -- had the surgery to scope out my knee in 2010, as well as repair a torn meniscus.  I was hoping this would cause the chronic synovial swelling to go away.  It did go away but only for about 6 months.  The knee is slightly better now but still always swollen.  I have to wear knee brace on work trips or places where I will be on my feet a lot.  That helps keep it from getting too swollen where I have trouble bending it.  I have also found that SAM-E supplements (oral over-the-counter) really help with pain and swelling.  Cortisone shots make it completely better for about 3 months, but I try not to do that too much or the body will stop reacting to it.  Hope that helps you.  I have realized this will probably be a lifetime issue for me, and I just have to deal with it until eventually get a knee replacement.















support