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    Old 11-24-2006, 08:52 PM   #31
    MoLu
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    Re: synovial chondromatosis

    Jackie-
    It sounds fishy to me. I can't believe a Dr would cancel because of a holiday. Maybe I'm nieve but it's not like the holiday was a surprise or anything. But why would he change his mind like this? You probably have mixed emotions about the cancelation. Glad you aren't going thru it but sorry it's not taken care of. I still really recommend an orthopedic oncologist at a teaching hospital for the best care. Maybe he realised he too was in over his head with this disease. I don't know what to make of it. It is really the strangest.

    I too have post problems sometimes and find if I check that box when you sign in (remember me?) it always seems to work then.

    Let me me know more of the details. I check for posts nightly. Totally addicted to the sites after all this researching on the disease. Boy do I need a life!
    Martha

     
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    Old 12-05-2006, 06:57 AM   #32
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    Re: synovial chondromatosis

    hi martha...i hope you are feeling good and into the holiday spirit...this is an exciting year for you with your daughter's upcoming wedding...i hope you enjoy every minute of the preparations....i honestly don't know what to do next...i have called a few drs. to see if they know the condition...they say they have heard of it but have no real knowledge...i am trying to find another oncologist...the one i saw in july was running extremely late and was very quick with me...his advice was an open synovectomy (very difficult and long rehab with the hip)...and he felt i most likely wouldn't have a recurrence...i am not comfortable with the surgery because they have to slice the muscle from the bone, disclocate the femur and pin it and then hope things will grow back normally...to me it seems that the risk of winding up worse is too great...if i find a knowledgable dr i will make an appt...otherwise i am just going to live with it...what is really upsetting is that when things get worse a hip replacement may not even be the answer...take care, jackie

     
    Old 12-15-2006, 08:30 PM   #33
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    Re: synovial chondromatosis

    Hi Jackie-
    So have you found any new dr's with some knowlege of SC? You were going to *** right? That stands for Hospital of Special Surgeries right? I have read good things about this hospital so I find it hard to believe that there isn't someone very knowlegeable on their staff. Maybe he was the one and just too rushed to do you justice. I have problems myself with that. I never know which dr is going to show up at the appt. My husband and I laugh on which dr is going to show up. Dr Good or Dr Bad. But in their defense somedays must be very hard for an oncologist. I too have read some scary things about tumor removal in the hip when they have to dislocate it. Good results with artho and a good dr but never quite gets it all out because they just can't reach all of the synovium. Hard decisions but maybe artho could at least buy some more time until the inevitable hip replacement. Let me know how it all unfolds. I hope you get a dr soon that's right for you.
    I met with my oncologist today and got the results of my MRI. Good news. No new growths and the remaining ones are the same too. Radiologist still says a diffuse synovial process is taking place and the synovium is still thickening. Doesn't seem to be so aggressive though and has slowed down a lot. My knee has been feeling better and stronger and I'm not limping around nearly as much. It still hurst because of the OA now so I asked for a cortisone shot to see it it helps. To soon to tell tonight but I do see an improvement. That would be so great if this works and buys me time on a TKR. Keep your fingers crossed.
    Now the bad news. My back is hurting now!!! I've had back problems for 30 years on and off. So I talked with the dr today about this and my on going nerve problem in the calf and foot. Could this numb foot really be associated with my back after all this? And we just happened to stumble on the knee first? I tell ya! He refered me to a another OS for spines who he acutally goes to. Having some siatica problems but hope to wait and see maybe after Christmas. Depends how bad it gets. I really want to be ok again but all and all feel much better. Not as depressed and am getting on with doing things again. Joined a low impact water aerobics class which I love. Flunked yoga - just not for me.
    Happy Holidays to you! 2007 will be better we can only hope.
    Martha

     
    Old 02-26-2007, 07:18 AM   #34
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    Re: synovial chondromatosis

    Hi Jackie and Martha,

    How are you both, has the new year brought any relief to your conditions?

    I had my first reoccurrence of symptoms a few weeks back. It feels to me like another nodule has become detached in my knee and is floating around! This since my op in march last year. The consultant has said I need a total synovectomy but I am going to leave it as long as possible this time - that's two months in bed and I may be a lazy man but not that lazy!

    Anyway, I hope you are both well.

    Graham

     
    Old 02-26-2007, 02:51 PM   #35
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    Re: synovial chondromatosis

    hi graham...i wouldn't rush into anything...for me,they recommended a total synovectomy of the hip which is much worse than the knee...they cut all the muscle away and hope it reattaches among other problems...the drs don't seem to understand that there are 3 stages to this condition and when you go in too early new ones will form...i believe the secret to success is monitoring them with mri and when no new ones form for 6 months to a year then you go in and remove them arthroscopically...unfortunately i can't even find a dr that is knowledgable of the stages...from what i hear the uk is much more medically advanced than the us so keep trying to find someone who knows what they are talking about...for me, i am just living with it until i find the right person...good luck to you...jackie

     
    Old 02-26-2007, 04:14 PM   #36
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    Re: synovial chondromatosis

    Hi Jackie,

    Indeed you are right - rushing in to this is not good - it is a big op but as you rightly say not as big as the hip op! My consultant is very good however it seems to be normal in the UK for the consultant not to discuss why he recommends a treatment, despite previous biopsies performed during the many ops I have had he has never indicated whether I am now in the stage where I no longer produce the nodules. This would be the best course of action if this is the case, I really need to discuss with him further however this does not come without cost! I'll leave it as long as I can then go back and have a chat I think.

    I hope you find someone that is able to help you with this. I must admit I always thought that there would be plently of people in the US that could help but of course it is a big place!

    Good luck with your search.

    Graham

     
    Old 02-27-2007, 08:12 PM   #37
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    Re: synovial chondromatosis

    Hi Jackie & Graham-
    Glad to see you are still checking in and keeping in touch. Very sorry to hear Graham you feel its back. Kind of like that horror movie "It's Bacckkk"! You're right I quess to wait as long as you can before any more surgery. Regarding dr's I really don't think any of the doctors can be too much of an expert since we are so far and in between. I read posts from people in the UK looking for dr's in the states and people in the states looking for UK dr's. Always greener on the other side isn't it. I was just researching recently for a list of the best Ortho hospitals in the states and it lists the Mayo in Rochester, MN as rated number 1 and your hospital Jackie the *** as number #2. I don't live to far from the Mayo hospital. Maybe if things get worse I should check them out. I'd hate to start all over again in a different town/hospital but if that is what it takes....
    I really don't think my treatment would be any different.
    Well I posted in Dec that I got a cortisone shot. It only lasted 4 days. Four short days of no pain and then within in two weeks it was the same as before. Guess that didn't work. Starting to have some real problems with my nerve in my leg now. Foot still numb and pronounced burn in back of legs (yes both) and buzzing in my left leg. Even have a rash starting to cover parts of my legs and back. What's up with that? Anyway decided to go to the spine dr now and will be having an MRI and EMG in the next couple of weeks. Not painful thank heavens but burning and irritating. I'll let you know what happens next. Meet with my oncologist again next month. I want him to feel the back of my calf. I swear I feel bumps along the top of my calf. SC maybe?
    Well I'm glad to keep in touch. Feels better to know you guys are out there.
    Martha

     
    Old 02-28-2007, 03:42 AM   #38
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    Re: synovial chondromatosis

    hi martha and graham...martha, i am so sorry to hear that you are suffering other symptoms now...i would definetly try the mayo clinic...it seems some of the things you describe are coming from damage because of the sc...maybe it can be stopped...it really stinks that we can't do something about it...i heard something about a laser knife being used for the tumors on the spine...bloodless and painless with no recuperation time...i am hoping this might be something they could put to use with us...keep on trying...wedding plans must be hitting a feverish pitch...try to enjoy...i am looking forward to being a grandma in august ...take care

     
    Old 03-18-2007, 02:09 PM   #39
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    Re: synovial chondromatosis

    Hi guys

    my names charlie, i'm 20 and was diagnosed with sc of the right hip when i was 17 (after my GP insiting that i just had growing pains since i was 12!) I had an arthroscopy last year but my nodules were too big for keyhole surgery,so they only removed one of the eight. I had a call from admissions yesterday to tell me that i am finally near the top of the waiting list so i will be going in for a synovectomy in around 4 weeks time EEEEEKKK! just a tad scared!

    As for finding a good doctor, i've been lucky i am a patient at the Nuffield Orhtopedic Centre in Oxford, apart from the long waiting lists they have been quite good.

    its been sooo nice to finally hear from people with the extact same condition!

    charlie
    xxxxxx

     
    Old 03-18-2007, 07:37 PM   #40
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    Re: synovial chondromatosis

    Hi Charlie-
    Welcome to our little group. And yes it is alway good to meet someone that understands what you are going through. Please tell us more about your upcoming procedure. Do they plan on doing a complete synovecotmy? Will they be seperating the hip or a less invasive procedure? Jackie will be especially interestesed in your procedure since she has SC in the hip too. Also please share your experiences so future SC patients will be able to read and learn.

    If you have any questions for us also we'll be glad to share. It is scary but with any luck this surgery will be it for you and you'll feel alot better. I'll be sending good thoughts your way. Glad to hear you have such confidence in your dr. That's a good feeling.

    Jackie- Congrats on your good news! How exciting for you. Yes the wedding plans are heating up. It's been more fun than I thought it would be. Now if I can hold up.

    I'll meet with the spine dr 4-2 and the oncologist later in the month. The EMG really aggravated my nerves this time but I sure hope we can figure out what is causing the numbness. I'll post when I know something more.
    Martha

     
    Old 03-19-2007, 02:06 PM   #41
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    Re: synovial chondromatosis

    Thanx martha.

    I think they are planning to completly open my hip, ther are a few things that they have suggested, its up to me to decide what excatly they will do. I was born with dysplasia of the hips which went undiagnosed for 17 years. my joint itself is very shallow so its easy for my hip to dislocate so one of my options is for them to incrase the depth of the joint by cutting into my pelvis then bring it across and pinning it! (that should be fun at airport security!)
    the next option is that they open the hip and remove the tumours but leave the synovial memebrane the other is that they remove everything!
    not sure what to go for i don't want to keep having operations and spend my life on NHS waiting lists! so i am tempted to have one big op and hopefully i won't have to have anymore for a while. I had to push for this surgery as my surgeons don't want to do too much as i am so younge, as for a hip replacement i think i will be doing good if I make it to 40!

    I really have trouble with my knees, i guess they take the brunt of my hip not being able to take the weight, does anyone else get other painful joints??? Also what drugs are you on??? i take naproxen or did but it didn't really help and i have been told its pretty nasty for ur liver!

    charlie
    xxxxxx

     
    Old 03-20-2007, 09:09 PM   #42
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    Re: synovial chondromatosis

    Charlie-
    Boy it sounds like you have some tough decisions to make. You are so young for a hip replacement. I hope your drs are giving you lots of advice. They should be guiding you. 2nd opinion would be good too. I hear alot of negative things regarding the NHS. I had thought a national healthcare system for us in the states would be good but now I'm not sure.

    Regarding other joints in the body aching, I do agree it throws you all off and can easily hurt elsewhere. I know my pt exercises focused alot on my hips while I was recovering from knee surgery. Now I'm having back problems and I'm sure those years of limping didn't help my back. I just take over the counter ibprofen for my pain when I need it. Most pain medicines make me sick to my stomach so I avoid them. Ibprofen seems to work really well for me.

    Good luck with your decisions.
    Martha

     
    Old 03-27-2007, 06:59 PM   #43
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    Re: synovial chondromatosis

    Quote:
    Originally Posted by girlyxcharlie View Post
    Hi guys

    my names charlie, i'm 20 and was diagnosed with sc of the right hip when i was 17 (after my GP insiting that i just had growing pains since i was 12!) I had an arthroscopy last year but my nodules were too big for keyhole surgery,so they only removed one of the eight. I had a call from admissions yesterday to tell me that i am finally near the top of the waiting list so i will be going in for a synovectomy in around 4 weeks time EEEEEKKK! just a tad scared!

    As for finding a good doctor, i've been lucky i am a patient at the Nuffield Orhtopedic Centre in Oxford, apart from the long waiting lists they have been quite good.

    its been sooo nice to finally hear from people with the extact same condition!

    charlie
    xxxxxx
    Hi Charlie

    I had a total syvonectomy for SC 8 years ago when I was 28. It was radical and controversial at the time, but I'm very happy I had it done as my left knee, my great surgeon says, is now cured! It is very painful, I thought they had chopped my leg off after surgery, but understanding how serious it was I quickly had no regrets, just 6 months of tough physio etc. It feels great now, not perfect, but better than I ever expected!

    Having said all that, I have just returned home after a scope on my RIGHT knee (8 years later) where they found CS too! Have them in a bit of a spin as supposed to be monoarticular. Had a partial syvonectomy this time. So here we go again!

    Anyway, from Australia, best of luck with your operation - rest a lot, eat well and healthily and try not to get stressed as you will need to focus on your recovery and being positive - because I know you'll do great!

    Sarah

     
    Old 03-28-2007, 03:07 AM   #44
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    Re: synovial chondromatosis

    Thanx guys,

    I think i am going to go for the full synovectomy, my aim is to have this surgery then hopefully not have another one for a long time! Its good to hear a possitve outcome from a full synovectomy, i can sleep a little better tonight! I know it can come back but if i have 8 yrs sc free then that will be worth it in my books.

    The pain issue scares me though, when i had an arthroscopy last year then gave me a general anaesthetic in the hip before they closed me up so the pain didn't really hit me till the next day, by that point they nurses didn't really want to give me anthing more than 2 codine and 2 paracetomol! I am sure i will be on the morphine this time thou!

    I know this sounds silly compared to eveything else but did you have stiches or staples? do staples leave a different type of scar??? plus they look pretty painful to take out!. Did anyone use any of those creams to help reduce their scar????

    I have my pre-op assement on the 5th of april so i will know exactly what i will be having done then.

    charlie
    xxxxxx

     
    Old 03-28-2007, 05:18 AM   #45
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    Re: synovial chondromatosis

    Quote:
    Originally Posted by girlyxcharlie View Post
    Thanx guys,

    I think i am going to go for the full synovectomy, my aim is to have this surgery then hopefully not have another one for a long time! Its good to hear a possitve outcome from a full synovectomy, i can sleep a little better tonight! I know it can come back but if i have 8 yrs sc free then that will be worth it in my books.

    The pain issue scares me though, when i had an arthroscopy last year then gave me a general anaesthetic in the hip before they closed me up so the pain didn't really hit me till the next day, by that point they nurses didn't really want to give me anthing more than 2 codine and 2 paracetomol! I am sure i will be on the morphine this time thou!

    I know this sounds silly compared to eveything else but did you have stiches or staples? do staples leave a different type of scar??? plus they look pretty painful to take out!. Did anyone use any of those creams to help reduce their scar????

    I have my pre-op assement on the 5th of april so i will know exactly what i will be having done then.

    charlie
    xxxxxx

     
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