Synovial Osteochondromatosis - My Experience


Mar 2, 2014

About 15 months ago I started noticing a strange feeling in my right leg. I could not cross my right foot onto my left knee one day without a strain. A couple of months later I noticed that I was constantly flexing my quad muscles. Shortly after that, my knee would be slightly swollen and not look or feel right after normal daily activities.

This went on for several months with relatively no change and no pain. In time I developed a small limp, but was still not experiencing any pain. Just a limp with some motion limitations.

I finally went to a doctor and was told I strained my IT Band and to stretch and to walk regularly to help it to heal. This was not my issue and neither walking nor stretching helped or worsened the condition (that I know of).

About 5 months ago my limp was very noticeable and I could not even jog. But still no pain. Just limited motion. Although if I forced myself to run, it was painful, but I did not experience any pain day to day.

I went to an orthopedist and had an MRI done and was then diagnosed with synovial osteochondromatosis in the hip. It seemed very strange because any discomfort I was experiencing was in the knee. But the doctor explained it was referred pain for the issue in my hip.

The plan was set to get surgery, but due to family and work obligations I put it off for 5 months. During that time my condition rapidly accelerated. After a month I began experiencing pain in my knee daily. After a couple of months the pain became much worse and I was constantly having using ice and IBU to manage it. In time I could no longer walk without a cane. In the last weeks leading up to my surgery I could no longer use a cane and was only waking when absolutely necessary and only with crutches. I had to take the last 3 week off of work from my desk job because sitting was unbearable.

I have never experienced this type of pain before. I could not sit, stand, walk or even lie down without terrible pain or at best being very uncomfortable. I didn't sleep more than an hour at a time in the last month.

3 days ago I finally got the surgery. They removed hundreds of loose bodies from my hip, some fairly large. I'm not sure on the count or size just yet but will learn that at my next appointment.

Obviously it is too early to really know how successful the surgery was. But I do feel a great deal better on day 3 after the surgery than I did going into the surgery. I actually have less pain today and more movement than I did the day before the procedure! I can bend my knee straight out to about a 60 degree angle. Before surgery I could barley make it up a step and was in serious pain with each stair.

I don't want to get ahead of myself and say that I have been fixed. There is still a lot of motions that I cannot do and I am still very sore from the surgery. Right now it is hard to tell if the limited motion and soreness I am experiencing is from the surgery or not. The doctors say that because things had gotten so bad, I will likely be in physical therapy for up to one year retraining the muscles to function properly again. They also said that there didn't seem to be much damage done to the joint and it does not look like I will need a hip replacement because of it.

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I am 22 years old. I have just read all the symptoms of Osteoarthritis and it matches to what i have been facing from 3 years. I have a consistent pain in my Right Hip joint it is felt when I move my leg. Im facing Limited range of motions in joint and my joint have also become weak i don't have strength in right leg to lift any weight with that joint. 

I have been diagnosed with all possible lab blood tests including (T spot and TB gold test) , Xrays, Mri and Bone scan. 

The report of MRI tell that there is some Synovial Effusion found in the joint and the open biopsy is recommended. Furthermore from X Rays and MRI its clear that there is no damage happened to the Hip Joint so far.

I want to get to know if there is no damage happens to Joint if its possible that its osteoartritis? 

If no what could be possible disease I could have with the same Symtoms like ie limited range of motion of hip, Loss of strength in the leg, Pain when you move it. 

Doctor thinks it could be tuberculosis but the blood tests (TB gold, T spot) to check TB are clear. Bone scan is clear. Lungs X rays are also clear.

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In January 2013 I started having left leg pains and started taking ibuprofens or store brand pain killers. Over the last 3 months the pain has become chronic, numbness in my big toe and foot, tingling, and pain in my buttock. This is only happening in my left leg. To make a LONG story short. The MRI showed a cyst pressing against my spine causing the pain. Initially my chiropractor thought is was a disc issue causing my sciatic nerve issues. My neurologist suggested a laminectomy Surgery however his concern was if I need fusion. I had an x-ray done that indicated there is some slipping. The neurologist gave me his best guestimation of how long that area of my back would last without the fusion. If he could have given me a high % that the fusion is necessary I would be at peace with it. Decisions, decisions. I was told the recovery is about 4 -6 weeks and longer with the fusion Do you have any knowledge on either procedure?

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Hello,
I'm new on this board. On October 1st 2015 I had decompression surgery (L2-L4), a laminectomy and removal of a synovial cyst that was very high up on the spine (L2)- it was compressing the cauda equina in a bad way. Since then I have had a lot of nerve pain in my groin (both sides), hamstrings, plus sciatica down my right leg from the hip to the toes (according to the neurosurgeon, this is a 'small hernia' due to stenosis and a trapped nerve on S1/L5/L4 that he will operate on when the pain gets too much for me). Not sure if the sciatica is related to the cauda equina syndrome, but imo the cause of both is spinal stenosis. The nerve pain got less throughout the months (except for the sciatica) but the last weeks it's returning again more, on both sides. I had an MRI done two months ago for the sciatic pain and the doctor saw 'something' on the L2 facet joint that could be a new synovial cyst, or else it's scar tissue, he wasn't sure. My gut feeling is that the cyst is growing back and pressing on the cauda equina again- or could it be that i'm still recovering from the first surgery (now 6 months ago)? I sure hope it's the latter, as it was a big operation and the surgeon said that fusion may be next, as the facet joints move too much and in this way the liquid will keep forming new cysts. Ugh. Mid August I will have a new MRI to see whether the synovial cyst is back or not.

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I am be followed by my pain management specialist who has been doing regular epidural injections, unfortunately there is so much scar tissue it is difficult to give me the injection on one side of the lumbar spine and I am finding the injections are lasting less and less time. The other problem I have is with my left knee and and am seeing an orthopedic specialist for this and just received a Synvisc injection. I am still dealing with a lot of pain in my knee - sometimes I feel like I am falling apart!

The problem I have is I know my basically my next steps would surgery for my spine to remove the cysts and surgery on my knee (not sure what procedure my orthopedic surgeon has in mind). Maybe, I'm just over thinking this - it is just awful to have multiple pain issues. I am just wondering how I would prioritize. At this time it would seem like the lumber spine is the priority, because sometimes I can't even roll over in bed without my husband helping. I am worried what I will like in 15 years - it is a scary thought. :sad: BTW - One thing both of my Doctors have suggested is a stationary bike and I understand that for exercise and it takes the pressure off the knee and spine, however I love getting out and walking with my dogs it is one of pleasures that I don't want to lose - even if I have to crawl home at the end of the walk.

Addition (Added 3/25/14) - Also, I am wondering if anyone has any suggestions to keep me walking - I understand my Doctor's viewpoint that other exercise options are easier on the spine (eg, stationary bike), however I just don't want to give up my daily walk. I am just wondering if there is anything that might help stop the spasms or reduce them.

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On day two post procedure the pain starting coming back. Each day the pain level increased to where I am now a level 8 and sometime 9 and can barely stand the pain. My lower right back just above the buttock feels like there is pressure and is very achy. The deep achy pain goes into my right buttock and wraps around the lower groin area. The achy pain goes down my right leg and into my foot. It is a pulsating deep ache and I can hardly stand it. It also feels numb at times and I get pins and needle tingling. When I get up from laying down or sometimes sitting (when I can sit) I get this sharp excruciating pain in my right groin that doubles me over. I have to stay still in the doubled over position to let it subside before I can straighten up and walk. Sometimes the groin pain just hits me out of nowhere when I am standing.

On my follow up visit with my physiatrist he recommended I have a consult with a neuro spine surgeon. My appointment with the surgeon is in a couple of days. I feel very fortunate to get into see this surgeon who is very hard to get in to see. He is rated as "one of the best" in a very large healthcare system where I work.

I am taking 1500mg of gabapentin along with 6 ibuprofen a day. I am also taking hydrocodone. I fight the pain and only take on the average one pain pill a day because I don't like the groggy feeling.

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ENT :: Day 1 Experience After Stapedectomy

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My mouth and throat were very dry (11am operation with no food or drink in 12 hours) and deep breathing was challenging. I was encouraged to take deep breaths to clear anything from my lungs. My OP ear was full of cotton and gauze so hearing from that side was nada. My good ear was very amplified like I had a microphone inside my mouth, I would scratch my head and it was LOUD. I was discharged after I could stand without aid and at home crashing on the couch.

I had a protein shake and a bowl of hot soup and felt very stable with no dizzy spells or balance issues, but still the amplification inside my head. I had ringing tones on my OP ear on and off but no pain. If I plugged my good ear I could hear nothing but the ringing.

Five hours now and I feel good but I can hear everything around me, the talking , the tv, things very far away are very clear. My dog barked right beside me and I nearly jumped off my chair, scared me. It was loud. I used to watch tv on 65 volume now it's at 40 volume.

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Pompholyx Sharing My Experience

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I think there are three major factors that contribute to the outbreak (environmental, mental, and diet), and I'll explain each in more detail:

Environmental: During dry winter seasons, I develop skin rashes all around my body (guys hate lotion), I think if dry skin can contribute to skin rashes, it probably can contribute to pompholyx outbreak as well.

Solution: Make sure your body is well moisturized, I really don't enjoy the oily sensation, but it sure beats waking up to the itch in the middle of the night! Cetaphil cream (not lotion) work very well for me. Stock up when they're on sale!

Mental+Sleep: I was unemployed when the first episode occurred, and I think stress has a lot to do with it. Also, make sure you sleep at least 7 hours a day, and try to relax and think positive thoughts as much as you can.

Solution: I just try to be grateful of what I have... there are people out there who are suffering diseases 1000x worse than pompholyx or being unemployed....

Diet: The dermatologist told me to cut out chocolate and nuts (especially peanuts) completely. It was HARD. But I started about 2 weeks ago, and it's been working so far. There was a scientific study about the possibility of chromium in chocolate that induced a flare up (from breast milk)

http://www.ncbi.nlm.nih.gov/pubmed/17671414

For nerds like me, you can check it out (be aware though, it's just a sample size of 1!)

solution: see above, you can cut out coffee too, but that will be too hard for me.

Medication:

As a prophylaxis, I take a 180mg fexofenadine every night. In addition, when you see (or feel) small blisters starting to accumulate, there are two topical steroids that I use.

0.05% clobetasol propionate (GSK markets it as Dermovate), ointment form

0.5mg/gm fluocinonide, cream form

http://img.medscape.com/fullsize/migrated/551/352/dn551352.tab4.gif

clobetasol is listed as class 1, very high potency steroid, and fluocinonide is listed as class2, high potency steroid. My dermatologist assured me that applications to the extremities (fingers, toes) will not cause a lot of absorption to the body, so you can be very generous in your application.

I also take multi-vitamins. My dad (who's an MD) told me Asians do not absorb B-vitamins very well, so it's important to supplement with either B-complex or B-12 vitamins.

This is a pesky condition to have...

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Most of these things I thought were just normal women's behaviour, but after speaking with many other women who have since gone off various other contraception, it has been brought to my attention, this all might be a side effect.

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Anyone have experience with SI joint injections?

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Has anyone had success with SI joint injections? My typical symptoms are left side lower back, hip, and thigh pain from just annoying to feeling like my bones are disintegrating...that's the best description I can come up with I also have a lot of muscle soreness in those areas.

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Did you have increased pain for a few days following the injection? After the ones in my foot, I had fairly severe pain for several days...I think they called it a cortisone flair.

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