Condensing Osteitis

Hello everyone,

I have finally found someone who thinks he can help. I am seeing Dr. John Warner at Massachusetts general hospital in Boston. He did a contrast dye injection and CT and found I have a torn dick in my sc joint and arthritis forming on the end of my clavicle. He also said that a majority of C.O. Cases are incorrectly diagnosed. Have you all had bone scans? He did say that steroid injections are supposed to be very helpful... I've had 4 and none of them worked. So to more we are doing surgery to remove that disc and shave down the arthritist. He is very optimistic about the procedure and says he's done it a few times before and has had good results with it. Although he did say there are some risks, i had to have bllod drawn so they could have some on hand. I wouldn't do this procedure with just anyone though. If anyone is in the new England area, e-mail him. He is very willing to see patients with this diagnosis!
http://bostonshoulder.com/

I will definitely keep you all updated.

-abby

Hi All.

Well after finding a doctor that said he could help, he too turned and said. Can not do anything. He did reccommend a steriod injection and after reading Hibiscuouse last post, I am going to at least try that. I did hear something new though, apparently there are alot of large blood vessels around your Clavicle, and he siad if they operate I would DIE. Well thats a new one. Anyone else been told that.

I rang about 15 shoulder Dr's and 3 said they could help, but after $150 and a 5 minute consultation with one of them, and to be told cant do anything anyway, Im thinking its time to accept that I have this stupid thing, and nothing will fix it. As one doctor said, just deal with it.

Hibiscus - I too did celebrex 200 mgs. Did nothing for me at all. Tried all natural anti inflamatory's. No help either. And your pic is not showing up.

Sussnet - Good lucjk with finding out any info. If you do please share. All we can do is stay in contact with this site and hopefully one day one of us will come up with a cure (I can dream)

Stay positive X

I had bilateral steroid injections directly into my SC joints about 6 weeks ago. Range of motion instantly improved and feels back to normal. The left SC that sticks out still gives me trouble, but my right side (that did not stick out, but was more debilitating than my left) felt normal again. But it's not gone, by any means. I still have swelling around the base of my neck, and it still aches and is really tight at times. Some days are better than others. I was really bad off before. Very limited with my activity and range of motion. In a lot of pain, with a lot of swelling and severe tightness. Never comfortable.
That hight of discomfort is gone, but frequently, with activity, I am reminded it's still there. I believe my clavicle is just anatomically changed, and will never articulate correctly again without discomfort.
My rheumatologist has started me on Celebrex 200 mgs. daily just to see if it helps with the neck swelling. I can't really tell if it has or not. Some days it's just a lot worse than others. And certainly worse after activity (even changing sheets on our beds). Frustrating!!
I am scheduled for a repeat MRI of my clavicles today. He actually put on the request form "suspect osteitis condensans". That's huge for a Dr. to go out on a limb and actually say he thinks I have it. Hopefully, the radiologist will take a different view on how he reads my MRI based on this, and think outside the box a bit.
My husband's nephew is a interventional radiologist and I sent all my films to him after a discussion with him to "think outside the box". He spent a lot of time looking at them and learning more about C.O. and he sent them back to me saying he believes I have it as well. He ruled out everything else.
So, we shall see what my newest film says compared to the ones I had before. Still no definitive answers as to how to treat it, but I will say the steriod injections have helped.

Hello again hibiscushouse,

The injection was given into the sternoclavicular joint (right behind the ball) . It was fairly painful and i got absolutely no relief whatsoever from it.


Natashe,
Sorry to hear you're starting to get pain on the other side now. Iknow how frustrating it must be, and how helpless you must feel but hopefully we can get more info and some help. Your Nutrapath sounds interesting and worth a try, hope you feel better soon.

Good luck,

C

Cervical spondylosis at C5-C6 and C6-C7, with central disk bulge at C4-C5. I was sent to an interventional spine specialist and he did not think my problems were related to my cervical spine and did not suggest treatment for the cervical spine.
However he was interested in my clavicles and after reviewing the information on Condensing Osteitis, said he would be available to do whatever treatment my Rheumatologist recommended.
Looks like we are leaning towards a steroid injection, but the big question no one can answer is:
Into the joint or along the clavicle, near the joint?
Those that said you had a steroid injection into the joint, was it directly IN the joint or outside of it?

This clearly shows the swelling I have been having around the base of my neck (like a ring). It isn't a good picture of the left S.C. lump though, but it's pretty pronounced.

I've had nerve testing done and seen multiple specialists... Not sure how, but they rulled out thoracic outlet early on.


Thank you for the thought though!!

This sounds like symptoms of Thoracic Outlet syndrome.

Hi Tash,

I think it's a great idea to put all our info together. It certainly won't do any harm... maybe some good can come of it; fingers crossed,,

C

Hi Gabby and Cbjudge,

I pretty much have all the same symptoms and pain as you both, and I also use anti inflamatories, pain meds, massage, hot and cold packs. All offer some temp relief, but not for long. I have found the only thing that does work is to not do anything at all, and i don't know about you guy's but that is impossible for me. I have also been told to just deal with it, although this comming from a specialist who had never heard of this before and did not seem interested at all in looking into it further. It affects every aspect of your life when you are in constant pain and tired from broken sleep, but I do try to stay positive and active. I walk 5 km every morning, do Zumba 3 times a week, although movement is limited. It does help to keep moving. I would like to do some research on this and was wondering if you would both be interested in in giving me some more detials about your condition, and anyone else who may be reading this. I will then try and find a specialist who may want to look at all the info I present and see if maybe we can get some action. What do you think? Im happy to supply my email address to cobntact me and I will keep all your personal info private.

Tash