Condensing Osteitis

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Topic Title: Condensing Osteitis
Created On: 08/10/2005 05:48 PM

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 05/02/2012 08:34 PM

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hibiscushouse

Posts: 12

Update on my situation: I just returned from Charleston, S.C. after seeing Dr. Richard Silver, Director, Division of Rheumatology and Immunology as well as Interim Chair, Department of Medicine for MUSC. He trained the Rheumatologist that has been working with me from the beginning. He reviewd my MRI with his bone and joint radiologist and the outcome is that I don't have a disease process like Rheumatoid arthritis, etc, nor do I have osteitis condensing, but rather a mechanical process as a result of my many years of competitive swimming as a child and teenager. I ended up with degenerative arthritis in my SC joint and then the joint finally gave out and I have a separated sc joint. Using a medical term, I have a subluxation of the clavicle.
I am doing research to learn more about this, and have discovered that there are many people reporting sports related cases of weakness of this joint. Look up the term "sternoclavicular joint laxity".
What am I going to do about it? Currently, the MD's have increased my celebrex to twice a day. I am seeing an upper cervical chiroprator (look it up, it's nothing like a conventional chiroprator), and they incorporated massage therapy into my treatment which has been a God send for the muscle spasms I have. I have been advised to take a muscle relaxer as I need it. I don't think the Celebrex nor the muscle relaxer do much for me and really the massage, especially trigger point massage, helps the most. Finally, I am seeking out a sports orthopedic doctor that has specific training and experience with the sternoclavicular joint. I live in Florida and think I have found one in Bradenton, Florida. I am going to be very selective in determining what I will do with this going forward. I read enough to understand that some surgery's used to treat this end up creating additional problems.
I will take my time and get several opinions.
I also found some information that I am just starting to review that has something to do with Prolotherapy treatments and injections. A non surgical way to rejenerate the joint. Lots to learn and understand about that.
Bottom line is this is a rare condition, so you have to do the homework yourself, and find the right people that won't just compartmentalize this situation based on the typical patient with the typical problem. Unfortunate that it cost money and time to keep looking for someone who will look "outside the box", and meanwhile you are miserable. Don't give up though. You know your body best. If you don't fit the characteristics of what they are saying they think you have, keep looking for a solution. I took 2 dozen articles to my Rheumatologist, Dr. Rodney Daniel in Clearwater, Florida. And he was baffled enough to review each and every one of them doing his best to solve this problem for me. I am grateful for his interest and persistence!
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 04/14/2012 09:51 PM

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gabby2321

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Hey everyone!

So I am just over two months post op now and am doing well! I have almost full range of motion back and my pain leve is WAY down! I still have a lot of weakness due to the lack of use for three years... But I'm getting there. :-)
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 02/29/2012 10:13 AM

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hibiscushouse

Posts: 12

After a tete a tete between the radiologist and my Rheumatologist, my latest MRI shows: Large effusion in the left sternoclavicular joint. Mild left s.c. joint separation. Synovitis of the joint and fluid around the distal clavicle, which likely represents a component of ganglion cyst. No bone destruction or evidence of a tumor.
So, all you Dr.'s who told me: "it must be arthritis of the clavicle", the bone looks fine. So, please, think outside the box from the "arthritis issue" and let's figure this out.
Being sent from Florida to a teaching hospital in Charleston, South Carolina.
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 02/28/2012 08:14 AM

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hibiscushouse

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That's great news Abby. Please keep us all informed on your progress. I am very interested to see how you do. I get my latest MRI results this morning and am printing out this topic to take to my Dr. to review and get his opinion to see if it would apply to my situation. (The hunt for answers and solutions continues).
The reason for the potential for significant bleeding is that the carotid arteries and subclavian veins are located behind the sternum. High pressure blood flow coming from these veins/arteries.
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 02/20/2012 06:11 PM

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natashas

Posts: 6

Hi All,

Gabby thats great news. I have my fingers crossed for you all the way over here. Let us know once the PT starts if it is still giving you grief.

Sussan, I have not had any problems with the AC joint, although the pain first started in my shoulder then went to my clavicle.

I had a Steroid injection 1.5 weeks ago. I will say that it has helped a little. Am sleeping a fair bit better and pain during the day is alot better. At about 5 or 6pm its starts to really hurt, but have only had pain killers once since the injection, and that was because I over did it in the garden. I am going to give it another couple of weeks and then maybe have another one as recommended.

Stay strong all
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 02/20/2012 10:08 AM

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gabby2321

Posts: 7

Hey guys!
I am two weeks post op today. I'm doing very well and the doc has very high hopes this will fix everything! They removed the torn disc in my SC joint and part of my clavicle where the arthritist had set in. Also tightened up some of the ligaments necessary to keep the joint stable. One of the major concerns we did talk about was the major vessels and the risk of blood loss. I elected to have the procedure any way.... And have been sailing through it ever since! I don't think I would have had this done with just anyone though. This doctor had preformed this procedure before and knew what to look for/pay attention to. I start pt in about a week or so and am in a sling full time (even sleeping) for four weeks total. If you are close to the Boston area, give dr. Warner a call. He's great!!
Please feel free to ask questions, and I'll keep you all updated on my progress!

Abby
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 02/19/2012 06:35 PM

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susannet

Posts: 4

Hello everyone!

Im so sorry, my english is terrible but i hope you understand me anyway

My doctors are very critical of any operation, but they never tell me why. Is there someone out there who can tell me someting about it? Is it a huge chance to die or be paralyzed?

Do you just have a problem with the sternoclavicular joint, or do you also have a problem with the AC joint? For me it first started with the AC and after a while i got it in my sternoclavicular joint.

Stay positive <3
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 02/14/2012 09:46 PM

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hibiscushouse

Posts: 12

Abby, I am anxious to see the outcome of all that you posted.haveyou had your surgery?
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 02/05/2012 08:35 AM

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gabby2321

Posts: 7

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
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 02/05/2012 07:56 AM

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cbjudge

Posts: 7

Hi Natasha,
I'm sorry to hear you got the same bad news again.... that nothing can be done. I was actually told by one specialist that it was too dangerous to operate on the clavicle because of all the major vessels running behind it. He also said there was a possibility i could lose ALL use of the left arm if something went wrong. It seems we are going to have to just suffer through it. I'll keep checking on line to see if any more recent news turns up, if anyone has good news about the condition please post it here, as even one success story would help the rest of us keep positive.

Regards,
C
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 01/31/2012 06:16 PM

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natashas

Posts: 6

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
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 01/30/2012 10:24 AM

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hibiscushouse

Posts: 12

I don't see that the picture I posted a few months ago is showing up. I'm wondering if the moderator removed it. I'm sorry if they did, because I think it would be helpful to actually "see" some of the symptoms we are talking about. I have, personally, scoured the internet looking for any pictures of this myself. Any picture that I could compare the physical and visual symptoms that I was having.
Can anyone else see the picture I posted? Or is it just me and my computer that won't allow me to view it?
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 01/30/2012 10:20 AM

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hibiscushouse

Posts: 12

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.
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 01/15/2012 06:12 PM

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susannet

Posts: 4

Hello.

Im interested in information about this subject. Im 23 years old and im from Norway and I have the same problem (SC dislocation). The bone pops out and it affects my life in a very negativ direction. I cant lift anyting, and my neck is very sore and I have a lot of headache. The doctors here in Norway are very critical of any operation, and they dont give me any information or other tips about this subject.
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 11/25/2011 11:47 AM

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cbjudge

Posts: 7

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
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 11/07/2011 11:26 PM

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natashas

Posts: 6

Hi All,

Hope you are well. I'm still searching for a DR who will look at the qeustionaire, It looks as though a Muscular Sleletal Specialist is interested so we will see how that goes. If there is anyone else who would like to fill out a questionaire I have prepared to take to whom ever I can get to listen, please feel free to contact me at robslattery@yahoo.com.au

At the moment I am up to day 4 with little pain, mostly because I have restricted my self to doing pretty much nothing. I have had 3 really bad weeks after over doing it the garden, so rest was needed, for my sanity and also my poor family's. 3 weeks of little or no sleep starts to send you round the bend hey, haha. The bad news is that I now starting to get symptoms and pain in my other clavicle/shoudler. So thats just bloody lovely. Really have no idea how I will cope if the pain gets as bad as my left side. How can I function? I'm so scared right now.

Hibiscushouse I have not had the steroid injection, I cannot find anyone in Adeliade Australia that will do that, so I can't tell you much there sorry. I have taken Celbrex (anti-inflamatory) Panadeane Forte (for pain) also Endone. I do get some reife with the pain meds at night to help me sleep, but only if it's not to painfull. Once it gets to certain level of pain nothing helps until it is ready to go away.

I have seen a Nutrapath today and she belives that certain foods we eat cause inflamation ads is testing me to see which ones affect me. I will then avoid these foods and see if that helps. She has also put me on some natural anti inflmatory medicine, so I will get back to you all to see if any of this helps.

Take Care All
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 10/30/2011 03:35 PM

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hibiscushouse

Posts: 12

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?
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 10/26/2011 08:01 PM

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cbjudge

Posts: 7

Hi hibiscushouse,

I've had an injection into the left SC joint, and found no relief whatsoever from it.
What kind of C spine issues?
I find that the stress and the position i have to adopt to protect my shoulder from pain, increases pain and stiffness in my neck and accross both shoulders.

No good news yet, sorry


C
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 10/19/2011 03:17 PM

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hibiscushouse

Posts: 12



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.
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 10/19/2011 02:34 PM

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hibiscushouse

Posts: 12


Having seen a rheumatologist (which consulted with his partner), a shoulder orthopedic (and another Dr. in his office doing his fellowship), and now a spine orthopedic all associated with a teaching hospital here in Florida, my rheumatologist is convinced I have condensing osteitis. He wants me to have a biopsy and injection into the SC joint. The orthopedic's keep saying it's just osteo arthritis of my SC joints.
My rheumatologist says they just have never seen C.O. before so they aren't looking hard enough. (I tend to agree since the shoulder Dr. glanced at the picture I had taken of the swelling around the base of my neck and said, "I don't know why that's happening."
BTW, my Rheumatologist wasn't familiar with C.O. until I brought him one of many article's from the internet trying to "fit" me into something in order to get a diagnosis. He looked into it further and agreed.
My SC "lump" is on my left, my rt. SC looks normal. Problem is, I am having most of symptoms in my right side now.
Also, I have cervical spine issues that the spine Dr. wants to inject. She believes that's why I have all the shoulder, and neck pain/swelling.
The Rheumatologist is questioning whether the c. osteitis is causing the cervical spine issues.
Anyone else found out you have Cspine issues along with the C.O.?


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