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September 16, 2019  
FORUMS: Read-Only

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Topic Title: Condensing Osteitis
Created On: 08/10/2005 05:48 PM
 
 04/01/2016 01:23 PM

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dmpshere

<p>&#160;My 12 year old daughter had had this condition for 3 years in her right clavicle.&#160; It was misdiagnosed as LCH for the past 3 years.&#160; Last year her hemotogolgist began to question this diagnosis and this year it's been further affirmed by another hemotoligist that it is condensing osteitis.&#160; My question is has anyone found any treatment that helps this condition.&#160; My daughter has had approx 6-7 "flare-ups" in the past 3 years. The only thing that helps is motrin and ice.&#160; She went almost 1 1/2 yrs with no flare ups and we were very hopeful she was over it but last week she had a full blown flare up that lasted over a week.&#160; Very little follow up research available.&#160; What's the longest anyones gone with no flare ups?&#160; Will she ever be in "the clear".</p>
<p>Thx</p>
<p>&#160;</p>
 05/02/2012 08:34 PM

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hibiscushouse

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. [br]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". [br]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. [br]I will take my time and get several opinions. [br]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. [br]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!
 04/14/2012 09:51 PM

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gabby2321

Hey everyone![br][br]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. :-)
 02/29/2012 10:13 AM

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hibiscushouse

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. [br]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. [br]Being sent from Florida to a teaching hospital in Charleston, South Carolina.
 02/28/2012 08:14 AM

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hibiscushouse

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).[br]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.
 02/20/2012 06:11 PM

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natashas

Hi All,[br][br]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.[br][br]Sussan, I have not had any problems with the AC joint, although the pain first started in my shoulder then went to my clavicle.[br][br]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.[br][br]Stay strong all
 02/20/2012 10:08 AM

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gabby2321

Hey guys! [br] 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!![br]Please feel free to ask questions, and I'll keep you all updated on my progress![br][br]Abby
 02/19/2012 06:35 PM

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susannet

Hello everyone![br][br]Im so sorry, my english is terrible but i hope you understand me anyway[br][br]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?[br][br]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. [br][br]Stay positive <3 [br]
 02/14/2012 09:46 PM

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hibiscushouse

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

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gabby2321

Hello everyone,[br][br]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![br]http://bostonshoulder.com/[br][br]I will definitely keep you all updated. [br][br]-abby
     
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