Condensing Osteitis

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

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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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 09/25/2011 08:55 PM

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gabby2321

Posts: 7

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!!
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 09/16/2011 07:08 PM

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hibiscushouse

Posts: 12

Sorry, that was meant for Gabby regarding her post that her arm goes numb when she raises it.
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 09/16/2011 07:05 PM

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hibiscushouse

Posts: 12


This sounds like symptoms of Thoracic Outlet syndrome.
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 06/15/2011 09:54 PM

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natashas

Posts: 6

Hi Guys, My email is [email protected]. Once you email me I will send through a list of questions. Maybe we can find a common link. Thanks for wanting to help out with this. We shall see what will come of it.

Tash
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 06/14/2011 05:55 PM

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cbjudge

Posts: 7


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
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 06/13/2011 10:03 PM

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gabby2321

Posts: 7

Natashas,
I'm willing to do anything at this point. Every doctor I've seen has told me there is nothing to do at this point, but give it time. One said the nerve endings will die off after a few YEARS and that will give me some reliefe, but the thought of waiting that long is driving me crazy.
I have recently started having muscle spams in in lower left forearm, which to add on top of it all is lovely. I've tried staying active (going to the gym, doing zumba as well) but everything I do, even with limited motion, adds more pain. I try not to lift anything heavy or exhurt anything more then i have to, but life is never easy enough to do anything like that.
Please let me know how I can help. I'm up for doing anything that will find an answer at this point.

And note to all.... nerve testing does nothing but cause you pain and leave you NEVER wanting to see a doctor again!

~abby
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 06/13/2011 08:09 PM

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natashas

Posts: 6

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
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 06/10/2011 11:26 AM

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cbjudge

Posts: 7

hi gabby,
I have limited movement in my left arm, and find that if i overdo it, the pain spreads to my neck and head, chest muscles and down my arm. I sleep sitting up some nights, as the pain gets so intense when i lie down that it's hard to breathe. Alternating between Hot and cold packs helps at night. I get some relief from difene (anti-inflammatories) but can only take them when REALLY needed as they affect my stomach. If we're heading off shopping for the day i sometimes use a sling, this helps me last longer before i have to admit defeat and go home.
I would love to be able to give you better news, but for the moment i'm hoping someone else has had better luck than i have.

C
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 06/09/2011 10:14 PM

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gabby2321

Posts: 7

I'm interested to see what you all are doing for pain management. I have been living with this in my left arm for about 4 years now, with no relief. It wasn't until late last fall (after 6 MRI's, a bone scan, a ct, nerve testing and multiple x-rays) that I received this dianosis. As I stated before, the pain management injections really did nothing for me and more so now then ever the pain is radiating in to shoulder joint and my neck. My range of motion has been cut in half, and I loose feeling in my fingers when I try to raise my arm.
There has to be a better solution then to just "live with it" as every doctor I've seen has said.
Thoughts??
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 06/09/2011 02:58 PM

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cbjudge

Posts: 7

Hi Natasha,

Sorry it seemed to take so long to reply. The last post i wrote wouldn't send. I'm glad someone replied to my previous post, even though it means you're in pain too. It's great to talk to someone who understands how painful this condition is, my poor husband must be gone mad listening to me. Supporting each other while we work through it sounds good to me

chat soon

C
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 05/31/2011 01:46 AM

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natashas

Posts: 6

Hi cbjudje.

I have just been diagnosed with the same thing after 3 years of, at times chronic pain. My Doctor here in Australia had not heard of this and has no idea how to treat it. Telling me just to manage the pain. I too like you have had restricted activies, which is so hard as I am a very active energenic woman with kids. I try hard not to rely on pain meds, especially anything to stong as it renders me pretty much useless for anything.
Oh how I woul love a great night sleep. I am busy trolling the net trying to find some info relating to relief but does not look to promising. It is good to know that I have not imagined this and that as much as I do not wish other people to be in pain, there are other's that understand. Movement is at times very limited, but as a general rule I canot raise my arm up at all. Any forward motion such as mopping the floor causes great pain. Anyway lets stick together and support each other. hopefully we can get more awarenes which will lead to better treatments


Take care
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 05/19/2011 10:43 PM

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cbjudge

Posts: 7

Hi, I can't believe i've finally heard of others with this condition. I've been suffering with condensing osteitis of the medial left clavicle for ten years. I've had xrays, mri scans, ct scan, bone density scan, and i've been to so many doctors and 'specialists' with no results. I thought i was losing my mind. I've had physio, acupuncture and a local injection behind the clavicle and attended chiropractors, and gone for pain management (this turned out to be anti-inflammatories, pain killers and protium). I actually went for counselling to see if i could talk myself out of being in pain. It has cost me a fortune and in the end i think i'll just have to live with it. I was told that the clavicle might be able to be pared down to reduce density, but could't guarantee pain free after surgery so the specialist said there was no point in doing the surgery (his words were "pain is not enough reason to carry out the surgery"). I have limited my life so much in the last 10 years. I can't sleep right, can't exercise right and have so many limits on what else i can do it's enough to drive you crazy.
I wish i had some good news about this condition, and i'm hoping one of you have had some success in treatment.

thank you,

C.
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 12/11/2010 07:57 PM

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gabby2321

Posts: 7

I'm wondering what direction everyone has taken. I was recently diagnosed with Condensing Osteitis of the clavicle by my doctore. He has recently started talking about surgery to remove the medial head. I've had shota in my sternoclavicular joint, which helped with the pain for about a month, but now it's back with avengance and my medial clavicular head is swelling again. Nothing seems to help. I'm not sleeping and can no longer exercise due to increased pain.
Thoughts? Suggestions?
I'd really like to know what others are doing. There's not enough research to sway me one way or another.
Thanks!
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 11/25/2009 10:14 PM

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sdp

Posts: 2

thank you! thank you! I am on the East Coast!!!!! Now I have even more to be thankful for tomorrow (Thanksgiving!). I will definitely keep you posted!!
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 11/25/2009 09:24 PM

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Michael14668

Posts: 457

I would recommend you get in contact with 3 surgeons if you are near the East Coast...1.) Gerald Williams (Rothman Institute)2.) Jon JP Warner (Harvard)3.) Joe Iannotti (Cleveland Clinic)If these guys can't help you, no one can.Best of luck, keep us posted.Mike
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 11/25/2009 08:12 PM

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sdp

Posts: 2

I was diagnosed with condensing osteitis of the clavicle via CAT scan per my orthopedist 1 year ago. I've been taking Arthrotec which seemed to help but the pain which was once only at the sternoclavicular joint has travelled across my whole shoulder area into all the muscles and into the neck. I sought a second opinion from another orthopedist who didn't seem aware of "condensing osteitis of the clavicle." I've been referred to a rheumatologist and my workup is negative other than being told I have some osteitis. The pain is so bad at night I can barely sleep. I am wondering if there are any specialists out there that I have not been able to find and would so much appreciate any info on that. I'm switching to Celebrex. It's hard to believe this is so rare in this day and age. I would be willing to travel for further testing. thank you. (also wondering if i should insist on a bone scan)
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 07/27/2009 08:57 AM

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ally7474

Posts: 1

I was also dianosed with Condensing osteitis of the clavicle (by bone scan). I have had shoulder pain for several years. I received a shot directly in my clavical joint and it has help tremendously. The bone scan showed the same problem with my right clavical even though I only have had pain on the left side. I am now having pain and a lump om my sternum and wondering if it is related. The doctors seem to be lost for an answer as to weather this is going to continue to spread or not. They have told me that there is just not enough cases of it to be sure. Has anyone recieived a better answer from their Dr.
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 07/03/2009 10:12 PM

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tgrtrnr

Posts: 21

My doctor did not recommend a bone scan. That may have not been offered because I was informed the only treatment is the surgery, which I can have because the swelling is at the end of the collarbone. If it was anywhere else I don't think this would be an option. Otherwise its just pain managment- and I had part of my coracoid process removed as well, that outcome was excellent, so I trust I should have the same good results.
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 07/03/2009 01:39 AM

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Ness

Posts: 2

MRI's failed to pick up my problem. It was only the bone scan that gave me an official diagnosis. Has your doctor suggested having this type of scan before going ahead with the resection?
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