It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Bone Disorders Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools Search this Thread
Old 12-01-2012, 04:23 PM   #16
Newbie
(female)
 
Join Date: Feb 2012
Location: USA
Posts: 7
believe2009 HB User
Re: Sternoclavicular hyperostosis

I finally had my third dose of Boniva two weeks ago and feel promised. It hasn't taken all the pain, but I'm in a much better state. I'm actually able to stretch much more without pain. I notice when I do stretch I hear a lot of popping which in turn leads to more movement in my shoulder. I see Dr. Whyte again in January.

 
Reply With Quote
Old 12-02-2012, 03:55 PM   #17
Newbie
(male)
 
Join Date: Mar 2012
Location: Pacific, Mo. USA
Posts: 8
Kirk50P HB User
Smile Re: Sternoclavicular hyperostosis

Hi Believe, Been a while since I've been on here. Got in to see Dr Whyte. They were going to do the Boniva injections but as you said it became unavilable for a time. Spoke to Eileen this past week trying to get some lab test to her so we can move foward. Getting to where I can't use my left arm due to pinched nerves in the clavicale area. Some other Drs. from St. Johns looked at me said they didn't feel they could help me. I'm having alot more bone growth and it's happening more rapidly. Alot of big knots growing throughout the sternum, rib cage and clavicles. I keep having real bad sudden shocks of pain throughout the chest, arms and shoulders. Hope things get rolling with Dr. Whyte soon. Still don't understand how he's going to reverse the bone growth or if I need to keep trying to find a Dr to help with the TOS. Hope all keeps going well with you. I'll try to post alittle more often to keep you and others up to date just incase it may help someone

 
Reply With Quote
Sponsors Lightbulb
   
Old 01-18-2013, 11:12 AM   #18
Newbie
(male)
 
Join Date: Mar 2012
Location: Pacific, Mo. USA
Posts: 8
Kirk50P HB User
Re: Sternoclavicular hyperostosis

Hi All, Just a short update. Still haven't started IV Ibandronate (Boniva) treatment. Had to delay b/c of low vitamin D levels. Awaiting lab results. Hope things get back on track. Found a site that may help some, Sternocostoclavicular hyperostosis: a review, by Matthew B. Carroll MD; http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3382681/

 
Reply With Quote
Old 02-20-2014, 03:09 PM   #19
Newbie
(female)
 
Join Date: Feb 2012
Location: USA
Posts: 7
believe2009 HB User
Re: Sternoclavicular hyperostosis

Hello Kirk and Patrick! Just wanted to check in on you guys. I just saw Dr. Whyte today. I'm feeling much better, but still have tenderness and pain, but overall doing much better. He wants to try another round of Boniva this year. He said that there are several patients coming to him now that got his name from this website. I'm happy that he is able to help. I'd like to keep in touch with you guys and support each other. How are you guys?

 
Reply With Quote
Old 03-16-2014, 10:31 AM   #20
Newbie
(female)
 
Join Date: Mar 2014
Location: Swansea, South Wales
Posts: 1
Smurfette2014 HB User
Re: Sternoclavicular hyperostosis

Hi All, don't know if you guys still use this site, but I been reading your posts about Sternoclavicular hyperostosis (SAPHO). I got diagnosed Oct 2013 after experiencing severe pain and discomfort in my left collar bone and my collarbone partially dislocating which started in June 2013. I had a couple of MRI scans and was lucky enough that the radiologist carrying out my 2nd one had seen SAPHO before and recognised what he was looking at on my scan. My shoulder specialist had never heard of it but referred me to a rheumatologist who had come across 3 patients before me with SAPHO.

I had an IV infusion of Pamidronate in November 2013 and I still get pain, discomfort and collar bone still dislocates but whereas in the beginning it was happening once a week its now more like once every 3 weeks. Shoulder feels stronger but I still have to be so careful. To date I have partially dislocated my collarbone 22 times. I am having another MRI scan tomorrow and my consultant is looking at giving me more Pamidronate.

Ive been told that SAPHO is extremely rare and that it is an auto immune disorder. Basically they don't know how it starts but your bone is made up of 2 types of cells and one of them is attacking the bone and the other is making the new bone to make up for the damage.

I'm in the UK by the way.

Last edited by moderator2; 03-16-2014 at 12:30 PM.

 
Reply With Quote
Old 04-09-2015, 02:57 PM   #21
Newbie
(female)
 
Join Date: Apr 2015
Location: Nova Scotia
Posts: 2
tappalot HB User
Re: Sternoclavicular hyperostosis

Hello! I am hoping someone here can help me with this. I am in a situation where the doctors dont know what is wrong with me and I found this while researching clavicle swelling. This is the latest thing that has happened to me. My right clavicle ball is larger than my left and is noticeable to look at. I have been in mostly chronic pain for about 7 years now. My shoulder has been painful for about 1.5 years now and then the clavicle swelling showed up about 9 months ago. I have pain in one side of my hip inside. I have a nerve (i think) on my left side that seems to run from under my shoulder blade up the back of my neck to the top of my head that seems to get pinched or trapped and I end up not being able to even sit down as it puts pressure on it and the pain is just too much. I will get wicked stinging stabbing pain in the clavicle swelling. It is not red and it doesn't like to be played with, that can aggravate it sometimes. I used to have wicked jaw clenching and pain but since wearing a night time bite guard that has lessened quite a bit. I dont sleep well as I cant sleep on my shoulders anymore as the pain wakes me up and if I do end up on the right side sleeping for too long I wake up and it is very painful to move to get out of the position. I dont have a lot of strength on that side in my arm or shoulder sometimes. I am 46.5 years old. I dont have any pustular stuff on my hands or feet. Anyone that has this condition, if you dont mind, could you please list your signs and symptoms starting from the beginning to also see what kind of progression has happened if any? It would be very helpful. Also what kind of tests etc could I ask my doctor for to rule this out or in Thanks for your help!

 
Reply With Quote
Old 04-09-2015, 04:12 PM   #22
Newbie
(female)
 
Join Date: Aug 2011
Location: Big Rapids, Michigan USA
Posts: 7
SimpleSue1545 HB User
Re: Sternoclavicular hyperostosis

I had bone scans done and it helped find the problem.

 
Reply With Quote
Old 04-09-2015, 05:01 PM   #23
Newbie
(female)
 
Join Date: Apr 2015
Location: Nova Scotia
Posts: 2
tappalot HB User
Re: Sternoclavicular hyperostosis

Thank you for our reply. What kind of scan? CT? Also what were your symptoms and how long did you have them? Did they progress over time? Thanks for your help!

 
Reply With Quote
Old 04-17-2015, 04:26 AM   #24
Newbie
(female)
 
Join Date: Aug 2011
Location: Big Rapids, Michigan USA
Posts: 7
SimpleSue1545 HB User
Re: Sternoclavicular hyperostosis

I have not forgot, I will be back soon i need to find the name of the scan it is not a CT. it is a Bone scan.

 
Reply With Quote
Reply Reply

Similar Threads
Thread Thread Starter Board Replies Last Post
sternoclavicular hyperostsis texshe Open to All Other Health Topics 0 06-09-2009 04:37 AM
sternoclavicular joint dislocation shelbycharger Rare Disorders 0 03-13-2007 08:35 AM
HYPEROSTOSIS FRONTALIS was interpreted by technician Nancy60647 Rare Disorders 0 08-29-2006 07:31 PM
Painful and swollen sternoclavicular joint ant.hurst Arthritis 1 08-05-2006 10:51 PM
sternocostoclavicular hyperostosis syndrome leanwate Rare Disorders 1 07-15-2006 07:40 PM




Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 11:57 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2015 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!