I have been diagnosed with sternoclavicular hyperostosis (Sapho) I have trawled the internet and only found 1 person with exactly the same symptoms as myself who last appeared on this site in 2006 - does anyone have this and can you give me information? Thanks
Hi there, I cannot find anything much about this disease, have you found anything else out about it since you last posted here? I am trying to get a doctor here to take me serious, check out my symptoms so I can get an accurate diagnosis. All my symptoms point to this, but without a doctors help, I cannot go any further. Don't even know what tests to ask for to help with the diagnosis. What tests did you take to get your diagnosis? What type of doctor did you see? Thanks for listening.
I've had sternocostoclavicular hyperostosis since 1977. It ws not properly diagnosed until 2002. An Orthopedic surgen at BJC Hospital in St. Louis, Mo. diagnosed me. I went to the Mayo Clinic in Rochchester, Mn. for conformation of this and they concurred with the doctor. Although it does show on x-rays a bone scan is more conclusive coupled with pathlogic finding of granulation tissue and fibrosis helped to confirm this. Hyperostosis will lead to other conditions such as Thoracic Outlet Syndrome. I suggest you aggresively persue this as much as possible. If I can be of any help feel free to reply.
Last edited by Administrator; 03-02-2012 at 11:35 PM.
I too was recently diagnosed with this terrible and painful disease. I'm working with a doctor in St. Louis who is taking the time and energy to learn more about this rare disease. I'm starting Boniva injections. They are finding a link in helping those with Sternoclavicular Hyperostosis and taking this medication. Has anyone tried this type of drug to help ease the pain and progression?
Believe2009, I would be very interested in knowing what Dr. in St. Louis you are working with. My hyperostosis is in advanced stages, I've had it for 35 yrs. This would be the first Dr to ever show an interest in learning about this. Even if he couldn't help me, perhaps this could help others with a less progressed condition. I've had 17 surgeries over the yrs, July 5 will be the 18th. This one is #4 for thoracic outlet syndrome (TOS). TOS is a pinched nerve condition induced by the abnormal bone growth of hyperostosis. Symptoms are pain, numbness, hyper senitivity of the nerves in the hands, arms, neck, chest and head. There are so many things that it's hard to list them all and most Drs don't know anything about this. One very important one is the possibilty that bone growth on the clavicle could put pressure on the muscle around the phernic nerve (this nerve controls the diaphragm which activates the lungs) causing the lungs to not function properly. Damage to this nerve is very hard to recover from and could cause lung failure. Working with a Dr. that shows interest in this would be a great plus for me and others that suffer from this. As you can see I live in the St. Louis area.
Thank You, Kirk50p
Last edited by Kirk50P; 06-27-2012 at 11:08 AM.
Reason: Put name in Thank You
I've had these symptoms for 10 years now. Doctor after doctor, test after test and nothing. I finally was diagnosed last year by a radiologist at St. Luke's Hospital. Well, so I I then had a diagnoses with no one to help me. My wonderful mother called 100's of doctors to see if they knew about this disease or had an interest. Alot of doctor's were very honest and told her no. She finally got a hold of Dr. Michael Whyte down at Barnes. He runs the Bone Disease center. He told her that he only had one patient with this disease, but had an interest in it. To be honest, when I met him I got the same feeling that he wanted to help me but didn't know how. I left his office not feeling very hopeful, but within a week he called me up. He took my case to a convention and read many research articles and found that many people found rapid pain relief and remission from the ingrediants in the drug like Bonina. I'm in the process of getting Boniva infusion. I noticed a small relief. I go in at the end of July for my 2nd dosage and then in 3 more months I'll have my last one.
There's a coincidence for you, in Feb. my wife was surfing the web for a Dr. for my TOS condition and during that search Dr. Whyte's name came up as a possible Dr. to help the hyperostosis. When we called he was so backed up that my appointment isn't until Oct. I've been on his cancellation list since Mar. Thank you for the info. Sometimes it hard for other people to understand when we're haveing a bad day. We don't look like we have a disiblity, but there are days when I can hardly move let alone get out and do things. If anyone ever needs someone to talk to, please feel free to post on Health Board. I do think its easier when we have someone that is going through the same thing as we are. Thanks again Believe.
You are so right Kirk. I feel like I've been all alone with this disease. As scared as I am of the future, it brings me peace to talk to you and others who share this horrible disease. I'm going to continue to stay positive and try to know my limits day by day. I'm so happy to hear you are going to Dr. Whyte too. I know he'll be interested. Good luck on your surgery on Thursday. You'll be in my thoughts and prayers.
The Following User Says Thank You to believe2009 For This Useful Post: Kirk50P (07-13-2012)
Believe, Thank You for your kind words. I had my surgery I don't think we accomplished very much. This Dr. seens a little hesitant to do the surgery thats needed to relieve the symptoms I'm having in reguard to the nurves in my chest and arms. I'm looking so foward to seeing Dr. Whyte. Hope everything is good with you. Thanks for the friendship and support.
Well that sounds like a total bummer. I guess its really hard for doctors to know how to treat us when they don't really even understand this disease. Do you know anyone else who has this other than me? Also, do you know how you got it? I've been asked by so many doctors if I was in an accident or severe sports injury. They are always so shocked that I hadn't been. I just kinda feel at this point its something I was born with? I guess.
I go to Barnes for my 2nd Boniva injection on July 27th. I'm really hopeful. The first one seemed to take the edge of my pain and I'm hoping it just gets better after my next two injections. It seems as my pain is improving, but feels worse at night. My husband has to massage my shoulder. I noticed my shoulder pops at times relieving the pain. Kinda like when someone pops their knuckles. Does your shoulder do that?
It sounds like you have a very supportive angel of a wife. My husband is the best too. He is so understanding. I'm really sweet in nature, but at times the pain is so great that I get really crabby. I noticed that when things feel really flared up and stiff a heating pad does wonders for the immflamation.
I still can't believe you are going to Dr. Whyte too. What are the chances?!?:angel
Hi Believe, I've been trying to find others with this for yrs. My research indicates that there are only about 54 cases in the US. Hyperostosis is reguarded more as a condition than a disease. A condition being more of a physical disorder. Better described as a medical condition involving a disturbance to the usual functioning of the body. Whereas a disease is a disorder with recognizable signs and often having a known cause. I apologize for being so technical in the definition, but I've been corrected so many times in the past by Drs. and even by the Mayo Clinic because of hyperostosis' unrecognizable signs and unknown etiology. More importantly when people hear the word disease they think you have something they might get and tend to back away. Seriously I've had this happen to me. A lady was talking to me in a waiting room one day and ask what was wrong with me. When I said I have a rare bone disease a different lady got up and told her son to come on and moved to the other side of the room.
I've been told that hyperostosis is more prevalent in Germany and Asian countries. During Vietnam I was stationed in Thailand. Approximately one year after my return to the states the pains in my chest started and a yr later a large knot started to grow on my clavicale and the clavicale dislocated itself. No one could figure out why. About a yr after that the Air Force discharged me with chronic pain syndrome with possible TOS.
I'm fairly sure it's not something you were born with. Your shoulder popping could be a sign of bone growth. I don't want to scare you but abnormal bone growth is the main symptom of this condition. When the bones grow they push on the muscles and nurves causing pain.
Like I said I don't want scare you because I see alot of very good news here. The odds that you and I are in the sameplace and going to see the same Dr. is amazing. My medical records are almost 1000 pages dated back to 1977. They document everything that was done with me over 35 yrs. I'm trying to get them some what orginized so that Dr. Whyte may be able to use them to help you and others not go through what I have all these yrs.
I'm one of those people that when I hurt, I'm real quiet and want to be left alone. My wife is always well intentioned, but when I hurt I can be crabby also and want to be left alone. Hope all is going well for you.
Last edited by Kirk50P; 07-14-2012 at 12:49 PM.
Reason: spelling corrections
Hi Kirk50P, thanks for sharing your experiences. I too was just diagnosed with Sternoclavicular Hyperosotosis. Would you mind sharing what type of treatments for S.H. that you have undergone and if any have helped? Thanks again - we really appreciate it!
Hi Patrick, My SH had gone undiagnosed from 1977 to 2002. During this 25 yrs. Drs., all well intended, were treating the symptoms rather than the condition. Majority of which were surgeries for thoracic outlet syndrome, TMJ reconstruction and rib and costal tissue removel, all of which were bone related. Though these surgeries would temporarily relieve the pain in those areas, thus making them worthwile at the time. The condition was not being addressed. After being diagnosed in 2002 I was told that there is nothing that can be done except pain management.I've been to pain management clinics and all have agreed. Even the Mayo Clinic in Rochester, Mn. said pain management was the only thing I could do. This condition is very painful at times, however it is something one can over come. I have developed a very high pain tolerance over the yrs. I was able to have a 30+ yr. career in construction. I have had to resort to pain meds in the latter stages of my condition and it has helped. As you can see through my post with believe2009 I am hoping that Dr. Whyte may be able to help, or at least try to help. Sorry I couldn't give you better news, but this such a rare condition that the profit margin doesn't justify the cost of research. Sad but true. Please stay in touch on HB and I'll be sure to keep you posted on any progress I may learn.
Hey... Just checking in with you to se how you were doing. I was on my last round of Boniva IV injections with Dr. Whyte and they called to cancel my appointment because Boniva is no longer in sight. I had another flair up last week. I was thinking it was a pinched nerve in my uppper back but my husband thinks its all related. How did your appointment go? My husband has been researching other doctors and found one that is possibly going to share what he knows with Dr. Whyte. I think his name is Dr. Resnik? I'll have to ask my husband when he gets up. I'm really curious to see how your appointment went. Talk to you later.
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.
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
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/