Comments for case 34

.Comment 001

Name: Cindy Swoboda,Stuttgart-Germany,Fax# 011-49-711-423707, EMail#113066.3652@compuserve .com. I was diagnosed with Osteitis condensans illii in the pelvic joints, along the spine. I have periods of pain which usually last 3/4 of the year, the warmer months being better. Do you know anything that could help me or therapy or operation? I am 36 yrs. old and take Voltaren Dispers when the pain is too bad. Right now I am pófree. Would appreciate hearing from anyone about this. Thank you!

Comment 002

Name: Beverly Crush, Raleigh,NC Fax 1-919-878-0634 eMail: info@Elinvar.com I was diagnosed with osteitis condensans of the right sterno-clavicular joint two years ago. I ahve associated pain all along my right side with intense pain in the mid-line of the right clavicle. I also experience pain in my right shoulder, elbow, forearm, and have stiffness in my hands and fingers every day upon waking. I am concerned about tcmpact of hormones on this condition. The physicians at University of Virgina Medical Center and Duke University Medical Center seem to know very little as to causation and subsequent long term treatment. I currently take Ultram 50 mgs. every 4 hours for pain, which is at times is INTENSE, and dibilitating. I also take anti-inflammatories daily. Any information you can offer regarding this condition would be greatly appreciated.

Comment 003

My Name is Robin Moulding and I was diagnosed with Osteitis Condensenns ten years ago at the age of 26. I was told by my doctor that my 2 pregnancys caused the condition. While everything was stretched and moving around my bones were able to grow much more dense. After the two pregnancy's when everything shrunk back to where it belonged. The bones were to large and now cause painful swelling. I was told it was a form oåhritis and am taking Motrin 800 mg to relieve the swelling. I also find I have to keep my weight at the right level. If I gain 10 extra pounds the swelling increases. I would also love to know more information about this conditon and how it will affect me as I grow older. My email is RobinMould@aol.com

Comment 004

Judy Richards E-mail address: jjrichards@portup.com Whenever I have had any abdominal or back x-rays done, the diagnosis of Osteitis Condensans Illii is on my report. Various doctors have stated this is just a congenital defect, and none have been concerned, but I am wondering if it is related to my chronic back pain. I am new to the internet, so decided to look this up, since I have been unable to find anything þedical books about this condition. Does anyone have any information for me?

Comment 005

Kathi Gaddy -email: kathigaddy@aol.com I am 31& have osteitis condensans of the left clavicle.It seemed to start 4 yrs ago while using weight mach at the gym. The pain is tremendous. I am currently on Fosamax, a bone stablizer. So far it hasn't seemed to help. Arthrtec seems to ease the pain somewhat. The thickness of my bone is extending up my clavicle. Another MRI has been ordered. I'd like information or a place to researÉAny comments are welcome.

Comment 006

My e mail address is kathy@jccteam.com. My name is Kathy Glass (phone number is 281-478-8911). I tore the ligament that holds my collarbone to my sternum in 1993. It has gone out on me again in 96, 97, 98 and 99. I have been told by 2 specialists in Houston, Texas that this is a permanent injury (I slipped and fell on muddy pavement) and that there is no surgery to correct it. I can do little physical activity (I used t}de horses a lot and was very active). I now struggle to keep my job. I work on the computer all day. I am 47 years old. If you know of any successful surgury for this injury, I would be very appreciative. My address is 1007 S. Mason Rd. #705, Katy, TX 77450. Thank you. I feel sorry for anyone else with an injury similar to mine because it is to live without a life and very little study seems to have been done. I hope more will be done in the future.

Comment 007

My name is Kathy Glass and my e mail address is kathy@jccteam.com. UPDATE - Everyone on this page experiencing pain in the clavicle joint at the sternum (called the sternoclavicular joint) I believe has a related injury. My hand also feel numb and stiff. On Monday of this week I was numb in my arms, my blood pressure was elevated, I was faint and I hurt so bad in my sternum and right clavicle. I am going to Dr. Gabel in QHouston Medical Center. He is in the Hopestar Orthopedic Group. He says my injury is very rare (hasn't treated one in years) and that he wrote a book/paper on it. I said it's not so rare as people think - it's just that no one can find treatment. If you hear of anyone with a severely sprained collarbone at the sternum - they usually disapear from work - I haven't been able to track them down. Evans, a football player just recently had one. I'm trying to track him down too. The best doctors work on football players for the NFL. Just wanted to add this. I think we should form a group. Maybe that's what this web page is all about. Thank you for creating it.

Comment 008

UPDATE August 25, 1999, from Kathy Glass, e mail address kathy@jccteam.com - Went to see Dr. Gabel yesterday at Hopestar Orthopedic Group in Houston Texas. He said I didn't have ligament damage, but that my sternoclavicular joint showed arthritis. He gave me a cortizone shot. He told me there were other options if this didn't work for me - one being surgery where they graft tissue over the bone to promote new growth (no po screws or wires). He said he thought I would ride horses again. I feel so happy. I have been to 5 doctors. 2 general practitioners told me it was an insignificant injury. The first orthopedist told me it was an insignificant injury during visits in 93, 96, 97, 98, and then in 99 told me there was no treatment and that I would just have to learn to live with it. He was the highest recommended surgeon at Memorial City Hospital in Houston. The second orthopedist told me he wasn't sure what other doctors were up to, but as far as he knew there was no treatment. He is a shoulder specialist and treats the Houston Rockets. Dr. Gabel was the last. IF YOU CAN'T GET TREATMENT, GO TO ANOTHER DOCTOR. YOU HAVE NOTHING TO LOOSE. I've been in pain since 93. Before that I rode horses constantly and was very athletic. At this time, I am struggling to keep my job and I can do no physical activity. I go to work and shop. Exciting for some, but not a quality of life to me. I wish everyone luck. By the way, I have taken day pro for years off and on and it helped temporarily (except this time) but it doesn't cure anything as it's just an antiflammatory. GOOD LUCK EVERYONE. I WILL KEEP YOU UPDATED.

Comment 008

Comment 009

2/11/2000. I have had a lump right below my collar bone for 10 years. My dr. has ignored my symptoms, told me to live with it, and I needed to go on antidepressants. I have been very active, horses, pottery, working at a wildlife rehab center, and doing office work for my husband. I have been going to a chiropractor for years, and he finally told me I needed to have this checked eliminate the possibility of tumors, cancern the last 4 months I've had an MRI, bone scan, x-rays and finally a CT/needle biopsy. The final conclusion was osteitis condensans. I still ride but only about 1x/month, and cleaning their stalls is very difficult. No pottery. Can't do much at the center, other than clean/feed animals, because of numbness in my left arm. My chiropractor has been treating me with acupunture treatments (which have given me back full range of movement in my shoulder), message, and ultra sound, with gives me great relief. I have to go at least 1x/week now, but it's the only way I can stay active with manageable pain. I take viox when I absolutely need it, and have a tens unit that I use between treatments. Have found that taping my shoulder (back to front) helps when I have spasms. Don't know if this will help anyone, but I hope so. My e-mail address is fsangel@aol.com.

Comment 010

Betty Strike E-mail Strike91@webtv.net In December I could not lift my right arm or move it in a backward motion. My doctor gave me cortisone shot (which helped), but also sent me to an orthopedic specialist because he was concerned that my right clavicle was red and swollen. I was diagnosed with osteitis condensans and told to take Vioxx daily. I haven't taken it because I have a history of allergic reactions to anti-infla1ory drugs. I continue to have pain and I am unable to move my arm in a backword position. Has anyone been helped by taking Vioxx?

Comment 011

8/8/00 This is from Kathy in Katy again. Status: have been to five good specialists in Houston and still no treatment. Had a cat scan. Showed arthritis in sterno clavicular joint. Cannot ride my horse or do anything physical for 1 and 1/2 years. Used to ride competively and was very active physically. All I am getting is the run around. I want to know - is there any effective treatment or surgery out there for a severƒinjured sterno clavicular joint? I am in the process of contacting 3 Doctors (2 in Chicago and 1 in New York) but hey - doesn't anyone in Houston know how to treat this? I do not believe in taking anti inflamatories anymore or cortizone shots (neither one have helped) because they cause irritation of the stomach and supression of the immune system (arthritis is an illness of the immune system and is agrivated by stomach irritation which anti inflamatories cause). I am trying alternative medicine now and pursuing still more Doctors who are more current. Would love to hear from a Doctor about this. Is there a successful treatment or surgery for a severe injury to a sterno clavicular joint? Lets hear from you!!

Comment 012

My name is Diane Doebel (ddoebel@hotmail.com)and I was diagnosed with condensing osteitis of the clavicle about 5 years ago. I have had physical therapy to help keep the shoulder complex mobile and to help with keeping full rotation of the arm. I also went to a pain clinic and did not feel that the medication was helping with the pain. I am currently being seen at the University of Michigan. The next step is to remove part of the clavicle. Has anyone had this procedure done and had success? The orthopedic doctor told me that there is a 50% success rate to alleviate the pain. I am also considering acupuncture to help with pain management. Please e-mail me if you had success with either surgery or acupuncture. From the information that I have read on this condition, a biopsy of the clavicle is the only method to confirm this condition.

Comment 013

9 27 00 from Kathy in Katy. Would like everyone to read article by searching "condensing osteitis" called "Mercury-Free Dentist/Holistic Dentist: Milton McIlwain, DDS". To the Doctors - is there any link between teeth and this clavicle condition? Is anyone out there studying this? Perhaps Dr. Price in this article has more information about whether or not there is a link. Just a comment. Also - would like to know from the woman having part of the clavicle removed - could you tell me what part of the clavicle and specifically what the procedure involves and who your Doctor is who is performing the procedure. THANK YOU.

Comment 014

To: Kathy in Katy: Dr. Kuhn is the physician treating me at U/M in Ann Arbor Michigan. He is located at Domino Farms -ortho dept. We have talked about removing just the part of the clavicle that is affected with the osteitis. He said that there is enough supporting tissue to keep that part of the shoulder intact. It would be about a 1-2 inch piece. I'm not so sure I want this done, as there is only a 50-50 chance of reducing the pain. I am having a bone scan next week and Dr. Kuhn told me that the more the section of the clavicle that "lights up" (as he put it) the greater relief I would have from the surgery. I'm not so sure about this. I need to talk to someone who had this done before I even think about it. I need to talk to someone who has had relief from surgery or accupuncture. Since this condition is on the "rare" side, I really think that the groups of physicians that I have seen are sort of using the process of elimination to see what treatment works. I'm a teacher and I have found that stress and standing and moving around all day has a negative impact on my shoulder.Any thoughts on this?

Comment 015

This comment is to Betty Strike:On my last visit to the orthopaedic doctor, he prescribed Vioxx and it really seems to help. It doesn't take the pain away completely, but it makes it less severe and gives me more mobility. It doesn't make me sick, either, as some anti-inflammatory medicine does.I am taking 25mg per day.

Comment 016

October 24 2000 from Kathy in Katy. I have spent over 90 hours on my lunch hour researching this on the internet. I have found no successful surgery or treatment for this injury or for any other injury to this part of the body (sternoclavicular joint between clavicle and sternum). If you add up all the patients with injuries to this part of the body, the group is HUGH. I can only hope that some other researcher is doing the same thing at this time to try to come up with a way to operate on this part of the body successfully. I have read about many major complications with the present surgeries that have been done recently. Recently, I have noticed more professional athletes being diagnosed with injuries to this part of the body. Before, they just called it a sprained collarbone or something else because they didn't know what to call it. I run across patients a lot who have frustration with pain in this area of the body and can't find an answer, the same as us. I believe that within the next five years we will have an answer. Also, I have started getting massage on that area. It is the only relief I have ever had for this injury. They tried accupuncture on me, but I started to faint and they didn't want to continue. God bless all of you out there.

Comment 017

11/2/00 From Kathy in Katy. Has anyone ever had a needle biopsy done?

Comment 018

November 24, 2000. After having all the test, the needle biopsy confirmed osteitis condensans was the diagnosis. I must say, the needle biopsy was extremely painful, as you are awake through the procedure. It took almost an hour. Recently I have been diagnosed with fibromyalgia. Don't know if these two things are related. Has anyone else been diagnosed with fibromyalgia. It seems to me that after reading Dr. St. Amand's book, that the osteitis condensans could have been a result of the fibromyalgia.

Comment 019

Jennie Ward email jward@mnic.net

I was diagnosed with Osteitis Condensans Illii about 10 years ago. A clinical exam was followed up with an xray which disclosed the bone damage. My doctor believes my condition was caused by my 2 difficult, painful pregnancies during which time I carried large babies and had difficult deliveries. The condition affects my lower back area involving my pelvic "crests" and around my sacroilliac joints. Often, my pain is severe. I tried several prescription anti-inflammatories but they made me ill. Currently I take Ibuprophen. I plan to ask my rheumatologist if Vioxx or Celebrex is worth a try. I am looking for relief from the extremes. Pain management - keeping the pain at a 3-5 (as opposed to 9-10 where it has been lately) is my goal. I would appreciate hearing from anyone with similar experiences and success with managing this pain.

Comment 020

Dec 13,2000 - Kelly McDonough, Email: ro0695@aol.com. I was diagnosed with Condensing Osteitis of the left clavicle and sternum, finally in October of 1998. After seeing numerous doctors who mis-diagnosed my condition as tendonitis, bursitis, lyme disease etc etc. I found an orthopedic surgeon who ordered a bone scan and MRI which confirmed the disease. I tried the first stage of treatement medral dose pack (cortisone) with no luck, he then took a biopsy of the bone in November of 98 and injected steriods - it helped for about 1.5 months. In May of 1999, he sucessfully removed a portion of my left clavicle. The days of blinding headaches, neck pain, numb fingers etc etc were finally over. He did advise that the surgery held no guarantees, but I was to a point that I was eating ultram regularly with no relief. The surgery did work and I have been blissfully pain free. Yes I have a scar and a depression - if you have pronounced collar bones - it would probably be more visible. But the choice of pain and no life to no pain, a scar and a life.. I chose the surgery. I will note that when the weather changes (ie. cold and rain) I do feel it in my shoulder and collar bone - but it is arthritic pain and very tolerable.

If anyone has questions please email me and I will share my information. I don't want anyone to ever go through what I did.

Comment 021

My name is Debbie Fischer. I am now 38 years old. I live in Washington state. E-mail address is fischer4us@yahoo.com.

I was in an auto accident in 1994 which injured my back, shoulder, ribs and arm. The injuries got progressively worse. I was very active prior to the accident with weightlifting, skiing, golfing, softball, and coaching boys baseball, to name a few. As the years went on I lost more and more use of my right arm and was in extreme pain throughout the whole shoulder girdle, ribs and rt. arm. After 30+ cortisone injections, bone scans, numerous meds,and years of physical therapy,it was determined that I had arthritis in my SC joint. I went to a Dr. at the University of Washington who was experienced with this type of injury but he refused to treat me since this was caused by a motor vehicle accident.

I finally hooked up with a wonderful Dr by the name of Dr. Jennifer Carl. She did a massive amount of research and tried several courses of treatment. Around November 1998, I was finally referred to Dr. Richard Kirby who works at Providence Hospital in Seattle. He is an Orthopedic Surgeon specializing in shoulders. He was very helpful in setting a new course of treatment. We exhausted all options except a surgical procedure. I was so desperate and had no life left so I opted for this somewhat risky surgery. He explained that he would remove the SC joint and a small part of the clavicle. The risk is that he is cutting through bone and has to stop before hitting a main artery. I had the surgery in February 1999. It was a longer recovery than I anticipated but after 4+ years of CONSTANT PAIN it was worth it. There is no joint replacement for the SC joint so I am without it completely. I do not regret and as a matter of fact I am glad I had the surgery. My activities will never be what they were before the accident but I am still doing much more than I did prior to the accident. I do still have occasional pain, my arm still goes numb and I will never have full range of motion. If I had it to do over again - I would definetly have the surgery. I felt at the time that desperate people do desperate things and that is exactly where I was at. I would be happy to give more information upon request. GOOD LUCK!!!!

Comment 022

February 15, 2001 From Kathy in Katy. After 2 years of research on the internet, I have reached the conclusion that the only option for an injured sternoclavicular joint is a clavicle resection. They remove part of the clavicle and reattach the ligaments of your clavicle to your rib cage instead of your sternoclavicular joint. Dr. Michael Wirth in San Antonio performs this surgery. It is 50% effective. There is no way to replicate the ligaments of the sternoclavicular joint at this time nor the joint itself. As I am almost disabled at this time I prefer to wait until the surgery is more perfected/unless I become completely disabled and at that time I will have the surgery done. I was misdiagnosed with tietze's syndrome and sprained collarbone in 93. I remember my collarbone fell down out of joint shortly after the injury and then later went back into place. They say this injury occurs in a small percentage of the population, but I believe they cannot be sure of what the true percentage is since there is no much misinformation and misdiagnosis out there. I am constantly running into people on the internet who are told "go ahead and lift weights, etc. since it is not a severe injury". Any injury that cannot be surgically fixed (with good average recovery rate) should be taken seriously. As one who has suffered since 93 I can attest to that. Thank you for the comments on surgeries that turned out well. I am very happy for your outcome. There are a number of professional athletes sustaining this injury at this time (NFL etc.). Perhaps this will stimulate more research into this area as it is desperately needed and this is a hideously disabling injury. Luck to all. PS If I can the money right now I would create a web site entitled "The truth about sternoclavicular joint injuries". There is a lot of misinformation on the internet that states that these injuries usually always heal/that is not the case. I would also like to count people with associated injuries to this area of the body/I suspect the numbers are substantial. If I ever finish paying off my medical bills you will see my new web page soon. Until then, God bless everyone...

Comment 022

Comment 023

Jonesd388@cs.com carole I have had pain in the sternoclavicular joint with no trauma. I was put through 4 weeks of physical therapy and told that my left arm is very week for some reason. I basically was told to deal with it, get cortisone shots or come back for further evaluation!!!

Comment 024

April 4, 2001 From Kathy in Katy. For all you osteitis condensans people - there's some interesting reading on the internet under SAPHO syndrome. You can search for it by keying in SAPHO and sternoclavicular without the quote marks. Aparently they know alot more about this type of injury/illness in other countries than they do in the states.

Also - good news - the NFL now lists sternoclavicular joint injuries under their definition of a sport injury (among many others). 2 NFL players have been recently diagnosed and 1 canadian hockey player. Wish we could find a spokesperson to bring attention to this. Searching for this information is exhausting. We need a focal point. All the information is spread out everywhere. >>>keep on trucking you guys<<<

Comment 024

April 4, 2001

ONE MORE THING...I was diagnosed in 1993 with Tietze's syndrome even though when I stood up my collarbone fell down out of joint at the sternum-- I'm no Doc but sounds a little like a dislocation to me. They say this injury/illness exists more in Japan and Scandanavian countries -- or could it be that they just diagnose and treat it better?

Comment 024

April 4, 2001

From Kathy in Katy - ONE MORE THING...I was diagnosed in 1993 with Tietze's syndrome even though when I stood up my collarbone fell down out of joint at the sternum-- I'm no Doc but sounds a little like a dislocation to me. They say this injury/illness exists more in Japan and Scandanavian countries -- or could it be that they just diagnose and treat it better?

Comment 025

May 8, 2001 from Kathy in Katy - GUESS WHAT FOLKS. THERE ARE 2 DOCTORS AT THE UNIVERSITY OF MICHIGAN WHO HAVE BEEN GIVEN GRANT MONEY TO STUDY THE RECONSTRUCTION OF THE STERNOCLAVICULAR JOINT. ONE IS NAMED SPENCER AND I FORGET THE OTHER. THE ONLY SURGERY AVAILABLE AT THIS TIME IS NOT RECONSTRUCTIVE - IT IS A SALVAGE OPERATION. KEEP IN MIND I'M NOT A DOC SO FORGIVE ME IF I LOSE SOMETHING IN THE TRANSLATION TO LAY TERMS. THE UNIVERSITY OF MICHIGAN IS IN ANN ARBOR. YOU CAN PULL UP INFO ON THE INTERNET ABOUT IT BY KEYING IN "GRANT STERNOCLAVICULAR UM" I THINK.

Comment 025

Comment 026

joe@casamortgage.com I had Dr Wirth do a sc resection in December of 2000. So far I have limited use and strength, but have benefited greatly from reduced pain. My sc joint was so painful i could not enjoy day to day life. Now after the surgery my greatest complaint is that it interrupts my sleep occassionally.

Comment 027

Hi! my name is Jody E-mail is sunshine@hoosierlink.net I had a lot of pain in my left clavicle and went to doctors for a year and a half before they did surgery and removed my first rib and my collar bone I'm now pain free but still recovering from my surgery as it was only in February. My doctor was from I U Medical Center in Indianapolis IN.

Comment 028

Michelle Beaver, michelle@wilsonirr.com. I am a 30 year old who was just diagnosed with Osteitis Condensans LLii to my left hip joint. I have one child. I have had chronic pain in my low back for the past 11 years. About a year ago, it moved into my hip. At times, it can be very debilitating if I overdo my physical activities. I have had to see a Chiropractor to help ease the pain during this time. My Dr. put me on Celebrex and during this time the pain was very little, but the side effects were nausesousness and diaharea. My insurance denied the claim for celebrex so we will see next week what my dr will prescribe for me. I have taken Relafin off and on over the years for my low back pain. Any information or shared comments on this would be helpful. I've read alot of people with problem with the clavicle, but none with the hips. Thanks.

Comment 029

To Michelle Beaver(from Diane Doebel): If you want to keep taking the Celebrex, ask your doctor for samples. My aunt gets all of her celebrex through pharmeceutical samples each month. She cannot pay $220 for the monthly prescription.

Comment 030

July 6, 2001 from Kathy in Katy. Is the reason so many illnesses show up in the sternoclavicular joint (TB, etc.) and also why some people have pain without an injury because the lymph nodes clean out the infection from the body and every hour dump into the subclavian arteries which supply the sternoclavicular joints? This could explain why infection in the gums, teeth and sinuses make this condition worse. IS THERE A DOCTOR IN THE HOUSE WHO CAN ANSWER THIS QUESTION - THEORETICALLY SPEAKING? AN ENDOCRINOLOGIST MAYBE? Why is it that everyone knows more about thoracic outlet syndrome and fibromalgia than they do about a sternoclavicular joint injury. There are athletes in this country playing physical sports with this injury and they are unaware that there is no successful treatment. Someone needs to get on the ball here and get the story straight. There is too much misinformation on the internet and people are going to be permanently hurt over it. WELL I GOT THAT OFF MY MIND. Happy 4th of July everyone.

Comment 031

To Michelle Beaver from Jennie Ward: jenward@hickorytech.net 7-16-01 I also have oci in the low back area - on both sides around my si joints. It is very painful. I did get a 3x a day prescription for indomethacin which I take only 2x and it takes the edge off. It hasn't made me sick like some other meds. I tried vioxx but it didn't work as well for me. I don't find much info on oci of the low back either. My rheumatologist diagnosed it after an xray to follow up on severe low back pain.

Comment 032

email aksteph@yahoo.com I was also diagnosed with osteitis condensans ilii - I have not had children, but have had a few traumatic injuries in the area. I went to 2 orthopedists who gave me drugs (celebrex and vioxx) and told me there was nothing that could be done. The celebrex helped ALOT and I had no side effects from it - I just take 1 dose at night. I don't want to take drugs the rest of my life so I went to a sports med dr. who after some poking and prodding felt that a lot of my pain during the bad flare ups was coming from the muscle around the ilium - that condensed bone irritates the muscles causing severe pain. He gave me lidocaine trigger point injections in the attachment points of the muscles near the SI joint - the pain is really bad for a few days but then I have been able to go a couple of months without major pain. Also, I have found that moving really helps keep the pain down - I cannot do impact sports but am able to bike, swim, cross country ski and lift weights...Staying active and stretching a lot has done me a load of good!! The pain at first may be excrutiating but it gets better! I still have days when I can't pick my foot up more than two inches off the floor, but they are a lot less frequent and I don't have to take drugs daily. I am still looking for more information about this condition and more long term treatment/prognosis.

Comment 033

Comment 034

Christine Topham email christinetopham@mindspring.com Okay I have just found this site and I am writing in desperation. I have just come home from the hospital with my second injection of steriods to my Sternoclavicular Joint. I have had a bone scan but no biopsy. After reading the comments oin this board I am convinced that I have Osteitis Condensans. I am a 45 year old female with Fibromyalgia, I have had the pain in my shoulder for the past year and it has been progressively getting worse. I can't sleep at night, lift my arm or exercise, because tha pain now radiates down through my forearm and into my hand. I live in Georgia. My Dr. has said that there is nothing more that he can do. Judging by the comments by everyone, I get the impression that the medical community feels the same way. Does anyone out there have any help, hope or suggestions. Does a drier climate help with this condition? Please email me I really need some guidance. Thanks Chris

Comment 035

Dear Dr. I represent a firm in New York in search of an Orthopedist to give a second opinion on a patient living in Ramstein, Germany. Would any of the physicians be interested in performing the examination and providing us with a report of the findings. We would send you the medical records and pay you directly for this service. Please let me know if you are interested. Thanks. Sincerely, elyssa burack, esq. EBurack@jurisSolutions.com

1-877-935-8750

Comment 036

from margriet92@hetnet.nl to kathy Hello Kathy. I read your comment on the internet a few weeks ago. It looks very similour to my case. My name is Margriet de Vries I live in the Nederlands a small country in Europe. My age is 29 years. Sinds august 12 in 1999 I have problems with my shoulder. In the beginning they thought it was a small injury. In my vacation I ride on my motorbike with my friend behind me. In was in Austria. When I came home the doctor gave me diclofenac 50mgr. I did not help. Two weeks later he gave me other medication. I stil went to the sports (ty-bo) and felt with the warming-up that it was not feeling good. He send me to the hospital in Groningen where I saw dr. Deutman a specialist in Othopedic. He said to me that it was an injury that he could not help. He once did a operation on a female. It was no succes. The pain was stil there. And the pain on the outside was very painfull because the scarf was very large. He sented me home. I went back to the doctor. He gave me a cortizone shot in my sternum, witch helped for two months. Afther he did that the pain came back. Twice so hard as before. I was very disapointed. Went to see my doctor again. He sent me to de medical center in Groningen to dr. Meins. She would operate me but there was a waitinglist for 8 months. She took x-ray's and a mri and a bone-scan. On the mri the could not see anything. But on the bone-scan the could see activity. Afther 7 months waited I could see another dr. Diercks in the medical center. He said to me don't operate because it will not help. It will cause a lot of problems. He sent me to a specialist. I get fysiotheraphy to relax the trapeziums in my shoulders. My musclus are very active. The pain in the sernum claviculair is still the same. I have pain for three years now. What I have learned is, that we have to accept it, because there is no solution. You can try but it will not help you. It is gives yourself a lot of emotionel problems. I had periods that I can cry the hole day. But nobody know's what we are feeling. I have accepted it now and that make's my life a lot easier. I have a job for 40 hours a week. At an office from the watercompagny. I work a lot on my computer. The tryed a lot off medication on me like: movicox, pariet, Vioxx,naproxen, naproxan, stillnoct and amitriptyline. Nothing helped. Even accupuncture did not helped. And I had laser-therapy. Last saturday I saw a dr Stenvers he made promotion on the university on this subject. I was the case for a class full of therapist's. He theaches in a course what the must be allert to. He said to me that I was special, because I have it not only on the left side but even on the right side. He said and operation did not help and therapy was the only sollution. And the cortizone-shot's must be done not to mutch. Share it to the last he said. He let us see a movie where you could see move the shoulder. What you normaly can see on an x-ray, but this was moving. Very special. He gives my case now to an other dr. van Woerden. That is a specialist on shoulders. I will write you if there is something new to tell. I hope that my story tell's you something. I learned a lot off how people can react when you have a problem witch then can not see on the out-side. People think sometime's the it sits between your ears. I have looked over internet a lot but can just as you not find simulour cases a ours. Please let me know if you have something new. Wish you luck. Margriet de Vries

Comment 037

from sue herrmann (sherrmann@nmpd.state.nm.us) i have been checking the website for about four months (since june, 2002) and wondered if there was anything new. i was recently diagnosed as having arthritis in my right sc joint. i am apparently the only one in town who has it. surgery has been suggested, but i don't think it's an option. vioxx did nothing. before the pain began, i swam 3 miles a week. my dr. thought that swimming might be the cause and i stopped doing laps and took up yoga. that has helped the intensity of the pain, but it is still continuous. i am about to start acupuncture. has anyone had any success with particular treatments? thanks. p.s. the date is 10/28/2002.

Comment 038

I have been diagnosed with R.A., Ankloysing Spondilitis, and now Osteitis Condensans Illi, from my x-rays on December 30, 2002. They say I have the Osteitis COndensans, unbearable pain to the whole left side of my lower spine, pelvic area, the base of my neck, with no pain in the middle area of my spine as harsh as the neck and the pelvic area, i don't know what I have, any info would be nice on what this disease is. Mary Jane Merculief. mj.merculief@att.net

Comment 039

John, JFCuz@aol.com In Feb. 02 after a chiropractor caused a popping sound in my right sternoclavicular joint I have experienced discomfort as though the joint was out of place and I have been waiting for this dicomfort to subside. I am a fitness enthusiast and workout daily and, too, during our work season do heavy labor. During this "down time" from work I was hoping to find some help for this problem but do not wish to get involved with the chiropractor that has caused this problem. Most of the articles at this site are from people with very negative experiences. If there might be anyone that might offer a direction for me to pursue I would be very appreciative. Thank you.

Comment 040

Hi everybody! My namne is Claudia, I live in Ontario, Canada claudiafitz@aol.com. My mom is 56 and had an MRI and an inflammation in some parts of her brain have been found. Her neurologist can't explain the cause or what can be done to help, he has asked input from colleagues, but nobody seen to have an answer. A few months ago, she had damage on third nerve, which caused lots of headaches and made her left eye close for almost 5 months, now she can see, but the headaches and pressure on her head are still there. She has Diabetes 2, and had lymphoma in her stomarch, 3 yrs. ago. She is cancer free right now (thanks God!) Once in a while she uses puffers for astma (maybe twice a month) She was given movicox to see if this can help her brain inflammation, and maybe the headaches dissapear (she afraid to take them due to contraindications on package; not for people with astma or stomach problems). Her neurologist is afraid if he gives her prednisone, her blood pressure and sugar will go up, and cause her more problems. Has anyone had problems with movicox? or had same problems in brain? Please, write me, I really want to help my mom! Have a wonderful Christmas!

Comment 041

My name is Caroline. I have been fighting through knee and lover back and hip pain for years. Finally as no local doctors could help, I went to a sports medicine clinic in Winnipeg, Canada. X-rays show osteitis condensans illi.

In the last year I have had to give up-bit by bit- my Nursing foot care practice due to the horrible pain which always showed up after working. All my dedication and hard work down the drain.

Co workers and freinds and family don't seem to believe that there is anything wrong. Does any one else feel the need to always be justifying themselves???

I am 46yrs old but feel like an old woman.

Why has this happened to me?? I am feeling very sorry for myself. Luckily I have been able to get work as a home care nurse which requires very little physical work.

I can't pick up my kids. Can't get comfortable in bed, can't do much exercise....I have put on 20 lbs in 5 months.

Enough whining. Vioxx works but I only use when pain is unbearable as I'm afraid to add liver damage to my diagnosis.

Is there any one out there who can help me to feel better?

email : mears@mts.ca

Comment 041

My name is Caroline. I have been fighting through knee and lower back and hip pain for years. Finally as no local doctors could help, I went to a sports medicine clinic in Winnipeg, Canada. X-rays show osteitis condensans illi.

In the last year I have had to give up-bit by bit- my Nursing foot care practice due to the horrible pain which always showed up after working. All my dedication and hard work down the drain.

Co workers and freinds and family don't seem to believe that there is anything wrong. Does any one else feel the need to always be justifying themselves???

I am 46yrs old but feel like an old woman.

Why has this happened to me?? I am feeling very sorry for myself. Luckily I have been able to get work as a home care nurse which requires very little physical work.

I can't pick up my kids. Can't get comfortable in bed, can't do much exercise....I have put on 20 lbs in 5 months.

Enough whining. Vioxx works but I only use when pain is unbearable as I'm afraid to add liver damage to my diagnosis.

Is there any one out there who can help me to feel better?

email : mears@mts.ca

Comment 042

my name is darlene, i am 50 years old diagnosed with condensing osteitis of the clavicles. my pain has gotten really bad the past couple of years.. i have been on all the anti inflamatory drugs, muscle relaxers, and now i have tried fiorcet, darvocet, ibprofen 800 mg, and now to time release morphine with no help. the pain has gotten unbearable... i have lost range of motion in both shoulders.. none of the drs. i have gone to seem to understand nor do they care about the pain i am in. i have a full time job in a drs office that is really hard to keep.. please reply to me if by email if you understand. my email is maddog41253@yahoo.com.

Comment 043

My name is Patti. I was diagnosed 3 years ago with osteitis condensans. I had to go off all pain meds and anti-inflamatories in December, because of my liver values from taking so many things for pain.

I go to a chiropractor once a week for a massage on my neck, back, shoulder and clavicle, manipulation and when the pain is intense and the swelling is bad (which cause headaches, blurred vision, chest pains, numbness in my left arm, trouble breathing), my chiropractor does acupuncture. Of course, I have an excellent chiropractor, so if you decide to use one, make sure they are reputable and know how to treat you. I also have fibromyalgia, so this helps both things at once.

I also have a small tens unit, take hot baths, and use moist heat packs when I overdo it and am in pain. I bought a yoga tape (because I have no time to go to a class) and do the stretches every morning and evening.

My regular doctor wrote me a prescription that I had to have filled by a compounding pharmacist. It's a topical pain cream for my clavicle, and it works great, and isn't filtered through the liver.

I take different supplements: calcium/magnesium; glucosamine/condroitin, alfalfa, flax seed oil, in addition to vitamins and minerals. I didn't think this did that much good until I missed taking them for a few days. Beleive me, I noticed the difference.

I am still very active. I volunteer at a wildlife rescue/rehab center, do domestic animal rescue, work in a law office, and basically do a lot more than I probably should.

I have decided that I will never have surgery on my clavicle, because it's just not worth the risks involved. But I have total use of my left arm, and plan on staying that way.

my e-mail address is: fsangel@aol.com

Comment 043

My regular doctor wrote me a prescription that I had to have filled by a compounding pharmacist. It's a topical pain cream for my clavicle, and it works great, and isn't filtered through the liver.

I am still very active. I volunteer at a wildlife rescue/rehab center, do domestic animal rescue, work in a law office, and basically do a lot more than I probably should.

I have decided that I will never have surgery on my clavicle, because it's just not worth the risks involved. But I have total use of my left arm, and plan on staying that way.

my e-mail address is: fsangel@aol.com

Comment 044

sue - sherrmann@nmpd.state.nm.us. in reading the comments on osteitis of the sc joint, i notice that i am doing many of the things that others are doing that have helped a lot, like yoga, calcium/magnesium, and glucosamine supplements. one thing i didn't see that helped me a great deal was physical therapy. while my orthopedist treated me like a freak and said he never seen a joint injury like this before, my primary care doc suggested physical therapy. as it turned out, my physical therapist also has an sc joint injury and knew exactly what was going on. i do shoulder exercises daily and watch my posture to avoid any guarding mechanisms like tensing shoulder and neck muscles. the lump is still there and the so is the pain, but the severity is way less and i can swim again (which also helps).

Comment 045

july 1, 2003 - from kathy in katy. thank you margriet for your comment. i have tried everything on this web site but yoga (which i am not able to do) but i only get worse. i have had 3 ganglion nerve blocks and been in physical therapy for 2 years - no luck. however, i have a sternoclavicular joint injury and more recently diagnosed with rsd. i am now disabled and have not worked in 2 years - i am typing left handed. for myself, the only hope i see is for 1)knowledge that the injury is out there 2)research on how to treat it 3)a sucessful surgery to reconstruct the sternoclavicular joint and it's ligaments. i hope all you others will have better results than i did. i have been trying for ten years. margriet, i had tears when i read your e mail. thanks for reaching out. i am now at kathyfromkaty@mail.ev1.net. my biggest challenges now are how to get my meals prepared and keep a roof over my head with all this pain and take care of all the things i used to do in 2 hours now take me 80 hours to do. without church and friends i would not have made it this far. god bless all.

Comment 046

august 2003 kathy from katy

excuse typing as i am disabled and typing left handed.

web page entitled "SAPHO syndrome" says that this condition used to be referred to as osteitis condensans ????? and shows up in sternoclavicular but also other sites in body as well. sapho stands for snovitis acne pustulosis hyperostosis osteitis. sapho more prevalent in america and northern europe????? connection to hla-b27 antigen found in blood?????

also when i tried to find similarities with myself and others with incapacitation at sternoclavicular joints the only thing i can find in common is over prevalence of gran-negative bacteria (antibiotic resistent bacteria). treatment most effective with garlic pills ????? as antibiotics usually not effective. heck, i'll try anything once - what is there to lose...

compromised immune systems (over average rate of respiratory tract infectios) and/or the overall health of our teeth could very well play a part in weakening our ability to counteract any additional illness, especially in close proximity - upper body - but not limited to.

also neurontin most effective for pain at this stage (vicodin when unbearable - i try to limit vicodin as much as possible). anti-imflamatories no longer provide relief as did in early years.

wish everyone hope and happiness in their search for a better future - godspeed - and the knowledge that we WILL have one.

Comment 047

Amber Hart, amba_h@hotmail.com I am an 18 year old girl who lives in NZ. I was diagnosed with Chronic sclerosing Osteomyelitis in my left clavicle when I was 9. I used to constantly get tonsilitis and my neck would hurt on the left side. We noticed swelling and redness and I was admitted to hospital. I had never had a major trauma to that region of my body. Initially they thought that I may have had a form of bone cancer. After an MRI I was put on an intense course of antibiotics through an IV for 4 months with no effect. I could feel the pain in my shoulder, neck and down my arm and it was worst at night. I also experienced minor pain in my left hip which i was told was a form of arthritis. After the antibiotics I had a biopsy, no pathogens were ever found. I was put onto anti inflammatories which helped reduce the pain. I was told that my disease was only found in children and would stop when I stopped growing. From 12years to about 18years I experienced no pain at all in my shoulder and I started to get tonsilitis less and less. Recently I have been getting pain agin. I am back on Diclofenac Sodium which seems to be helping alot. I have been doing alot of research. SAPHO syndrome, chronic osteomyelitis, CRMO(chronic recurrent multifocal osteomyelitis), Condensing osteitis, and various types of arthritis are all very similar and none of them are clearly defined. They all seem to occur more in females, and often in infants, young children and post menapausal women. Quite often they will lie dormant as I have experienced. Some say these diseases are caused by a trauma, some say they are not. Some say that you can expect to find problems in other areas of your body including Crones disease (infection of the bowel) and other forms of arthritis. Most comonly these diseases are found in the clavicle, extremities and long bones for children, and in adults the sternoclavicular, spinal and chest wall tends to dominate. Aparently many people experience lesions on their actual skin especially on the soles of their feet. I have noticed that for each type of bone infection they say that it is very rare but I think that not enough research has yet been done in the link of these diseases. I am interested if anyone has experienced simialr things to me. Keep in touch and God Bless.

Comment 048

Hi all my name is Stacey Williams my email address is staysweet1@yahoo.com I was diagnoised with arthrits in my sternoclavicular joint, as well as an impigment in my left shoulder and bone spurs the first surgery I had done was on my shoulder to releive the pain and inflammation that was causing my arm to go numb it was a very successful surgery but I was still having problems with my chest. My original Dr. had not treated this kind of injury before so he sent me to Dr. Marra at Loyola University in Chicago at this time Dr. Marra decided it was best to do surgery and remove the proxmial portion of my clavicle. I had already undergone a year and a half of physical therapy and 3 cortizone injections at this site with no releif what so ever. I do have to admit that the pain in the sternoclavicular joint is pretty much gone Dr. said that I would still have discomfort over the next 2 years during the winter but that will subside. This is a difficult choice that I had to make I am 29 now and have 3 young children. I was working as a CNA and going on for my nursing degree. Since I have had both ends of my left clavicle removed it is considered a unstable joint and am now unable to lift much with my left arm due to risk of tearing the tendons and ligaments holding the bone in place now. This surgery was successful in releiving the pain, but has cost me my dreams of being a nurse, as well as being active in certain parts of my childrens lifes. It was not a light decesion but I felt at the time it was better to do this than not be able to move or breath on a bad day. I hope this will help someone I know it is hard to think about giving up so much in your life just to be rid of the pain and it is an individual choice I feel it was the best choice for me I find out next week what the Dr. says my final limitations will be I am keeping my fingers crossed but not letting my hopes get to high.

Comment 049

Hello to all. My name is Jeanine Healy and for the first time in a year, I feel like my pain and my problem makes sense. I have had severe pain in my left clavicle for about a year. I've gone through 2 cortizone shots and I've been on Vioxx and Celebrex as well as vicadin. Nothing has helped and as time goes on, I'm in more pain. I cry through the night and I'm tired all the time. I'm not excercising and I'm gaining weight. I have an appointment with an Orthopedic Surgeon tomorrow, on the advice of an Ortho Specialist and after reading the success stories of surgery, as well as the years of pain, I am keeping a more open mind about it. I'm 26 and I can't imagin living in pain for my life. There has to be a solution. I thank you all for providing valuable insight. My e-mail is healyj9@aol.com of anyone could give me an further information. I thank you in advance. Goodnight...God bless and I hope you have a pain free tomorrow.

Comment 050

My name is Susan (msmcfad@yahoo.com) and I had severe pain in my right sternoclavicular joint beginning in 1997. I could not lift my arm much at one point and I worked on the computer all day. Sleeping was also difficult as the pain was too great. My ortho did x-rays, CT, bone scan, nuclear scan and an MRI. My right clavicular head was red hot in the nuclear scan, but there was an abnormal signal in the manubrium (?) that left them wondering a little about my diagnosis. I had a great doc though and he sent me to another hospital to a special interventional radiologist who did four CT-guided injections of marcaine and celestone into the subacromial space. This was done with a very long flexible catheter all the way to my sc joint (and some versed for me). I had to promise to go not more than 4-6 weeks apart for these injections. I was very skeptical, since previous short needle steroid injections hadn't worked, but this type did finally work. It took a couple months to sink in, but I was finally pain free. It's been years now and I've had two children and still only get occasional twinges in that same area where I had all that pain.

Comment 051

PAUL DELUCA PCONSTRUCT@COMCAST.NET I NEED HELP PLEASE

I HAVE THORACIC OUTLET SYNDROME, SCAPULAR OUTLET SYNDROME AND CARPAL TUNNEL. I'VE HAD TWO UNSUCCESSFUL SURGERIES. IF SOMEBODY WOULD LIKE TO CHALENGE THEMSELVES IT WOULD MEAN A GREAT DEAL TO ME. 10 YRS OF HELL I'VE ENDURED I PRAY SOMEONE WITH THE KNOWLEDGE TO HELP ME WITH MY PROBLEM

Comment 052

Margriet de Vries, m.d.vries@wbgr.nl, I wrote four years ago about my injury to Katy. And I have fisited four dokters and now it is going well. I have thearapist who has got me pain free!!! She has started a case in the Netherlands. Because the have more patients with this injury. Sent me a mail about your case then she can put comments as the where given in this document, she can learn en write more about it. Then I can mail it back so we can all read about our own cases.