Sternoclavicular Joint Injuries
The Truth About These Injuries – The Nightmare of Ignorance
I had just bought my third horse. I rode 4 days a week, went country western dancing, swimming and was very active and happy. I was not a couch potato. I was happy and my life was full. Little did I know that an event would catapult me into a nightmare that I am only just beginning to crawl out of. And I would lose my active lifestyle completely.
7 years later I was walking to my mailbox on a muddy cement walkway. My legs slipped out from under me and I was falling on my back. To keep from injuring my back I threw my weight as hard as I could forward and landed on both outstretched hands. I had ridden horses for years (some not too cooperative) and I suddenly found myself incurring an injury on my casual walk to the mailbox.
The pain was instant and I noticed whenever I stood up my right collarbone would fall forward out of joint. I would later come to learn (from the internet – not doctors) what a crucial role that joint would play in my despair – it was called the sternoclavicular joint – the one which holds the collarbone to the sternum. The joint with no repair.
But I didn’t know that then. It was my very first injury and I was in good physical condition. I went to my general doctor who told me talk aspirin for 2 weeks and don’t ride. After that I should be fine. It was the first of many times a doctor would give me incorrect information. I rode 2 weeks later after following his advice and found myself in extreme pain from my sternoclavicular (sc) joint down through my sternum.
I continued to deal with the injury the best that I could and in constant pain when there was a flare-up. During that time it felt like my shoulder was out of joint and when the pain lessened it felt back in proper position.
I began to see my first orthopedist. He was a highly recommended surgeon but not a whole lot on bedside manner. He told me the good news is you don’t need surgery and if it hurts don’t do it. It did not sound all that serious. I did not feel I had cause for alarm.
But each year the injury got progressively worse. I would try to ride my horse and we would start at the beginning to try to get us both back in condition but i could not get past 6 months and would have to get off the horse for a spell again and start all over again at the beginning.
The condition continued to deteriorate. Even the bumping of the horse when I rode became painful. I began to get very concerned about myself and set a course to seek out a qualified doctor who could treat me.
This served to be very frustrating. I went to several doctors over the next few years, all orthopedists hand picked. One treated a pro sports team and I live close to the houston area. I had utter confidence I could be treated and I was in for the shock of my life.
They all told me something different and diagnosed me with something different (sprained collarbone, subluxated sc joint, arthritis of the sc joint, tietze’s syndrome). They all said I could try other doctors but they weren’t sure who was treating this injury (they could not treat it). One doctor finally told me the reason they all told me something different is because there is no answer. He said you will never do anything physical again and the most you can hope for is to live in low pain.
At this point upon seeing these doctors they gave me a cat scan (in 1998) which did not show a dislocation but showed a piece of my sternum broken off. This was caused by my sc joint coming out of joint and causing this. The bone scan showed increased uptake at the sc joint. The MRI taken later showed no abnormalities. I had 3 utterly painful cortizone shots.
My pain increased. Now it felt disconnected all the time. Working was hell. I lived in terrible pain. I turned to the internet and here’s what I found after 5 years of research.
(1) No one with a serious injury (one that persists for more than 2-3 years) ever recovered – anywhere in the world This included pro sports athletes who would trimph over countless injuries up to this one.
(2) I probably had an anterior dislocation of the sc joint.
(3) Most people with this injury have a normal MRI – the theory being that the ligaments in this part of the body are so tightly packed that it is difficult to get a clear reading.
(4) The only surgery that exists is highly controversial and does not reconstruct the joint. It is highly not recommended – unless there is a posterior dislocation and the patient risks death and breathing problems. A piece of the collarbone is cut off and attached to the sternum with a muscle. Dr. Wirth in san antonio (with charles rockwood) does this surgery. He does about 10 a year.
It would take me many years to live with this injury. The ignorance surrounding this injury would cause me as much grief as the injury itself. Friends and coworkers would say they couldn’t believe that nothing could be done. The sent me to several doctors to no avail. One was a nurse. She was sure I would receive treatment and be cured. No dice. One time I went to an emergency room with pain and the doctor there said he would not admit me because I would not let him push on my chest (which could cause so much pain I could be bed ridden for days). He said didn’t I know there was a surgery where they could remove my collarbone? I said give me the doctor’s name. He said go talk to my primary physician. I told him my primary physician did not have a clue where to send me for that kind of surgery and that I suspected there was no surgery and why didn’t he know that? I complained to hospital but they blew me off. It was very frustrating and scary. I suddenly found myself in the position of protecting myself from the doctors who did not know much about this injury.
What made me mad was the concensus seemed to be if it wasn’t in a book it did not exist. If you asked all of us how things were, you could have gathered several similarities but the doctors did not bother to do that. On the internet I would find doctors who did that in other countries, but not here.
I would continue to endure curious physicians who would push on my chest without warning out of curiosity. I now walk into a doctors office and the first thing I say is do not touch me from my sc joint down my arm, at all. If we can agree on that we can do medicine together. Otherwise no deal – I’m out of here. I had visions of getting in a car crash and refusing to go to the emergency room.
I continue to live in constant pain now (9 on a scale of 1 to 10). I have a couple of days a week where it is so bad I cannot get out of bed. I struggle to grocery shop and take showers and do all the regular things people do – at least some of them. I have a lot of help and a lot of spiritual fuel from my church which has proved to be life sustaining. My shoulder is deformed now (somewhat higher than the other) but was not before in the early years. Recently my doctor diagnosed me with RSD. I don’t believe RSD had much to do with it, maybe just a result of an injury they could not fix.
I have a lawsuit in progress involving my long tern disability insurance company (ERISA case) as they stopped paying me and said you can go back to work with one hand. This took talking to 55 lawyers in order to find one to take my case and the support of my church as I was ready to just give it all up.
I do the best that I can today. I have hit bottom emotionally and spiritually and am coming back up. My body is crippled and hurting. I am disabled and a lady is taking care of my horse for me (he is now up in years). I struggle to care for him (just visiting, brushing and bathing) as the lady has many horses of her own. People ask me how I can do this. I say, easy, my horse adjusted to me along the years, but the grocery store did not. In a pasture with other horses and without being tied he will submit to having his hooves cleaned (he lifts them for me and places them toe balancing on the ground) since I cannot pick them up – I can only use my left arm to pick them out! He is so special. The pain is so bad I cannot be hugged. I cannot use my right hand or arm hardly at all. It continues to deteriorate as does my shoulder. Bumping around in a car causes terrible pain. I cannot travel much and my driving is very limited.
I have now suffered for 13 years. I know if nothing is done I will continue to suffer.
But the biggest battle I face every day is the ignorance surrounding this injury and the doctors I will have to protect myself from. There is no support group that I could find for this injury. We are all over the world. There is no surgery and no cure. There is very little research being done. One wonders if it is perhaps in large part due to the fact that the public and doctors do not understand that there needs to be. Sufferers face certain disability in time as they continue, like me, to deteriorate over time. And they do this in frustration surrounded by those who do not believe that nothing can be done – they must not be doing something right. My church never did that and my new friends don’t do that. But the world still does.
I am living proof and there are many others. Help us. Be informed. One day someone might just come up with a cure where there is now none. Help us get there. God bless all the poor souls out there around the world suffering in so many different ways. Help us have our lives back. Thank you for listening. We need your support.
Hear ye, hear ye, I do hereby declare that there is no surgical way at this time to treat the 3 ligaments that hold the sternoclavicular joint in place should they become damaged and cause instability in this joint area. There is for the ac joint, the main shoulder joint but not for the sc joint – yet. If others do not find treatment they will most likely continue to deteriorate and face possible disability as I have. Most have not even been diagnosed effectively yet. And doctors, please, the answer is not in the book. If it were, we would all be cured. Listen to us as a group to learn how to treat us without causing further bodily and emotional pain. We are your only information at this time. Please, someone get on the stick and promote more study and research so that our fate does not remain dismal and meodicre. Our future is in your hands.
5 years since ive cruised the net and everyone still seems to be uninformed...when will it end...if a new surgery is out there-where are the cured patients? make my day-prove me wrong. show me a cured patient!!! calling all cured patients--are any of you out there?