question to people who has this injury for more than 15 years.....

[herff94]

My injury was 21 years ago when I was going on 18 yrs old. I denied my injury and did not let it effect my life. Meaning, I pretended I was not disabled. I had a muscle transfer right away. At the time it was all they could do. I am going on 40, I have 4 children (12, 10, 8 and 3) and I use my arm (or try to) as if I don't have an injury. My question is, there are days it feels like my arm could just fall off. My shoulder looks like its dislocated. I have a round bone sticking out in front. I have pain all day, worse if its cold or if I was active the day before. I don't know if I would feel the pain associated with a dislocated shoulder. I was wondering if I needed my shoulder fused and if its going to get worse and worse.
I need advised from the experienced. And from the ones that had an accident (traumatic injury not birth, birth seems quit different) I have lived my life longer with my injury than not.
Any input?

Kath in Chicago

[Dan]

Hi Kath,

I know we exchanged e-mails in the past and know we got hurt about the same time and age. I just turned 18 when I got hurt and will be 41 in April. My injury is a complete avulsion of all five nerves. I had the nerve graph into the intercostals and have use of the bicep.

I have been very active since and very athletic. As you know, I strap my arm down to do most of my athletics, except golf. I have let the arm hang or put in my pocket after about six months. I think one of the differences is I am a salesperson who spends most of my time behind a desk or traveling in my car, which allows me to "prop" my arm on the desk/arm rest or small pillow in the car. When I do a trade show and am standing all day, I do experience more pain.

One of the things I do is move the arm lots (either bend over and swing it around or move it with my other arm) and do extra stretching, more than usual, when I have one of those days. The more I can move the ball in the socket, the better I feel. For my friends and family, this is one of the ways they know I am in more pain than usual, I am doing lots more moving of the arm and stretching of my neck.

I personally don't want to have the shoulder fused as I like the arm movable for my golf swing and just for daily life to move it around.

I don't think my pain has gotten worse over the years. One of the things I do know that causes my pain levels to go up is being overweight and not physically active, which the two of those go hand in hand. I do know the more sports I am doing, the less pain I experience. I think this is for a couple reasons, first is that I think it helps the blood flow in my body and thus my arm. I also think the movement helps keep the joints loose, I qualify this in that anything that will be jarring to the arm, I have the arm secured down because that does cause pain. I also think being heavy also adds weight to the arm which makes it more painful to "carry" around. I know these are not scientific, but they are my "expert opinion" of living with it for 22 years.

As we all know, each of us deal with this injury differently, for me and my lifestyle, this is what works.

I think you are on your feet more often than I am on a regular basis, which might be adding to your pain as you have to deal with the arm hanging more. I think you have to look at the benefits or negatives to fusing your shoulder as it applies to your life or if there is a different way to reduce the pain given your lifestyle.

Hope this helps in some way,
Dan

[MarkedlyInPain]

I'm going on 13 years, don't quite make the 15 year mark. I'm also in my 40's, and was very active before my injury. I know I can not evaluate this injury and its impacts. The pain absolutely impairs my judgment. I think I realized that after shaving the hair off of my arm. I was sure it was part of the pain. No, I think it was the second time I shaved it off.

I was also sure it was the cold that increased my pain until the summer, then it's the heat. Where is that damn razor?

I would seek some very qualified support. Single source anecdotal data is extremely unreliable, especially from people in pain. I am surprised that people can live this long with this much pain.

[schmoe90]

You sound almost exactly the same as me - 23 years ago, at 17 years old, and the intercostal nerve transfer to my bicep. While I have managed to dislocate my shoulder a couple of times, it's generally fine. I do a bunch of exercises, and when my arm is aching, I tend to stretch the joints - hey, if it's hurting anyway, I might as well do the stretching exercises that make it hurt. I've never thought about getting my shoulder fused. One of the exercises I do is to move my shoulder as much in every direction as I can - I used to do this with some weight on the hand (just a few lbs) to build up the hollowed out shoulder area a little. I don't know if this has helped, but my shoulder doesn't trouble me as much as my hand )

[Heddip]

Hi Kath,

It's only been 12 years for me, but I have no use of the arm, and a completely subluxed shoulder.

Like Dan, it only bothers me when I have to stand for long periods. I only use a sling for running/biking, but saw this one mentioned on the TBPI site:

https://www.usmedicalstore.com/product. ... ize-1&js=y

I have to admit that I tried a similar one years ago, and the part that goes around the arm was too big for my skinny atrophied arm. This one looks like it is updated, and might be more adjustable?

I'm not thinking about fusing the shoulder at this point, but would consider it if the pain gets too bad. I'd rather have the flexibility right now, but am not sure what it does for me since I can't use the arm.

I do ice my neck & shoulders a lot, when they hurt. The damaged nerves hate it, but once they go numb I get quite a bit of relief from it.

Good luck, I hope you find a soution that works for you soon!

Heddi

[Joel]

I highly recommend the brace mentioned by heiddi above. There are a bunch of different sizes so make sure to get the right one for your arm. I find that it releives the pain some especially when I'm going to be upright without any support for a long time.

Cheers,
Joel

[herff94]

Thank you so much, everyone, for your advice. Dan, I did notice during my pregnancies my arm did hurt more, I gained 25 pounds with each pregnancy and thankfully I got back down to my normal weight of 112 after each one. I have never worn a brace because I hated the thought of it and I didn't want to draw attention to myself but I think after 21 years its time to give in. My husband has been telling me for years to wear one.
Do you all think the round bone sticking out in front is a dislocated shoulder??? I go up to Mayo next Wed., Jan 15h, to see a doctor in plastics, unrelated to my shoulder being dislocated. I wonder if he would be able to tell me what's going on or if I need to see someone else. They don't tell you when you get injured that this a life long "got to take of this now" injury. It always seems like something. New pains everyday day, every month and every year. It gets depressing sometimes, especially in the winter when its so damn cold!
Thank you everyone!
Kath

[Dan]

Hi Kath,

Not sure about the shoulder being dislocated, I think mine is in and out all the time. I do know my bone sticks out, not sure if it is dislocated or just that there is so much loss of muscle that the bones are more evident. Will be interesting to hear what the Dr says.

Maybe you wear a sling when you will be on your feet a lot in a day, don't you coach track and are on your feet a long time when you do?

Dan

[herff94]

Dan
You have a great memory. I do coach track and I am coaching cheerleadering this yr for the first time. Thats not as hard as track. I am very active chasing my kids all around, especially the 3 yr old. I do need to get my arm lifted up and give it a rest.
I just noticed the bone sticking out recently. I don't know. I hope this doctor next week can tell me something. He might tell me I need to see another doctor. Mayo is not too far but its an all day trip.
Thank you for all of your help!

[Joel]

I feel the same way about "sticking out in a crowd". So I wear this shoulder brace under my shirt. Its totally hidden unless the shirt I am wearing has really short sleeves.

Joel