Brachial Plexus tear

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Earning My Ears
Joined
Jan 30, 2011
Messages
60
Tell me your horror stories. Just released from the hospital with above and go to Disney in 3 weeks

Still can't do anything with my right arm (dominant) but starting to get movement in fingers though they are still numb.

How long did it take you to get all use back of your arm?

An MRI is showing multiple full-thickness rotator cuff tears which is requiring surgery. Putting surgery off until after our trip starting Aug 13th.
 
Bump

Someone out there must have been diagnosed with this in the past. I have found some great websitesw but want to hear some personal experiences.

I also am looking for tips on having a good time with the use of 1 arm only along with long terms antibiotics that require me to be out of the sun. I would get a GAC if it would give me an alternate place to wait out of the sun, but we are really planning to just plan and use fast passes.
 
Sorry to hear about your shoulder. I'm not sure what type of tear you had but I had a traumatic brachial plexus traction injury a when I was 21. It took about 5 months before I had any motion in the arm (though I could move my fingers by the end of the first month -just no coordination), had almost no motion and then one night the arm just shot out across the bed-starling but after that I was actually able to begin moving it a bit. As the nerve healed it went through periods of being very uncomfortable with a lot of tingling but there were also times when it would calm down. 4 years of intensive physical therapy (4x a week minimum) at a top hospital and I'm in pretty good shape now, still don't have full ROM but can do most of what I need to do. Headaches were an unfortunate side effect for a long time, but have gotten much better. Right now I'm working on retraining the muscles to learn how to throw a ball and some other gross motor skills. When it first happened I was told I should be on high doses of painkillers and take a semester off school but I turned both of those things down and ended up completing the semester with great marks. I think one of the biggest things with this type of injury is that it's part of your life for quite a while, but the frustration becomes less and less frequent and if you commit yourself to physical therapy and know where you want to go, you can recover. It just takes a very long time.

Anyway, when I went to disney the biggest things were keeping it supported (not hanging down) and iceing it a lot. There were a few embarrasing moments getting in and out of vehicles -simply because I didn't have great use of the arm at the time- but nothing noticable and all of them could have been avoided if I had just accepted that I had to do things slightly differently (like taking my time getting into/out of vehicles). If you can have a good sense of humor about it-even when it is driving you crazy-that really helped me.

The key I found was to stay ahead of the pain/discomfort as much as possible. The things that I found helped the most were: 1. to get one of those drawstring backpacks with super thin straps (didn't put too much pressure on the arm/shoulder or neck); 2. packing extremely light, bringing icepacks (the throw away kind that you just shake to use -buy these in florida if you're flying because they can cause issues at the airport security wise) though you can get them in the guest/first aid centers, I typically didn't want to go out of my way to find one of those and explain the situation to them so carrying them in my backpack meant that I was more likley to use them -when I was at the hotel they were great about providing me with icepacks so I would recommend calling the front desk to ask-if your staying somewhere with a freezer in the room, you can just use a few reusable ones; 3. wearing an underarmor (tight) sport tanktop that did not put pressure on my shoulder but that I could stick the icepack under so I wasn't forced to hold it -especially on the rides (it took a while to find a tank top that didn't cause my arm to tingle but was tight enough to hold the icepack in place); 4. take ibprofen or tylenol to stay ahead of the pain and ice at night before you go to bed and in the morning before you go to the parks (plus while you are at the parks.); 5. if the handicap restrooms are available use them (if you haven't already noticed this, it will become very apparent when you get to disney-when the toilet paper is on the side with the bad arm in some of the cramped little normal stalls, it can be difficult/annoying to reach over with your good arm to grab it without twisting awkwardly); 6. wear athletic shorts or something without a button, unless you are very dexterious with your left hand, when you are trying to get in and out of the bathroom with a billion other people, you don't want to spend the extra time trying to button your shorts with one hand; 7. if you are going to go on rides that jostle you around be VERY careful, if your arm gets jammed into something or someone you may end up feeling it the rest of your trip. If you are adament about going on those type of rides try to go at the end of the day so you can go back to the hotel and ice right after and try to get someone in your party who is strong enough to brace themselves to sit on the side where your arm is hurt so that they don't slam into you during the ride and can prevent you from smashing into the side of the ride with your bad arm; 8. if you go on slower rides or shows where the seats have an armrest, try to get an end of the row seat or sit with someone you trust on the side where your arm is injured so you can rest it on the armrest -without worring about the person next to you leaning on you or taking up the armrest- if you're in a sling your neck will really thank you for taking the stress off it for a little bit; 9. take advantage of the pool if your hotel has one -even if it means going in the evening after any of the kids are asleep, taking the pressure off your arm and neck in the water can really help to avoid muscle stiffness and more pain. 10. have whoever you are with do an ice massage (take some icecubes and one by one and have a friend take them 1 by 1 and just gently place/rub them over the whole shoulder area-it feels wierd but does help in the long run) before bed every night. I think those are the biggest things I remember from my trip...

In terms of the antibiotics/shade, I have been in the parks on medication that makes me suceptible to sunburn and I never felt the need to use a GAC My mother has an illness where she is basically allergic to the sun so needs to avoid it and she never used a GAC either. Both of us wore baseball hats and lots of sunscreen. Disney was built with a lot of though put into the sun factor. Many of the rides have shaded lines and there are a lot of options that are inside. We simply planned to do the rides in direct sun in the morning, late afternoon, and evening, switching off between a "sun ride" and then two "shade rides." At MK the TTA and the Carosel of Progress are great "break from the sun" rides that are somewhat slow moving and give you a good break from the sun. In Epcot the rides at the Land and Spaceship Earth are good out of the sun options. We were actually both suprised at how much being in the sun was NOT an issue for us. We also stayed on property the first two times and went back to the polynesian from like 1-3 everyday to swim (kids) and rest (most of the adults-except whoever was on pool duty).

That may be more info than you needed, but I hope it helps. It definitely is a frustrating injury, but it does get better. If you have any other questions, feel free to ask! Good luck!
 
Sorry to hear about your shoulder. I'm not sure what type of tear you had but I had a traumatic brachial plexus traction injury a when I was 21. It took about 5 months before I had any motion in the arm (though I could move my fingers by the end of the first month -just no coordination), had almost no motion and then one night the arm just shot out across the bed-starling but after that I was actually able to begin moving it a bit. As the nerve healed it went through periods of being very uncomfortable with a lot of tingling but there were also times when it would calm down. 4 years of intensive physical therapy (4x a week minimum) at a top hospital and I'm in pretty good shape now, still don't have full ROM but can do most of what I need to do. Headaches were an unfortunate side effect for a long time, but have gotten much better. Right now I'm working on retraining the muscles to learn how to throw a ball and some other gross motor skills. When it first happened I was told I should be on high doses of painkillers and take a semester off school but I turned both of those things down and ended up completing the semester with great marks. I think one of the biggest things with this type of injury is that it's part of your life for quite a while, but the frustration becomes less and less frequent and if you commit yourself to physical therapy and know where you want to go, you can recover. It just takes a very long time.

Anyway, when I went to disney the biggest things were keeping it supported (not hanging down) and iceing it a lot. There were a few embarrasing moments getting in and out of vehicles -simply because I didn't have great use of the arm at the time- but nothing noticable and all of them could have been avoided if I had just accepted that I had to do things slightly differently (like taking my time getting into/out of vehicles). If you can have a good sense of humor about it-even when it is driving you crazy-that really helped me.

The key I found was to stay ahead of the pain/discomfort as much as possible. The things that I found helped the most were: 1. to get one of those drawstring backpacks with super thin straps (didn't put too much pressure on the arm/shoulder or neck); 2. packing extremely light, bringing icepacks (the throw away kind that you just shake to use -buy these in florida if you're flying because they can cause issues at the airport security wise) though you can get them in the guest/first aid centers, I typically didn't want to go out of my way to find one of those and explain the situation to them so carrying them in my backpack meant that I was more likley to use them -when I was at the hotel they were great about providing me with icepacks so I would recommend calling the front desk to ask-if your staying somewhere with a freezer in the room, you can just use a few reusable ones; 3. wearing an underarmor (tight) sport tanktop that did not put pressure on my shoulder but that I could stick the icepack under so I wasn't forced to hold it -especially on the rides (it took a while to find a tank top that didn't cause my arm to tingle but was tight enough to hold the icepack in place); 4. take ibprofen or tylenol to stay ahead of the pain and ice at night before you go to bed and in the morning before you go to the parks (plus while you are at the parks.); 5. if the handicap restrooms are available use them (if you haven't already noticed this, it will become very apparent when you get to disney-when the toilet paper is on the side with the bad arm in some of the cramped little normal stalls, it can be difficult/annoying to reach over with your good arm to grab it without twisting awkwardly); 6. wear athletic shorts or something without a button, unless you are very dexterious with your left hand, when you are trying to get in and out of the bathroom with a billion other people, you don't want to spend the extra time trying to button your shorts with one hand; 7. if you are going to go on rides that jostle you around be VERY careful, if your arm gets jammed into something or someone you may end up feeling it the rest of your trip. If you are adament about going on those type of rides try to go at the end of the day so you can go back to the hotel and ice right after and try to get someone in your party who is strong enough to brace themselves to sit on the side where your arm is hurt so that they don't slam into you during the ride and can prevent you from smashing into the side of the ride with your bad arm; 8. if you go on slower rides or shows where the seats have an armrest, try to get an end of the row seat or sit with someone you trust on the side where your arm is injured so you can rest it on the armrest -without worring about the person next to you leaning on you or taking up the armrest- if you're in a sling your neck will really thank you for taking the stress off it for a little bit; 9. take advantage of the pool if your hotel has one -even if it means going in the evening after any of the kids are asleep, taking the pressure off your arm and neck in the water can really help to avoid muscle stiffness and more pain. 10. have whoever you are with do an ice massage (take some icecubes and one by one and have a friend take them 1 by 1 and just gently place/rub them over the whole shoulder area-it feels wierd but does help in the long run) before bed every night. I think those are the biggest things I remember from my trip...

In terms of the antibiotics/shade, I have been in the parks on medication that makes me suceptible to sunburn and I never felt the need to use a GAC My mother has an illness where she is basically allergic to the sun so needs to avoid it and she never used a GAC either. Both of us wore baseball hats and lots of sunscreen. Disney was built with a lot of though put into the sun factor. Many of the rides have shaded lines and there are a lot of options that are inside. We simply planned to do the rides in direct sun in the morning, late afternoon, and evening, switching off between a "sun ride" and then two "shade rides." At MK the TTA and the Carosel of Progress are great "break from the sun" rides that are somewhat slow moving and give you a good break from the sun. In Epcot the rides at the Land and Spaceship Earth are good out of the sun options. We were actually both suprised at how much being in the sun was NOT an issue for us. We also stayed on property the first two times and went back to the polynesian from like 1-3 everyday to swim (kids) and rest (most of the adults-except whoever was on pool duty).

That may be more info than you needed, but I hope it helps. It definitely is a frustrating injury, but it does get better. If you have any other questions, feel free to ask! Good luck!

Thanks for the reply. Same type of inlury, with the complication i have bulging discs onn the same nerve root (they did a MRI to make sure the nerve wasn't severed and found this). I start PT today and not looking forward to it as I have to drive so no pain pills.

What did you use for pain? They had me on Dilaided in the hospital and switched me to Vicodin at d/c which isn't seeming to do much good.
 

Sorry to hear you've got the disk issues as well. I had a mild disk issue in my neck and a more significant one in my back (back was unrelated to shoulder injury) and they are a huge pain. For my shoulder/neck I was prescribed a whole bunch of stuff, Tramadol, Neurontin, and a number of other pain killers but ultimately I decided not to take them because if I did the doctors said I would have to take the semester off from school. I tried one or two medications at the beginning-don't remember their names- but they did nothing for me, and I decided that it wasn't worth it. I will say that for me it definitely came in waves after the first month or so. Initially I couldn't even put ice on it or have anyone touch it because it hurt so much to have contact. By the end of the first month I'm not sure if it was less painful or if I just became accustomed to it, but I was more willing to let the doctors try to move it. After the first hands on PT sessions I remember feeling very overwhelmed by the discomfort. I did a lot of counting and going through song lyrics in my head to try to just get my mind off of it, especially during pt. I took tylenol, occasionally ibprofen, and occasionally. By the third PT appointment I felt like both myself and the pt had begun to learn what to avoid doing so that the pain was better. The first month to two months was the hardest physically, partly because it was the first time I had experienced that type of pain, and partly because it took me a while to figure out what exacerbated the pain in my shoulder and how to avoid those situations/actions. I will say that within weeks I had times when although I was in pain, it wasn't overtaking and I was able to be myself. The second month and a half was harder emotionally, because it sunk it that this was not going to be like other injuries and just heal. After that I finally started to see some progress and it has been fairly slow but steady progress since then. Definitely some major setbacks and moments of frustration, but overall it does get better. Icing religiously once I could tolerate the ice on my shoulder did make a difference, and when I would break the icing routine (thinking it was a waste of time) I almost always ended up regretting it. My PT was really good about setting long term goals and short term goals (reduce pain-short term; this too shall pass -long term) and keeping me motivated which really helped. Learning to divert my mind -by counting, song lyrics, naming things in other languages, whatever I could come up with- was probably the most productive thing I did. I got to the point where when I was in a lot of pain, or during medical procedures, I could put my head down and just go through the lyrics over and over until I felt ready to deal with the pain again. I actually used a lot of disney songs because I found I knew a lot of the lyrics so I could go through them many times in my head without messing up. Learning what exacerbated the pain (which at the beginning included virtually all tight shirts -- leading me to purchase large quantities of lose (athletic) cotton t-shirts and under armor) and modifying little things that I found were making it worse was definitely an important step in helping to reduce the pain. I'm sorry I don't have any better solutions/suggestions. Unfortunately nerve pain is notoriously difficult to control with medications. I will say that now, four years out, I can do most of the things I want to be able to do and feel pain free most days (achy, uncomfortable sometimes, but I wouldn't say I feel pain unless I do something stupid). I still am relearning to throw a ball, shoot baskets, and some fine motor stuff, but it's not a major limit on my life. The doctors told me I would realistically never be where I am at today, but I've made a lot of progress and continue to make progress. It was important for me when the pain was really bad early on to just say in my head that this is not forever, it will pass, it will get better, because it sometimes feels like this pain is your life because it can be so overtaking/overwhelming. I think medically my best advice is to get the best team you can, do the research, don't be afraid to "shop" around and try out different doctors and pts to find people who you feel confident with. Its not always the "top" doctors that are the best, I've found some of the best in the country to be extremely uninformed in BPI and other less well known doctors who are amazing. I'm not sure who you have seen so far, but I would recommend making sure to have a great neurologist, shoulder/neck ortho who specializes in nerve injuries, a pt (or a few-I worked with three at three different places simply because they each had different approaches and none were experts in all three methods -all three were willing to communicate with one another) with experience with BPI. I'm not sure if that is helpful, I wish there was a medication I could recommend that would reduce the pain, but unfortunately I don't have one. I hope pt went well and you are not in too much additional pain. I really hope they are able to help you get the pain under control, especially with a Disney vacation coming up! If you have any questions, let me know and I'd be happy to answer if I can.
 
Thanks for the additional info. my pt seems to know what she is doing but haven't found a general MD who is familiar with it. my neurologist is great my neorusurgeon seems ok, no has recommended an orth specialist though.

i am only a week out and frustrated by slow progress, at least my fingers are tingeling. :thumbsup2 if it weren't for computers i wouldn't be able to do any written communication.

my husband has to cut up my food and eat with my left hand which will be very embarressing at disney.

I researched neurontin and it is supposed to be good for nerve pain and is not a narcotic so I will ask about being put on that.
 
I am not a big believer in alternative medicine but did you ever try accupuncture and if so, any results?
 
Tingling is a really good sign !

I didn't really take any alternative medicine approaches though some were suggested. I have heard mixed things about acupuncture for these injuries. One doctor did say that he would recommend considering it but also that if I were to pursue it I needed to find someone who would use a small needle approach and who was very knowledgeable because they need to have the knowledge to understand that (1) I might not have full sensation within my shoulder and neck due to the injury so I might not be able to feel pain if they hit something they shouldn't and (2) there is a chance that there is more structural damage within my shoulder than is known and the acupuncturist would need to take that into account when making a treatment decision. However the doctor did recommend I consider it, so obviously he felt that there was some value in acupuncture for this type of injury.

I did do some "intensive" physical therapy that included newer strategies for recovery like biofeedback but that was done through a western medicine pt so not really alternative medicine. I did craniosacral pt which did help with some of the neck pain and mobility, so that is a little bit alternative. But no, ultimately I wouldn't say I did much with alternative medicine.

The biggest thing from the ortho angle is that they will probably be concerned about avoiding frozen shoulder, (but would likely just send you to pt for that -which you are already doing) and long term muscle redevelopment, which I would imagine would be a ways out at this point. There is a website with doctors who specialize in this type of injury, I don't have it off the top of my head but will look for it.

I had to relearn how to eat with my right hand (I'm left handed for everything but writing) which was humorous to say the least. It is amazing how quickly the basic skills will come but things like spaghetti and soup never really worked very well (though my friends and family thought it was pretty funny). One thing to know about disney is that if you request that they cut up the food, they will do it, and apparently it is not that odd a request. A guy who had dentures asked that they cut up his foot at China in EPCOT and the waitstaff was totally great about it -handled it just like if someone asked for the dressing on the side for their salad. I subsequently saw this at the land pavillion where they cut up some type of sandwich thing for a man with his arm in a sling and at one of the restaurants in MK for a girl with braces.

Neurontin is probably worth trying, it is (according to my dr.) one of the more common meds for this type of injury.
 
Thanks for all your help, they have now changed the diagnosis after a MRI to multiple full-thickness tears with surgery required. Any experience with this?
 
That's a much better prognosis! With surgery they should be able to fix you up and get you back to normal pretty quickly! Depending on what type of surgery they do the recovery could be pretty quick. (One of my friends had arthroscopic surgery and wasn't even put under general anesthesia, six weeks and he was back in sports -not 100% but back). It might be a good idea to make sure that your neurologist has seen the mri before an ortho operates, just because some of your symptoms (like numbness and a lot of pain outside of the first week or so) I think are not as common with a rotator cuff tear, so it might be good to have the neuro check to make sure there is no issue with the nerve. Neurological symptoms could also be caused by the disk issues you mentioned, but might be worth checking in w/neuro before surgery. Hope you are doing better!!
 
I have the same exact inhury how is your arm now
I just checked and neither of the posters in this thread have posted on Disboards since 2011. So, not likely to respond.
I‘ll leave the thread for a while to see if anyone with a similar injury responds, but if no one does in a few days, I’ll close the thread.
 












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