United Brachial Plexus Network, Inc.

It happened to me. I have a bilateral bpi. Mine was due to an incompetant doctor who didnt bother to check and see that his harness on surgery table had caused a bad bpi strech. I cant believe i just found this board its been 18 months since my accident.Trying to expain this type of pain to people is hard.Its made life very hard, Im 33 with two small kids, almost unbearably hard. Ive been on neurotin,topamax,elavil all to know avail. E-stem provides some relief. Will this last forever? How do I live with this pain and be a productive person?

Hello there KJ, very sorry to hear you have been injured. I had read a while back, while researching, that a stretch was possible due to improper positioning on the op table. It is still hard to believe that kind of thing still happens. You got a double dose of something you didn't deserve. Sorry you are having to go thru this. Have you regained any movement ?? You said it......this kind of pain is relentless, and there are very few meds, unfortunately, that will touch it. I think the best pain relief comes from a distraction.........not thinking about the arm(s). Yes, I can imagine what having to care for two wee ones could be like, but with both arms injured, I know it must be hard. I was injured a little over two years ago, and must say that the pain is either getting bearable, or I just do my best to ignore it. Not an easy task. But.....it has lessened a great deal. I can only hope the same for you. As far as getting on with life........well......I found that it takes time for the pain to ease off, and it takes time for one to ease back into a semi-normal life. Please keep in mind that I am giving you a two-year injury perspective. There are others here that have lived with this injury far longer than I have, and can enlighten you as to what to expect down the road a piece. Try to get all the rest you can possibly get. You NEED that time to relax mentally and physically. Stress compounds the pain 10 fold. A good rest helps more than you think it will, so budget some time for it.

Are you seeing a doc that knows how to treat this injury? Strongly recommend you do. And if you are in therapy, the excersizes will help with the pain, to some degree. Most of all, keep a good attitude, if you can. And when you reach the end of your roap, just come back here and we'll tie on another piece for you ) Plenty of shoulders and ears here........well...maybe not quite as many shoulders as ears ) Hope you're doing better today......

George

Thank you george.Just talking about this with people in similar situations is comforting. I do see pain management specialists and a physiatrist(sp) also.It's been a living nightmare. I went into hospital for a labroscopic resection of large intestine,which was a success,and came out with a Bilateral pbi. Living on a LTD policy and applying for SSDI and depression and the lawsuit has stressed me out to no end.Im sick and tired of this mess but have great friends and family which helps me live with this injury a little easier. Its really tough to tell people that Im disabled because with a bpi injury I look so normal and I think people find it hard to believe I'm hurt or at least the severity of my injury. I do have movement in my arms but I lost a lot of function in my biceps,left is much more severe than right,I could live with that its the pain that is the worst. The burning,stinging and aching is relentless.I live in upstate NY so its cold a lot which just aggrevates my bpi even more, I hope to relocate south if lawsuit goes favorably. Thanks for letting me vent!!

Thank you George. Its just comforting to know Im not the only one with this difficult injury.My arms have movement but the biceps are damaged severaly. The trauma of an improperly placed harness damaged my musculocutaneous. As you well know the pain is also relentless. I do see a pain specialist and a physiatrist (sp). Its just been so stressful, not just the injury itself, but dealing with LTD, SSDI,doctors, the lawsuit and insurance companies are mind numbing. I was always an active participant in sports now Im a bistander and its tough to deal with. Also living in upstate NY, which is always cold, just aggrevates my bpi even worse. Thanks for letting me vent.

KJ

I just read your notes... just hang in there... so much for you to deal with. I am glad you found the UBPN community you will get lots of support...

And George is good at making rope I see...LOL...
and I have one good shoulder ....hope things get untangled real soon and the pain is managed.

I live sort of up state NY too... 40 minutes NW of the city.
and it always snows here when it rains in the city..LOL... the cold stinks...
Hope you are feeling a little better today
Kath

Hi, welcome to here even if it's under bad circumstances. There aren't many docs (or institutions) who are EXPERIENCED at treating BP injury and know what they are talking about, have you managed to see one yet? As for the pain im afraid there seems to be no real quick fix, im 2 years injured and the nerve pain has lessened considerably, and the pain from the other bone/soft tissue injuries i find best dealt with by stretching loosening and trying to keep warm.
It's a long road to recovery after this one, take hope from the fact virtually all the long-term injured folks say the pain did lessen (or got tolerable?) eventually. And you're into sports? I bet this time next year you are back into something that distracts your thoughts from the damn pain -if you gotta concentrate 100% on the task in hand theres not much room for pain in your thoughts, in my experience. Good luck and let us know how you go!

Thank you every one for the support. Does anyone here have a bilateral bpi from a surgical accident? Or was I the one in a million statistic?

Hi there and welcome-yes, maybe you are that one in a million! In fact you are the first bilateral tbpi I've heard of. TinaT who posts here sometimes has a bilateral birth injury. The pain is bloody awful as we all know but it does improve and you'll be able to live with it in time. I too have 3 kids and it sure ain't easy wrangling them with one arm, never mind having two affected! Glad you found us, ask anything you feel like, noone here minds and no questions are stupid, there is very little info out there and the best resource for adult bpi info is the adults themselves. Take care :0)

Jenny,
Thank you for the support. It was been eighteen of the roughest time in my life. Things had gone well with my life until this accident. I went in to hospital for a laproscopic resection of large intestine due to diverticulitus,which was successful,and while I was under anestisia(sp)obtained this bilateral tpbi. Talk about a shock when I woke up!The doctors were telling me what had happened and I dont think I understood for days,if I do now. What was supposed to be a two week recovery and back to work has become a living nightmare.Its hard to feel like a man when the simplist things become the most difficult to do. Thanks for listening to my rant.

Hi KJ;

I am so very sorry to hear about your injuries, and the way you were injured. I too, like George have read about this kind of thing happening before, but not, as I recall, bilaterally. It seems that operating theatre staff are another group who should be added to the list of people who need educating about this injury, and how to prevent it happening.

I hope you are under the care of a competent doctor who is familiar with this injury; it's important to find one as soon as possible after the injury has happened, to maximise the chances of the best recovery.

Please come back here and let us know how you are; we do have a bit of a laugh here now and then, and a good rant occasionally does you good I reckon...I do it all the time..!

Liz xx

p.s; just one point to consider; If you are pursuing a claim against anyone regarding your injuries, be VERY careful what you 'say' here, as these boards are watched......