I just found out I have Erbs Palsy please help
I just found out I have Erbs Palsy please help
Hello,I am almost 32 years of age.I tonight just read the doctors report from when I was 10 months old.I was in a severe car accident and have not been able to use my arm normally my whole life.More so as a child,but the last 5 years have been something awful.
I have severe,and I mean severe neck,back,and arm pain.is this something that is normal with it?I can hardly move it anymore,and have I wasted my whole life doing nothing about it,and now its most likely to late?I also suffer no feeling from my wrist down,and pain spikes that shoot up and down into my neck.
Thanks so much,and little bit of information will help me greatly.
Sincerely
Tracie
Im so confused,and am in awe as to why my family never spoke of this to me.
I have severe,and I mean severe neck,back,and arm pain.is this something that is normal with it?I can hardly move it anymore,and have I wasted my whole life doing nothing about it,and now its most likely to late?I also suffer no feeling from my wrist down,and pain spikes that shoot up and down into my neck.
Thanks so much,and little bit of information will help me greatly.
Sincerely
Tracie
Im so confused,and am in awe as to why my family never spoke of this to me.
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: I just found out I have Erbs Palsy please help
Hi Tracie
How weird that would be to find out you have a brachial plexus injury so long after it happened! I'm so sorry to hear you are having pain, and sorry to tell you that many of us do have pain a lot of the time. I have been injured 24 years and my pain recently got much worse, related to a virus I had. Now that's gone it's much better but it's quite depressing that it still happens so long after the injury.
You could try looking for a bpi specialist who may be able to help you, nerve grafting etc needs to be carried out not long after the injury but secondary surgeries can be done even after many years, or specialised therapy might even help-a tbpi specialist who has long term experience with trauma injuries would be able to tell you. It's important to try and see a specialist whose main area of interest is trauma injuries, because they are very different in many ways from the injuries caused during birth and the teams that specialise in adult trauma injuries definitely have the background knowledge and most important, experience to deal with your kind of injury. Some doctors dabble in both kinds of injury which is fine, however check whether they have had specific training in tbpi and how many trauma injured patients they have seen, especially long term injured people such as yourself who would have totally different issues than someone birth injured.
There is a medical resources link you can reach from the home page, you may find a doctor near you there. The most experienced doctor for tbpi in the states is probably Dr Kline in Louisiana, but there are others. The team at the Mayo Clinic are also world renowned in trauma injuries. A facility with a specialist pain clinic as part of the whole setup is ideal for tbpi, not sure if Mayo has one of those but many people here have been there so may be able to tell you. As long as you have confidence that your chosen team have the experience and knowhow, you'll be fine.
Erbs Palsy is the name given to one of the specific types of brachial plexus birth injury. It isn't usually used to describe trauma injured people like us.
I hope you get some help, the pain sucks! The uncertainty sucks and the fear of things getting worse sucks most of all. Good luck in your search, and keep us posted, you have been injured longer than me which is a rarity around here, I'd be interested in what your doctor says.
Jen NZ
How weird that would be to find out you have a brachial plexus injury so long after it happened! I'm so sorry to hear you are having pain, and sorry to tell you that many of us do have pain a lot of the time. I have been injured 24 years and my pain recently got much worse, related to a virus I had. Now that's gone it's much better but it's quite depressing that it still happens so long after the injury.
You could try looking for a bpi specialist who may be able to help you, nerve grafting etc needs to be carried out not long after the injury but secondary surgeries can be done even after many years, or specialised therapy might even help-a tbpi specialist who has long term experience with trauma injuries would be able to tell you. It's important to try and see a specialist whose main area of interest is trauma injuries, because they are very different in many ways from the injuries caused during birth and the teams that specialise in adult trauma injuries definitely have the background knowledge and most important, experience to deal with your kind of injury. Some doctors dabble in both kinds of injury which is fine, however check whether they have had specific training in tbpi and how many trauma injured patients they have seen, especially long term injured people such as yourself who would have totally different issues than someone birth injured.
There is a medical resources link you can reach from the home page, you may find a doctor near you there. The most experienced doctor for tbpi in the states is probably Dr Kline in Louisiana, but there are others. The team at the Mayo Clinic are also world renowned in trauma injuries. A facility with a specialist pain clinic as part of the whole setup is ideal for tbpi, not sure if Mayo has one of those but many people here have been there so may be able to tell you. As long as you have confidence that your chosen team have the experience and knowhow, you'll be fine.
Erbs Palsy is the name given to one of the specific types of brachial plexus birth injury. It isn't usually used to describe trauma injured people like us.
I hope you get some help, the pain sucks! The uncertainty sucks and the fear of things getting worse sucks most of all. Good luck in your search, and keep us posted, you have been injured longer than me which is a rarity around here, I'd be interested in what your doctor says.
Jen NZ
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Angela Butterfly
- Posts: 483
- Joined: Fri Jul 18, 2003 4:24 pm
Re: I just found out I have Erbs Palsy please help
Dear Tracie,
I would like to respond to "I have wasted my whole life doing nothing about it". I am the mother of a 20 year old daughter, injured at birth. It is likely your parents were told there was nothing that could be done about your injury. I was told that, about my daughter, by 3 specialists within the first 6 weeks of her life. Two of the three Dr's were at two major hospitals in Chicago, and that was in 1984. I was told that my daughter's injury was so severe she would never get good enough for any surgery. I was also told that they were sure her nerves were avulsed from her spine, although they never did a test to find out. All they did was look at her with their eyes. The saddest thing was at the 2nd hospital, in Chicago, the doctor telling me this, when she was only 6 weeks old, had a room full of student doctors behind him, learning the WRONG information. Apparently it was all they knew back then in 1984.
It seems that there has only been recent developments, and a change of idea's about this injury.
I realize the name of your injury is so recently known to you that you are being flooded with all kinds of feelings. If you can, please talk to your parents and ask them what the doctors told them. You are 12 years older than my daughter. I can only imagine what they were told. But as I said above, they probably were told similar to what I was. I asked for therapy and was told by all 3 specialists that it would not be necessary, that she just didn't have anything to work with. I'm sorry, but just even writing about this now, just want's to make my cry. I can only imagine it broke your parents heart too. Angela
I would like to respond to "I have wasted my whole life doing nothing about it". I am the mother of a 20 year old daughter, injured at birth. It is likely your parents were told there was nothing that could be done about your injury. I was told that, about my daughter, by 3 specialists within the first 6 weeks of her life. Two of the three Dr's were at two major hospitals in Chicago, and that was in 1984. I was told that my daughter's injury was so severe she would never get good enough for any surgery. I was also told that they were sure her nerves were avulsed from her spine, although they never did a test to find out. All they did was look at her with their eyes. The saddest thing was at the 2nd hospital, in Chicago, the doctor telling me this, when she was only 6 weeks old, had a room full of student doctors behind him, learning the WRONG information. Apparently it was all they knew back then in 1984.
It seems that there has only been recent developments, and a change of idea's about this injury.
I realize the name of your injury is so recently known to you that you are being flooded with all kinds of feelings. If you can, please talk to your parents and ask them what the doctors told them. You are 12 years older than my daughter. I can only imagine what they were told. But as I said above, they probably were told similar to what I was. I asked for therapy and was told by all 3 specialists that it would not be necessary, that she just didn't have anything to work with. I'm sorry, but just even writing about this now, just want's to make my cry. I can only imagine it broke your parents heart too. Angela
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: I just found out I have Erbs Palsy please help
Ty for the input Jen and Angela.I will look into everything that I can.My mother did tell me that she took me to the doctors every week for the first year,they never did surgery,but had my arm in whats called an airplane splint,or at least thats what they called it back then.Im sure the technology has changed so much in 31 years,and unfortunate for me I missed the prime of when things could most likely have been done.The disability itself isnt what Im having a hard time with,its the pain,and when I had my children I couldnt hold them like most parents can,but I managed.My mother did also inform me they told her the damage was so severe there was nothing left for them to do,and never any mention of surgery.
Mine also stems to my spine as they did some test and whatever they used dispresed everywhere so they aborted it,stated in the doctors report.Sad thing is you have to have money to get help,I am without insurance,and my settlement for my life long injury was only 2,000.My mother said that was depeleted in the first year of therapy and doctor visits.In short I am thankful I have my life,this is so minor compared to what could have happened.I appreciate all of the feedback,and will start with my leads and see where it takes me.
Tracie
Mine also stems to my spine as they did some test and whatever they used dispresed everywhere so they aborted it,stated in the doctors report.Sad thing is you have to have money to get help,I am without insurance,and my settlement for my life long injury was only 2,000.My mother said that was depeleted in the first year of therapy and doctor visits.In short I am thankful I have my life,this is so minor compared to what could have happened.I appreciate all of the feedback,and will start with my leads and see where it takes me.
Tracie
