United Brachial Plexus Network, Inc.

Our daughter was injured at birth. My mother had a car accident 2 years ago and has been dealing with nerve related pain since. She has seen specialists through Kaiser and has had an MRI done but no one is willing to give her any answers. They are not clear what nerves are involved or how it is affecting her. She is frustrated at a lack of answers and ability to deal with her constant pain through her neck and shoulder.

I'm curious about how the injuries differ. I know my daughter doesnt have any pain so why is it different with TBPI? What is the path for diagnosis? For those with HMOs did you seek an outside specialist? What did you do with the information you received?

She has so many questions and I have only experienced this whole process through an OBPI. I am trying to help her find someone who can help get her diagnosed first of all and then figure out what the next steps are for traumatic injuries. I feel like Im starting all over with a new side to this injury.

TIA.

TIA, I would get your mom some testing straight away. EMG's are very common for TBPI... as far as pain goes, yes we get it non stop.... and I am not sure as to why... it does get more bearable, maybe we just learn to live with it, Im not sure.... I dont understand why the kiddos dont get it though.... maybe god spared them as they dont understand it! Who knows... someone aorund here might though! I hope you guys find some answers..

COurt

Hi Tia
It's important that your mother sees a specialist who mainly deals with adults, they very often have a pain clinic attached because the pain is for most of us the biggest issue once we come to terms with the arm. I know Dr Belzberg is a pain expert as well as a bpi doctor, can't remember where he is but someone else will probably post. The problem with diagnosis is there are so many conditions related to neck injuries which cause severe pain and involve nerves in the brachial plexus such as RSD and many others. Sometimes firm diagnosis can't be made because the causes really are not as obvious as a bpi, and MRI and EMG don't always pick up on the exact nerve problem. One tbpi doctor has documented over 60 different patterns of injury in tbpi alone.

The severe pain experienced by tbpi seems to resolve to a large extent within 2 to 3 years, although a minority do experience it for longer. In the early days it is literally unbearable and takes up your whole life, but mine is now manageable and doesn't affect my life too much. Tbpi pain seems related to injury of the lower bpi trunk roots of C7,C8 and T1, and seems linked to more severe injuries involving preganglionic avulsions. Lower trunk injuries are not as common in Obpi and neither are preganglionic avulsions, but there are other factors involved as some doctors have reported that children with very severe tbpi following road accidents who are old enough to complain of pain if it were present do not report feeling any, but sometimes start feeling it in their teens. Milder tbpi don't seem to feel the same levels of pain so it does seem to be related to severity of injury.
We can't feel one another's pain, but in most reports I have read about tbpi nerve pain (as opposed to joint and muscle pain, which although bad, is not on the same planet as the nerve pain in my experience)it seems to be experienced mainly in the lower arm and hand, and has a kind of constant buzzing bgackground with occasional jolts that feel like shoving your hand in a deep fat fryer with accompanying electric shocks. The only time I have pain in my neck and shoulder is when I've been sitting awkwardly to protect the bpi arm or to do something that should really be done with 2 hands when I'm using one.

I hope this has helped a bit, it must be very frustrating to not know what is causing it and I know from reading these message boards that some pain issues involving peripheral nerves are very difficult to diagnose and treat. I hope your mother gets some help soon.
Jen NZ

Our son Chase (age 7, LTBPI) was recently operated on by Dr. Belzberg at Johns Hopkins in Baltimore, MD. Apparently the pain factor is greatest in adults who suffer TBPIs as opposed to children with TBPIs or OBPIs. I had assumed OBPIs didn't often complain of pain because that was all they knew since it occured at birth (my ignorance since I'm not familiar with OBPI). The way Dr. Belzberg explained it is adults experience a much more severe level of pain due to having a mature nervous system. Chase suffered a complete plexus injury and is believed to have avulsed C8 & T1 with the others being in really bad shape prior to surgery, but while he complains of pain in his fingers (hammering),the neurontin makes it tolerable. In contrast, during Chase's surger, we met a post-adolescent male with a recent RTBPI who suffered constant excruciating and debilitating pain despite being on multiple meds. Our hope is that once Chase's nervous system matures, the pain doesn't worsen and my heart goes out to all who do endure this type of pain daily - it is by far the most difficult part of this terrible injury.
Lourdes

This is the start of a good thread. Thanks Tia for posting and for Jenny, Court, and Lourdes for replying. Sometimes questions like these are in your mind and you (I) just dont know how to go about asking them. Ive already learned alot here from you guys. My son James is 12, RTBPI and also experiences those types of pain and I never knew of it being the maturity of the nervous system, and really never thougth to ask. Im curious Lourdes, did Chase feel thise pains right after his accident or did it take a few days or weeks until it hit him?? How about you Court and Jenny?? (if the arm and hand were paralyzed?)

Hi
I work in the Uk with the Erb's palsy group(a support group for people with obpi) and I was lucky enough to attend the International Symposium in Italy last year where a large number of the world leading surgeons in bpi were in attendance.
One of the topics discussed was pain and one of the reasons for the difference in pain in TBPI and no pain in OBPi was explained ( a little!)
in newborns babies the nervous system is not fully matured and within the first few weeks off life, the nervous system will be sending and receiving millions of signals from the babies limbs - each touch, sensation, massage, cuddle etc will send a response to the babies brain and it will create neural pathways with then mature to carry all sensations including pain.
In the arm affected by obpi - the nervous system cannot carry these messages to the brain,due to the damaged nerves, and so the neural pathways assume they are not needed and quickly die off - so they can't conduct pain ( or any other sensation)
Now obviously some children will have some neural pathways, to conduct some areas of sensory feelings, but they are very limited, for the most part the children are pain free for this reason ( well, I THINK thats what they said - it was hard to take in much from a 3 minute presentation!)
Of course in an adult/older child the neural pathways are already in existance, so they are able to carry pain sensations to the brain, which is probably why TBPi patients suffer from so much more pain.
I hope this makes some sense.

I'm sorry, Tia, I don't have any advice to offer you.

I am 56, LOBPI. So much had changed since I was born. I wonder what my life might have been like if my parents would have had access to something like the internet, where they could have gotten all the information that is available today, but wasn't available then. I'm sure that you know more about your child's injury than my parents knew about mine. More than I know, for that matter.

You asked for help about your mother. I can't help you there either. I was lurking on this message board in order to learn more about the concerns of TBPI people.

Karen, I want to answer your post.

As I said, I don't know that much about my own injury -- which nerves were injured, the extent of the injury, etc. I want to tell you that I do not feel, and cannot remember ever feeling, pain from my injured arm the way that I would feel pain now from any type of current injury. But then, who can remember what pain we felt as infants or small children? Can anyone remember the pain from being slapped on the bottom just after being born?

You did say that it was only a three minute presentation, which you may not remember exactly. What you said about pain makes sense to me, BUT...

For all of my life that I CAN remember, my arm has been capable of feeling someone's touch, the sensations of pain, hot, cold, wet, tickle, itch. I think that if my right arm can feel the sensation, then my left arm can feel it, too. This may or may not be true for others who are OBPI, I don't know. I just felt a need to let you know that my injured arm does have nerve connections that can sense these things.

Joanie

Hi Priscilla,
I've been thinking about you and James a lot lately - hope all is well. Chase came home from his injury virtually pain free, but he was sent home with a pretty heavy supply of Tyco which he hated. Our pedi rehab Dr. had explained the anticipation of pain for Chase, but because we knew nothing about this injury, we didn't pay much attention as he hadn't yet complained. It took 2-3 weeks before Chase began having pain and it became unbearable. Unfortunately with the neurontin, you have to gradually increase until you get to a place where it actually helps. This was the most difficult time for him and us. We were told the pain would likely increase over the next few months following his injury and it did. After surgery, we began to eliminate his mid-day dose and he seemed to tolerate it fine until recently. He now complains of pain in his hand and fingers daily, but he doesn't want to add his mid-day dosage back. I'm waiting to see if his pain will interfere with school when he returns. He has not been back to school since he was injured in March, so I don't know what to expect. I believe the pain he has is from the avulsed nerves and that will not likely go away. Because of James' age, he could still be on the younger end (I hope) and not have the excrutiating pain adults suffer from - does he? I know there's a gal in Alaska who was injured at age 14 and she doesn't take any medication or complain of pain. Like I said earlier, I hope the pain they have now doesn't worsen as their bodies mature. I'd love to hear how you're getting on.
Lourdes

Kazz.... thanks for the explanation there... that was great and really makes a ton of sense... again your wisdom has brought us through another dilemma! haha

COurt

Missed seeing yoiu guys this year at Squires, sounds like the kids did a great job with the bands for sale! YEAH! Hopefully see you next year!

Lourdes, Ill e-mail you first chance I get.