United Brachial Plexus Network, Inc.

Hello,
I ahve been lurking on the other message boards, and I hear most adults talk about the constant pain they are in. Savannah NEVER complains of any pain. She has a tbpi from 2 years ago, and is now 7 years old. I tend to look at things so short term, and it is so depressing to think of her being in pain as an adult. It relly hit me when reading Hazel's story in the Chronicle. At what point does the pain start and does it really rule your life daily?
Thanks,
Stephanie

Stephanie,
How are you!!! I am so glad to hear the Savannah is not in pain. Are you going to camp again this year?

Anyway I did want to say that I have read a lot of discussions that revolve around pain for kids. Some where I recall it being questioned that perhaps this major pain issue was not as big of a deal for kids injured while they are young. I know some obpi kids have pain but I have heard that it is a different kind of pain between TBPI and OBPI.

So maybe Savannah will not have pain. I hope she doesn't! I am gald that you are seeking answers to help!
Many Blessings,
Kristie

YOur question When does pain start? Well I was finally diagnoased with Erbs Palsy which is the same as the brachial plexus or very similar. We didn't even notice I had a problem until I started playing basket ball. I would have to say I'm 23 now and the pain didn't really start that bad until I was around 19 and started working in a factory. Was very hard and painful. p.s. Mine is birth injury

Hi Stephanie
my name is Karen and I am Mum to Gavin age 11 robpi.
Gavin does not suffer from pain in his affected arm at all. I am closely involved with the Erb's palsy group in the UK and we have about 1000 members registered and for the vast majority, none of those children complain of pain either.
It is VERY important to distinguish between the different injuries here, an OBSTETRIC brachial plexus injury is one which happens during the birthing process (there may be exceptions, but for the most part this is true!) and a TRAUMATIC brachial plexus unjury, which occurs as a result of a very severe trauma causing damage to the brachial plexus later in life, such as the injury which Hazel suffered.
For those unfortunate people who have suffered a TBPI
there are often extremely high levels of pain associated with this injury - to date, as far as I am aware, there has been NO definitive reason given for this difference, there are many theories, but no real answer.
I want to reassure you, that Savannah may NEVER experience pain in her arm due to her injury - I know several adult obpi's who have neither pain nor sensation in their arms at all.
Of course there are always exceptions to every rule and of course EVERY child and their injury is individual, but I didn't want you worrying that at some given point in the future you little one would suffer this dreadful pain - let's all hope and pray that she never ever develops any pain at all.
best wishes
Karen and family

Karen

I am not sure how many in your group are adult/obpi but we have had different views on pain and the obpi child... many of the children complain of the same experiences that those of us who are adult/obpi remember...

I never told my mother I was in pain... I never realized that what I felt was pain I have always been obpi and experienced pain at different times due to obpi.. and I guess it depends on the extent of your injury as we all know they are like fingerprints...

The adult/obpi who post on the OBPI Adult/ message board report pain has always been an issue for most of us. And it is compounded by overuse and compensation. Compensation begins to take its toll during our late teens and early twenties... We are long term bpi by the age of 20...
I had electricial shocks in my arm... and still from time to time get twinges out of no where doing nothing... recently a very fine doctor told me "there is no pain with Erb's" I told him that was not true and that goes along with the old fashion ideas that children do not feel pain... that seems to be in the text books... Children do not know how to describe pain and can be distracted when awake... also obpi do not know what it is like not to have pain that is my personal experience... I took Vioxx a little over two years ago and was shocked... something was missing and I did not know what it was... until I realized it was the absence of any pain... the down side of that is that I had an adverse reaction to Vioxx and only took it for a few day... but was amazed at that experience....

this is the link to a post for those who answered publicly on the subject of pain....
http://ubpn.org/messageboard/thread ... hread=4021

I think the pain experienced by tbpi/adult is much more intense and different... I don't know why but I do think some of it is because they go from a "normal" state to a dramatic change in their body or it could be because they are adults and are keenly aware that you are not supposed feel such pain... I think it was Jenny who wrote about a report that tbpi/children felt pain different... it was awhile back.... maybe adults react differently to pain then children do... That study on children pain was from the UK I think... Jenny can you find the link???..
Could it be that children with tbpi have much the same experience/pain reaction as obpi children?
OBPI children do not know how to describe pain... and when many do the physicians tell them they have no pain... so pain denied does not exist? ...

We know that infants feel pain and this is a traumatic injury in an infant and adult. When your nerve is injured it creates pain issues.

Kath

the quote about tbpi pain in children was from Rolfe Birch's book about bpi. In his 30 or so yrs of dealing with bpi (mainly tbpi) he's found that the onset of tbpi pain is in almost all cases immediately after the injury and is most severe in the first couple of years, in many cases severe enough to stop the person functioning normally, causing blackouts etc. The only exception to this is tbpi in children, to date he has not had a single case of a child with a trauma bpi who reported pain of this kind, even older children who are well able to express and tell adults how they are feeling, and pre bpi experiences to compare how they feel-they do get pain from the other injuries many suffer at the time of the accident (I've yet to met a tbpi who only got a bpi, most of us have multiple fractures etc as well), the idea that children don't feel pain is ludicrous and anyone who broke an arm or whatever as a child can report on that! but not the crippling neural pain described in the Outreach article as being the norm for adults. Some do report neural pain when they reach their teens, Prof Birch feels that maybe some maturation of the nervous system means the central pain can be felt after that time. The 2 people I know who got their tbpi as kids (aged 6 and 4) had no bpi pain immediately after the accident and remain pain free as adults, except for overuse pain which in one case led to amputation aged 18. That girl is now a gold medallist skiier.
I think we are still trying to find out about all this stuff, even tho I am tbpi and had the crippling pain for the first couple of years, once it had become manageable I found it hard to relate to what Hazel was feeling. It's important to understand that recurrence of the pain after it had been manageable for a long time is rare and in Hazel's case was almost certainly related to the cat bite injury and subsequent pain that hospitalised her for 3 months. She had managed so well for 18 yrs, for the pain to come back with such relentless strength was more than she could bear. All the reports about long term pain show that this is found mostly in cases where the whole plexus has high impact avulsions as in Hazel's case. My experience of tbpi pain immediately post trauma is that it's quite a lot worse than labour pain and the pain from the 6 breaks in my arm and my hand in which every finger was smashed was literally NOTHING compared to the nerve pain, not something anyone could just 'get used' to-if you have central bpi pain you'd know all about it! I've never experienced anything like it in my life, sometimes, rarely, it does return for a day or so, reminding me what it was like at the beginning, I keep my hand WELL AWAY from my cats and wear a covering permanently because I do not want to risk an injury I won't feel until it's too late to prevent infection, and have the pain return permanently as Hazel did.

Hope that helps a bit Stephanie, hopefully Savannah will be like the others who got tbpi as kids and managed to avoid the pain, fingers crossed. As the other posters say, take any reports of pain from her very seriously but don't worry too much, the vast majority of us cope very well.
Jen NZ

Thanks Jenny for that great answer...
Kath

I know this is a big concern for me, as well. My big concern now for my daughter is overuse of the non-BPI arm. Is there any way to "prevent" overuse? Does ergonomics come into play at all? How do we help our children be proactive in not overusing their non-BPI arms?

Thanks so much Jenny for expressing the Hazel's case was an exception not the rule. That was the only thing that made me think twice about including the tribute to Hazel, was the fear it my cause our parents in the BPI community -- about pain and the inability to cope with it. However, I think her stepmom did a splendid job and your article balanced it out nicely!

hey there! pain doesnt really bother me bcos i kinda know how to control it or over come it! I dont really know when i started to get pain in my arm, maybe that is because i wasnt aware of it when i was young or because well i dont really know.

but i didnt tell my mum either when it was sore because it was a strange sore, its not like cutting your knee or somethin it was more like shock! sometimes my arm shakes but each individual learns how to deal with it and i dont think its a big part of everyday life, its not for me anyway!

Michelle x