United Brachial Plexus Network, Inc.

Hello, I'm one of the lurking mommies. My son is 7 months old and his right arm has OBPI and he has Horners. Initial surgery was not as promising as we had hoped. I like learning about my son's future through you stories.
Thanks,
Teresa

Hey y'all
I'm Lindsey, a 16 year old NC resident with left obpi. Luckily, mine isn't so severe that it highly affects my life style. I have still done dance, gymnastics, and karate, have played softball, and play 3 instruments in the band. However, I can't raise my arm to more than perhaps a right angle, and I can't straighten it fully either. And I can't ever make my hand move fast enough to play xylophone, which is a great frustration at the moment. But anywayz, that's me. Elsetime, all...
Lindsey

OK OK..you can't possibly mean to leave all of us "erb mommies" home with these wild animals while you guys go off on a cruise? Most of our kids are as wired up as you adults!

Christy here, grandma to Katie, robpi. She is pretty much like the adults here, can't do alot of things and can do some things I can't! She has taught us a new BPI clap however and am forever grateful for that. Now the whole clan gets to look odd at the ballgames--just stick your right elbow up and out and bring that left hand over there gents...pat pat pat. While her injury is severe she has had several surgeries and is getting some results. She too has those pains--walking around and just drops to her knees screaming about her arm. Katie is the bravest child I know, she knows no fear and has no clue yet that she doesn't do things just like the other kids. She is usually the leader and I know this will probably change when those teen years hit but will be glad to have all of you on here for her. Well, except for that one post on one of my first visits here...something about cannabis I think....and wasn't there a Hazel on here about that time too?

I can't even braid hair, can you set up displays at the picnics and show our kids how to do it?

It makes most of the mommies feel better to keep an eye on this board, to see what our kids are going to think of us when we they are older. We worry about that alot. Never found a teen yet that liked her parents though...

So thanks alot for all of your input and nice to meet everyone.

I just thought I should mention here regarding the post about cannabis christy is referring to-it was a post saying that cannabis may help the chronic pain suffered by some tbpi and that government sponsored trials were in the pipeline. The trials have now taken place, many of the tbpi adults I know took part in them. These people are NOT drug addicts, they are people who suffer from chronic and crippling pain. As a result cannabis may now be legalised in the UK for medicinal use, as it was before the ban on it in the '70's. Queen Victoria used it regulaly for PMS!

This is a message board visited by people from all over the world. Cannabis is already legal for pain control in many many countries, the fact that it is so effective in controlling neural pain is a fact that I think should be shared. I wish I'd known about it sooner, I'd have saved myself a lot of sleepless nights in agony. I don't think Hazel intended to offend anyone by posting that information. The alternatives for many of us are heavy duty pain meds that are habit forming and very damaging to the body, or unbearable pain-I'd describe it as feeling like your lower arm is in a deep fat fryer, and I can tell you that you'd take ANYTHING to stop it.
Just wanted to clarify-once again none of us are druggies, we'd just rather use cannabis if we find it effective than prescription opiates, I would much rather it was available as a prescription drug so we don't have to break the law in those countries where it's still banned. We also wouldn't have to smoke it or go to the trouble of extracting the active ingredient to take it orally.
The leading tbpi surgeon in the UK is keen to see it legalised for this purpose, the side effects and long term usage are far less damaging than most pain meds and it works! Most of us tbpi need pain relief at least some of the time all our lives. I understand that some may not approve of cannabis use for recreational purposes, that isn't what Hazel's post was about.

You know, I think you took the post entirely wrong. I was joking, Hazel and I discussed this long ago on the old boards when Katie was a baby. I was glad to hear that there was an alternative and some relief of the pain, whatever the means. I don't recall the word druggie being used and never would I use the word. In case you didn't notice I answered your post about a gentleman needing help with his pain meds on the general board. You gotta remember, you guys live the pain but there are parents on here that, while they don't personally have the pain, they watch their kids go through it every day. That isn't easy. There isn't much on the market to touch nerve pain and I know this as well as you guys. And I didn't say hazel was the poster. I hadn't seen her on here for a long time and just remembered her, you named her as the poster.

once again, the post was to join in the discussion, not to slam anyone.

thanks

Hi Christy

I am glad to see that you posted on this board and introduced yourself... as for clapping hands we on the adult/obpi board can identify with the elbow out clap.. all of my nieces and nephews clapped that way and then when I had kids they did it to.....

It was so NICE of you to drop by and say a few kind words...

to let us all know you read this board and appreciate the imput...
Take care
Kath

Sorry christy, that's the trouble with the internet, it's impossible to tell when someone's joking :0) So when you said everyone was a great help 'except that one post on cannabis' then mentioned Haze in the same sentence I drew the wrong conclusion-I know i wasn't the only one who took this wrong so hopefully my post and yours will clarify. Sorry again and thanks for clearing it up :0)

probably was me that was the poster as i sit here smoking a spliff because my pain has been non stop for 2 weeks no sleep.......i get offered from the drs nitrazepam (one of the most addictive sleepers) morphine (makes me go mental) you name it i can get it but id prefer to smoke my brains out & stare at the tv until the pain wears away(hopefully soon), even if it is illegal. i recommend jamacain brown as being the better pain reliever.

oh i should really say hi to everyone cos i havent been around for a while hope your all keeping well? & life is treating you good

bye crazy

Thanks Kath and JennyB. I was probably delerious when I posted anyway and as usual worded everything all wrong.

it is good to see you post Hazell! I look for you on here occasionaly and was wondering how you have been doing. Sorry to hear about the pain. I made the mistake of letting the bath water get too cool while katie played last night and paid for it about midnight. She woke up screaming again, trying to beat her arm off. I haven't been able to teach her the tap tap tap yet Kathleen, she slings it against the walls, her bed, our heads, whatever gets in the way. takes hours to calm her down. And even if she could tolerate the tylenol with codeine it doesn't help those times a whole lot, just makes her fly around the room backwards like a she devil.

Once again, hope it eases up some soon and you get some sleep without the pills. Does the neurotin not help any of you adults? It seems like our diabetic/neuropathy patients get some good relief, until they get really bad off that is. Do you any of you attend pain clinics? I have been seeing alot of the machines they use to give small continuous dosing lately. I also think they are increasing the use of the biofeedback and nerve blocks, especially with all the controversy of oxycontin. In my opinion I am still out on how that biofeedback works however..

Have a good evening everyone!

Hi Haze... nice to see you .... I hope the pain goes away real soon.... and you are felling better....

Christy
As for pain... I saw a pain specialist... and he wanted me to take everything... thought I was a real pain because I did not want to take the medications... I don't do well on medication of any sort... usually become allergic shortly after using them...
As I have always had pain... I did not realize how much I had until I took Vioxx... That was GREAT!... I was so amazed...!!!! The first 24 hours I kept telling my husband --so this is how other people really feel... I had NO pain at ALL... however as usual I blew up my legs were so swollen it was awful and they took me off it and I went back to my normal... then it was Celebrex... did NOTHING... waste of time... then they wanted me to take Neurotin (sp) and after reading some of the posts on the Tbpi board... I knew this was not for me... so I will keep up with my form of normal... I have had great relief from recent physicial therapy... I have three more visits... I have had 19 since July.... I find, as many adults suggest that distraction really works... that is why I multi-task at all times... or is just because I am a woman that I multi-task.... LOL...
Study shown on channel 4-- said men can't multi-task....
If I sit I have to have something to do... read, watch, tv... play with gameboy ( that hurts after a while ask Judy T - Zelda is the best!)... I rarely just sit... I always have something else to do... I guess I am on the busy side " polite for hyper active"

Many people do many different things for pain... but I don't think many of the drugs really touch the nerve pain. Massage, PT, Hot tubs.... seem to help also...

Kath