United Brachial Plexus Network, Inc.

Hi,
it's been quite sometime since I visited the site...I also just posted a message this morning but it is not showing. I went into much detail in my previous post so I will keep this one short. My son may need to have the acr surgery, he is a post TT patient and doing well....He will also be having the serial cast put on next week....
Anyone with information please pass it on....I'm trying to figure out what to expect with both procedures. My son is 15.

Thanks
Tina

Good Morning Everyone,

Tina your message was in th Traumatic message board...

It has been a few years since I have visited the UBPN site. My son had the TT surgery almost four years ago and has taken some remarkable steps forward...Mark was diagnosed as an infant with Erbs Palsy and through the years there has been many ups and downs....the past few years I have only seep ups because I know how far he has come...However, Mark sees things slightly different...he sees his recovery yet is still frustrated at times.....
This is where we are today...Mark has been working out with his budies as most teenagers like to do...The injured arm is week and makes what mark wants to accomplish more difficult...(as a mom, I say but look how much you have done and how much improvemnet there is)...not what a teenager want's to hear..(I believe the only people that can truly understand are people who live it everyday like son)...Anyway, Mark is back in therapy three times a week and I have sent the doctor pics of Mark so he can get an idea of how mark as improved or not in the past few years...
Mark has regressed slightly since the TT surgery and his Physician has requested a Serial Cast to see if this will help the range of motion..( He was not happy to hear this but will do what he needs to)....After the cast comes off the Doctor will decide if he needs the ACR surgery...
I would love to hear everyones thoughts or experiences with serial casting, post TT, ACR surgery etc...
What to expect with an ACR surgery - pain, recovery, outcome
serial casting - out come ...............Have a great day
Tina

First I want to thank Marieke, You are so knolegeable here and your postings I saw the word ERBS so that what I will respond to. I have no clue what ACR means or serial casting means But I do know how it is growing up with erbs over my life time. I will not be redondant on my past post, I think I have done that enough. If I could speak to Mark I would say go for the surgury if you could but really be sure it would help you to do thing more like your buddys do things if you can? I remeber standing in front of a number of doctors in the 60s at a children hospital that stated that there was no help for my erbs, So I had to make my life based on no help for my ERBS. By my past post you know it did Mark has a chouise but please get enough information on possible on out come. I remember going to a Chicago picnic for Bpi and talking to mothers and children with limitation like me. All the minnie mies like me . Sometimes its all about trying than being left in despair and being here trying to share what works and that always makes me Because there is real help here,by so many

Tom

Tom, I say this again with respect.. please STOP posting comments on every post when you have nothing to actually contribute that has anything to do with the question asked. I know I am not the only one who feels this way, but I am tired of it and it does not help the people asking the questions.

Ok , That fine I understand. Take me off the sign in ubpn, please. I am done trying to help the best I can.

Tom

Hello,

I am starting to feel some tension between the two of you. My feeling is this..send me an emial if you have any info or just what to tell me your story...I am willing to listen and along the way the more I learn about erbs and the many different circumstances and how they are being handled the better it will be for my son (it helps to know you are not alone)......So if you want to drop me a line just to say keep smiling (because some days I don't want to) thats awesome....When you have info pass it on...have a great night god bless
Tina

Hi Tina, Thank you
I guess I am responding to the hole need than the question it self. I am sure my heart is in the right place and so is the young lady issues. I did not really understand I was doing something wrong or in future if I response would not start another issue on how I may respond. I dont want to have any issues here because I care to much. But leaving here may be what I need to do and it is what it is. I truly care but I respond to things that I should not I dont fell bad at all , I know I did help the best I could but I just do not know how to change my gut felling on my response even thow it may not be the way I should I stay here after the first issue from moms at the Chicago Picnic I was at a few posting back. I do not want to have issues here but leaving is what I need to do(by respect to others).

I wish everyone the best for sure

Thank You,

Tom

To Master Diver Tom,

This public message board was set up for the brachial plexus injury community and you are entitled to be here as anybody else would be. I, for one, love your posts because all you are doing is reaching out with your heart and that's how I read it. If someone doesn't like what or how you write, then let them skip over your posts. Nobody is forcing anyone to read it.

Not all posts have to be scientific, factual or well-written. But sharing your heart like you have over the years - the kindness and compassion and the reaching out you have done has been incredible. I thank you for taking your time to read the posts and respond to the posts and I applaud you for becoming actively involved with this community and staying here.

I recently learned a huge set of lessons in the past few months when my mother became ill and then passed away. My mother was an intelligent, well spoken, active person. Then one day an illness took hold of her and then the medication broke her down - day by day my mom became unable to mentally process, unable to make sense with her sentences and very ill. I stayed with her a long time. Each time a new nurse came in, I could feel that she was writing my mom off --- she's just old and has dementia and what the heck, no need to show her any compassion. And I sat there and told each one of them who my mom was, and what she had accomplished in her life and that just two weeks before that she was literate, active and swam 40 laps in the pool. They looked at me with disbelief.

So for anyone here who is making a judgement on you, by what you say or how you say it, let them think twice. You are a human being just like they are and as long as you are abiding by the policies of this message board, you have every right to be here and to post.

I - even if I am here alone - I personally give you a standing ovation for all the support you have given throughout these years and I hope you stay and continue to share your heart to all who need a piece of heart.

Thank you.

-francine
mom to maia - age 11 1/2

Master Diver Tom,

I agree with what Francine has said - I myself, along with my daughter and granddaughter (LOBPI, who at the time was 7 months old) remember meeting you at one of the Chicago picnics - you were one of first adults with an OBPI that we met, and at that time we felt your input was helpful and encouraging - that is what you have been trying to be all along - just my two cents worth! C. Bearly

Thanks for the responses....Tom Again I agree there are many ways in helping and one of them is sharing and being supportive.....Feel free to e-mail me anytime....God Bless Tina