New to the site; seeking advice . . .

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
Loving Cameron
Posts: 2
Joined: Tue Jul 31, 2012 11:28 pm
Injury Description, Date, extent, surgical intervention etc: Grandson born 9lbs 13oz, got stuck coming out. He needed to be resucitated. For 3 days they keep saying they do not think Avulsion, however, his right arm does not work, he has Horners syndrome in his right eye and diaphram issues. From what I have read, the eye and the diaphram are signs of Avulsion and I am concerned he is not being diagnosed properly. I was happy to find this site because tomorrow they are supposed to be talking to a neurosurgeon from Johns Hopkins.

Re: New to the site; seeking advice . . .

Post by Loving Cameron »

I'd like to thank you all so much. I am Cameron's Nana. Finding this site when we did was a Godsend to us. I have read many of the different posts and am comforted by the support here. I know that we have a long road to go and it means alot to know you are here to help. Hopefully, in time, my daughter, Cam's Mom, will find this site helpful to her as well. She has a fantastic support system, No. 1 being her sister who posted this. This is all new to us and frankly, scary as ****! Again, I can't thank you enough for your words of wisdom and well wishes. I'm sure we will be picking your brains alot in the months, well probably years to come!
jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: New to the site; seeking advice . . .

Post by jmar »

to loving cameron, if camerons mom cant come on here for herself for whatever reason, there are the two of you who can come on here any time you wish. although some of us were injured as adults, we can still give you the support, advice, listening to you sound off, yes a lot of people get on here and let off some steam when it gets too much for them, and just about anything else you need. welcome to the club we wish did not have to exist.
katep
Posts: 1240
Joined: Mon Mar 29, 2004 3:20 pm

Re: New to the site; seeking advice . . .

Post by katep »

I will say, our son had eye issues, too, and we were told there is another way for the eye on the BPI to be made droopy, related to the BPI but in a different area than that which causes Horners, and is not connected to avulsion. Our had a droopy eyelid but there were some other symptoms for Horner's which he did not have. He had reasonable recovery, needed a shoulder surgery but no nerve surgery.

Kate
agrasso11
Posts: 6
Joined: Tue Jul 31, 2012 10:57 pm
Injury Description, Date, extent, surgical intervention etc: My sister has just had a newborn (4 days ago) and has been diagnosed with brachial plexus injury. He has Horner's syndrom and problematic diaphragm. Has not yet been seen by a neurologist. I am seeking all the information I can find to assist her in moving forward

Re: New to the site; seeking advice . . .

Post by agrasso11 »

Thank you again everyone. I saw my angel this morning and he was squeezing my finger with the affected hand. I know this doesn't mean that he doesn't have a long road ahead of him, but it is certainly a positive sign. Things are sinking in a bit with my sister, and she is anxious to get to see Dr. Belzberg and hear his evaluation of the injury.
Tuckersmommy
Posts: 57
Joined: Fri Jun 04, 2010 11:47 pm
Injury Description, Date, extent, surgical intervention etc: My son was born At Parrish Medical Center in Titusville,Fla.After becoming stuck in the birth canal A doctor(any doctor)was paged 911.Believe it or not There was NO Obgyn on staff to preform a delivery,so a midwife and one other nurse had to deliver my son.He suffered 2 torn nerves and came out lifeless...
We see Dr.Grossman In Miami along with Dr.Price.He has had a nerve transfer in 2010,A round of botox and a recasting in 2011 and now we will having another round of botox in which we pray no cast will be needed.He is a smart handsome little boy who has come so far and everyday I feel he's improving!
Location: Port Saint John,Florida

Re: New to the site; seeking advice . . .

Post by Tuckersmommy »

That is a amazing sign :P Keep the faith...
Life is a dance~We will all learn it as we go
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: New to the site; seeking advice . . .

Post by Carolyn J »

Welcome to our UBPN Family.( I can't remember if I posted this before and am short on time to check) . We've never asked to be in this "BPI world", but we do care, we understand instantly where you are and give support.Everyone is welcome on any message forum boards.
Carolyn J
LOBPI/74
Carolyn
jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: New to the site; seeking advice . . .

Post by jmar »

WOW!!! WHAT GOOD NEWS!!!! that is awesome. maybe he will have a great recovery. hopefully a near full recovery. he might always have some deficits, but it sounds like he is making amazing progress already. hang in there. you are a great aunt for the little guy. everyone needs an aunt like you.
katep
Posts: 1240
Joined: Mon Mar 29, 2004 3:20 pm

Re: New to the site; seeking advice . . .

Post by katep »

That is fantastic news! Hand function is a really really good sign, especially with the diaphragm involvement and Horner's indications. Here's praying that the impact of the stretching was only temporary. Hugs to your little nephew.

Kate
agrasso11
Posts: 6
Joined: Tue Jul 31, 2012 10:57 pm
Injury Description, Date, extent, surgical intervention etc: My sister has just had a newborn (4 days ago) and has been diagnosed with brachial plexus injury. He has Horner's syndrom and problematic diaphragm. Has not yet been seen by a neurologist. I am seeking all the information I can find to assist her in moving forward

Re: New to the site; seeking advice . . .

Post by agrasso11 »

Hi everyone. Just wanted to thank you again. It's so hard to see the people you love more than anything go through this. Little Cameron is home, with Oxygen to make sure his saturation levels are good, and monitors to make sure he is safe. They don't have an appointment with the pulmonologist until August 20. Cameron is still getting stronger with the hand on the affected side, but it's not totally normal. And now appears that on the other (left) side his little fingers are not all doing the same thing all the time, which is worrisome. I AM JUST PRAYING and praying that she gets some ANSWERS soon. The PT from Johns Hopkins is coming to their house on Wednesday to do an evaluation, but they have been told that Dr. Belzberg's office will call them to schedule the appointment. Of course, I just hope that happens soon. It's so hard to wait.

I am so sorry that I just never knew about this before. It has changed my, and my family's, life forever, and I want to be involved in doing something to increase peoples' awareness. Again, thank you all for your knowledge and encouragement.
Loving Cameron
Posts: 2
Joined: Tue Jul 31, 2012 11:28 pm
Injury Description, Date, extent, surgical intervention etc: Grandson born 9lbs 13oz, got stuck coming out. He needed to be resucitated. For 3 days they keep saying they do not think Avulsion, however, his right arm does not work, he has Horners syndrome in his right eye and diaphram issues. From what I have read, the eye and the diaphram are signs of Avulsion and I am concerned he is not being diagnosed properly. I was happy to find this site because tomorrow they are supposed to be talking to a neurosurgeon from Johns Hopkins.

Re: New to the site; seeking advice . . .

Post by Loving Cameron »

Hi again, it is me, Cameron's Nana. Just wanted to let you know that it was actually a Nurse that came today to visit Cameron, we thought it was a PT. She checked him out and went over the paperwork from the hospital. She was concerned that my daughter had not been called yet from Dr. Belzberg's office. She called them and they stated that the hospital never sent the referral and then she called the hospital and left a message for the pediatrician as well. Apparently Dr. Belzberg is out until August 24th and the nurse felt he needs to be seen before then (praise the Lord!) and is working out a visit with another doctor in the office and to get the long awaited MRI. Still no appointment, but finally SOMETHING!

He is just so precious.
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