4 yrs searching for solution!!

[mella]

hi,my name is eathar..4yrs ago my sister was born ,unfortunatly she was too big (5 kg)so they had to pull her hardly around her neck!!her left hand was totally paralysed and we were told that this is just temporary,but..she used to move her hand randomly so we thought that her hand start to recover,untill she became 4months when the doctor told us that there is a cut in her nerves and she need grafting after another 4 months,she did the operation when she was 9 months by a visitor doctor out of the country,the grafting was done using nerve fibers from her legs.
year after year there is some progression but incomplete ..wht is scaring us most is the deformation we noticed although she is undergoing physical therapy..now after all they said that she needs another operation as regard for her musles plus nerves..
our problem is that we feel that there is no one can know wht r the affected nerves and as i told u the sergeon is a visitor frome france i think!!soo difficult to keep in contact with him!!!
plz i'm asking for help ..
N.B.i dont live in USA .

[dpdraut]

You are doing the right thing by searching the internet for support groups, by finding a parent who has gone through the same thing you are they will be able to direct you to the correct resources. We had to travel from Atlanta to Michagan to find the necessary information we needed to help my grandson, but once we did everything became better. Hang in there and keep on trying someone else is suffering from the same thing your sister is, I am sure you are not alone.

[mella]

thanx alot,i do feel supported cuz i found people with the same problem having the sme situiation and feeling the same as u feel, but still cant find answers about many Q ,i need a Dr. who will direct me to the right road without falling in mistakes.

i am 3rd year medical student which makes me a bit terrified about this matter and iatrogenic mistakes..

thanx again..eathar

[marieke]

Where do you live mella? I am not in the USA either, but in Qc, Canada.

[mella]

hmmm..i live in the middle east,dubai if u know it,its too far,ha!!

[Kath]

I responded to you post on the Adult/OBPI message board but perhaps I should also copy it here for you.

Eathar

We have a medical Resource Directory at this website.
http://ubpn.org/medicalresources/

I do not see a list for your country but there are doctors in the UK and Europe they may be able to give you information on bpi specialist in your country.

I attended the
XIV International Symposium on Brachial Plexus Surgery
Club A. Narakas in Brescia Italy last October
http://www.studioprogress.it/html/narakasprogr.htm

I see a doctor listed from your country perhaps you could contact him.
M. ALQattan (Ryiadh , Saudi Arabia)
The value of Horner sign

This program contains a list of doctors who presented papers.
These are doctors from all over the world.
I hope this will help you to contact someone close to home.

Kath (adult/obpi)

[mella]

THANX ALOT kath,its a plesure for me to hear from u ..
i've havn't found Drs. or even refferals here in my country,but i'll do wht ever it takes to reach my goal,fly any where in this world , i just wnted to make the first step from here in order to build a hard base for the next one.

thanx again,
Eahtar

[Karen HillyerUk]

Hello
my name is Karen and I live in the Uk - I think the doctor you mention in your post from france may e Professor Alain Gilbert - he works at the Insitut de la Main and I know of another family from Saudi Arabia whose child he operated on - if you e mail me privately at info@erbspalsygroup.com I will be happy to put you in touch with the mother of the child in question
I hope this helps
Karen

[admin]

Dear Sir;

My son is almost 6 months old (Born on April Fools Day). He was born at Florida Hospital in Orlando, Florida, USA. Very similiar to your sister, my son's OB screwed up badly, and went into a panic, and yanked my sons neck, and eventually (after the NICU emergency button was hit, and the NICU staff came running in) he reached in and yanked the baby terribly to get him out. He was crushed in the pelvis and suffered severe birth trauma due the this doctors extreme negligence dealing with Shoulder Distocia.

His APGAR score was low after birth, and you could see his arm was not moving. But, within a few hours of the birth, the arm not moving was not our only concern. He had a double pneumothorax (collapsed lungs) and was placed on CPAP. Eventually, he took turn for the worst and went on a ventilator and has chest tube placed.

Thankfully, with the skill of the Neonatal ICU staff, he evenually made a recovery from the lung collapse.

However, he suffered Complete (Total/ Global) Brachial Plexus Palsy on the left side, as well damage to his left diaphram. Additionally, it was clear he was suffering from Horners Syndrome on the left side of face & eye caused by the Brachial Plexus Palsy injury.

Through therapy from 4 weeks into 5 moths, we saw no improvement at all. He had complete paralysis on the left side from diaphram, through the shoulder and the entire arm.

After MRI in month 5 showed at least 2 avulsions as well as the covering from his spinal colum being torn and spinal fluid to leak out (this caused a cyst to form on his spine), it was decided to do immediate surgery. However, the cyst is inoperable and we will need to monitor it as he grows.

I need to point out that we followed up with experts from Boston, MA; St. Louis, MO; to Miami, Florida. We decided to go with the Brachial Plexus Palsy team working out of Miami Childrens Hospital, Miami, Florida.

The surgeon is reknowned; Dr. John A.I. Grossman, M.D., F.A.C.S. in Miami, FLorida. He is a plastic surgeon, as well as a face surgeon, hand and nerve surgeon specialist. He is well known as a vastly knowledgeable expert in Pediatric Neurosurgery dealing with Brachial Plexus Palsy.

Upon doing surgery, he found the damage severe and extreme. All nerves were avulsed except for C7, which was torn. He used the nerves from the back of both legs and created a large and extensive graft transplant. Hopefully, with Gods grace, this transplant will work and we will see some regeneration.

My son is back in PT/OT as well as seeing two Osteopathic Doctors for his crush injuries (Spine, hips, cranial).

I will tell you this: spend time, and research the right and proper doctors for your sisters follow up treatment and care.

Never give up! I will not.

If you want, you can go to Dr. Grossmans Website @
http://www.handandnervespecialist.com/
Phone (305) 666-2004.

The information site for the Miami Childrens Hospital Brachial Plexus Palsy program is:
http://www.mch.com/clinical/neuroscience/brachial.htm

Good luck to you and your sister.

God Bless.

Jim S.

[admin]

Dear Sir;

My son is almost 6 months old (Born on April Fools Day). He was born at Florida Hospital in Orlando, Florida, USA. Very similiar to your sister, my son's OB screwed up badly, and went into a panic, and yanked my sons neck, and eventually (after the NICU emergency button was hit, and the NICU staff came running in) he reached in and yanked the baby terribly to get him out. He was crushed in the pelvis and suffered severe birth trauma due the this doctors extreme negligence dealing with Shoulder Distocia.

His APGAR score was low after birth, and you could see his arm was not moving. But, within a few hours of the birth, the arm not moving was not our only concern. He had a double pneumothorax (collapsed lungs) and was placed on CPAP. Eventually, he took turn for the worst and went on a ventilator and has chest tube placed.

Thankfully, with the skill of the Neonatal ICU staff, he evenually made a recovery from the lung collapse.

However, he suffered Complete (Total/ Global) Brachial Plexus Palsy on the left side, as well damage to his left diaphram. Additionally, it was clear he was suffering from Horners Syndrome on the left side of face & eye caused by the Brachial Plexus Palsy injury.

Through therapy from 4 weeks into 5 moths, we saw no improvement at all. He had complete paralysis on the left side from diaphram, through the shoulder and the entire arm.

After MRI in month 5 showed at least 2 avulsions as well as the covering from his spinal colum being torn and spinal fluid to leak out (this caused a cyst to form on his spine), it was decided to do immediate surgery. However, the cyst is inoperable and we will need to monitor it as he grows.

I need to point out that we followed up with experts from Boston, MA; St. Louis, MO; to Miami, Florida. We decided to go with the Brachial Plexus Palsy team working out of Miami Childrens Hospital, Miami, Florida.

The surgeon is reknowned; Dr. John A.I. Grossman, M.D., F.A.C.S. in Miami, FLorida. He is a plastic surgeon, as well as a face surgeon, hand and nerve surgeon specialist. He is well known as a vastly knowledgeable expert in Pediatric Neurosurgery dealing with Brachial Plexus Palsy.

Upon doing surgery, he found the damage severe and extreme. All nerves were avulsed except for C7, which was torn. He used the nerves from the back of both legs and created a large and extensive graft transplant. Hopefully, with Gods grace, this transplant will work and we will see some regeneration.

My son is back in PT/OT as well as seeing two Osteopathic Doctors for his crush injuries (Spine, hips, cranial).

I will tell you this: spend time, and research the right and proper doctors for your sisters follow up treatment and care.

Never give up! I will not.

If you want, you can go to Dr. Grossmans Website @
http://www.handandnervespecialist.com/
Phone (305) 666-2004.

The information site for the Miami Childrens Hospital Brachial Plexus Palsy program is:
http://www.mch.com/clinical/neuroscience/brachial.htm

Good luck to you and your sister.

God Bless.

Jim S.