New Here- My Story

[EllenB]

Hi Tiffany,

To answer your questions, John didn't have trouble with his lungs before the accident, and the only real (permament) injury was the five bp nerves. So he had other nerves available (including the phrenic) to transfer over & power muscles. I doubt a surgeon would use phrenic for your brother since he already has problems from his accident.

You mentioned his nerves were probably dead by now. In effect, avulsed nerves are 'dead' once pulled out of the spinal cord. There are some advances in reimplanting these nerves back into the spine (in other countries, i.e. England) but that has to be done very quickly after the injury & here in the US, doctors tend to wait several months to see if nerves come back on their own before going in for surgery. Muscles start to atrophy when not used - thus the "race" to get them innervated with repaired or transferred nerves, before too late. My guess is the best outcome for your brother will be via transferred muscles (such as gracilis from his legs) and transferred nerves to power them.

Take care,

Ellen

[tmkendra]

Again, thank you for all of your insight. I will be sure to let you know of any changes or advances in our path to the Mayo.

[ptrefam]

Tiffany,
I made the request to our insurance to have Mayo covered as it was out of network. I had 2 drs write referrals. Then insurance was dragging their feet. So, I kept in contact to see what else I could do. I finally said look the neurosurgeon here doesn't do this type of surgery and there is no one in plan. The drs are specialists and the use of his arm will affect his whole life, he's young and needs his arm to work if possible. She said it was a dr that was looking at the records. I asked the drs name. After she told me I asked if I could talk to him and was told "no" he doesn't talk to patients. Hmmm, so if he doesn't talk to patients how is he determining their treatment. Ok so anyway I said ok, I have your name and Dr ---'s name. So now I know what names to give my attorney as Dustin had planned to be a surgeon himself and without the proper treatment a life time of lost wages will be a lot. She said well you should add your neurosurgeon's name too. Lol, he gave the referral we asked for so don't know why we would go after him. Surprising the next day he was approved. Don't know if that's what made the difference but I think it may have helped.
Sue

[beth lucas]

Hi Tiffany....

I am new today to this site also, I have spent hours just reading what others have been through! Like your brother my husband is almost 1 year after injury and all they choose to do is medicate. It took drs almost 7 months to determine what was wrong because he has movement in the left arm but no sensation. I wish you the best, the only advice I have is never quit things around here seem bleak a lot.....but we hold onto the hope that someday we will find the right doctor!

Best of Luck
Beth

[Janelle54]

Hi Tiffany,

I just ran a search on NH, MA, & ME to see if there was any adult in my area that I could talk to about their BPI injury. I don't know if this will help you but these are the doctors that treated me the day of my accident at Mass General Hosp.

I was on my way to work on 1/2/07 at 5:00 am. I hit black ice at about 60 MPH. The car spun, hit a tree & rolled over. I broke 3 ribs, shattered my left arm, broke my clavicle, left lung collapsed, & severed an artery in my left arm. I have no movement from my left elbow down. The only feeling from my elbow down is constant tingling & various levels of pain.

I am seeing Dr Sang-Gil Lee, Dr. Neal Chen & Dr David Ring at Massachusetts General Hospital (MGH). My post op notes from 1/2/06 state 1) Open left clavicle fracture; 2) open right hand (I believe this is a misprint and should say left hand) metacarpal fractures index through small and thumb base with extensive degloving injury; 3) Both bones forearm fracture associated with brachial artery disruption, musculocutaneous nerve avulsion from the brachial plexus, and severe stretch injuries to all major peripheral nerves.


Dr. Lee is my primary doctor at MGH. He will be performing BPI surgery on 7/12/07 on me. Nerves will be removed from 1 or 2 legs and placed in my left bicep and attached to my shoulder to repair the damaged, severed and stretched nerves. My left arm is paralyzed from the elbow down. My bicep and triceps muscles do not work now. I will be placed in a very restrictive sling for 6 weeks. They don't want my shoulder to move after this operation.

I have been told by my doctor(s) that it should be about 6 months before I get movement in the elbow. It should be between 1 to 1 1/2 years for the hand. Hand movement is very much up in the air. Dr. Neal Chen has stated that amputation of the hand may have to be done in the future if no movement returns.

I could not find Dr. Chen's info on the MGH web site but he will be assisting Dr. Lee. I believe he is a fellow to Dr. Lee & Dr. Ring.

Provider Name: David Ring, MD
Address: Orthopaedic Associates, 55 Fruit Street, YAW 2, Boston, MA 02114-2696
Accepting New Patients: Yes
Service: Orthopaedic Surgery
Clinical Interest: Hand Surgery, Elbow Surgery, Post-traumatic Reconstruction, Arm Fractures, Nonunions, Stiffness, Heterotopic Ossification


This is my Doctor
Provider Name: Sang-Gil Lee, MD
Address: , 101 Merrimac Street, M01-2, Boston, MA 02114
Accepting New Patients: Yes
Service: Orthopaedic Surgery
Clinical Interest: Hand Surgery, Wrist Problems

Provider Name: Hasan B. Alam, MD
Address: Trauma and Surgical Critical Care, 55 Fruit Street, WHT 1, Boston, MA 02114-2696
Accepting New Patients: Yes
Service: Surgery Service
Clinical Interest: No Data Available


I have not seen this doctor:

Provider Name: Jonathan Michael Winograd, MD
Address: , *Massachusetts General Hospital, 15 Parkman Street, WAC 460, Boston, MA 02114-3117
Accepting New Patients: Yes
Service: Surgery Service
Clinical Interest: Brachial Plexus Injuries, Peripheral Nerve Surgery, Hand Surgery, Breast Surgery, Cosmetic Surgery

Hope this helps you.

Janelle

[Jack1110]

Check your e-mail Tiffany