United Brachial Plexus Network, Inc.

Jim, Chris and All,
I am usually the first to chase down a second opinion however, all the professionals I have talked with tell me that I am very fortunate to have the trauma team that operated on me the day of my accident and are the team that is following me through this entire ordeal. They are considered the one of best available. That review has come from not only Boston professionals but NH ones as well.

The skin graft that was performed on me by Dr. Lee looks amazing. My degloving was so severe that 4 tendons were clearly visible. There have been no complications from the graft. When Dr. Lee did the graft he looked up to the brachial plexus to see the condition of the injuries. He was very pleased with what he saw. I do not have the operative results of the skin graft but I will request them from MGH for my records.

With my surgery date being so close I don't believe that I have the time to get an appointment with another Dr. and have any tests that would want to be ordered for an accurate diagnosis.

The O/R schedule took Dr. Lee over a month to have the main O/R reserved for this surgery. I know that the time frame for this surgery to done has a huge impact on the outcome. I don't want to cause a delay unnecessarily.

The meeting I had with Dr. Lee prior to the scheduling of this surgery entailed that it would be about 6 months for movement to the elbow and a year to a year and a half for the hand.

I placed a call to Dr. Lee with questions I had about the levels of expectations of the upcoming surgery. The answers I got back from him through his assistant were the results of the surgery were really unclear because of the level of damage. These answers were not acceptable to me. I made it clear that if my future was going to be having a dead arm in a sling lying across my chest for the rest of my life that this was not an acceptable outcome. The arm might as well be amputated.

Dr. Chen was immediately located and placed on the phone. To make an already long message shorter, Dr. Chen assured me that amputation at this time would be a serious error. This surgery should give me elbow movement, which will allow the removal of the sling. But that will be over months. He stated that the hand movement may require additional surgery at a latter date and may involve muscle transfer as well. If amputation did become necessary it would be the hand, if I opted for amputation now it would require right up to the shoulder. He clearly stated that if he were facing my situation he would without a doubt have this surgery and give himself the best opportunity for the best possible outcome. I told him I am not canceling/postponing this surgery and would see him on the 12th of July.

I will keep you all posted on the outcome. I do greatly appreciate all the advice and assistance you have all given me.
Janelle

Patience & Perseverance. I've heard this many times regarding my TBPI. It's over a year since the accident & just over 6month since my nerve graft/transfer surgery.
I have tricep nervation return & trace bicep return, it's not life changing but it's hope. Just be prepared for a long slow road and the very best of luck to you on the 12th!

To be one hundred percent honest, I have no problem having to be patient about this injury. But I have one goal that I have to achieve. My left arm cannot be plastered to the front of my chest by a sling for the rest of my life. If this surgery, over time, does not change my current outcome I will be very seriously talk about amputation. My doctors have been told about my view on this and assure me that this surgery should provide the goal I want.

I am not fooling myself into thinking that my arm will be back to normal. I will be grateful for whatever improvement that is achieved. I do know that there is the possibility that I may end up loosing my hand over the next two or so years if no movement to it returns. Movement of the elbow is key to everything. I have faith and confidence in my surgical team. I also know there are no guarantees. I just know the one thing I have to have and that is my life without a constant sling.

Janelle

Tomorrow is my big day at MGH, Boston, MA. My nerve graft surgery is scheduled for 10:00 AM. My hopes and prayers are for this to be a huge success and I will get movement and feeling back in my left arm and hand again. It will be about 6 months before it is known if the elbow comes back but I have confidence in my team.

Keep me in your thoughts and prayers tomorrow.

I will keep you all posted on my progress.

Janelle

Best of luck!!! You are in our prayers.
Sue

best of luck to you. after the surgery was hardest for me. i think it was the waiting for something to return and the feeling of what if it didn't take. my best advice is to do exactly what they tell you to do and not to do. i also remember i could not wait to get that neck brace off, tough sleeping. i will keep you in my prayers and wish you a speedy recovery.
jim rtbpi

Thank You All for your Best Wishes & Prayers. I am not a religious person but, in spite of the horrific accident I had, God has been at my side every step of the way.

Dr. Sang-Gil Lee did not perform the surgery the way we had discussed. My legs are fully intact and not operated on. It was a nine-hour operation on 7/12/07. Would you believe I was discharged on the 13th in the afternoon? He had reserved the OR from 10 – 3. So much for schedules. At 3 he called Mike from the OR to tell him the nerves to the humuros were stretched but not damaged. He said I had 2 severed nerves in the hand. They were about to start the graft at that point.

What they found was the ulnar nerve had 0% of being repaired. The median nerve was repairable. They used the ulnar nerve as the graft for the median. This meant my legs would not need to be used.

The nerves in my bicep showed signs of firing. They believe that flex strength will return to my elbow. It will take 6 months to a year but they have confidence it will come back. They cannot/will not state what they think the hand will do. The elbow flex strength will be the determining factor. Enough of a return and I will at the least be able to use the hand for placement. More surgery may enable finger use but it is too soon to tell. Not enough flex strength return could mean amputation from the forearm and a prosthetic used. These conversations are a long way off.

My occupational therapy is key to how my recovery continues. I am not to return to that till after I see Dr. Lee on 7/25/07. Right now my left shoulder is not to be moved at all.

I feel pretty well. Have to admit that I am grateful for painkillers. I have decreased the mgs already but I do need them between every 4 – 5 hours. I need help from Mike to help me wash up and change my shirt. He doesn’t have to worry about the dressings anymore. There is no more drainage. I have a whole new bunch of staples and stitches. There are 4 major incisions on my shoulder, near my neck, and down my arm. I have no neck brace. YEAH!!!

Mike is leaving work early today so I can see my occupational therapist. I picked up 9 lbs in fluid as of yesterday due to swelling. Today I am 2 lbs heavier. I can see my fingers and palm increasing in swelling. The pain from this is increasing. I called my therapist to see what I could do where I can’t move my shoulder. They told me to come in and they can apply a gel. I truly hope this helps. I hate to have my arm swell up to the size of an upper thigh again.

I’ll keep you posted.

Janelle

Good luck with the OT Janelle! I hope that they can get your swelling down although it may take a while. I think I know what gel they are talking about and I use it on my scars and its been doing wonders for me so I hope you have similar results!

Hope your recovery goes quickly!!!
Hugs,
Amy 20 years old ROBPI from MN

I hope the gel will work! Keep us posted.