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Anyone succesful with the same bpi HELP
Posted: Sun Sep 22, 2002 3:00 pm
by cbrown
Hi everyone,
Christy here, wife of Anthony,35 Lbpi (8-5-02 motorcycle accident)Emg results 9-13-02 showed most likely avulsions of c5,c6,c7,c8 and possible t1 because of presense of horners syndrome. I have done some internet research and know this is the worst of nerve injurys. I have read here on the message boards about about nerve graphing, transfers, muscle transfers etc. Has anyone had any success with these sugeries with the same amount of damage?? Please help! Any and all stories or suggestions would be greatly appreciated. Thank you, Looking for answerings in Va.Beach, Va USA
Re: Anyone succesful with the same bpi HELP
Posted: Sun Sep 22, 2002 7:14 pm
by lizzyb
Hi Cristy
It's difficult to give you a short(ish) answer here because so many different things are involved. The very first thing to do is to see a surgeon or doctor who is experienced in diagnosing and treating BPI. It's really important to find someone experienced as these injuries are notoriously difficult to diagnose and treat. It is also very important to confirm that all these nerves are in fact avulsed; there are as you probably know several diagnostic tests available and all the results of these combined will give the best indication of damage. EMG's alone have proven in the past not to be 100% accurate in some cases.
Here in the U.K. the surgeons usually rely on exploratory surgery before they can confirm how much damage has been done to the nerves, and then work out a plan of managing the injury, and what kind of surgery would be appropriate in the future.
There have been great advances in BPI surgery in the past few years, and many people who post here can give you their own personal experiences of this. I had successful intercostal nerve grafts years ago to the biceps which means I can now bend my elbow.
I know it is a very worrying time for both of you, and it can be hard to find answers. We have a support group here in the U.K. for adults with a TBPI and between us, we have years of experience coping and living with this injury, and many of us have had grafts, muscle and tendon transfers etc. We all know what you are going through 'cos we have been there ourselves. Please feel free to email me at
liz@tbpi-group.uk and I will help all I can....
Take care both of you....
Liz B :0)
Re: Anyone succesful with the same bpi HELP
Posted: Sun Sep 22, 2002 11:15 pm
by cbrown
Thanks Liz,
Your words are comforting.
I agree exploratory sugery should be completed before the severity of a injury is confirmed. U.S. Drs. could learn a few things from U.K. Drs.
What exactly is a intercostal nerve graph?
Re: Anyone succesful with the same bpi HELP
Posted: Mon Sep 23, 2002 12:18 am
by Nancy (Eric's Mom)
Hi,
I'm Eric's Mom. Eric was just turned 20 when he suffered his injury as the result of a car accident. Rare I guess for this to happen as the result of a MVA but for us it resulted in we think a complete avulsion of all nerves. The only nerve that wasn't a definite was the C5. We had intercostal nerve graft with Dr. Tiel in New Orleans at about 4 and a half months post-injury. We are happy with the results and I know Dr. Tiel is too. The surgery was to repair and clean up C5 and connect it and C6 to nerves that weren't damaged. It's definitely been the most trying thing we've ever been through as a family. Thanks to UBPN which I was lucky enough to discover very early on for teaching me/us a LOT more than we learned anywhere else. Good luck and know that we are all here for you.
Re: Anyone succesful with the same bpi HELP
Posted: Mon Sep 23, 2002 11:09 am
by david wilson
hey christy
i am also a c5c6c7t1 mc accident on 06 23 02. have an appointment with dr lee dellon at union memorial 12 3 also in the process of getting an appointment with dr belzburg at johns hopkins also in balt. md. i remember from the past posts that there was someone in norfolk working with bpi so you may want to read the arcives. i am curios to know if anthony has a lot of nerve pain. hang in there as it looks like it will be a long journey for both of us. keep in touch dave wilson
Re: Anyone succesful with the same bpi HELP
Posted: Mon Sep 23, 2002 2:37 pm
by lizzyb
Hi Cristy...a very quick answer to your question; an intercostal nerve graft is where the surgeon lifts one or more nerves that serve the intercostal muscles(between the ribs)and re-directs them to eventually re-innervate the biceps, and eventually give back some elbow flexion. Sounds simple, but in reality it probably isn't like all things regarding a bpi..
I had an intercostal nerve graft quite soon after my injury; it's a very common operation here in the U.K. and probably the U.S. In my case it worked, and from what I gather, it is a fairly successful operation. It did take a while before I saw any real result (months) because of the length of time the nerves take to grow down to the muscle; about half inch a month approx.
Hope that helps a little! :0)
Take care...
Liz B
Re: Anyone succesful with the same bpi HELP
Posted: Thu Sep 26, 2002 12:44 pm
by cbrown
DAVID,
Anthony has almost unbearable nerve pain. He's on 1800mg of nuerontin daily which they may need to increase because it doesn't seem to be working. He also on amitriptylin. Please keep in informed of your surgeries and any results. Thanks Best of Wishes
Liz,
Thank you for responsing. I know can better visualize what a intercostal procedure is. Knowledge is key as I say.
Nancy,
Thanks for Eric's story. Your one of the many that praise Dr. Tiel. We'll have to contact him. I so happy for you and Eric that he regained some movement back. Did he gain any sensation?
Re: Anyone succesful with the same bpi HELP
Posted: Wed Oct 09, 2002 11:17 am
by admin
Hi,
Did you do alot of research on Dr. Teil and Dr. Kline? I am trying to go to Dr. Kline, still waiting for insurance to agree to pay. My son is 18yrs old, he has C5 avulsed. How was the Hopital you went to and where did you stay when you were there? Did they let you stay nights with your son??? Hope to here from you soon.
Re: Anyone succesful with the same bpi HELP
Posted: Wed Oct 09, 2002 11:56 am
by PamelaW
Dear Guest,
My son was hurt 9½ years ago and has been operated on by Dr. Kline twice. If you go on the internet and type in Louisiana State University and go from there to staff and type in Dr. Kline you will see creditials beyond belief. Not only is he a wonderful Dr. but he is a wonderful human being. Jeff was referred to him by the neurosurgeon at the hospital he was helicoptered to after the hospital.
His offices are right outside of the French Quarter so there is plenty to do while you are there and lots of places to stay. When you first go you have visits and tests so will have time to do other things while you are there. His actual office is really near the Saints Stadium and the Holidome offers a Dr. discount, but you have to get the Drs. number to give them. When he had the actual surgeries they are done at Oshner Hospital which is about 5 miles away from his offices. The hospital is a big transplant hospital so it has a hotel attached to it for relatives to stay. As your son is 18 and mine was 22 when he was operated on the first time we stayed in the hotel which was just a short walk down a long hallway if there was any emergency and we needed to get there quickly, which we didn't. There is however some sort of plastic pullout bed in the rooms if you choose to stay right in his room.
Re: Anyone succesful with the same bpi HELP
Posted: Thu Oct 10, 2002 8:35 am
by Dianna williams
my son was hurt in football in 1997, C5&C6 were avulsed Dr Kline and Dr Tiel,were able to do nerve grafts and hook up C5 to C4 and hook C6 to C7 with two nerve grafts that were 2 1/2 inches long, a total of 4 nerve graft, took 7 1/2 hours, and we have had wonderfull recovery, full recovery,
Errett was released from the Doctors care but asked to drop by if ever in new orleans, and to kkep them posted on his milestone of life,(gradation from collage,marrage,ext....)
Errett was 17 when he was hurt and had surgery, he will be 22 on the 21st.