Hi all,
TBPI to my (then) 20 year old son as a result of car accident. Surgery with Dr. Tiel about 3 and a half months post injury, complete avulsions to all 5 nerves, surgical repair (intercostal nerve transfer) to repair C5 and C6.
We were in New Orleans 1 week ago for follow-up. Injury July 2000. Surgery October 2000. Doctor says surgery complete success. I need to tell you now that surgery was only to repair C5 & C6. Yes, we had great doctor's report but by no means is it a complete recovery. My son's arm is still what you would call flail and muscles in lower arm are gone. But, deltoid and bicep are "hooked-up" and "firing". That's more than we would have achieved without surgery. Next step increasing strength to those muscles.
Good news is that we were able to be pro-active (many, many thanks to this site for educating us) and lucky enough to get our insurance company to pay for out-of-network doctor's care. Get a good letter of referral from primary care doctor about the seriousness of this injury. We also had the Office of the State's Attorney General at the ready if needed (thanks to Tina - Nicole's Mom for the guidance here). Time is of the essence, as is fighting for expert care. Don't give up! This injury requires specialized care.
We're a little over 2 years post injury (Eric's now 22) and it hasn't been easy. Things have finally gotten better for us. All around. For him and us (his parents and extended family members).
Eric's pain - severe. Our emotional pain - almost as severe.
We've tried everything. Best solution: distraction. Eric currently works full time, attends college part time, and leads a full social life. Since he got back to a "normal" life the pain is less overpowering.
I encourage anyone with any questions to respond and I will share our experience.
Sincerely,
Nancy (Eric's Mom)
2 Years Post-Surgery
-
david wilson
- Posts: 92
- Joined: Tue Sep 10, 2002 11:53 am
Re: 2 Years Post-Surgery
thanks nancy
i am in for surgery on tuesday and it's nice to have a heads up on the reality of the situation. i have a couple of questions
was eric in lots of pain before the surgery?
why didn't they hook up the rest of his avulsed nerves?
did they tell you pre surgery that they were only going to conect c5 c6?
how long post op did he get the first firing on his new nerves?
hope he contines to regain motion. there are some surgical options for the pain [drez] but you are still inside the 2-3 yr window of spontainious subsidence of pain that i have read in the posts. thanks for any imput to a newby [4mo] dave wilson
rbti mc accident
6/23/02
i am in for surgery on tuesday and it's nice to have a heads up on the reality of the situation. i have a couple of questions
was eric in lots of pain before the surgery?
why didn't they hook up the rest of his avulsed nerves?
did they tell you pre surgery that they were only going to conect c5 c6?
how long post op did he get the first firing on his new nerves?
hope he contines to regain motion. there are some surgical options for the pain [drez] but you are still inside the 2-3 yr window of spontainious subsidence of pain that i have read in the posts. thanks for any imput to a newby [4mo] dave wilson
rbti mc accident
6/23/02
-
Brian - ATL
- Posts: 4
- Joined: Thu Oct 31, 2002 2:45 pm
Re: 2 Years Post-Surgery
Please excuse my ignorance on this, but it sounds like C8 and possibly T1 were also involved, which is where my injury is. If this is correct, it sounds like your statement that "muscles in the lower arm are gone" is likely my destination, with or without surgery.
Was C8/T1 involved, and did the Docs tell you from the beginning that there was nothing they could do to get back use of the hand?
After reviewing many, but not all, of the posts on the "surgery has any one ..." thread, I did not see where anyone with C8/T1 avulsed has had recovery in their hand. This makes sense based on what I have been told by the Docs (i.e; the 1 inch/month nerve growth rate + approx 21 month time period before the muscles no longer accept input from the nerves + my 28 inch long arm = It ain't happening).
Obviously, I am still searching for possible medical intervention, but I think I am drawing near the end of that trail, but still hoping.
Was C8/T1 involved, and did the Docs tell you from the beginning that there was nothing they could do to get back use of the hand?
After reviewing many, but not all, of the posts on the "surgery has any one ..." thread, I did not see where anyone with C8/T1 avulsed has had recovery in their hand. This makes sense based on what I have been told by the Docs (i.e; the 1 inch/month nerve growth rate + approx 21 month time period before the muscles no longer accept input from the nerves + my 28 inch long arm = It ain't happening).
Obviously, I am still searching for possible medical intervention, but I think I am drawing near the end of that trail, but still hoping.
-
jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: 2 Years Post-Surgery
Hi Nancy, glad to hear Eric's still recovering and more importantly, living life.
Brian, I don't think I know anyone who had avulsions in the lower plexus who got their lower arm/hand back (adult tbpi that is) I certainly didn't. My biceps came back by itself after I'd elected not to have surgery, which surprised me and the doctors so sometimes things happen by themselves.....but frankly the movement isn't much use to me really. The tbpi uk site has a message board where many of the posters had this kind of surgery (to hook up biceps and in some cases more) so maybe someone there would be able to answer any questions. I've probably already sent you the url but just in case here it is http://pub28.ezboard.com/badultswithbra ... usinjuries .
Brian, I don't think I know anyone who had avulsions in the lower plexus who got their lower arm/hand back (adult tbpi that is) I certainly didn't. My biceps came back by itself after I'd elected not to have surgery, which surprised me and the doctors so sometimes things happen by themselves.....but frankly the movement isn't much use to me really. The tbpi uk site has a message board where many of the posters had this kind of surgery (to hook up biceps and in some cases more) so maybe someone there would be able to answer any questions. I've probably already sent you the url but just in case here it is http://pub28.ezboard.com/badultswithbra ... usinjuries .
-
Nancy (Eric's Mom)
- Posts: 90
- Joined: Mon Nov 05, 2001 10:06 am
Re: 2 Years Post-Surgery
Hi David,
Best of luck to you in surgery.
Eric has pretty severe pain - mostly in his hand - phantom pain we think because he's got no use of his hand.
The reason they didn't hook up anything other than C5 and C6 is because the concentration at least at first was to give him useful recovery which meant at least the main muscles in the arm - bicep and deltoid which allows him to move the arm and elbow flexion. If he wasn't able to recover that there's no use in doing anything else.
Going into surgery we didn't know exactly what would be done because it depends on what they find during the surgery. But, the surgeon is a strong advocate of doing what will benefit the patient most.
Eric started feeling twinges of movement about 6 or 7 months after surgery. At first you could barely even tell. He's come quite a way since then. The doctor just confirmed that the deltoid is innervated (it took a little longer than the bicep).
Now, it's a matter of building up the muscle strength.
We tried many different things for pain relief including a stellate ganglion block. Eric chose not to pursue it again as it's somewhat of a scary procedure. DREZ lesion is out of the question. There's risk involved and not a guaranteed solution. The good news is that the pain is much better than it used to be.
thanks for writing!
Best of luck to you in surgery.
Eric has pretty severe pain - mostly in his hand - phantom pain we think because he's got no use of his hand.
The reason they didn't hook up anything other than C5 and C6 is because the concentration at least at first was to give him useful recovery which meant at least the main muscles in the arm - bicep and deltoid which allows him to move the arm and elbow flexion. If he wasn't able to recover that there's no use in doing anything else.
Going into surgery we didn't know exactly what would be done because it depends on what they find during the surgery. But, the surgeon is a strong advocate of doing what will benefit the patient most.
Eric started feeling twinges of movement about 6 or 7 months after surgery. At first you could barely even tell. He's come quite a way since then. The doctor just confirmed that the deltoid is innervated (it took a little longer than the bicep).
Now, it's a matter of building up the muscle strength.
We tried many different things for pain relief including a stellate ganglion block. Eric chose not to pursue it again as it's somewhat of a scary procedure. DREZ lesion is out of the question. There's risk involved and not a guaranteed solution. The good news is that the pain is much better than it used to be.
thanks for writing!
-
Nancy (Eric's Mom)
- Posts: 90
- Joined: Mon Nov 05, 2001 10:06 am
Re: 2 Years Post-Surgery
Hi Brian,
Yes, you're right. Definite avulsions to C6, 7, 8 and T1. C5 was questionable....doctor cleaned it up a little bit and thinks there might have been a little something there.
Because it was most important to get "useful" recovery, for us that meant at least the upper arm.
For you though it might be different. Is there such a technique where you can hook up C8 and T1 to C7? I really have no idea but I would talk to as many surgeons as you can.
For us, Eric is very happy with what he's gotten for recovery. His surgery was pretty invasive already. I really don't think that he will pursue another surgery (especially if it means taking muscle, tendon, nerve, vein from the leg for instance, with much additional scarring, for something that wouldn't give him much return).
Have you spoken to any BPI specialists about this?
Yes, you're right. Definite avulsions to C6, 7, 8 and T1. C5 was questionable....doctor cleaned it up a little bit and thinks there might have been a little something there.
Because it was most important to get "useful" recovery, for us that meant at least the upper arm.
For you though it might be different. Is there such a technique where you can hook up C8 and T1 to C7? I really have no idea but I would talk to as many surgeons as you can.
For us, Eric is very happy with what he's gotten for recovery. His surgery was pretty invasive already. I really don't think that he will pursue another surgery (especially if it means taking muscle, tendon, nerve, vein from the leg for instance, with much additional scarring, for something that wouldn't give him much return).
Have you spoken to any BPI specialists about this?
-
david wilson
- Posts: 92
- Joined: Tue Sep 10, 2002 11:53 am
Re: 2 Years Post-Surgery
thanks nancy
really appreciate your reply. no teacher like being there. i am hoping for good news when they explore my neck [just a stretch mr wilson], well that may be asking for a little bit more than a pony for xmas but stranger things than that have happened. two years and more is hard to look at from here but tbpi is not for the weak of heart. must be way hard for a 22 yr old to deal with. at least i'm not worried about the scars as my mother is the only one that still thinks i am pretty [she is 85 and has cataracts]
really appreciate your reply. no teacher like being there. i am hoping for good news when they explore my neck [just a stretch mr wilson], well that may be asking for a little bit more than a pony for xmas but stranger things than that have happened. two years and more is hard to look at from here but tbpi is not for the weak of heart. must be way hard for a 22 yr old to deal with. at least i'm not worried about the scars as my mother is the only one that still thinks i am pretty [she is 85 and has cataracts]
Re: 2 Years Post-Surgery
David, I am Pam, Jeff's mom who is 9 years post surgery and one year post his second surgery. By no means am I saying you are lucky to have a brachial plexus injury, but you are lucky you got it now and not 9 years ago like Jeff. They have come a long way since then. His Dr. is Dr. Kline in New Orleans and to be quite frank Jeff was one of the original guiney pigs. Each time they did surgeries they learned so much more. At Jeff's last visit last Feb. he told Jeff had the accident just happened he could have done so much more than he did for him 9 years ago. Jeff had 4 avulsions and one badly stretched nerve. Just like Nancy's son he was almost a baby when it happened. He was only 22. He is 31 now. I wish you great success. I am not surprised your 85 year old mother thinks you are still pretty.
Re: 2 Years Post-Surgery
Tmga,
You asked some really good questions. I really think we need a parents board or forum for the parents of TBPI. I feel when I read or post on the general board they really don't want me there because their children were birth injured and on this board I feel like an outsider because most of the people are the ones with the injury. I guess it is a little easier for me now because Jeff no longer lives with us. He did remain at home until 5 years after his injury. Personally I would have liked him to stay here forever and me smother over him, but I knew that wasn't good for him.
Jeff can do things that most 2 armed people cannot do because he is so bull headed he is going to do it if it kills him. He has 20 acres and a house out in the country. It is difficult for him to take care of so much but he does it and many times at the detriment of the good arm. I have tried to tell him he needs to protect his good arm, but he won't listen. I really think he needed a lot of phychiatric help after the injury and so did we all, but he said he didn't need that. 2 years ago he finally went to a phychiatrist to deal with some of his issues, which all stemmed from the injury. 7 years post injury there were a lot of issues. He went back to college after the accident and got a new career and for all outward appearances leads a normal life. I have to say he's not really the same person he was before the accident. He's not nearly as good natured as he was.
I guess my hardest thing when I see him is when I can definitely tell he is in pain. Most times when I see him he doesn't appear to be in pain then other times it is very evident he is. Jeff hunts and this year he went bear hunting with his dad, brother and friend. I got a call from him on Oct. 8th and when I heard his voice I knew he had gotten a bear. It was probably the most excited I have heard him in a long time so definitely if your son is into soccer and he likes it, it is definitely good for his mental health. He used to love to fish, but fishing is just too difficult with one arm and he'd come home just depressed after trying to fish so it is good for him not to do it any more.
The last time he was operated on was in June of 2001. We went with him even though he was 30 at the time he was not going through such a major surgery alone. I flat out asked Dr. Kline about all the advances they are doing with spinal injuries and he told me this is as good as it is going to get. I think I needed him to say that because I always had in the back of my mind someday they are going to find a way to fix it. I think it is now finally easier to know this is it. He is getting some sensations in the elbow from the last surgery, but not enough to really notice yet. Next time I think about it when I see him I'll have him show me what he can do. It hurts like crazy though when he does the elbow exercises so last time I asked him to show me he wouldn't.
You asked some really good questions. I really think we need a parents board or forum for the parents of TBPI. I feel when I read or post on the general board they really don't want me there because their children were birth injured and on this board I feel like an outsider because most of the people are the ones with the injury. I guess it is a little easier for me now because Jeff no longer lives with us. He did remain at home until 5 years after his injury. Personally I would have liked him to stay here forever and me smother over him, but I knew that wasn't good for him.
Jeff can do things that most 2 armed people cannot do because he is so bull headed he is going to do it if it kills him. He has 20 acres and a house out in the country. It is difficult for him to take care of so much but he does it and many times at the detriment of the good arm. I have tried to tell him he needs to protect his good arm, but he won't listen. I really think he needed a lot of phychiatric help after the injury and so did we all, but he said he didn't need that. 2 years ago he finally went to a phychiatrist to deal with some of his issues, which all stemmed from the injury. 7 years post injury there were a lot of issues. He went back to college after the accident and got a new career and for all outward appearances leads a normal life. I have to say he's not really the same person he was before the accident. He's not nearly as good natured as he was.
I guess my hardest thing when I see him is when I can definitely tell he is in pain. Most times when I see him he doesn't appear to be in pain then other times it is very evident he is. Jeff hunts and this year he went bear hunting with his dad, brother and friend. I got a call from him on Oct. 8th and when I heard his voice I knew he had gotten a bear. It was probably the most excited I have heard him in a long time so definitely if your son is into soccer and he likes it, it is definitely good for his mental health. He used to love to fish, but fishing is just too difficult with one arm and he'd come home just depressed after trying to fish so it is good for him not to do it any more.
The last time he was operated on was in June of 2001. We went with him even though he was 30 at the time he was not going through such a major surgery alone. I flat out asked Dr. Kline about all the advances they are doing with spinal injuries and he told me this is as good as it is going to get. I think I needed him to say that because I always had in the back of my mind someday they are going to find a way to fix it. I think it is now finally easier to know this is it. He is getting some sensations in the elbow from the last surgery, but not enough to really notice yet. Next time I think about it when I see him I'll have him show me what he can do. It hurts like crazy though when he does the elbow exercises so last time I asked him to show me he wouldn't.