recent traumatic bpi - need help and advice
recent traumatic bpi - need help and advice
I am a 41 year old mother of 3 boys under age 5 and a triathlete. While training on my bike i was struck by a van. I received several injuries and fractures, including my skull. The most difficult however is my brachial plexus injury. I have an avulsion of the C6 nerve and damage to C5, and also 7. I am working with a surgeon in NYC, but would appreciate some advice on other dr.s. i have heard a lot about the mayo clinic and am trying to get a consultation. The emotional issues are huge for me as well. I would welcome any and all advice!
Re: recent traumatic bpi - need help and advice
Welcome to the club no one wants to join. You will find a lot of support and knowledge from the people on these boards that have been where you are.
I can't say enough about the Mayo and the team of BPI drs there. As far as adult TBPI I think they are the best. You are definately heading in the right direction.
Sue
I can't say enough about the Mayo and the team of BPI drs there. As far as adult TBPI I think they are the best. You are definately heading in the right direction.
Sue
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swhite1
- Posts: 295
- Joined: Mon Oct 16, 2006 4:15 pm
- Injury Description, Date, extent, surgical intervention etc: Bad fall in June of 2006
LTBPI - Location: right here in Texas
Re: recent traumatic bpi - need help and advice
As Sue says 'Welcome to the club nobody wants to join.'
But now that you are here, sorry to hear about your situation. You may find your strength as an athlete will help as will your mindset for training. You'll find out quickly that mind over matter, matters. With children you'll have to adapt fast. Right out of the blocks understand that your challenge should you decide to accept, no as soon as you decide to accept, is to learn to ask for help, putting things off until you can get help, prioritize everything. Stabilize the pain and set a course of action such as getting to the Mayo. Get a hold of the big picture then work on the little ones.
From experience you'll be amazed at how caring and helpful the little ones will be...wow! 3 boys under five. My my my you have a boatload. We are all here to help anyway we can so don't hesitate. My best to you and your family in these difficult times ahead. Hold your head up.
Scott
But now that you are here, sorry to hear about your situation. You may find your strength as an athlete will help as will your mindset for training. You'll find out quickly that mind over matter, matters. With children you'll have to adapt fast. Right out of the blocks understand that your challenge should you decide to accept, no as soon as you decide to accept, is to learn to ask for help, putting things off until you can get help, prioritize everything. Stabilize the pain and set a course of action such as getting to the Mayo. Get a hold of the big picture then work on the little ones.
From experience you'll be amazed at how caring and helpful the little ones will be...wow! 3 boys under five. My my my you have a boatload. We are all here to help anyway we can so don't hesitate. My best to you and your family in these difficult times ahead. Hold your head up.
Scott
Re: recent traumatic bpi - need help and advice
thank you for your replies! It's nice to get info and help from people who understand. It's hard for others to appreciate the pain. I haven't gotten it under control yet and miss many night's of sleep. Just started neoroton. Also taking amitriptimine at night. Trying to stay off the narcs! Will be checking in a lot! Good luck to you all as well!
Robin
Robin
Re: recent traumatic bpi - need help and advice
Hi Robin-
We are new here as well, my husband Brian was injured in a dirt bike accident on 8/11/07. So far, it is not looking like any nerves are torn, so we are thankful. But similiar to what you describe, pain is our biggest obstacle at the moment. Anyway, I'm much more in the learning phase of all of this than the sharing phase- but you will find many helpful people here, so I'm glad you found the site!
Amanda
We are new here as well, my husband Brian was injured in a dirt bike accident on 8/11/07. So far, it is not looking like any nerves are torn, so we are thankful. But similiar to what you describe, pain is our biggest obstacle at the moment. Anyway, I'm much more in the learning phase of all of this than the sharing phase- but you will find many helpful people here, so I'm glad you found the site!
Amanda
Re: recent traumatic bpi - need help and advice
this is peter. i am 16 and go to mayo clinic for nerve transplant surgy in 6 days on the 11th. Mayo will transplant my triceps nerve and transplant it to my deltoid nerve mainily the axaliry nerve. i suggest going to mayo, with the team of bpi doctors they are top of the line. hope for the best
Re: recent traumatic bpi - need help and advice
Hi Robin,
You might also want to contact Dr. Alan Belzburg at Johns Hopkins. His group & Mayo Clinic frequently refer patients to each other, as they offer the same surgical options & have high respect for each other. Belzburg doesn't tend to have the same wait times as Mayo to get in for a consult.
My son had a complete bpi (all five nerves avulsed) when he was training on his bike & was hit by a car in Atlanta. It helps tremendously that you are strong & healthy.
John saw a pain specialist, which I recommend if you haven't already found one - as it takes someone with experience to quickly figure out the right combination of meds & dosages for each person. The good news is that John is now essentially pain-free & off all meds. It took ~ 2 1/2 years after his accident for him to get to that point, but it's due to the movement he got back from his surgeries (Mayo Clinic) as well as pain management techniques like staying distracted & getting enough rest. (And, unfortunately, not everyone gets pain relief.)
Hang in there - you're not alone. Take care,
Ellen
You might also want to contact Dr. Alan Belzburg at Johns Hopkins. His group & Mayo Clinic frequently refer patients to each other, as they offer the same surgical options & have high respect for each other. Belzburg doesn't tend to have the same wait times as Mayo to get in for a consult.
My son had a complete bpi (all five nerves avulsed) when he was training on his bike & was hit by a car in Atlanta. It helps tremendously that you are strong & healthy.
John saw a pain specialist, which I recommend if you haven't already found one - as it takes someone with experience to quickly figure out the right combination of meds & dosages for each person. The good news is that John is now essentially pain-free & off all meds. It took ~ 2 1/2 years after his accident for him to get to that point, but it's due to the movement he got back from his surgeries (Mayo Clinic) as well as pain management techniques like staying distracted & getting enough rest. (And, unfortunately, not everyone gets pain relief.)
Hang in there - you're not alone. Take care,
Ellen
Re: recent traumatic bpi - need help and advice
Ellen,
I read about your son. Infact, he is the reason i contacted the mayo clinic. I wondered how he was doing and am thrilled to hear of his progress. I have not gotten my pain under control and have an appt. w/a pain specialist in 3 days!!!! I also have a consult w/ Mayo on Non. 7th. I will look into Johns Hopkins as well.
Is your son riding again?
thanks for writing!
Robin
I read about your son. Infact, he is the reason i contacted the mayo clinic. I wondered how he was doing and am thrilled to hear of his progress. I have not gotten my pain under control and have an appt. w/a pain specialist in 3 days!!!! I also have a consult w/ Mayo on Non. 7th. I will look into Johns Hopkins as well.
Is your son riding again?
thanks for writing!
Robin
Re: recent traumatic bpi - need help and advice
I'm glad John "sent" you to Mayo! I think you'll be very impressed with the team.
John is doing well and is now a sophomore in college. His accident was five years ago. He started back riding 2 months after his second major surgery at Mayo, roughly 6 months after the accident. He went to a disabled cyclist's camp at the Olympic Training Center in Colorado Springs to learn some techniques, and (of course) had moved gears & brakes over to the right side. Was your dominent or non-dominent arm affected in your accident?
John is staying active & this past summer he was certified in scuba diving. He works for a scuba & snow ski shop in Birmingham & is planning a ski trip with them to Italy this spring! So trust me, there is life after these accidents. One thing you should consider is getting a special supportive sling for when you are active. John has been happy with one designed by Fernando Jaimes, who lives in Mexico but is frequently in the US. It's made from neophrene (sp?), used in scuba skinsuits, thus is strong but also flexible. Fernando water skies, snowboards, scuba dives, mountain bikes, I think plays tennis - I've lost track - all with bpi. If you're intersted, I'll see if I can get you in touch with him because he found somebody in Mexico to make them.
Best of luck with your upcoming appt w/the pain specialist. John ended up on three meds at the worst, but was able to stay off the narcotics because they gave him nightmares. Hopefully you'll get some relief soon.
Keep us posted! Take care,
Ellen
John is doing well and is now a sophomore in college. His accident was five years ago. He started back riding 2 months after his second major surgery at Mayo, roughly 6 months after the accident. He went to a disabled cyclist's camp at the Olympic Training Center in Colorado Springs to learn some techniques, and (of course) had moved gears & brakes over to the right side. Was your dominent or non-dominent arm affected in your accident?
John is staying active & this past summer he was certified in scuba diving. He works for a scuba & snow ski shop in Birmingham & is planning a ski trip with them to Italy this spring! So trust me, there is life after these accidents. One thing you should consider is getting a special supportive sling for when you are active. John has been happy with one designed by Fernando Jaimes, who lives in Mexico but is frequently in the US. It's made from neophrene (sp?), used in scuba skinsuits, thus is strong but also flexible. Fernando water skies, snowboards, scuba dives, mountain bikes, I think plays tennis - I've lost track - all with bpi. If you're intersted, I'll see if I can get you in touch with him because he found somebody in Mexico to make them.
Best of luck with your upcoming appt w/the pain specialist. John ended up on three meds at the worst, but was able to stay off the narcotics because they gave him nightmares. Hopefully you'll get some relief soon.
Keep us posted! Take care,
Ellen
Re: recent traumatic bpi - need help and advice
OK, I found Fernando's site with the photos:
http://www.frappr.com/?a=myfrappr&id=125232
and here's his email:
fjaimes@bajamexinternacional.com
The site w/the photos was set up by Christopher Janney, who also has bpi. The site is neat because a lot of people have posted, worldwide - you can see more of it on the following:
http://www.frappr.com/ubpntbpi
Ellen
http://www.frappr.com/?a=myfrappr&id=125232
and here's his email:
fjaimes@bajamexinternacional.com
The site w/the photos was set up by Christopher Janney, who also has bpi. The site is neat because a lot of people have posted, worldwide - you can see more of it on the following:
http://www.frappr.com/ubpntbpi
Ellen