United Brachial Plexus Network, Inc.

Hey guys
I'm Sarah, I'm kind of new to the BPI, just surpassed my two year mark.
Had avulsions in the C7 C8 and T1
22 years old and doing my best to cope
Where I live nobody really has had the same experiences as I have, I live in the middle east and the Drs here arent really experienced in the "nerve" area so I had to do my surgery in London.
I would love it if anyone would like to e-mail privately about their experiences/pain/physiotherapy treatments etc
Just would love to hear from somebody who has been through the same thing:)

Glad you found this Forum,Sarah! Give a few days and your TBPI's will respond.
Carolyn J
LOBPI/75+++

Hi,
I am also new to the TBPI. I have avulsions of C6-8 for not yet a year. It seems hard to not know anyone with this type of injury... It is very isolating. Although I was seem in the brachial plexus clinic at the Mayo clinic I still feel that they don't understand my injury. I am still figuring out my life now and struggle with pain. I was able to fight to finish nursing school after my injury and am still getting some function that is surprising. I try to stay positive but have a hard time when no one around me understands.

Hi Sarah,

This is Tony (ASC) ROBPI/Adult. Welcome to the UBPN Family.

Hi Sarah,

I'm 27 y/o, in New York City. Recent injury. It has not been pleasant, but in a weird way, there are some positive things about the whole experience. And life goes on. It hasn't even been 5 months for me yet, but I'm back to being as busy as I ever was before.

I sent you a private message with my email address.

Cheers!

Alex

shan.pratt wrote:I am also new to the TBPI. I have avulsions of C6-8 for not yet a year. It seems hard to not know anyone with this type of injury... It is very isolating. Although I was seem in the brachial plexus clinic at the Mayo clinic I still feel that they don't understand my injury. I am still figuring out my life now and struggle with pain. I was able to fight to finish nursing school after my injury and am still getting some function that is surprising. I try to stay positive but have a hard time when no one around me understands.

Hi, thanks for posting. I was wondering if you cared to provide more detail about your trip to Mayo. Did you have any surgeries? How was their feedback? And I'm very curious about what function is still coming back.

(I'm going back to Mayo in 9 days. I posted about my first visit, but I need to update my thread: http://ubpn.org/forums/forums/18/36423)

I hope your pain is getting to be a bit better. It's almost your 1-year anniversary. Hmm, what does one say to that? Congratulations? Yes, congratulations on powering through your first year! Stay strong.

Alex

Hi Sarah, PM sent, if you don't receive it, you can e-mail me at dan@aldrichwealth.com.

Hi Shan, I have heard that before, or better yet, I understand the comment. I mentioned this to Sarah in my PM to her, that I have conversations with and email all the time with bpi people. I am the person who makes the athletic arm sling and because of that, I am in conversation with people all the time. We have now made over 400 of them and have them in over 40 countries, so my dealings with "us" is fairly extensive. I probably have spoken to more people with this injury that just about anyone, outside of a Dr's office. I also have developed many friendships and spend time with many bpi'ers on a regular basis.

Not only do I have that experience, I also have had the injury for over 27 years, I avulsed all five of my nerves, so I have my own understanding of the injury. To your point about Mayo not really understanding your injury, you hit on it with the point of struggling with the pain and your life now. The medical professionals are very focused on the physical side of this injury, but not so much on the mental side of it and I contend that the recovery process is 5% physical and 95% mental. Keep focusing on the things you can do and look for the things that bring you Joy and then go after them with focus and determination.

I am always available to talk(I live in the Los Angeles area) and email if you want. One of the benefits to owning my own company,I have time to give back to our community. If there is anything I can do, please let me know.

Hi Alex, So I guess I will get crazy congrats on my 28 yr anniversary just a few months away:)

My best to you,
Dan

I was injured by an automobile in 1968. I have not had much return from the injury. However, I have spent the last forty years living with this unique injury. The most overlooked part of rehabilitation from this injury is psychological. I recommend that you seek counseling. I was able to adjust to the physical limits in a short period of time but coping with the "phantom pain" is something that must be done from minute to minute. I 've never had any surgery for the traumatic injury.

I dated, got married and have children. I became a world class cross country skier and Paralympian . I have a degree in Business. So it is possible to live a "normal life". I do answer PM if you have any questions.

Bill

Hey Dan, it's been two years since my accident.
And Shan you know what? Sometimes it sucks. Sometimes you think nobody understands you but you just have to get through it. Be positive because I always think stuff could be worse. You wanna chat I'm here for ya!

"The most overlooked part of rehabilitation from this injury is psychological. " this is true of OBPI'S too ...BIGTIME! I've had lots of Counseling and I highly recommend it.
Carolyn J
LOBPI/75+++