United Brachial Plexus Network, Inc.

I don't know where else to go or what to do. As some of you know Caralyn avulsed all five nerves in her brachial plexus, plus a few others on 1/14/2005. She had her initial surgery at the Mayo clinic on 3/07/2005 and they said then, that they weren't sure if she would get anything because they had to tie into her C7 on the opposite side and used all available donor nerves to hook to her shoulder. To make a long story short we went to Portland Shriners Research Hospital on 03/10/2006 and they took 30 minutes to look at her and said there was nothing more to be done and she needs to just learn to adapt and if we really wanted to continue trying we should go back to the Mayo. Well I made arrangements to go back to the Mayo and they just called me back this morning and said there was nothing more they could do (no muscle transfer or anything)and do I still really need to come back because all they are going to do is an EMG and to have the physical therapist see her. I have never been so disappointed in my life. They haven't seen her in over a year, how can they destroy her hopes without even seeing her. They wouldn't even give me the courtesy of calling me and explaining why they couldn't do anything. They had their appointment person call (who knows absolutely nothing by the way)I was at least hoping they could fix her shoulder. What are my options now? We are already in debt up to our ears and flying back and forth from Alaska is killing us. But we will do anything for her, we even considered moving down to the states so we could be closer to a doctor who knows about this injury. Who can we turn to? How do I explain to her that this is it? She keeps saying she doesn't want to give up hope but am I just making things worse by encouraging her to keep hoping for some kind of movement? ( she said she would love to just have a little bit of bicep) I don't know what to do.
Rene

Rene... this is a really tough question! I guess you have to go with your gut and do what it tells you to do. I would be very frusterated that the doctors at Mayo are not talking with you... I would maybe call there and ask that one of them call you and explain it all to you! They could do this over the phone and wouldnt cost you anything!! I wish I had more advise but I really dont! im sorry! keep your head up and keep us posted!!!

Courtney

The Mayo Clinic called me back, I am so relieved, I had just about given up all good feelings for them, becaue twice now in the last two weeks they have had the appointment person call me and tell me one thing or another after this morning I said I wanted someone to call me back. Well, Dr.Bishop called me and explained everything. It's not that they are giving up hope its that it is too early to say that there is anything. And what she does have could take at least another year to strengthen and then she has to teach her left side to control her right side. So there are still things that we can do to get her the most out of what she has. (why couldn't they have just told me that to begin with) A muscle transfer for her would be very risky because of her subclavian artery transplant. So that is really not going to be one of our options. I'm sorry for really venting earlier but I just felt like I wasn't getting any communication from them at all and I was so frustrated because nobody would tell me anything. Thank you for listening. It's all good again.
Rene

Hi Rene,

I am so sorry you had to go through what you did with Mayo. I am glad that Dr Bishop called you back.

Because there isn't anything except muscle tranfer left for Ryan I also don't know whatelse is out there for Caralyn.

Don't worry about venting, this is what we are here for.

My best to you all, keep us posted, and if you need to talk just let me know, I can always call you.

Love and hugs, Karen

Hi Rene,

I'm sorry about all your earlier frustration - and glad you & Dr. Bishop were able to talk directly. Just wanted to let you know John had a contralateral C7 transfer (part of the C7 moved from the good arm to the injured) and he was able to teach his brain to make the transition from right to left pretty quickly. Our kids being younger (teens) makes it a bit easier for them.

Keep us posted, and take care - and know you're not alone.

Ellen

I suggest you contact Dr Nath...he did surgery recently on my son who has a simular injury. No results yet, of course, but Dr. Nath is a great surgeon and very personable. Good luck...Michele

Rene,
I am not sure how old your Caralyn is but if she ever wants to talk she can email me any time. I know what it feels like to be told there are no other options. But even after that I am still getting new movement. I am not TBPI but I am OBPI. And a few year back I had a doctor tell me things were as good as they will get. That broke my heart, I had always hoped for more, and she took my hope away. A year later because of pain I went back and saw a new doctor who told me I still have options, I got my hope back. My options were mostly just therapy but that was the first time I had been given a perscription for therapy. Now two years later I am still gettig gains.

This injury is a waiting game. Just make sure that Caralyn always has hopes for returned function. With hope and lots of therapy amazing things are possible. Caralyn can accomplish any thing she sets her mind to!

Good luck with recovery from her surgery at the Mayo. I hope she starts seeing results soon.
Amy 19 ROBPI from MN

I'm sorry to hear.If you want to contact my doc in edmonton, He did my muscle transfer. Dr. Lobay is awesome and is well known nation wide

Hi Rene,

I am so pleased that the Mayo rang you back and put your mind to rest a bit. I know how hard this is for you all to go through..I remember the conversations we had (all too brief unfortunately) at the UBPN camp last year.

One of the huge problems with this injury is the time it takes for any sugery to show a result, even a tiny one. In particular, the type of surgery Caralyn has had can take many months to show a result.

I have heard from several people over the years who have had the cross lateral transfer who were still regaining ever increasing function many months after the surgery. It has been known to take up to 2 years. (this was in a much older person though...)

Don't give up hope, but at the same time, my best advice is to also don't let the waiting game take over your lives. Keep up with the PT, ROM or whatever the surgeon has advised, but at the same time, don't let that become the main focus of every day. Pretty soon, one day you'll find that a whole day has passed without a thought about the injured arm!

I know that for myself, and others that I have spoken to, it was when that particular day arrived that I truly considered myself recovered. :0)Anything that happened after that was a bonus!

BIG hugs coming your way from the U.K. and I really hope we can meet up again in 2007 UBPN camp!

All the best

Lizzy F

PS How are the driving lessons going?

Dr.Kliot is the head of neorosurgery at the U.W. in seattle, he is the only one around down here U.W seattle
BRabbitt