United Brachial Plexus Network

Well, Christopher, I have made it home from my overwheming trip to Mayo Clinic, Oh My! I now understand the extent of my injuries (avulsion of the nerves, likely all the way down to C5?) and I am trying to grasp my surgical options for recovery. Because of the way the rest of my body was hurt in the car crash I was in this spring and the fact that I am just beginning to heal, it is really hard for me to consider such massive surgery so soon. Cutting into any of the limbs that are healing -- or my torso and "good arm", the only parts that haven't been damaged -- is very hard to handle at this moment, and I'm considering minimizing my first operation. I do have some fear, I will admit. Like you at the time of your accident, I'm single and 30, and my parents live on the other side of the country. I live in the coastal redwoods of northern California, very isolated at a time like this, and have to change career paths after this accident. There is a lot to consider.
I would like to know a little more about your recovery process: did you stay in Rochester or return home right after discharge from Mayo? Do you remember how long it was until you felt well enough to be functional again? My family is urging me to stay a bit longer in the Minnesota area after surgery if I choose to go that route, but I don't know how long that would be necessary since the hospital stay is so short. I am very concerned about follow-up visits, stitches, scarring, infections, residual pain, and other complications. Anything else anyone can tell me?

Genevieve, Hi! My name is Scott (LTBPI-June06). I can't help but notice that quite a few TBPI recipients have gone or are going to the Mayo Clinic. Obviously I am missing something here and I can't help but feel I'm missing something BIG. How do you contact the Mayo, more importantly how do you pay for the Mayo and transportation, accommodation, etc..
I am certainly interested in this because as far as I can tell I am not under any specific doctors care. You see I am grease in the machine called the V.A. system. I have a General Medicine appointment late Sept. only because I called recently and insisted I see someone, particularly neuro or thoracic. If anyone can help me please do so before it is way too late for proper medical treatment/care?
Thank y'all,
Scott
(LTBPI-June06)

Scott,

Here is the link for the mayo clinic www.mayoclinic.com. They have a brachial plexus clinic in their facility. My fiancee had surgery there in June. We live in NY and saw a couple of doctors here before we traveled there. Our NY doctors gave of no options except fuse the shoulder and wrist and that was it. If you have any questions you can email me I would be more than happy to answer any of your questions. The Mayo clinic to us was a blessing.

Kelly

Hello Scott~
I was injured in April and my father insisted I contact Mayo in June for an appointment while I was still reeling and bruised from the accident. My local doctors seemed at a loss as to how to help me and have referred to to UCSF, I go there for my initial consultation Sept. 11 and I'm curious to see what they'll tell me. It seems that everyone on this site raves about the Mayo clinic, I wonder if there is a better place out there, so I may have gotten the best news I'm going to get already from them -- which frankly isn't all that great. My health insurance seems to be paying for at least a portion of my costs of Mayo bills -- we shall see how much that is when the bills roll in... But fuck it (can I say that here?) you only live once. Travel costs came from savings, but you might also want to look into the Christopher and Dana Reeve Foundation -- some of their grants will help with things like travel and medical costs. First contact Mayo for an appointment, be hasty.

Genevieve,

Overwhelming is an understatement, in my opinion! The unfortunate realities that follow this kind of injury should be dealt with your future well being in mind and with the assistance of a deeply trusted friend or family. Someone that is sure footed and can help keep your focus on your goals and not your fears. Someone that can help you sift out the emotional overload of the situation, to the practical realities of the present and future. Never go into a doctors appointment alone until you are well practiced at taking notes and presenting lists of necessary questions with emotional clarity. I don't even want to contemplate how I would of handled this all if I was alone in the world. My younger sister completely researched, learned, and championed my health and well being regarding my BPI from about month 1 to the end of year 1 post injury, my older brother helped make contacts and offered support, and my mother nurtured when possible. I am very fortunate that my sister lives near me, because the rest of my family is all over the map.

Each of our injuries and situations are completely unique and different, what may work for me, may not work for you. The same nerves could be damaged in both of us, but the outcomes from the same corrective surgeries and differences within those nerves individual function could be completely different.

My take on getting the surgeries was pretty much the same as the way I view most things in life; Rip the band aid off, don't draw it out and prolong the pain. I wanted to get the most return of function possible. And I wanted it done as soon as possible. What I had to do or endure to make that happen was inconsequential. The only thing I'd change now, was the Gracilis muscle transfer to my biceps region. They leave about a 30 degree bend in your arm so the muscle can bend the arm easier, I hate not being able to straighten my arm out all the way. I actually had them release the bend, because mine was at about 45 degrees and the most they could open it was to 30 degrees because of calcium build up in my elbow joint. I may have them try again down the road.

Realize this, if you have avulsions (which of your nerves specifically are avulsed?) your arm will never be the same (with current surgical options). My surgeries are considered very successful, but in reality, considering what it can do now as opposed to before, it has about 5% of it's previous ability, and that's generous. But that 5% enables me to do quite a bit that I couldn't do without it. My hand is basically now a "helping hand" it's only real function is to hold things while I open them, or assist my healthy hand with something. On it's own, it's pretty useless, except I can use it to shake someone's hand, which for me was a huge surgical goal for one of my last surgeries (tendon transfers to open up hand all the way). I'm telling you this so you go into it with your eyes wide open, not to scare you.

I now am quite grateful for the function I have and use regularly. This wasn't the case when it was taking forever for things to progress (nerves regenerate very slowly). I had my last surgery (unless regenerative therapies with stem cells hit the market in my future) at 3 1/2 years post injury. That is a long damn time to be unsure how much function you will get, and to try and "move on" with your life. Realizing that I wasn't going to feel sure footed about life until my last surgery was way behind me was a great blessing, and took me 2 years to figure that out. I've also had a lot of bang ups in life (playing rugby, football, lacrosse, skiing, kayaking, mountaineering, etc.) so I'm used to recouping, but recouping fully. I didn't take the stance of "to be grateful that I'm alive" after my accident, because I expected no less than to be back to 100%, like I always had bounced back. It wasn't until I really started researching this injury and regenerative medicine, that all the possible outcomes from the severity of my injury specifically (fractured C1, C2 & C3), that I realized there are a lot of people out there, paralyzed from the neck down, that sustained less damage to their vertebra than I had. This injury already depressed the hell out of me, I can't even begin to imagine that kind of extreme life change and restriction.

I stayed at the Mayo for two weeks with my Sister and Mother until my initial surgical follow up appointment with the TBPI team. My mother stayed with me back in Los Angeles at my house for another month, driving me to physical therapy appointments and cooking my meals and such (god bless all you mothers!). All the pain killers I was on helped contribute to the black depression I went into over the next year of my life. It's only the last year or so (I'm 4 3/4 years post) that I feel like my life is actually returning to me. This kind of slump might have more to do with my own make up (being pissed at myself for not snapping to, like always. And being a bit of a perfectionist, which I'm clearly not perfect anymore, and all the massive changes that followed in my personal lifestyle, etc. etc.)

Fear of going into this is completely normal, I handled that by being exited that I was getting the best help possible and that the medical field and it's possibilities puts me in awe. I love what humans have learned to do with fixing themselves. I mean they can take a muscle out of my leg, and I'll still walk, run, & jump the same as before! And they can put that muscle just about anywhere they want as long as they can get blood & nerves to it! It's truly amazing. Especially when you consider the options... amputation (which I don't have a problem with, it's just extreme, do or die).

I didn't have patients for healing for a year plus, but now I do, it's just a reality you learn to come to grips with. I never planned anything more than a month in advance before, so how could I grasp it taking so long to get my life back. I hope you can do it faster and better than I did. I hope some of this helps you do that. Try and look at it all from the "big picture" perspective, shit happens and we learn to deal with it. That is what makes us who we are.

Also, start the battle now, before you get surgery, with your insurance about getting them to cover the Mayo Clinics charges. Arguments are that the Mayo are the only ones that perform some of the surgeries you are to have if you want to have any functional use of your arm and they are the most experienced. Believe me, deal with this now, I am still dealing with it 4 years later because my insurance would only cover portions of it, but now they are finally coughing up the rest, after years of hassle.

I wish you the best of luck, and keep us all updated on what happens with USCF and your choices with the Mayo.

Be Well,
Christopher

Christopher,
I can't believe the similarities between you and my daughter, Melanie. She was also a very athlethic girl, very competitive and physical. She had many injuries in her life that couldn't keep her down, but this last one was a doosey! She hated not being "normal" and being able to compete like she was used to. It's been almost 2 years since her accident and just recently she moved out into her own apartment. I think it's the best thing she could have ever done. She hated me always being there for her like a crutch, ready to help out at any minute. She said she had to get out on her own and do things (everything) for herself. And boy is she ever. She is doing amazingly well. She has a full time job and takes care of herself, her apartment and her little beagle. She said she needed this to prove to herself and everyone else that she can do everything by herself! She has joined a gym and is learning how to exercise and run with her "floppy" arm. It's so good to see her so happy again. In October, she is going to have her wrist and thumb fused and the skin paddle on her shoulder taken off. Did you have any fusions? She had the gracilis to her biceps also but she doesn't mind the 30 degree bend in her elbow all the time. She has no sensory nerves in her arm so I guess since she doesn't feel it, it doesn't bother her. She's hoping after the wrist fusion she won't have to wear a wrist brace and will then appear more normal. Thanks for all your words of wisdom, Sue

No. You may not say that here. Dad