United Brachial Plexus Network, Inc.

[I submitted this post in the Newly Injured TBPI forum an hour ago, but it’s not yet displayed and I’m not sure that’s really the most appropriate forum so I’m submitting it here too.]

I’m looking for any info that can help me with me rehab. I broke my neck and had a brachial plexus injury on my left side in 1965, at the age of 19. Finally because of pain and deformity in the joints of my right hand, I decided to have the Steindler flexorplasty operation (moving my forearm flexors and pronator higher on my humerus to give me some elbow flexion). The doctors also moved a small chip of my elbow, so that the chuip, plus the natural contracture from the surgery, could end my hyper-extending my elbow.

My question. Rehab is excruciatingly slow. The doctors now only allow me to flex my elbow (NO extension) and only when my arm is prone on a table. If I use an arm skate (homemade using ball bearing rollers), I can bring my arm toward me a couple of inches. However, the therapist expects me to be able to move with minimal resistance and so far I am able manage that less than an inch. Can you tell me --

1) How much of this is my brain not yet learning to use the flexors/pronator?

2) How much is it weak muscles?

3) How best can I further retraining my brain?
a. If I repeat the exercises for hours with the arm skate will that help?
b. Do I really need to use the added resistance to train my brain
c. How should I be thinking when I do the exercise? Like my upper arm and forearm are trying to contract?
d. Would biofeedback or any other approach be of any help?

4) How can I best strengthen the transplanted muscles?
a. Will the usual finger, hand grip, and forearm exercises help me to flex my elbow now?
b. Do I need to try to flex my elbow whenever I do any of these exercises?

5) If you had a surgery involving transplanted muscles (or nerves) how did your rehab proceed? What aids? what exercises? what to avoid? What helped the most? How long did it take?

I’m really anxious to find information that might help and welcome any ideas you can share with me.

Thank you so much.

Trish

Hi Trish:

I know, being a person with BPI is frustrating. I came into this world OBPI. So, I can empathize to your emotions.

Every injury varies. Rehab is now a life-long part of your being. Be patient.

I strongly view that exercise is one of the better ways to work the limb. Theraband provides a slight to intense resistance
training. Using your arm for everyday tasks may trigger the brain to send electrical signals to your limb. A soup can, passive exercising in a door jamb, picking up a pet, are some examples of using your limb. See an OT/PT for exercises and equipment. Bottom line is not to give up! Apathy is your biggest negative for BPI. Use your arm, no matter what happens.

There is no quick fix to BPI. Your nerves, muscles, and bones have been traumatized. UBPN offers plenty of awareness, videos, support, and advocacy for people with BPI. Stay involved. Learn, adapt, be creative, and share your story.

Keep Positive and Smile,

Tony/ASC
ROBPI/Adult
"Just One More Step"

Hi Tony,

Thank you so much. It is a comfort to find a support group where folks understand the trials (and unique achievements) of people with a BPI. My situation may be a little different from many.. In the beginning it was so hard. The pain from my broken neck and emotionally losing my husband (who felt responsible for our car accident) and losing my ability to play bass viol (when even practicing for our university symphony orchestra for 4 hours a day gave me such pleasure, But I got beyond that. Thankfully 3 surgeries got the pain under control and I ended up as a software engineer (before programming classes were offered in college).

Physically, I always tried to use my left arm for everything I could – my deltoid is impaired so I had trouble lifting even my elbow past shoulder height, but would do things like sort of throwing my arm up so the forearm arm hung down at a right angle but allowed me to hold a mirror and see the back of my hairdo if l Leaned backwards some. I found ways. For music I played a slide guitar for a while. I couldn’t lift my harm so everything sounded extra “slidey” but the others in our senior (that is old folk) country-western band accepted it graciously. I was also in a senior recorder group, propping my arm up on a trumpet case or a “Y” handled cane so I could play. As they say, “Where there’s a will. . .”

My biggest physical advancement though was when I took a two-Sunday course to become a certified training instructor. The instructor had a story about how her daughter couldn’t pass the chin-up requirement for the police academy. Her story made all the difference for me. After watching her daughter trying so hard and making no progress, our instructor tried something different – lifting her daughter up to the bar and then asking her daughter just slow her descent back down to the ground. I learned thus about “eccentric contraction” and started applying that principle at the gym. Before I’d do machines like the lateral arm raise even though I wasn’t sure I was even budging the minimum 10 lb weight. After the class I started using my right arm to lift me left arm up for that machine and them used my left arm muscles to slow my arm’s descent. It started working! And after something like 10 or 12 months I discovered I could increase the weight! Then I found I could carry a gallon of water in my left arm finally without worrying about shoulder subluxation. I would bend over a little and hold my arm away from my body (like for the machine) and let my forearm fall at a right angle (so I wouldn't hyperextend my elbow). And voilá. Great personal satisfaction!

My immediate concern though: I know my April Steindler procedure can fail if I allow any elbow extension (active or passive) too early. Through my HMO, I have already had two occupational therapists who wanted me to do passive extension. I said no, my doctor gave me explicit instructions (confirmed in an email): NO extension yet! Consequently, I’m really concerned that I may inadvertently misstep and risk failure because my therapists aren’t so knowledgeable of the rehab protocols for the Steindler procedure. I have joined you all, seeking to educate myself through your experiences.

But, no matter, I don’t give up. It just takes me a little time to collect myself once in a while. &;-)

Thank you again for listening and for your feedback, Tony. I really appreciate it.
Trish

Trish:

Is it not a wonderful feeling of fitting in with people with BPI?!

UBPN is the only national support group for BPI.

Personally, I find that living with BPI is a gift, not a disability - so to speak.

Tony/ASC
ROBPI/Adult
"Just One More Step"

It is a wonderful feeling to find kindred spirits who have shared life's experiences. That is a blessing. And to me, in the sense that life is a crucible for building character, I think living with BPI, in and of itself, is a blessing too. Is that how you mean?