United Brachial Plexus Network, Inc.

Hello,

I am writing here hoping to find good news regarding the possibility to cure/improve traumatic brachial plexus palsy. This problem is not mine but my boyfriend's who, at 35 years old, suffered a motorcycle accident on March 24, 2012. We are Romanian citizen and we live in Bucharest, Romania (Eastern Europe).

My boyfriend had his first surgery in Bucharest in July 2013 ....but unfortunately the outcome was zero. The surgery lasted nearly 3 h and the doctor moved some nerves from his back to his deltoid and biceps muscles. He told us that after 3 months he should be able to bend his elbow and he must have electrostimulation and rehab sesions every day.

We have decided to try aboad and in February 2015 we went to Aachen, Germany were the doctor did 2 procedures:
1) first he wanted to know for sure if the all 5 nerves had been torn from his spine even though we showed him 3 MRIs. Thus, by boyfriend suffered a nerve exploration proceduce wich lasted 2 h and the doctor gave us a very good news: he found 2 nerves wich responded very well to local EMG;
2) The next surgery was also the longest because lasted 18 h. The doctor transfered the right gracilis muscle to replace his left biceps and took a nerve from his calf and used it to connect the good nerve from spine with the one from the gracilis muscle.

For 7 weeks he had to keep his left arm in a special sling to prevent it from bending and after that he could began his rehab program. He was told he must have electrostimulation as much as possible in order to prevent gracilis atrophy until he could bend by himself the elbow. He is still having electrostimulation at home by using a mobile medical device.

Now, 6 months after surgery , he is still unable to do anything with the paralised arm. He is having pain and for that is taking medication ( 150mg of Lyrica every day).

If there is someone anywhere in the world who could tell us how long do we have to wait until seing any improvements please do so. He is loosing his patience and gets disappointed because even after the second try his left upper limb is the same as it was after the accident.

Please give us as much detailes regarding the time of waiting, the first sensations and rehab that you had. I know that healing of kind of problem is a very slow process and needs time until some results could be seen ....but he was and still is a very very very stubborn man and is loosing hope.

I appologize for any spelling and grammar mistakes. My English is not awesome because I don't use it often for communication.


Irina
Bucharest, Romania

You Guy are doing Great, You try
We all Try with outcomes that SUck
You need to see the last Doctor, The doctor need to Explain why you have no usage Still
Ether the doctor , can help or he needs to give you to a BPI specialist doctor.
Doctors leaving a patient without a direction Is
Many post. the need to find the right doctor and really are without direction and on a quest to fine the right doctor who can help and give you a direction.
The outcome from these injury are positive posting here to . Over time You will find your way or you will adapt , your way.
Being stubborn is Tenacity to me I would rather try than give up.
It is Tough bring us trying to adapt
Bug the doctor or get a referral to a BPI doctor.
Just thinking
Tom

Dear Tom,

The doctor from Germany was a specialist in BPIs and we went to him with hope. I was asking if maybe we have to wait longer time until having some results. I saw that on this forum that there were patients who waited 12 to 18 months until they felt something to their transfered muscle .

After how long since the operation did you have an EMG to your arm ??? I intend to take my boyfriend to a specialist and have that investigation done.

If someone else is reading my post and feels that has something to tell please don't hesitate to send me a message.

Freud,
I saw your email and am following up on your post. My son had no feeling for at least 4 months after his gracilis muscle transfer (he's had 2). It is a very slow process, he needs to be patient. By what you describe of his injuries, his injury does not seem as severe as my sons'. My son had C5-T1 completely disconnected at the spinal column. He does have movement in the arm, can bend and is able to grasp, but very small movements. He also has feeling back in his fingertips. Your boyfriend MUST have a positive attitude, anything can happen. Just try to give it some more time and I do recommend going back to the last doctor and I do recommend going to therapy especially occupational therapy! He needs to build up the new muscle and tendons. My son does still have the pain. It seems to be worse when he is de-hydrated and tired. My son is 21 now, his accident was 5 years ago, most of his movement that he does how have has come back after 18-24 months. I hope that helps. But remember that everyone is different and recovers differently. Try to have hope.

Irina,

I got your private message. My gracilis transfer to biceps area started getting extremely faint flickers after 6 months. After 8 months I was able to start moving the forearm in a swimming pool. My deltoid took 18 months (innervated using half of good side C7 and crossing over to other shoulder).

Best,
Chriatopher

Dear Suzanne and Christopher,

Thank you both for answearing my message. Can you please tell me if and how long after your surgery had an EMG investigation and what was the result ? I begun to think that in our case not even the second operation wasn't successful because it's been almost 7 months and he's arm is the same. The only good thing I can say is that during electrostimulation of the arm he always says he can feel how the muscle contracts and that thing is also visible.

What I cannot understand is why the muscle doesn't show not even a little sign of contracture or flickers when he is trying to flex the elbow. He says he is giving the signal from brain and wants to bend the elbow but the muscle doesn't respond at all.

This week or maybe next one he'll have an EMG to see if there is any activity on the nerve and transfered muscle. The German surgeon told us that the first good signs should be seen at EMG because they will be very small. I hope for a good result.

The new physical therapist is working very well with him and for 1 h is doing both passive movements and trys passive-active ones by telling him to look at his forearm and try to bring it to his mouth and also to try to do finger movements.

Best way I learn to strengthen the forearm and fingers is by squeezes a small rubber ball.
Warm Whirlpools help for pain and for trying.
Life with birth erbs , No treatment ever from any doctor:shock: Just What I dream up to try We all do it, there is never a end in trying to fine help , Scary is, it out there by post here To
I would study Dan sling and the Great People who post who use it for activity. They end up using one arm , Awesome baby!
We all rock and so do you!!!
Hope this helps
Tom

Freud,
I completely understand the frustration. The Occupational Therapist at the Mayo Clinic was using a device for Ryan to help him see the movement however small was while he was trying to move it. If I remember correctly it measures the electro-impulses in the arm while he's trying to move it. The point is that albeit he may not be able to see a big movement, the device has a scale that spikes to show how strong the pulse is. Anyway, here is the name of the device: TR10 EMG, your therapist should be able to purchase one much cheaper than yourself. Also, it might be helpful for your therapist to contact the one Ryan had at the Mayo, this is her last contant info:

Sonja Kranz, OTR/L CHT
Mayo Clinic
Physical Medicine & Rehabilitation, Hand Therapy
Gonda 15 East
Rehabilitation Services for the Hand, Wrist, Elbow and Shoulder
507.284.8841
Monday – Friday 8am to 5pm
200 First Street SW, Rochester, MN 55905
Email: kranz.sonja@mayo.edu

The work with the therapist I believe helped the most. Ryan does have scar tissue from the surgeries in his wrist that the doctors feel may be impeding his progress though. Ryan has pushed back his next surgery for now to remove the scar tissue and fuse the wrist and thumb.

Hello,

My boyfriend is now 13 months post-surgery and he is same...no movement of his arm and elbow. Last week I took him to have an EMG done and the only good news was that he has very "good" electrical activity in that transfered muscle. The doctor asked him to try to contract the muscle and we could see how there was a small variation on the screen. But that was all.... In the rest of the upper limb the situation is bad ...deltoid doesn't have electrical activity, fingers also don't have ...but the pain is still there and when the weather schanges is becoming worse. He continues both with electrostimulation on that muscle ( wich responds very well because we can see it how it contracts) and kinetotherapy. The surgeon recommended him to have daily electrostimulation in order to prevent the muscle atrophy. My boyfriend says he is not feeling nothing strange and when he is laid down on the bed and trys to contract the muscle as if he is wanting to bend the elbow the muscle doesn't respond. I don't know what to believe anymore. His daily therapy is the following: 1 h of rehab solely dedicated to his arm and in the afternoon he has 1.5 - 2 hours of electrostimulation with a portable medical device. Both therapies are done at home. But perhaps he is not doing the proper therapy and we have to change the therapist.

I spoke with the surgeon and he told me that my boyfriend's brain needs to be trained to activate the nerve and muscle. I don't know how to do that and he is not willing to perform his daily shoulder exercises as the surgeon said. It would be helpfull for him a Biofeedback device ?

Can anyone give me detailes about the kind of therapy they had ? Movies or photos ? Can you please describe what you did to train the muscle and to activate it ? Maybe if I show him what he must do he will try to do the movements.