United Brachial Plexus Network, Inc.

My 17 year old son was in a dirt bike accident 3 weeks ago. He dislocated his left shoulder and was told that he has TBPI. He has no feeling from elbow down. His shoulder muscles,bicep,forarm and hand muscles do not work. I am new at this, so I don't know the names of the test the neurologist ran, but he stuck needles in his arm and also shot some electricity in his arm. The DR is saying right now that he believes the damage is in the upper truck of the BP. My question is: Does anyone else have this kind of injury and how long before you started getting use of your arm back? He started PT today and has to go 3x a week for at least the next 4 weeks. I would appreciate any type of help with this.

Thank you,

I am so sorry to hear about your son's accident. I hope I can help.

Sounds like your son had an EMG which is basically a nerve conduction test. It tests to see if the nerves are actually conducting the nerve signals from the brain to the various muscles in the arm. It's a bit like testing wiring to see if it's conducting electricity.

One thing that is good is that you have managed to find a Dr who has diagnosed a TBPI. So many people don't get an early diagnosis (and sometimes never do...)and this can lead to all sorts of problems further down the line when considering surgery and other treatments, so well done to you for finding a doctor who knows about these injuries.

As your son is so very recently injured, what the Dr. has done so far is all good. He might get a few more tests done later, maybe including an MRI scan, and possibly another EMG to see if there has been any natural regeneration in the nerves.

Doing the PT is very important to stop the arm stiffening up and to try and prevent as much muscle atrophy as possible. Later on, the dr/surgeon might well want to 'go in' to have a look at the damage as this is really the only way to determine this accurately. All the tests will indicate what the damage might be, but surgery is usually the only way to find out for sure. Sometimes, they run an EMG on the exposed nerves during surgery and this also will define the injury.

Sorry if this might be too much info in one go, but I thought I'd let you know what might happen in the near future. It could be different in your sons case, because every injury is unique, but the initial treatment is usually about the same. I am in the UK but our surgeons don't do anything differently to those in the U.S. (they just have different names for the sugical procedures sometimes.)

We have a TBPI Group over here in the UK with many members from the U.S. We also have a website http://www.tbpi-group.org which also has a TBPI messageboard linked to it. The website might be helpful to you and your son.

The bottom line is, with these injuries, is it EXTREMELY important to find the right Dr. and one who is experienced in treating adult injuries. There are many surgeons in the US who treat babies and children, but the surgery and aftercare for adults is different. It seems like you have found a dr. who has experience enough to identify a TBPI, but if you feel you need a second opinion, I know there are many people who post on this particular messageboard that can give you some further advice.

If there is anything I can help with, please don't hesitate to email me liz@tbpi-group.org

Take care
Lizzy B :0)

Hi Paula,

My son is now 18 so is a similar age to yours. He was injured three years ago when he was riding his bike & was hit by a car. I wanted to agree with everything Lizzy has posted, and add that you also might want to consider going ahead & get something scheduled for the possibility that your son will need surgery down the road.

A number of us on this board are very high on the Mayo Clinic in Rochester MN, and they are highly regarded in the medical community as well. But that also means they, at least, have to schedule a month or two out for diagnostic appointments / testing / surgery because they are in such demand. You can always cancel if your son's nerves seem to be improving on their own without surgery - and you'll know that as you get closer to the three month mark (which is a general rule of thumb to see if anything is coming back on it's own).

My son John would be fine with talking with yours if that might help. All five of his nerves were avulsed, so his was a worst case scenario - and now he can bend his arm & make/release a grip. His 2nd surgery at Mayo was filmed by Discovery Health Channel for a special they were doing on Mayo, and I can loan you the DVD if it looks like you need to consider that.

I don't want to overwhelm you so I'd best stop now! Drop me an email or reply to this if you want to coordinate a phone conversation.

Take care & know you're not alone.

Ellen

Hi Paula,
I'm very sorry to hear of your son's /injury. This injury is very slow in it's healing process and unfortunately, not one that's easily diagnosed and treated correctly. You didn't mention where you live, but there's a sprinkling of us throughout the world. We live in Pleasanton, CA and my son Chase (age 7, LTBPI) was also injured while dirtbike riding in Marh of this year. He has a complete plexus injury which means he's injured all 5 nerves (C5,C6,C7,C8 & T1) and avulsed C8 & T1 (which means those nerves were actually pulled away from the spine and will not regenerate. He had surgery in June @ Johns Hopkins w/Dr. Belzberg another well known surgeon in this highly specialized field and we're getting OT 3x/wk and waiting to see what returns. I know there's much to learn about this and it can feel overwhelming, but try to stay positive and keep asking questions - you've found an amazing source of knowledge, experience and support in UBPN. Take care,
Lourdes

I'm so sorry to hear about your son. As a parent, it's agonizing to see your child in pain. My 17 year old daughter was in chronic pain for over 4 years (it started after shoulder surgery for a torn labrum), to the point where she spent most of her time in bed as it was too painful for her to move. Not only was every major muscle group in her shoulder girdle affected, but the pain had moved down her arm and she had numbness and tingling in her hand. The pain in her lower back became excructiating and she had pain and numbness in quadricep, at times her leg gave out on her.

After visiting MANY doctors who gave conflicting diagnoses and conflicting courses of action regarding her condition, I lost confidence and looked for alternatives. I took her to Paul St. John, a Neuromuscular Therapist in St. Petersrburg, Florida. After two months of treatment, she is now PAIN FREE and has her life back again.

The last doctor who saw my daughter told me that I would be wasting my time taking her to Paul, that if anything, she would be a candidate for a muscle transfer and that I wouldn't be able to find an alternative medicine specialist who could help her. He misjudged me as I found Paul who, in my opinion, has performed a miracle.

A friend of mine, a trauma surgeon who suffered knee injuries from playing college football, was told by several orthopedists that he needed a double knee replacement. He went to Paul for treatment and is now pain free.

Another friend of mine was treated by Paul for shoulder and knee problems and is no longer in pain. Two years ago, he suffered terrible headaches after brain surgery to remove malignant tumors. Paul cured his headaches within a short period of time.

I have attached a recent post of mine that gives details of Heather's history. I know that Paul can help your son as his condition is similar to the many cases that Paul has described to me.

I included Paul's website information. His story is fascinating as he, too suffered from chronic pain and is doing what he is doing today to help those in chronic pain. He knows what it's like to go from doctor to doctor who have no answers and who are all too willing to perform surgeries that have no guarantee and may give temporary relief, only to have the pain resurface months or years later.

Please feel free to e-mail me at soyasolutions@yahoo.com as I would be glad to speak to you. I feel badly for your son and know where you're coming from. Also, Heather would be willing to speak with him as it was just in early October when she was pretty much bedridden and now has her life back again.

Following is the message that I posted yesterday. Good luck to you and your son.

Susan



My Daughter is Pain Free--Paul St. John, Neuromuscular Therapist susanfrey Posted: Dec 16, 2005 12:52 AM Reply

My 17 year old daughter is in the process of receiving treatments from Paul St. John, the pioneer of St. John Neuromuscular Therapy. She is nearing the end of her treatments and is "just about PAIN FREE " because of this man who is truly a miracle worker.

After being in chronic pain for over four years which started (in her scapula area) shortly after shoulder surgery in March of 2001 to repair a torn labrum (she was a competitive swimmer), she now has her life back again. When I say that she has her life back again, that is really an understatement. I have my happy, optimistic, positive, loving daughter back again, and Paul St. John is THE reason for that. She had bouts of scapular winging and shoulder pain for over four years and this past summer, the pain got rapidly and progressively worse--she was in pain from her neck down to her quadricep and spent most of her time in bed.

We have been to THE top orthopedists and neurologists in the Baltimore and Tampa Bay areas and have had diagnoses ranging from "there is nothing wrong with her" to incredibly, "she is in the process of developing Muscular Dystrophy". A few doctors recommended a muscle transfer and one a scapular fusion. As their diagnoses and explanations just didn't make sense to me, I looked for alternatives as there was no way that I would let someone do an invasive surgery on my daughter when I didn't have any confidence in what they were saying.

I took her to Paul St. John in St. Petersburg, Florida for a consultation in early October and he determined that, at one time she had a tear to her Leveator Scapula Muscle (we've pretty much determined that it was due to the surgeon tearing that muscle in March of 2001) which triggered a chain reaction from her shoulder girdle down to her quadricep with muscles strangling nerves.

As soon as Paul examined her, he assured me that he could "fix her" and told me that he has cured countless numbers of people with Scapular Winging, BPI-Erbs Palsy, Peripheral Neuropathy and all types of Neuropathies. He has an international clientele; people fly in from all over the world to receive treatment from him.

There are really no words to describe how wonderful he is. We went to a multitude of doctors who didn't care about my daughter's pain and who wanted to immediately dismiss me when I asked questions and then followed up with more questions when their responses didn't make any sense. In the instant that I met Paul, I knew he was different and just knew that he could help my daughter. Not only is he sympathetic to Heather, he is empathetic as well. He was in three major accidents (you can read his story on his website), one in which he was shot out of a helicopter in Vietnam (he was a Green Beret medic) and suffered for years with chronic pain. He then started to resarch the relationship between muscles, soft tissues and nerves (orthopedists only work with bones and nerves)and taught someone how to treat him. As a result, he is pain free.

His website address is www.stjohn-clarkptc.com and the phone number is 727 347-4325. Fortunately for me, St. Pete is just a two hour drive so geography is not an issue; however, after seeing what he has done for my daughter and others, I would fly to the moon to see him. I've discussed this message board with him and he advised me that, for the majority of you who are out-of-towners, he would suggest that if at all possible, to make an appointment to see him in St. Pete as he is an excellent diagnostician and could best determine a treatment plan. If you are unable to continue to see him for treatment in St. Pete, he would then refer you to a St. John-trained therapist in your area and would personally call that therapist and advise how to treat your condition.

If you would like to e-mail me, my address is soyasolutions@yahoo.com. I would be more than happy to talk to you as well as our lives have changed so much because of this man. I've seen what pain has done to my daughter and would do anything that I can to help anyone out there.

Susan

Please help me out ..
My husband had brachial plexus injury back in feb 2005...he has 4 nerve root avulsion ..doctors did 2 major surgeries on him and he still has no function of his left arm.
Please if someone see this message, please call me at 757-636-1981
or e-mail me back at
shafalipalhan@yahoo.com
Thanks.

Thank you all who replied. This is so scary. We live in Texas, an hour south of Houston. Derrick is able to bend his arm and flex his fingers, but he can't seperate them or even use them. He can only turn his arm (palm up) about 1/2 way. I asked the Dr how do we know if his nerves are stretched, torn or avulsed (is that right?). His Dr is leaning toward streched in the areas of c5, c6 and c8 and the upper trunk. Are there test you can run to find out or is it a time thing? He is already starting to lose his muscle tone. Is that normal after 3 weeks? He worked out with weights everyday and was going to join the power lift team at school. So he had really good muscle tone and now it's gone. (that scares him the most). I told him that I posted a question on here and told him I had some replies and he asked to read them. I was glad that he did. I think it is better to be informed, but I don't think he is ready to talk to anyone yet. When he is I would love to point him in the direction of your children if that is ok.

Thanks again for all the useful info you have given me!
Paula

I also lifted weights for over ten years before my accident. With no sensation from these nerves the muscles athropy very quickly. Does your son have any shoulder movement?

Paula,

I sent you a reply regarding your post earlier today, but for some reason it never posted. I'm attaching a copy of a message that I posted yesterday regarding my daughter, who is also 17. She had been in chronic pain for over four years after shoulder surgery to repair a torn labrum.

I'm so sorry for what your son is going through and am empathetic to what you are experiencing.

After hopping from specialist to specialist and getting nowhere and totally frustrated at their lack of caring and their quickness at trying to dismiss me when I questioned their answers which made no sense, I looked for alternatives. We had gone to the supposed "top" surgeons, most of whom were orthopedists for major league baseball teams.

On October 3rd of this year, I took Heather to Paul St. John, a Neuromuscular Therapist who pioneered the St. John Method of Neuromuscular Therapy. Today, 10 weeks later, she is pain free. She has her life back and is her old self again. As a mother, it was so torturous to see her in so much pain and I had such a feeling of helplessness. Paul is truly a miracle worker. He is such a kind person and very empathetic as he too. was once in chronic pain due to three major accidents. Because of that, he researched pain and the relationship between muscles, nerves and soft tissues (orthopedists focus on the bones and nerves, not the muscles). He taught someone how to treat him and became pain free. He has an international clientele and most recently went to Romania as a guest of the Romanian government, who asked him to give seminars to the Romanian medical students. Unlike American medicine, the European countries, integrate alternative medicine such as Neuromuscular Therapy with tradtional medicine.

A friend of mine who is a trauma surgeon was told by several orthopedists that he needed a double knee replacement due to injuries sustained while playing football at the U of Oklahoma. Although he is a medical doctor, he is smart enough to think outside the orthopedic paradigm and saw Paul and within two months he was pain free.

Also, a friend of a friend was experiencing horrible headaches after surgery to remove malignant tumors from his brain. Paul cured him of his headaches and previously cured him of shoulder and knee pain.

Following is my post from yesterday. Please feel free to e-mail me at soyasolutions@yahoo.com and, if you like, I will be more than happy to talk to you. Good luck to you and your son.

Susan




My Daughter is Pain Free--Paul St. John, Neuromuscular Therapist susanfrey Posted: Dec 16, 2005 12:52 AM Reply

My 17 year old daughter is in the process of receiving treatments from Paul St. John, the pioneer of St. John Neuromuscular Therapy. She is nearing the end of her treatments and is "just about PAIN FREE " because of this man who is truly a miracle worker.

After being in chronic pain for over four years which started (in her scapula area) shortly after shoulder surgery in March of 2001 to repair a torn labrum (she was a competitive swimmer), she now has her life back again. When I say that she has her life back again, that is really an understatement. I have my happy, optimistic, positive, loving daughter back again, and Paul St. John is THE reason for that. She had bouts of scapular winging and shoulder pain for over four years and this past summer, the pain got rapidly and progressively worse--she was in pain from her neck down to her quadricep and spent most of her time in bed.

We have been to THE top orthopedists and neurologists in the Baltimore and Tampa Bay areas and have had diagnoses ranging from "there is nothing wrong with her" to incredibly, "she is in the process of developing Muscular Dystrophy". A few doctors recommended a muscle transfer and one a scapular fusion. As their diagnoses and explanations just didn't make sense to me, I looked for alternatives as there was no way that I would let someone do an invasive surgery on my daughter when I didn't have any confidence in what they were saying.

I took her to Paul St. John in St. Petersburg, Florida for a consultation in early October and he determined that, at one time she had a tear to her Leveator Scapula Muscle (we've pretty much determined that it was due to the surgeon tearing that muscle in March of 2001) which triggered a chain reaction from her shoulder girdle down to her quadricep with muscles strangling nerves.

As soon as Paul examined her, he assured me that he could "fix her" and told me that he has cured countless numbers of people with Scapular Winging, BPI-Erbs Palsy, Peripheral Neuropathy and all types of Neuropathies. He has an international clientele; people fly in from all over the world to receive treatment from him.

There are really no words to describe how wonderful he is. We went to a multitude of doctors who didn't care about my daughter's pain and who wanted to immediately dismiss me when I asked questions and then followed up with more questions when their responses didn't make any sense. In the instant that I met Paul, I knew he was different and just knew that he could help my daughter. Not only is he sympathetic to Heather, he is empathetic as well. He was in three major accidents (you can read his story on his website), one in which he was shot out of a helicopter in Vietnam (he was a Green Beret medic) and suffered for years with chronic pain. He then started to resarch the relationship between muscles, soft tissues and nerves (orthopedists only work with bones and nerves)and taught someone how to treat him. As a result, he is pain free.

His website address is www.stjohn-clarkptc.com and the phone number is 727 347-4325. Fortunately for me, St. Pete is just a two hour drive so geography is not an issue; however, after seeing what he has done for my daughter and others, I would fly to the moon to see him. I've discussed this message board with him and he advised me that, for the majority of you who are out-of-towners, he would suggest that if at all possible, to make an appointment to see him in St. Pete as he is an excellent diagnostician and could best determine a treatment plan. If you are unable to continue to see him for treatment in St. Pete, he would then refer you to a St. John-trained therapist in your area and would personally call that therapist and advise how to treat your condition.

If you would like to e-mail me, my address is soyasolutions@yahoo.com. I would be more than happy to talk to you as well as our lives have changed so much because of this man. I've seen what pain has done to my daughter and would do anything that I can to help anyone out there.

Susan

He does have shoulder movement. He has one muscle on his arm that works (the muscle in the back of the arm) and that is weak. I don't see how he can lift it at all, but he is determined (and a little stubborn). He is not going to let anything stop him.