United Brachial Plexus Network, Inc.

My daughter is 3 yrs old and we were involved in a car accident. We discovered somehow in the accident she received a bp injury. That was 6 months ago. We live in MN and have been going to Gillette's children's hospital as well as our local clinic for ot. She has made great improvements in the last couple of months but she is obviously not %100 back to normal. She had MRI and 2 EMG. The second EMG showing no change than the first 3 months earlier. We have another appt at Gillette's next week. We also have started the process of getting a second opinion at Mayo clinic.
Is a second opinion necessary? What kind of questions should I be asking now? They are talking of possibly surgery. It is hard because she is still improving but I have read there is a timeline of when surgery will be helpful. I don't know much about this type of injury but I feel like i have to be making the right decisions for my daughter at this time. I also know that our case is a bit unusual as she is a child but not born with the condition. Any advice or information for my family? Thanks for reading.

A second opinion is ALWAYS a good idea. Seeing a BPI specialist is best. Mayo has one of the top teams for this type of injury so I think you are headed in the right direction. You didn't say what limitations or what movements she has so it's hard to tell. But, nerve surgery has a time line. They usually like to do it within 6 mos post accident. I am not saying she needs surgery and for us Mayo chose not to do surgery while Dustin was still improving. Only that at that 6 mo mark the improvement was less than they thought in some areas and they thought there could be an avulsion. They did go in and look but only removed scar tissue as the nerves were not avulsed. He is 3 yrs post accident now and still improving. I know there are a couple of other parents with small children that post, one for sure had surgery at Mayo. I think his name was Masen and you might be able to find posts by his mom using the search.
Oh, and welcome to the boards. Ask all the questions you want as we have all been there.
Sue

I would also post this on the TBPI boards, they may also have ideas since it's the boards for those injured from trauma/accidents.

Good luck!

Marieke 33, LOBPI

Thanks, we have an appointment with Gillette's children's hospital on Tuesday. They do have a bp "team". I guess I have questions for them about the pros and cons of waiting to see if she recovers with therapy and how much will return will come with surgery. Are there people out there that just recover fully on there own?

I am in the process of recovering on my own now. I usually post in traumatic forum because mine is from injury. Please email me and I can tell you in detail how this process has been for me. I also have been to the Mayo about 1 month ago. JJ (click on my username for my email address)

There are some who do recover without surgery. It depends on the severity of the injury. Dustin's was severe. Complete loss of movement except in his hand. They did tell us that it is rare for a full recovery with this type of injury, either surgical or naturally. However they also told us that if it can heal on it's own that is the best senario, he would get the best recovery that way. They did no work on his nerves or muscles, just removed scar tissue. At the time we first saw them they told us he would probably never lift his arm over his head again. He has. It has taken over 3 years, but last week he used his affected arm to get a plate off the second shelve of the cupboard. Because he cannot bend the arm completely in gravity yet he did have to do a little manuvering to get it started. Again, it depends on the injury. Sorry there are no clear cuts in this injury and recovery process. The best you can do is get the information and make the best decisions for your case as no two seem to be the same. I think the biggest thing you lose by waiting is the opportunity for a nerve graph. However muscle transfers can be done at any time. I don't know what your daughter can move but water is a great place to have them excercise the arm. This injury take a LOOONNNNGGG time to heal so don't expect too much too soon, but keep faith and keep working at it.
Sue

Thank you for the advice and sharing your stories. We went to Gillette's Children's Specialty Hospital again this week. They decided she didn't need surgery. She improved greatly on her active movement scale. The doctor's notes say she has a "traumatic right c5-c6 brachial plexopathy" They recommend continued therapy services at this time. We have started going 3 times a week now vs twice a week in our home town. She still scored lower in shoulder abduction, shoulder flexion and still pretty low in external rotation of the shoulder. They couldn't really tell us if she would be totally back to what she was pre-accident but you would likely not be able to tell she had anything wrong unless you really looked for it. What I have gained from this site and your messages that I didn't really get from the docs is how long of a recovery process this could be. The docs never have said "expect a very long recovery time" SO i have been kind of waiting for her to one day just have normal use. But, we are still seeing improvement every week so that is a great thing. SHe is still willing to work and we get in exercises when we can. Now we are debating on whether to still get a second opinion from Mayo. Her therapist that has been seeing her for 4 months doesn't really agree on how they scored her on the active movement scale. She has seen bpi cases and has worked with children but not as many as the experts at Gillette's. She knows my daughter but they know what they are looking for. I feel we have time to decide that. They didn't feel any nerves were severed. She has alway has full use of her hand also so that is good. The pool at our local clinic is nearly finished and they are talking about adding that into her therapy sessions. You are such a welcoming group. Thanks so much for the input.

Hello everyone,

8 weeks ago I suffered from a serious fall that caused a dislocation of my shoulder and fractured humerus. Movement has come back but my deltoid is completely atrophied.

I just recently had an MRI where it showed the axillary is in tact but severely stretched. I had an EMG just the last Friday where the results were pretty bad. Although some small electrical did get through, it was very little,the reading actually showed zero.

The Dr told me that that he little fibers inside tend to break as nerves are not meant to be stretched. I am very concerned i will never play softball or golf again as I cannot get my arm over my head. I have been reading some positive an some negative on the Internet about this, anybody have an expeience similar to mine?

Any real life input is VERY appreciated!

Kevin

Welcome Kevin!

I would suggest you post your story on the TBPI (Traumatic) board as well, as many people there have had similar stories and you may get a faster response than on the General board here.

You are welcome to post on all boards of course and no questions are "dumb".

Marieke 33, LOBPI

I am glad you had a great appointment with the team of BPI doctors at Gillette, if you have any questions please let me know. We see them as well, for the last year or year and a half and they did Jocelyn's surery last October. Her BPI is from birth not an accident but I can help if needed!