United Brachial Plexus Network, Inc.

Hi everyone,

My name is Alissa, I am 23 and live in Oregon. I just joined the site for my son, Caden, who is only one and a half.

On April 3rd, while I was at work, Caden was in a head on collision with his father. He and the driver of the other vehicle were both pronounced dead at the scene. It is a miracle that my little boy survived with only the injuries that he did, and he has shown so much improvement already.

In addition to a broken femur, Caden had complete avulsions of his two lower roots (C8 and T1, I believe?) from his car seat harness. We are currently unsure of what exactly happened with the upper three. He has no movement in his left arm right now. He also has a ptosis in his left eye which they believe is also due to the injury.

(Please bare with me, I am still not very familiar with the terminology for all of this!)

We have seen two different specialists so far, Dr. Solomon at Doernbecher's Children's Hospital (OHSU) and Dr. Madey at Legacy Emmanuel Children's Hospital. Both doctors have different opinions as far as what to do next.

Dr. Solomon suggests physical therapy twice a week for the next 3 months. He said at that point if there is no progress, we can discuss other options. Dr. Madey, however, wants to perform exploratory surgery as soon as next week. He said that if the roots are stretched, he will simply close it back up and leave them to heal on their own. But if they are torn apart, he will attempt to repair them.

After reading many of the posts on this site, my understanding is that either way it likely will take much longer than three months to heal. While I wish we could have begun therapy immediately after the accident, we have our first appointment tomorrow. Still, I am torn as far as where to go from here? I contacted the MAYO Clinic in Phoenix last night after getting some info on this site, so I am hoping to hear back from them soon. If I need to get a referral from Caden's pediatrician, I know that he would be more than happy to do so. Just not sure if it's necessary?

Please please please DON'T HESITATE to put your two cents in! Any and all advice is more than welcome and so appreciated. Caden just got out of his hip spica cast last week and will also have to learn how to walk again, so he is having a hard time but is in good spirits!!!! Still, I would do anything to help him out and make things easier on him right now!!!

Thanks so much

(Please bare with me, I am still not very familiar with the terminology for all of this!) - You are doing great!


Dr. Solomon suggests physical therapy twice a week for the next 3 months. He said at that point if there is no progress, we can discuss other options. I really don't agree with this, means that your son would be almost 6 months post accident before doing anything, way too long!

Dr. Madey, however, wants to perform exploratory surgery as soon as next week. He said that if the roots are stretched, he will simply close it back up and leave them to heal on their own. But if they are torn apart, he will attempt to repair them. This sounds better

After reading many of the posts on this site, my understanding is that either way it likely
will take much longer than three months to heal. That is correct!

While I wish we could have begun therapy immediately after the accident, we have our first appointment tomorrow. Right now, seeing a bpi neurosurgeon specialist is much more important than doing therapy. If the nerves are torn or avulsed, therapy wont do much, you need to get him surgery to have any chance of some recovery!


Still, I am torn as far as where to go from here? I contacted the MAYO Clinic in Phoenix last night after getting some info on this site, so I am hoping to hear back from them soon. If I need to get a referral from Caden's pediatrician, I know that he would be more than happy to do so. Just not sure if it's necessary? I think the Mayo clinic in Rochester would be better! You might want to post in the obpi section and see who they say is great for children. Even though your son wasn't injured at birth, he might be young enough that the procedures are the same. I know the Mayo, Rochester are one of, if not the top teams for tbpi. (obpi, is obstetric, tbpi is traumatic)

My condolences on loosing your husband and I am know this is an amazingly difficult thing to deal with under any circumstance. My prayers to you and your son.

Dan

Don't wait another minute and contact the Mayo in Rochester, the team of Dr. Spinner, Dr. Bishop, and Dr. Shin were an amazing group to have helped me. I too am from Oregon and suffered my injury August of 2014. I was also treated at Legacy Emmanuel and was told that only time will tell. Little did I know how inept the Drs. were about this injury until I was released and started doing research on my own. I had my surgery done at the Mayo March of 2015 and am still waiting on innervation as it is a slow process. I'm not sure what tests have been performed on your son, but the Mayo requested MRI, MRA, CT scan, mylogram, chest X-rays, EMG, as well as ultrasound. Upon contacting the Mayo I had only had the MRI and the EMG, so my first visit was a whirlwind of testing followed by a room full of Drs. for a consultation and a list of options, in my case I chose the full meal deal. You may be able to save yourself one trip and have the testing performed here and forward the results. The Mayo doesn't sugar coat it as this injury is serious and debilitating, they also won't have you come out if they have nothing to offer. At the very least contact them as time is of the essence. I know that there are a few other places in the US you may try which are noted on this site, but I can only speak of my experience and the Drs. I dealt with at the Mayo were top notch.

Pm me if you would like to talk more about this. Best of luck and you two are in my thoughts.

Also, I failed to mention, work on his passive range of motion as I was also not made aware of the importance of this, and had a greatly diminished range of motion before I figured that out.