United Brachial Plexus Network, Inc.

I cant believe it. We got an appointment with Dr. Kozin for Dec. 9th. I am so excited to get a 2nd opinion. The Orthopedic she is seeing now seems so negative. He acts as if there is no hope for her. He didnt even examine her today. He just said "well I dont see any movement " and I told him that she has been moving her shoulder, you just cant see it that well when she has her clothes on. He is so vague. Then he stabbed my heart when he said, "if the injury is in her neck, there is nothing that can be done." I asked about surgery, and he says there is no point because the results arent that good. Then he says," well they have 18 months if they need surgery." Now everywhere that I have read says if surgery is needed, it needs to be done in the first 12 months. I honestly feel he isnt working for us, because we have medicaid. I cant help that, I was laid off from my job in April (4months pregnant), I had to get it. Well, he has scheduled an EMG (nerve study) which is tomorrow and a MRI on Dec. 2nd. After that is done, Im looking for someone else locally. I hope everything goes okay. Her OT seems to be happy with her progress, just because its a slow process. Right now she just has shoulder movement and she is 3 months old. We are just praying everything will get better. Sorry, I know this was suppose to be about the appointment, but I had to vent. Thanks.

***Update***
Well, we took Lauren to see Dr. Kozin. It appears she has a Global Brachial Plexus Injury, per Dr. Kozin. We really liked him. He was upfront about her injury, though it was hard to hear even after expecting the worse. She will need surgery to see how severe her injury is and if they are able able to, will have nerve graft surgery . I will keep this updated, as well as my blog. http://lotsofloveforlauren.blogspot.com/

if you are online tonight and see this - can you call me? (215) 643-5913 and if you don't have free long distance, email me your phone number and I can call you? francine@litzfamily.com
I'm in PA (for time zone) -- and you can call me up to 1 am.

Good Luck with your appointment, and the EMG and MRI! I am glad you are getting another opinion! It sound to me that this Ortho doc has no clue when it come to BPI Injuries. I live in a small town, and I had to change Orthos when my son broke his BPI arm. Then had to explain some info about BPI's to our knew one. But he at least listened checked out my concerns. It is always good to do your own research!

That ortho is a complete idiot. Use him for the MRI and EMG referrals, and then dump him!! But make sure you request copies of the MRI and EMG results for yourself, too. It will speed things up when you see a "real" doctor. You should be able to request the MRI on CD. You might have to pay something like $25 for it, but it is worth it... you can send it to other docs (such as Kozin) for review if you have the disk.

Kate

I would hold of on the MRI & EMG until you see Dr. Kozin next month. Dr. Kozin from my experience does not recommend them. He says there are too painful and does not provided any information. Please e-mail me privately and we can talk if you would like....but I would wait the month for the EMG to see what he suggests.

Marlene

I strongly second the advice to hold off on the EMG and MRI. Strongly.

We put our daughter through an EMG when she was about 3 months old, right before we took her to see Dr. Kozin for the first time. The test was extremely painful for her - and worse, not truly indicative of recovery in an infant. Dr. Kozin (and most pediatric BPI specialists) feel a clinical exam is the best indicator of recovery in an infant.

At three months, lack of movement below the shoulder does not mean she will never recover movement. That is ridiculous.

You will be in very good hands with Dr. Kozin. Also, there are many parents on this board (several who have already reached out through this thread ) who can help you get through this. Hang in there, don't give up, and don't listen to anyone who tells you to give up on your daughter!

Thank you for the replies. The support everyone shows really helps me get through some days. They already did an EMG, she really had no feeling except for the back of the shoulder. Everywhere else in the arm was what I called "Sleeping" . The MRI is scheduled for 12/2 and she sees Dr. Kozin on 12/9. Should I email Dr. Kozin to see if I should hold off on the MRI? Thanks for all of the input. It is greatly appreciated.

I would definitely contact him before the MRI.

Hang in there. Things really do get better. Our daughter has a bilateral injury, and at three months, could barely use her left arm and had absolutely no movement in her right arm or hand. I thought the terror of all of it would last forever - but take heart, and know it doesn't. You will all get through this together. And, this community is here for you.

I'm sorry to hear that your doctor does not think there is hope for recovery... I am robpi and had no movement at your baby's age and am typing this two handed... Each injury is different and heals differently but to offer you such an uneducated answer is irresponsible. I just turned 71 and I have had no surgery, just extensive pt both at home and via NY Hospital when I was small. I have a global injury and Horner's Syndrome, a few years ago a new pcp told me I must have had a minor injury...he had never seen a case of bpi and made a stupid guess...I changed doctors because I had already seen my MRI an emg results and met many bpi specialists and knew better.

I've had many mri's and emg's and from my point of view emg's are very painful for days after the test is completed. Maybe you should contact Dr. Kozins office and ask about going for both of these tests with someone who is not experienced with bpi injury. I was told that special position was needed for MRI and it was done a few years ago under the direction of a bpi specialist.
Good Luck with your visit with Dr.Kozin an I am so happy you found UBPN.

I am happy you found UBPN too, Mom! I am 71 and have an LOBPI and recieved no interventions. Having found UBPN at age 66 and correct information about my injuries, I have attended 2 UBPN Camps,met and heard Dr Kozin and faithfully follow all Message boards including the Traumatic BPI Board where I've learned alot about pain management and doing things one-handed. It'a all good information here!!

Did I say I am HAPPY you found UBPN???!!!
Hugs,
"Gramma" Carolyn J