United Brachial Plexus Network, Inc.

Marlyn,

Sorry to hear that the appointment didn't go well and also about hte passing of your friend. I can understand your heartbreak - we were in the same situation years ago. We thought Matthew wouldn't need another surgery for a couple of years, then he dislocated and he had his third surgery a year after his second. In our case, Matthew had improvements from primary surgery for a long time after it was done so hopefully more improvements are along the road ahead.

If you're open to alternatives we have used acupuncture with Matthew that I feel played a large role in his nerve regeneration maybe that's a less invasive approach you'd possibly be interested in.

Good luck on your journey.

Cindy

Marlyn
I am sorry to hear about the loss of your friend, I have lost two very good friends to Breast cancer in the past year and it certainly helps to give you a perspective on what is important in life doesn't it?
I live in the Uk -so I have no agenda where specific doctors are concerned, and I wanted to post to give you some support.
I think you have some time to play with here - obviously I don't know the actual specifics of your sons surgery, but my son Gavin had primary at 6 months of age - he had a total plexus injury with Horners syndrome.
We saw NO improvement from the primary surgery until 13 months post operatively - there was NOTHING - his arm could lift off the floor about 2 inches, but no elbow flexion , nothing.
13 months post operatively he had the most wonderful
elbow function and still does - he's 13 years old now.
Over here in the Uk parents are always advised that recovery will be apparent about 10-12 months after surgery.
Maybe Javier needs a little more time to recover some movement, so maybe you could ask if you can spend some time considering your next moves.
I wish you well with your decision making and send you my best wishes on the loss of your friend and hope that you family are safe in Louisiana
Karen UK

Marlyn,

You must be having a rough week. I dont see anyone attacking you. Nobody said you were upset with Dr.Nath. I am sure you are having a hard time with this surgery stuff as am I.

I personally think you are doing the right thing by seeing what Javier gets back from Primary before you get into another surgery. Just hit that therapy as much as you can and maybe in a year he might be better for not having the surgery. Anyway take it easy and we are all behind you and your decision.

Thank you both, Cindy and Karen- I definately will look into acupucture. I have sciatica, so maybe I can make a double appointment;)

Karen- you are so right. Javier's primary surgeon told us that we would start seeing gains after 6 motnhs and we have. Nothing real significant, but gains none the less. He told us that the real improvement would come after a year. Whatever function he gains, we will be happy. My biggest concern was him having sensation and awwareness of his arm. I have always included his BPI arm in EVERYTHING, and lo and bhold at 1 year old- he knows he has 2 arms!!! That alone makes me happy.

Thanks again, Marlyn

I am going through the exact same thing you are. We were just told that my daughter 'needs' another surgery. She has done so great with her first two surgeries but this next one seems so controversial it scares me to death. It is so hard to make the decison to go ahead with surgery and put them through yet another recovery process and pain. If only we could know for sure what the outcome would be. Maybe it would help to talk to other parents who have said yes to this surgery? That is what I plan on doing. Hang in there! Heather

KD's daddy- it has been a rough week. You're right, no one posted anything negative to me. I got a few emails. Thanks-

Everyone- HAVE A GREAT WEEKEND.

MArlyn