United Brachial Plexus Network, Inc.

Hi! I just wondered if anyone was willing to share how successful (or not) primary surgeries have been. Has it been worth it?

hi betty - well if there are ruptures or avulsions it's basically the road from nothing to something

my daughter would not have much with 3 nerves ruptured had she not had primary

but I have to also say that my daughter's surgeons had a great track record with primary - some bpi specialists may not have the same track record and that's what you have to research

I wish you the best in your search for answers,
francine

Success is most decided by the severity of the injury itself and the timing of the surgery, more serious injuries like multiple avulsions have a worse outlook than stretch injuries. When researching a specialists results from primary, make sure you ask how many of the successes were avulsion injuries. General figures of numbers of surgeries performed without details of how serious those injuries were is not of much use.

you are SO right!

I know that Juliana's arm would not have nearly the movement she has now, if not for primary. She had 2 ruptures(with non-conductive neuromas) and 1 avulsion.

I would do it again in a heartbeat. We paid out of pocket for the surgery and I would do that again, too.

We got in early, 4 1/2 months, and I think that has a lot to do with our success.

We had great confidence in our bpi center and surgeons.

How successful, you ask. Well, before the surgery she could lift her entire arm 1/2 inch off the floor(when she was on her back). She had NO biceps, very poor sensation, and very little hand function.

Before we did modquad... she could lift it to about 60 degrees (now she was vertical), her sensation had improved (not perfect, but improved), and she could now grasp a large toy.

It was a miracle to me then and still is.

good luck,
claudia

We are just four months post primary, so I am not seeing a lot in terms of movement, but what I am seeing is bicep strength that was not there before. My son also could only lift his arm a tiny bit off the floor, and could do nothing else. He has neuroma on 2 nerves, 3 partial avulsions (including T1) and one total avulsion. For us, surgery was the only help. He will go in for the mod quad very soon and I have heard that we will see great results from that also. It is a difficult decision no matter what you decide. It is not easy to hand over your 6 month old baby to an anesthesiologist, in fact, I made my mother do it. The only thing that helped was knowing this would benefit him greatly. You have to do your research and then trust your doctors and your instincts.

Our daughter, too, had primary surgery. She had it somewhat late (a year old) but she still gained from the surgery. She had one avulsion (c7) and a large neuroma covering two other nerves (c5, c6) at the rootlet. Without primary surgery to remove most of the scar tissue and to do a jump nerve graft, I don't think she would have gotten much better use. It was definitely worth it for us.

However, as stated earlier by a guest, it depends on the injury itself, function now and the timing (age).

All the best to you!

Peggy

I have seen great improvement from primary surgery. My son gained so much. He had primary at 7 months and we didn't really see anything until he was about 14 1/2 months, just in time for mod, but once the mod quad splint can off, oh boy was the difference evident !!!

Our daughter's primary surgery was very, very successful. It is making the difference between a limb hanging useless at her side and having a highly functioning limb. We have had exceptional results, without the secondary mod quad. I would do it again in a heart beat. (Elizabeth had 2 avulsions.)

Of course, she's been active in PT & OT and swimming since infancy and e-stim (both TES/NMES) since 2 years. She's 4 1/2 yrs. old now and really, the only issue, is the stength of the arm. Swimming is helping strength incredibly.

I don't think we'll ever let us with therapy. E-stim will be around for a couple more years I imagine but I'm sure we'll replace it with more therapy.

Remember, the nerves can be repaired to different extents depending on the amount of damage but the follow-up committment to therapy, etc. is critical too. In our case, they go hand in hand (so to speak!).

karen

Betty,
Matthew had a total plexus injury which involved c4-t1. C6 was avulsed and if it weren't for primary he never would have gotten bicep movement. We also had Matthew involved in acupuncture and feel it played a key role in early recovery.
CIndy