My duaghter and options

[preventbpi]

First off I Wish I wasn't here but I am. Not because of anyone here but because im really upset about this injury. I am sure you all understand.

I have read these boards over and over again and cannot believe I never heard of this before my daughter was ripped out of her mom. Its bs but there must be a different plan for my little girl and our family.

Thanks for listening to me vent...

Now here is the thing... we keep hearing great things about Dr Nath from our therapists and some people I have talked with as well. I have also read that maybe he isnt the best Dr to see. I am confused.

We have spoke with 2 Dr.'s now and Dr Nath is the only one who has given us an option other than nerve grafting...to me that says something. Her emg shows limited activity and her MRI shows no signs of avulsion. We had a surgery scheduled with a Dr DiPatri at childrens memorial here in Chicago but cancelled it after talking to others and thinking the way to go was with Dr Nath. We have spoke to Dr Nath and he has told us he can help our little girl.

Does anyone think that Dr Nath is not a qualified Dr?

I read someone say he is just a plastic surgeon but from what I have read that is just not the case... I have heard great stories about him and recoveries and know he has expeiriance in these kind of cases where our Dr here did not.

I basically need to know if anyone would NOT use Dr Nath for some reason...

also... is a mod quad always disfiguring?

My Daughter was born 12-18-07 and is 6 months old...she cannot move her arm except maybe 2" when laying on her back...her hand grips but will not open...

Is there any reason to NOT have a mod quad/nerve transfer?


thank you all in advance

[katep]

If my child had the recovery that your child had, with no functional hand as of yet, I would go with a surgeon who has performed many primary surgeries as the primary surgeon or who has been working with the same team for many years. Dr. Nath claims to have performed many primary surgeries but the majority of these were performed alongside Dr. Laurent at Texas Children's Hospital. As far as I know, he no longer works with a neurosurgeon and I have not heard of him doing very many primary surgeries at all.

I have seen a number of kids who had very poor function at your child's age and had Mod Quad instead of primary nerve surgery. They also had "intraoperative" testing of the nerves which showed they were "fine". But even if the nerves showed some conductivity to direct stimulation, it did not translate into real functional improvements over time. Primary surgery doesn't guarantee a functional arm and hand, but if your child still doesn't have any movement and useful hand after 6 months I think primary nerve reconstruction - grafts and transfers - is still your best chance.

I'm not sure about anyone else, but to me, if all the doctors suggested one approach, and only one doctor suggested something entirely different, I would go with "majority rules"!

Kate

[nbkb1lo]

Hi I too had the same dilemma of decided which Dr was the best to perform surgery on my son, I took the option of my Orthopedic surgeon here in town, I took the opinion of Dr Nath's , then our final option came from Dr Grossman in Miami, I was not about to take the opinion of just one Dr. As you know this injury is very complex and not every child is exactly the same, anyhow, The option I obtained from Nath was a very aggressive meaning he wanted to go in and just start doing his thing, knowing that my son Nerve grafting was just perform six months before and we needed more time to pass before doing any other operations, Dr Grossman on the other hand was very conservative and wanted to wait to see what type of results the nerve Grafting would actually give my son, then I had the option of my surgeon in town Dr Murray, he felt the same way as Dr Grossman.. Just to wait and see, however he felt that we shouldn't wait as long as Grossman suggested which was a year. anyhow, we took the advise and opinion of our in Town Surgeon we moved forward with a Lat Dorsi transfer about 12 weeks ago and as of today he is out of his brace and the results... well... Dr Murray was pleased but it is still too early to see what more he can get back. My son’s fingers are still not working the way they should in fact he has little movement to it and was suggested to us today that another surgery down the road may need to be considered.. Anyway...I would seek out more options seek out 3 seek out 4 do what you need to do to find a Dr you will feel confident in. as for me I truly felt confident in our Orthopedic Surgeon Dr Murray therefore I stuck with him…. This is a very difficult decision to make but, I am sure you will make the right choice for your child. I wish the best for her recovery!! Good Luck!!!

[preventbpi]

This is the hard part... Being 6 months old I know we have to do something NOW not in 2 months...NO Dr will schedule something that fast let alone having to send them everything under the sun for them to make a appointment.

Im so sick of hearing about Insurance...I really dont care about getting this covered and will gladly pay cash if we needed to.

Seems like there are very very few Dr's that can be recommended and I have yet to see 2 people agree on the same Dr.

Im so frustrated/scared/confused/lost that I dont know what to do anymore...

I have no clue whether mod quad surgery should be used on a infant...seems like it will be the same as if we just wait till she is 2 or so...am I wrong?

uuuug

[marieke]

Secondary surgeries (tendon transfers, like Mod Quad) do not have a specific time, like primary surgery does. It can be done later when the child is older.

It's a tough decision, and I wish you luck!

Marieke 32, LOBPI

[claudia]

We have a wonderful medical resource page. Use it. With little to no hand function and almost no arm function...you need to see a doctor who does primary (nerve grafting ) surgery.

Just to name a few: Dr. Scott Kozin, Shriner's Philly
Dr. Peter Waters, Children's Hopst Boston
Drs. Grossman/Price, Children's Hospt Miami

Their numbers and email are on the website. They are user friendly.

You need to get moving... you are right, you don't have time to waste.

Like Kate, I have seen children who had modquad and not nerve grafting when they had function like your child's. It is not the same thing.

My daughter had nerve grafting and then mod quad. She has function because of the nerve grafting. She continued to gain function from the nerve graftng for 5 years past the surgery. Her function from modquad has decreased over the years.

you can email me.

claudia
claudia@ubpn.org

[my2girls]

It's very tough and you have to go with your gut. Did you actually meet with Dr. Nath or just speak with him over the phone? Sometimes you get a different perspective when you actually meet with someone face to face.
I thought I had made my decision about what I would do...until I actually met with all 3 doctors that I saw. Doctors think and treat differently and have differences of opinions. Dr. Nath said one thing and he is definitely more aggresive, which can be both good and bad. Dr. Kozin and Dr. Waters said something different than Dr. Nath, however they each felt the same way. Dr. Nath said that if I didn't do what he suggested, my daughter would never regain function. She had a tendon transfer at age 26 months with Dr. Kozin. She had 90 degree flexion prior and 170 degrees now (8 months later). She is not internally rotated anymore and while she does have some contractures, she is doing great.
There are many many people on here whose child had surgery with Dr. Nath. I'm sure a lot of them would do it all over again, because it was successful for their child.
If possible, meet with the doctors personally. You might fall in love with one based on your gut feeling. I know I did.
Best of luck...it's a long tough bumpy road.

[katep]

"I have no clue whether mod quad surgery should be used on a infant...seems like it will be the same as if we just wait till she is 2 or so...am I wrong?"

I don't think MQ should be done on a very young infant, because it is important to wait to see what sort of natural recovery there is. You don't want to wait too long, but I think before 1 year old is definitely far too young.

Why? Because there are several ways things could go from here. Your child could not get very much function back at all. In that case, the "rebalancing" of the muscles that MQ addresses might be completely inadequate and unnecessary. The more damaged the plexus is, the less likely that there are muscle "imbalances" and more likely that there are just deficiencies. Transferring things around when you don't know how well each muscle is going to recover runs the significant risk of getting it wrong. Tendon tranfsers is an optimization process and how can you "optimize" when you are guessing what the future will hold? Furthermore, if your child ends up having very little recovery, the "standard" set of transfers and releases that are included with the MQ might actually be the wrong things to do. In extreme cases, there are more complicated transfers that can be done, like pectoralis reflection to create an arm elevator or other rearrangements to give biceps function. If you use up those muscles now, before you know the "picture" you might end up burning your bridges for later.

The flip side is that your child might end up having a decent shoulder and not *need* any tendon transfers. While this doesn't sound like it is your child's case, it sometimes is the case that the child ends up with good enough function to not need MQ. Furthermore, the child might end up with spotty recovery, *again* dictating that the surgery should be tailored specifically to that child and not just a generalized 1-2-3 procedure. But you can't tailor until you see some recovery.

Finally, in our case, I'm quite positive MQ would have been prescribed had we taken our son to see Dr. Nath (we chose not to). Another doctor did recommend transfers and releases at 13 months of age, but with Joshua's eventual recovery pattern it would've guaranteed that he would have required a reverse-osteotomy to give *back* internal rotation function. We decided to wait to see if that surgery was absolutely necessary and not only avoided that surgery but avoided the next one which would have resulted as well.

It is really tough to sit and not do anything. I would strongly recommend primary surgery with a surgeon up on the latest nerve transfers and grafts, and very experienced in doing the surgeries AT the hospital they currently are working WITH the same team they've been doing them with historically. Yes, Dr. Nath has many surgeries under his belt, but as for primary surgery I truly believe his has very little relevant experience since he has been working entirely on his own after leaving his previous teaching hospital where he worked with a very experienced and world-reknowned neurosurgeon.

Kate

[joseph]

I also considered seeing Dr. Nath for my son after I was told nothing could be done because he has multiple avultions. I first called his nurse who told me to send a video of my son's arm function. The nurse told me that there was somthing that could be done for him. In my opinion, I think Nath is a little knife happy. He is very quick to jump into surgery. I talked to and saw a dr at Stanford. He suggested waiting to see what my son would regain. I didnt like hearing that but I didnt want to jump into surgery especially if it was unecessary. At the time my son was three months old and only made a shrugging motion with his affected arm. So we waited. The dr's reason for waiting was so he didnt go in and harm any nerve function that would have recovered on its own. "man made is not as good as God made". That's what we were told. I'm so clad we waited. He is now not considered a candidate for nerve graft surgery because he has regained some function throughout his entire arm. Still very limited with his movements but its there. He will be two in august and has just recently showed signs of bicep return. We go back to Stanford in august and will discuss tendon transfer surgery for supination, which as of now he cannot turn his hand up in the " give me five" position. So in conclusion, I found dr nath to be too aggresive. Promising he could help us before knowing the exting of my son's injury. I feel that waiting, though extremly hard to do, was the best thing we could have done for my son.

Breonna. Mama to James(4),Joseph(1) lbpi, and Robert(11 wkd)

[Taneesha]

We have seen Dr. Nath and my daughter has had surgery with him. We have seen wonderful results from the surgeries and no disfigurement. He has always been kind to our family. We are very happy with his care.