United Brachial Plexus Network, Inc.

Hi all,
My son Jaden is 17months and has a left bpi. He has not had any surgery yet and has good ROM. We just made our second trip to TCH, Dr. Nath recomended the mod quad for Jaden. I am terrified! I know what the mod quad is and how it could help Jaden. I would like to hear from someone who has had this surgery. If any one has had good range of motion and went ahead with the M/Q. We are also concidering having an MRI done so we can see if his joint is or is not forming properly. I would like to know what to expect and any advice on how to prepare.
thank you
shanda Biggs

Hi Shanda,
My son had mod quad at TCH when he was 23 months old. He also had primary surgery at 9 months. He had very good range and mobility before mod quad but could not lift his arm all the way up and only had partial supination. We have seen great results from the surgery. My son now has full supination and range. He has been recieving TES for almost a year and that has also helped as well. We were shocked when TCH recommended the surgery, but when we went to texas and they explained everything and showed us his limitations ( as only experienced bpi experts can) we were not hesistant to go ahead with the surgery, and have no regrets. My son did really well with hardly and pain,he was back to his old self the next day. If you have any other questions feel free to e-mail me I would be happy to answer or help any way I can. My son is now 3. Take care. Best of luck with whatever you decide.
Beth

hi Shanda,

It's a normal process to be terrified about making a decision about surgery. And what you're doing is great - researching it. If you keep on researching it you will eventually get to the point where you will be truly ok with it and set up the appointment or truly NOT ok with it and decide against it. Your gut will let you know if you are doing the right thing. Once you have made a decision then you'll have the normal anxiety that we also all have prior to surgery.

A while back a bunch of us on here came up with a set of questions that may be helpful to you at this time
They are found at http://www.injurednewborn.com/maia/drquestions.html

When we made our decisions we were always concerned with "if we don't do this surgery, what will be the outcome now and then later on in life". It helps you set up that pros and cons scale.

Anyway - Maia did have mod quad and it was very hard on her but the results were great. For us, it was the right decision. She got tremendous range from it.

EAch child is different - each child's issues are different - each child handles pain differently - and the results are different. Which is why Beth is really right in pointing out to you that your doctor would be the best person to ask specific questions to about your concerns.

About the MRI - Maia had some studies done prior to her last surgery and the results were interesting. Dr. Nath said that Maia had a posteriod dislocation. The MRI did not show this but the CT scan did. MRI shows more soft tissue and CT scan shows more boney tissue is what I have been told. So will an MRI show the joint in a way you need to see it? I'm not sure....ask first ok? And another thing - your child will be sedated for the MRI - if they are going to do IV sedation think about using EMLA cream to numb the area before they insert the IV. It's very helpful - but it's something you have to discuss in advance because it takes an hour to work. You can email me if you want more info about the EMLA.

we're here for you!
francine

http://www.injurednewborn.com/maia/homepage.html

Hi Shanda,

I can't really answer any of your questions, but I can let you know I know exactly how you feel. My son in 25 months old. When he was about 15 months old TCH recommended surgery, but we wanted to give him a little more time, he seemed to be doing so well. We just had him evaluated again and TCH again recommended surgery. We also were terrified. He has pretty good range of motion, but we also have become more aware of his limitations. We have decided to go ahead with the surgery. It will be April 30.

Good luck with your decision. My advice is to do as much research as possible. Listen to everyone else's story and experiences(this message board is a great place for that), and then do what you feel will be best for your son.

Best of luck and let us know what you decide.

Connie

Hi Shanda,
I will probably echo alot of the comments the other parents have already stated. Grant had the mod/quad @ TCH 3 mo ago. We were completely shocked when Dr. Nath suggested surgery because Grant's ROM was pretty good, and all our local therapists were pleased with his progress. After grilling Dr. Nath on exactly why he needed surgery and what benefits he would get from it(along with alot of soul searching and research) we went ahead. We have noticed that Grant can now supinate much better and put his left hand behind his head. I have to add that those are just "extra's" as far as we are concerned in our situation. We decided to do surgery for correct joint formation...the increased range was an added bonus. I have to add that we are still to early to determine if the mod/quad was successful with helping the joint. Best of luck in your decision.

I want to thank everyone for your responces. I have spent the past week online researching the mod quad and have decided to go ahead with the surgery. I pray that I am making the right decision for Jaden, he is my reason for being and I want him to have every oportunity for happiness. I feel the mod quad could could help Jaden avoid more pain in the future. Your input has helped me come to this conclusion.
Thank you,
Shanda Biggs

Hi Beth;
I was reading the boards and found your response to Shanda interesting. I have a two year old who had primary at 7 months. He has hand movement and can hold objects in his right hand. He doesn't have any biceps though. I was wondering with your son, did he have biceps before the mod quad. My son compensates a lot by tilting his body to the left in order to get his straight right arm up a little higher. He also flings it up so it can rest on the table in order for him to use both hands while playing. Even though Dr. Nath evaluated him last year at a picnic (Jordan was asleep at the time), I'm not sure how much he would benefit from this surgery. Any advice would be helpful. Thanks.

Cynthia,
To answer your question, my son did have biceps prior to surgey but was lacking in the tricep area. That is what we are working on with the TES and it seems to be helping. If you any other specific questions feel free to email me
Beth