Updates Please
-
admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Updates Please
Hi everyone out there....I have a question about the mod-quad surgery. Is this as indepth and time-consuming as the nerve graft surgery? I've been a little out of the loop the last few years, my daughter (4 now) had the nerve-graft surgery 3 years ago and I was pleased with the results...there has been little follow up and then tonight something brought me back to this site and I saw people discussing this surgery...is it to help with getting her arm up over her head and out (like to play airplane?)..sorry to sound so ignorant about everything, I thought we were done but am somewhat excited to see that there may be more! Thanks for your help~! Heather
-
admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: Updates Please
Hi, Heather...my son Blake had modquad almost 2 years ago and I definately believe it was the right thing to do. Immediately after taking him out of splint, he could put his arm above his head, play itsy bitsy spider, and give me a two armed hug!!!(That was the best part, how we take things for granted, always putting that BPI arm on my shoulder myself and now he can do it!!) Did you have nerve grafting done at TCH? I would follow up with doctors, send them a video and see what they have to say, if modquad or a similar procedure can help. It never hurts to ask questions, I was a little "iffy" about doing modquad, he had improvement already since grafting, but am so glad that he had it done. Good luck.
-
admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: Updates Please
I live in Toronto, so my daughter had her surgery at the Hospital for Sick Children here. You have inspired me to call her surgeon and physiotherapist and start finding out what comes next. I feel so bad that I didn't do this sooner, I hope it isn't too late for her. She just is so happy and active that I wandered into complacency about it for a while. What was the time span between the two surgeries for your son? How is he doing now? Have the imrpovements continued to come? Thanks for getting back to me!
Re: Updates Please
Hello,
My son had mod quad about a year and half. He was 20 months old. He also had primary. After primary, he could raise his arm to about shoulder length but it was a struggle. After Mod Quad, he could reach his arm up very easily and out to the side like an airplane. He could not do that before. The surgery is very quick compared to primary. It was about an hour and half. We are grateful we did the Mod Quad.
My son had mod quad about a year and half. He was 20 months old. He also had primary. After primary, he could raise his arm to about shoulder length but it was a struggle. After Mod Quad, he could reach his arm up very easily and out to the side like an airplane. He could not do that before. The surgery is very quick compared to primary. It was about an hour and half. We are grateful we did the Mod Quad.
-
admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: Updates Please
Blake has improved since his last surgery, although now he has pretty much plateaued. I think it is because his arm is dislocated most of the time(he needs capsulodesis). his first surgery was in June of 98(8mo old) and modquad was January 2000(2yrs 2months) He can raise his arm above his head, arms out to the side(still needs work), cannot supinate really well, tries really hard to put arm behind his back(I believe capsulodesis will help that), can touch opposite ear, still struggles to feed self(supination and external rotation trouble), BUT HE DOES EVERYTHING ANY OTHER CHILD DOES, JUST IN HIS OWN WAY!! I am incredibly proud of him, he has been through so much in his 4 yrs and is a really good boy!! My pride and Joy...
Re: Updates Please
Hello, Heather. Our daughter, Nicole, had primary surgery at 10 months, exploratory/neurolysis at 15 months, and Mod Quad at 23 months -- all at TCH. In our experience, the surgery itself was much quicker with the Mod Quad (which only took about 1 - 1 1/2 hrs). Also, she definitely had less pain post-op after the MQ compared to the primary nerve surgery. I also think that being older and more aware of what was going on helped with her post-op recovery.
I will tell you that the post-op care could be much more extensive with the Mod Quad depending upon where you have it done. Some hospitals use a cast and others, such as TCH use a lightweight splint. I personally prefer the splint (although others prefer the cast). However, it entails a commitment on your part. The splint is typically on 24/7 for 6 weeks followed by nighttime for 6 more weeks. During the 1st 6 weeks you also have to remove it daily while maintaining the arm up in that position while you bathe your child (while also keeping the incision dry for the first couple weeks or so while the steri strips are on). My suggestion to you is to ask the hospital what the post-op protocol is. If you are going to TCH, then you can see the account of one child, Maia -- http://www.injurednewborn.com/maia/homepage.html. There's a whole section on the Mod Quad. Just keep in mind when you read it that Maia was also dealing with being sick post-op so that complicated things. TCH's post-op protocol is also on that site. Then, there's the therapy. I feel Nicole's Mod Quad was very successful, but what has really helped us to maximize that success is doing a lot of therapy. We have EI OT 1x/wk, EI PT 2x/mon, Hospital OT 1x/wk, and Aqua Therapy 2x/wk. Plus we're doing electrical stimulation at night. This is all in addition to home therapy / play therapy / therapy incorporated into daily activities / ROM exercises, etc. I think all the therapy has helped esp. the pool therapy. I also know that w/o the surgery, the therapy alone wouldn't have gotten us this far, so it's definitely a joint effort.
Regarding the functions, yes, the Mod Quad helped Nicole to bring her arm up over her head and out like an airplane, among other improvements. She still has a long way to go, but has come so far since before any of her surgeries and even since before the MQ.
Anyway, I think the Mod Quad surgery can be very beneficial to your daughter. My advice is to get a few opinions by BP Specialists and be prepared (and get your daughter prepared) for the post-op commitment of at least a year. I hope this helps.
-Tina
I will tell you that the post-op care could be much more extensive with the Mod Quad depending upon where you have it done. Some hospitals use a cast and others, such as TCH use a lightweight splint. I personally prefer the splint (although others prefer the cast). However, it entails a commitment on your part. The splint is typically on 24/7 for 6 weeks followed by nighttime for 6 more weeks. During the 1st 6 weeks you also have to remove it daily while maintaining the arm up in that position while you bathe your child (while also keeping the incision dry for the first couple weeks or so while the steri strips are on). My suggestion to you is to ask the hospital what the post-op protocol is. If you are going to TCH, then you can see the account of one child, Maia -- http://www.injurednewborn.com/maia/homepage.html. There's a whole section on the Mod Quad. Just keep in mind when you read it that Maia was also dealing with being sick post-op so that complicated things. TCH's post-op protocol is also on that site. Then, there's the therapy. I feel Nicole's Mod Quad was very successful, but what has really helped us to maximize that success is doing a lot of therapy. We have EI OT 1x/wk, EI PT 2x/mon, Hospital OT 1x/wk, and Aqua Therapy 2x/wk. Plus we're doing electrical stimulation at night. This is all in addition to home therapy / play therapy / therapy incorporated into daily activities / ROM exercises, etc. I think all the therapy has helped esp. the pool therapy. I also know that w/o the surgery, the therapy alone wouldn't have gotten us this far, so it's definitely a joint effort.
Regarding the functions, yes, the Mod Quad helped Nicole to bring her arm up over her head and out like an airplane, among other improvements. She still has a long way to go, but has come so far since before any of her surgeries and even since before the MQ.
Anyway, I think the Mod Quad surgery can be very beneficial to your daughter. My advice is to get a few opinions by BP Specialists and be prepared (and get your daughter prepared) for the post-op commitment of at least a year. I hope this helps.
-Tina
