Mom looking for advice

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
Damians Mom
Posts: 11
Joined: Tue Oct 05, 2010 10:38 pm
Injury Description, Date, extent, surgical intervention etc: My son Damian is 7 1\2 years old and he was a large baby 10 lbs 15 oz. He has a brachial plexus injury due to being pulled out with extreme force during birth. We have received very little encouragement from any of the doctors that we have seen here in Canada. They all said the same thing that he basically has to live with th einjury adn that nothing can be done to improve his range in movement. As I started to look into Doctors in the USA they seem to be doing amazing surgeries to improve renge in movement in many children. Since we are from Canada I have no idea if surgery is even an option in the USA as we would have no medical coverage since we are not residents of the USA. Any info would be greatly appreciated regarding doctors in the USA and Canada.

Thanks
Damians Mom

Re: Mom looking for advice

Post by Damians Mom »

I was speaking with a Shrinner and he stated that there is a doctor in Montreal that specializes in brachial plexus injuries, so we are going to look into this doctor. Has anyone had any exeprience at this hospital? If so any info would be greatly appreciated.

Thanks
Damians mom
Damians Mom
Damians Mom
Posts: 11
Joined: Tue Oct 05, 2010 10:38 pm
Injury Description, Date, extent, surgical intervention etc: My son Damian is 7 1\2 years old and he was a large baby 10 lbs 15 oz. He has a brachial plexus injury due to being pulled out with extreme force during birth. We have received very little encouragement from any of the doctors that we have seen here in Canada. They all said the same thing that he basically has to live with th einjury adn that nothing can be done to improve his range in movement. As I started to look into Doctors in the USA they seem to be doing amazing surgeries to improve renge in movement in many children. Since we are from Canada I have no idea if surgery is even an option in the USA as we would have no medical coverage since we are not residents of the USA. Any info would be greatly appreciated regarding doctors in the USA and Canada.

Thanks
Damians Mom

Re: Mom looking for advice

Post by Damians Mom »

Marieke, I was just wondering what the name of the doctor is in Montreal?
Damians Mom
katep
Posts: 1240
Joined: Mon Mar 29, 2004 3:20 pm

Re: Mom looking for advice

Post by katep »

My guess is

http://ubpn.org/index.php?option=com_ph ... 117&id=218

I would still contact Dr. Kozin directly and talk to him about your child. He would probably be able to give you feedback on whether the Montreal clinic performs the same surgeries that he does, etc. He's free to talk to via email for phone, and generally quite easy to reach.

Kate
User avatar
marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Mom looking for advice

Post by marieke »

I had surgery at the Shriners here in Montreal. My MD was an orthopedic surgeon. Did they not give you a name?
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
Damians Mom
Posts: 11
Joined: Tue Oct 05, 2010 10:38 pm
Injury Description, Date, extent, surgical intervention etc: My son Damian is 7 1\2 years old and he was a large baby 10 lbs 15 oz. He has a brachial plexus injury due to being pulled out with extreme force during birth. We have received very little encouragement from any of the doctors that we have seen here in Canada. They all said the same thing that he basically has to live with th einjury adn that nothing can be done to improve his range in movement. As I started to look into Doctors in the USA they seem to be doing amazing surgeries to improve renge in movement in many children. Since we are from Canada I have no idea if surgery is even an option in the USA as we would have no medical coverage since we are not residents of the USA. Any info would be greatly appreciated regarding doctors in the USA and Canada.

Thanks
Damians Mom

Re: Mom looking for advice

Post by Damians Mom »

I was speaking with the Shrinners this morning and we have started the application for Damian to be refered for a second opinion, I told the shrinner that I was really wanting to be refered to Dr Kozin as I have heard so many great things about him so hopefully this process won't take too long and everything goes smoothly.
Damians Mom
Damians Mom
Posts: 11
Joined: Tue Oct 05, 2010 10:38 pm
Injury Description, Date, extent, surgical intervention etc: My son Damian is 7 1\2 years old and he was a large baby 10 lbs 15 oz. He has a brachial plexus injury due to being pulled out with extreme force during birth. We have received very little encouragement from any of the doctors that we have seen here in Canada. They all said the same thing that he basically has to live with th einjury adn that nothing can be done to improve his range in movement. As I started to look into Doctors in the USA they seem to be doing amazing surgeries to improve renge in movement in many children. Since we are from Canada I have no idea if surgery is even an option in the USA as we would have no medical coverage since we are not residents of the USA. Any info would be greatly appreciated regarding doctors in the USA and Canada.

Thanks
Damians Mom

Re: Mom looking for advice

Post by Damians Mom »

Just wondering if anyone has had their first surgery when they were 8 or older and if there was much progress gained form the surgery?
Damians Mom
User avatar
marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Mom looking for advice

Post by marieke »

I was 14.. got some improvement. I felt it was worth it but I was also very willing to do the PT/OT needed right before and after surgery.

Many kids have the "secondary" surgeries when they are older (8+) and it depends on what surgery it is, how much damage there is, what you want to gain...
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
User avatar
karategirl1kyu
Posts: 363
Joined: Mon Feb 19, 2007 12:59 am
Injury Description, Date, extent, surgical intervention etc: LOBPI, had surgery when I was 9- they moved muscles and tendons from one side of my arm to the other side. I can lift my arm to about my eye level, can't straigten it all the way and can't completely supinate my wrist.
Location: Richmond, RI

Re: Mom looking for advice

Post by karategirl1kyu »

i had my first and only surgery when i was 9. i definitely gained some overhead, and some straightening, and there was a lot of therapy involved.
~Mel/23/LOBPI
Damians Mom
Posts: 11
Joined: Tue Oct 05, 2010 10:38 pm
Injury Description, Date, extent, surgical intervention etc: My son Damian is 7 1\2 years old and he was a large baby 10 lbs 15 oz. He has a brachial plexus injury due to being pulled out with extreme force during birth. We have received very little encouragement from any of the doctors that we have seen here in Canada. They all said the same thing that he basically has to live with th einjury adn that nothing can be done to improve his range in movement. As I started to look into Doctors in the USA they seem to be doing amazing surgeries to improve renge in movement in many children. Since we are from Canada I have no idea if surgery is even an option in the USA as we would have no medical coverage since we are not residents of the USA. Any info would be greatly appreciated regarding doctors in the USA and Canada.

Thanks
Damians Mom

Re: Mom looking for advice

Post by Damians Mom »

Our application with Shriners was a success and there is a Dr Janelle in Montreal that is willing to look at his case to see if there is anything that she can do, we have to send her some more reports that she is going to evaluate the info to determine is she would like to see him or refer him to an other Dr. We are headed in the right direction which is very exciting. I was wondering if anyone from Canada has had medical care thru Shriners
Damians Mom
DAC2047
Posts: 4
Joined: Mon Jan 10, 2011 12:54 am
Injury Description, Date, extent, surgical intervention etc: Nanna to ROBPI

Re: Mom looking for advice

Post by DAC2047 »

We also used Dr. Grossman & Price in Miami, but they also have and office in New York. Great team of BPI doctor's.
Also there is Dr. Kozin at shriners in Philadelphia is also a wonderful doctor. I know there are secondary surgeries that are done, and the time frame that they gave you for when your son needed to have surgery was for the Nerve grafting surgery. The secondary surgeries can be done all the way up into the teens years. So check into that, there may be a different type of surgery that they could do to help.
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