Hello,
Hi out there to everyone. I am new to this list having recently discovered it. I'm 25 and have a right BPI from birth. I have read some posts on this list about adults having surgeries such as this MOD QUAD. I'm curious as to what this is. I have good function in my right arm but I have always been under the impression that that it is too late for adults to make any more functional gains from surgery because so much time has passed. I'd be really interested in hearing any stories from adults who've have erbs since birth but have had surgery recently. What kind of functional gains has it given you?
Thanks a bunch,
Becky
Mod Quad and other corrective surgeries
Re: Mod Quad and other corrective surgeries
Hi Becky,
Welcome. I'm fairly new here myself. I am 56, LOBPI. That's left obstetrical brachial plexus injured.
I can't tell you anything about the surgery since I only learned of it after I found UBPN. I'm sure that you will get replies from those who have been through it. Also, there is another thread on this board about this surgery. I advise you to read it.
Joanie
Welcome. I'm fairly new here myself. I am 56, LOBPI. That's left obstetrical brachial plexus injured.
I can't tell you anything about the surgery since I only learned of it after I found UBPN. I'm sure that you will get replies from those who have been through it. Also, there is another thread on this board about this surgery. I advise you to read it.
Joanie
-
Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: Mod Quad and other corrective surgeries
Hi Becky
Welcome to the boards.
I have never had any surgery and think I am too old to attempt it now. Besides, no one ever offered me a surgery that could possible improve my arm.
I am robpi
Here is the thread that Joanie mentioned
http://ubpn.org/messageboard/thread ... read=12488
Kath
Welcome to the boards.
I have never had any surgery and think I am too old to attempt it now. Besides, no one ever offered me a surgery that could possible improve my arm.
I am robpi
Here is the thread that Joanie mentioned
http://ubpn.org/messageboard/thread ... read=12488
Kath
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
-
Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: Mod Quad and other corrective surgeries
Welcome Becky,
There is sooo much information on these Message Boards please don't overdue like I did when I 1st found UBPN and to my relief discovered I wasn't the only one who had this injury. I set my timer for 1 hour at a time so I wouldn't loose 3-4 hrs!
Also there is no dumb question here....I've learned so much here.
Hugs,
Carolyn J
LOBPI,age 67 & proud of it!
There is sooo much information on these Message Boards please don't overdue like I did when I 1st found UBPN and to my relief discovered I wasn't the only one who had this injury. I set my timer for 1 hour at a time so I wouldn't loose 3-4 hrs!
Also there is no dumb question here....I've learned so much here.
Hugs,
Carolyn J
LOBPI,age 67 & proud of it!
Carolyn J
Adult LOBPI
Adult LOBPI
Re: Mod Quad and other corrective surgeries
I am 38, LBPI and just had Mod Quad in January 2005. Every outcome is different but mine has been quite good - have gained tons more function. Prior to surgery could only lift my arm 45* out in front and am now at 112*. To the side was 25* and is now 90*. With my surgery 5 muscles and 2 tendons were relocated and the radial nerve (thumb) was unpinched. I was injured only at the C5 so although my arm is straight and have good hand function, I couldn't raise my arm. The surgery just freed up the arm because it was being bound by the other muscles thus locking it in place. I now have more sensation in my hand also. It was never numb or anything but if it were cold, I wasn't aware. I also now have a slight reaction to reflex tests whereas before there was no reaction.
How you deal with recovery and physical therapy also weighs heavy on what your outcome is. I do stretches 4 times a day and exercises 3 times a day still because I want to be aggressive witht this and get as much function as possible. I have been told that in about 10% of adults, they don't really see much of an improvement. I don't know if this is due to the damage or follow up work. There are a few doctors who do the surgery on adults, mine was Dr. Nath in Houston. Feel free to call me to talk further if you like. It was the best thing I have ever done, personally. Also be forwarned that I had several doctors tell me there were no options or this option is very dangerous, as have other BPI patients I have talked to. Thank goodness I didn't listen to any of them! Suzy (503) 880-4682
How you deal with recovery and physical therapy also weighs heavy on what your outcome is. I do stretches 4 times a day and exercises 3 times a day still because I want to be aggressive witht this and get as much function as possible. I have been told that in about 10% of adults, they don't really see much of an improvement. I don't know if this is due to the damage or follow up work. There are a few doctors who do the surgery on adults, mine was Dr. Nath in Houston. Feel free to call me to talk further if you like. It was the best thing I have ever done, personally. Also be forwarned that I had several doctors tell me there were no options or this option is very dangerous, as have other BPI patients I have talked to. Thank goodness I didn't listen to any of them! Suzy (503) 880-4682
Re: Mod Quad and other corrective surgeries
Hi Becky,
I am 32 and have right bpi from birth as well. I have never had any surgeries. Currently dealing with pain from overuse issues. Do you know what nerves were effected? I just recently found out all the details of my injury(birth records). Anyway, welcome to the boards. Hope you find what you are looking for?
Tracy
I am 32 and have right bpi from birth as well. I have never had any surgeries. Currently dealing with pain from overuse issues. Do you know what nerves were effected? I just recently found out all the details of my injury(birth records). Anyway, welcome to the boards. Hope you find what you are looking for?
Tracy
Re: Mod Quad and other corrective surgeries
Welcome to the Boards, Becky!
This Saturday, I am going to the Chicago BPI Picnic to meet with Dr. Nath. I am 50 ROBPI, and although I'm not sure I would want to go through with any surgery, I'm keeping an open mind. We have a very limited time with the Doctor, because of the volume of patients he will be seeing, but, to make the most of the time, I am taking a recent bone scan and other health information along. I'll keep you informed about what I find out!
I know you'll enjoy reading the Boards. There's so much information, and it's so comforting to know that we're not alone with the problems associated with BPI.
Keep on Posting!
Cyndi
This Saturday, I am going to the Chicago BPI Picnic to meet with Dr. Nath. I am 50 ROBPI, and although I'm not sure I would want to go through with any surgery, I'm keeping an open mind. We have a very limited time with the Doctor, because of the volume of patients he will be seeing, but, to make the most of the time, I am taking a recent bone scan and other health information along. I'll keep you informed about what I find out!
I know you'll enjoy reading the Boards. There's so much information, and it's so comforting to know that we're not alone with the problems associated with BPI.
Keep on Posting!
Cyndi
Re: Mod Quad and other corrective surgeries
Suzy,
I don't think at this point I would need surgery because I can do most things with my affected arm. I'm really glad to hear that people who have been injured since birth can sometimes gain functions they never had. Good luck!
Becky
I don't think at this point I would need surgery because I can do most things with my affected arm. I'm really glad to hear that people who have been injured since birth can sometimes gain functions they never had. Good luck!
Becky
-
rachelcasa
- Posts: 729
- Joined: Mon Apr 21, 2003 11:45 pm
Re: Mod Quad and other corrective surgeries
Hello Becky and welcome to the boards. Sorry my post is so late and I hope you get this information. I am 33 with LOBPI. I had surgery 2 years ago in Houston with Dr. Nath. I had the mod quad done. Since every case is different it's hard to say how you may come out. I took the chance and think it helped me out quite a bit. Remember, every case is different. Dr. Nath told me had I done it earlier the outcome may have even been better for me. I have more range of motion than I did before, I can now cross my fingers which I wasn't able to do and the pain has lessened slightly. Physical therapy is an important part of the recovery process. If you have any more questions e mail me and I will try to answer more.
-
admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: Mod Quad and other corrective surgeries
Hi
My daughter had the Mod Quad at TCH two years ago. She was 11 at the time . We are very happy we did it she gained alot of mobility. It was a long recover and she still in PT and OT once a week. I think that this will be life long. When she misses for a couple of weeks during the summer she tens to get stiff again. good luck to you. Check with the Dr. at TCH they travel to different states to see patients maybe they will be in your area.
My daughter had the Mod Quad at TCH two years ago. She was 11 at the time . We are very happy we did it she gained alot of mobility. It was a long recover and she still in PT and OT once a week. I think that this will be life long. When she misses for a couple of weeks during the summer she tens to get stiff again. good luck to you. Check with the Dr. at TCH they travel to different states to see patients maybe they will be in your area.