Hello UBP'ers. Some of you may know me from other posts. Our daughter Lily had twonerve transfers two weeks ago. She seems to be in pain some days. She did just cut her bottom teeth, so Im sure she had some pain there, but her teeth came through and she still seems to be in pain, tonight especially.
How has your childern reacted to their surgeries? Lily definately seems different after the surgery, but she changes from week to week also. It's hard to tell whats going on. I am also interested in how much pain older childern handle the injuries, is some form of pain normal for all BPI kids?
Thanks, Andy
Pain from Primary?
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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: Pain from Primary?
I can't say for sure about pain from primary, but I do know that as nerves reconnect there will be neuropathic pain/sensations that occur.
I had surgery at age 14 and I was in quite a bit of pain for the first 3-4 days (tendon transfer) and it lessened over the next 10 days or so.
As far as pain throughout my childhood/teens, I did not have pain unless I overdid something and ended up with muscle strain.
As an adult (I am 34 now) I do have joint pain in my obpi shoulder and have had muscle strain in mu upper traps on the right side from compensation. For me the pain is not there every day, but I do have days where I have overdone using my obpi or "good" side and have pain for 2-3 days straight.
We are all different of course, and some of us have had pain as teens/young adults.
I wish your daughter the best possible recovery!
I had surgery at age 14 and I was in quite a bit of pain for the first 3-4 days (tendon transfer) and it lessened over the next 10 days or so.
As far as pain throughout my childhood/teens, I did not have pain unless I overdid something and ended up with muscle strain.
As an adult (I am 34 now) I do have joint pain in my obpi shoulder and have had muscle strain in mu upper traps on the right side from compensation. For me the pain is not there every day, but I do have days where I have overdone using my obpi or "good" side and have pain for 2-3 days straight.
We are all different of course, and some of us have had pain as teens/young adults.
I wish your daughter the best possible recovery!
Re: Pain from Primary?
Thanks Marieke,
I had a suspiscion that as the "new" nerves grow into each other, she may be feeling either pain or sensation. On a good note if thats what shes feeling it means the nerves are connected and primary may be succesfull!
I had a suspiscion that as the "new" nerves grow into each other, she may be feeling either pain or sensation. On a good note if thats what shes feeling it means the nerves are connected and primary may be succesfull!
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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: Pain from Primary?
Yep , Marieke is right on as usual!!
I am sooooo happy for dear Lilly.
Please keep us updated so we all can cheer good milestones,Andy. YOU ROCK!!!
Hugs,
"Gramma" Carolyn J
LOBPI/71
I am sooooo happy for dear Lilly.
Please keep us updated so we all can cheer good milestones,Andy. YOU ROCK!!!Hugs,
"Gramma" Carolyn J
LOBPI/71
Carolyn J
Adult LOBPI
Adult LOBPI