Christinas surgery was around 9 weeks ago and I was wondering when others who have had primary nerve grafts saw any signs of a recovery happening? I know it takes time to take effect but should we have seen some sort of improvement yet? The Dr's say not to worry but that isnt helping me any.
Do you think infants with this feel pain? Recently Christina has been waaling like she is in pain...and she wont eat solid foods either...Im wondering if this is her maybe getting feeling in her arm and it freaking her out....
I wish there was a BPI genie that could jump out and answer these questions...
Post surgery timeline
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mamaofsix
- Posts: 214
- Joined: Sun May 11, 2008 5:20 pm
- Injury Description, Date, extent, surgical intervention etc: Second son, Cameron, left obstetric brachial plexus injury in 2005.
Primary never graft surgery at 3 months old at St. Louis Children's Hospital
and several rounds of Botox injections.
Re: Post surgery timeline
If you find that genie, let me know!
My son had primary surgery when he was just shy of 3 months old and he is now 6 1/2 months old. Our doc told us not to expect any new movement for about 4 months after surgery and they will continue to improve for 3 years after. So have improved more after 3 years too. We are beginning to see movement now and more muscle tone, which is great. Waiting is a hard thing. My son is doing so much, sitting up, eating, cooing, all of that great stuff and I just realized recently that I have been so focused on his arm, movement, etc. that I feel as if I have not been fully enjoying his milestone moments. So, to give some advice as you are "waiting"...enjoy the smiles!
My son had primary surgery when he was just shy of 3 months old and he is now 6 1/2 months old. Our doc told us not to expect any new movement for about 4 months after surgery and they will continue to improve for 3 years after. So have improved more after 3 years too. We are beginning to see movement now and more muscle tone, which is great. Waiting is a hard thing. My son is doing so much, sitting up, eating, cooing, all of that great stuff and I just realized recently that I have been so focused on his arm, movement, etc. that I feel as if I have not been fully enjoying his milestone moments. So, to give some advice as you are "waiting"...enjoy the smiles!
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mamaofsix
- Posts: 214
- Joined: Sun May 11, 2008 5:20 pm
- Injury Description, Date, extent, surgical intervention etc: Second son, Cameron, left obstetric brachial plexus injury in 2005.
Primary never graft surgery at 3 months old at St. Louis Children's Hospital
and several rounds of Botox injections.
Re: Post surgery timeline
Preventbpi,
Also, Maybe Christina is teething? That would definitely make a baby wail and not want to eat.
Also, Maybe Christina is teething? That would definitely make a baby wail and not want to eat.
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F-Litz
- Posts: 970
- Joined: Fri May 26, 2006 6:53 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
- Location: Ambler, PA
Re: Post surgery timeline
Nerves grow in approximately 1" a month - so if you measure from the neck to the biceps - well that's 4 to 6 months worth of growth or more...
Dr. Pape taught us about Tinel's Line... this is the area where the nerve has grown up to...you can tell where this is by touching the arm - it is a painful area so the baby might not be happy about you touching there... check it out and see what you find...
Waiting from primary surgery is the longest and hardest wait we ever had. It was excruciating. However we did see change until she was about 5 years old from primary. (meaning that we saw improvements continue to occur and then that was it, as though a line was drawn)
-francine
Dr. Pape taught us about Tinel's Line... this is the area where the nerve has grown up to...you can tell where this is by touching the arm - it is a painful area so the baby might not be happy about you touching there... check it out and see what you find...
Waiting from primary surgery is the longest and hardest wait we ever had. It was excruciating. However we did see change until she was about 5 years old from primary. (meaning that we saw improvements continue to occur and then that was it, as though a line was drawn)
-francine
Re: Post surgery timeline
We didn't see any gain from primary until 13 months post op. Surgery was in 2005.
Re: Post surgery timeline
We didn't see any improvement whatsoever until around 4 months post primary. (It was a pretty steady gain past that point.)
Like Francine said, this waiting period is almost unbearable. Hang in there. It really does get better.
Like Francine said, this waiting period is almost unbearable. Hang in there. It really does get better.
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preventbpi
- Posts: 11
- Joined: Wed Jun 18, 2008 11:59 am
Re: Post surgery timeline
Thank you for the hope and advice...
she is teething too so thats probably why she is that way.
I really hate the fact that when something is wrong with her I always think its related to her arm...
she is teething too so thats probably why she is that way.
I really hate the fact that when something is wrong with her I always think its related to her arm...
Re: Post surgery timeline
I'm not sure that feeling ever goes away! LOL! But, I've learned that parents of children without challenges freak out, too! My girlfriend and I say we are on the city council for "Whyareyoualwaysfreakingoutyourkidisfineville". 
Hyland's teething tablets are the bomb! Good luck. Please tell us when you see those first shoulder flickers. I'll remember that moment for the rest of my life. Much, much better than her first word or her first step. "She moved her arm!" It was a great moment!
It's coming!
Hyland's teething tablets are the bomb! Good luck. Please tell us when you see those first shoulder flickers. I'll remember that moment for the rest of my life. Much, much better than her first word or her first step. "She moved her arm!" It was a great moment!
It's coming!