Had an appt at Shriners today

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hope16_05
Posts: 1670
Joined: Tue Jul 01, 2003 11:33 am
Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
Location: Minnesota
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Had an appt at Shriners today

Post by hope16_05 »

WOW is about all that comes to mind!

I had my appt at shriners in MN today to see if I had any options left and see about a sore spot on my middle finger from my last surgery. So here is the story:

I love my doctor he is so awesome! After getting an x-ray of my hand I went back to my exam room where my mom was wating for me. Outside the exam room door I could hear the nurse telling Dr. Moran this patient has a brachial plexus injury... and I hear him say Oh I know here and in he came. He comes in and says, I was thinking about you the other day and had a light bulb moment... Here is what we can do for your shoulder. I am taken aback with excitement at this point, I thought I was going to hear that I didnt have any options left, what I got to hear was so the opposite! He said what he could do is take part of the pectoralis major since mine is pretty strong and reroute it under my arm through a new incision in my armpit then tack it onto my scapula to stabalize it. A more stable scapula would mean way less pain, or no pain at all in my back, and it would be easier to raise my arm up! WAHOO!

Then I asked what we can do to get pronation, hae originaly said I had two options, one was to reroute the biceps and the other a forearm osteotomy (which he didnt want to do on me). Then I asked him if he rerouted the biceps would I still be able to supinate, he told me probably not. So I asked if I had any other options and he thought about it for a while and said we could take a tendon from the finger flexors and reroute it to the pronator teres giving me pronation and not losing supination! Awesome!

Then from my last surgery I have something poky in my middle finger that hurts me sometimes and I asked if I could get that removed and he said he could do that for me.

So it was a very eventful day and I will be having surgery again very soon! I need to call tomorrow and get every thing scheduled because I am not going to be seen at shriners any more. I am going to start seeing Dr. Moran at Mayo and he will do my surgery there. This is a huge change for me, but it is at the right time, in less than a year I would have to switch from shriners to Mayo anyway As I will be 21 next February.

This is a lot to chew at one time but I am very excited, and if every thing goes right I should end up with new function and way less pain! Oh and only 2 new scars, for the other stuff he can use my old scars, one in my armpit and one on my forearm. There is a slim possibility of a third scar on my upper thigh if they need more tendon for the scapula part of the surgery.
All three surgeries will be done at one time and from the way it sounds I will have a splint, not the same but similar to one that a baby gets after primary surgery.
I will let you know when I get every thing scheduled but the surgery will hopefully be this May as soon as I get done with classes!

Hugs to all!
Amy 20 years old ROBPI from MN
Amy 28 years old ROBPI from MN
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njbirk
Posts: 1806
Joined: Wed Oct 24, 2001 10:09 pm

Re: Had an appt at Shriners today

Post by njbirk »

Amy,

That is so awesome. New movement and a lessening of pain. Sounds like a win/win to me.
Rejoicing in your good news.

Nancy
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kissygoose

Re: Had an appt at Shriners today

Post by kissygoose »

That's so great. I'mso excited for you. Sounds like he's a great dr.
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Mare
Posts: 708
Joined: Mon Mar 10, 2003 5:30 pm

Re: Had an appt at Shriners today

Post by Mare »

AMY
I can't tell you how happy I am for you, Mare
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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:
Contact Carolyn J

Re: Had an appt at Shriners today

Post by Carolyn J »

AMY,
HOOOORAY!!! I too, am rejoicing for you! "Awesome" now seems to tame of a word for YOU, girl!...We will have to find a new word just for you!! ;)

Did I say, I'm HAPPY FOR YOU??!! ;)

HUGS all around & hello to your Mom,
Carolyn J

ps... I hope tyou post on the "General Board" too as this is sooo inspiring for MOm's(haven't checked yet..)
Carolyn J
Adult LOBPI
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User avatar
hope16_05
Posts: 1670
Joined: Tue Jul 01, 2003 11:33 am
Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
Location: Minnesota
Contact:
Contact hope16_05

Re: Had an appt at Shriners today

Post by hope16_05 »

Nancy, Christina, Mare, and Carolyn,
Thanks for the support! You all awesome!

I almost cant wait, my summer will be interrupted but no more pain sounds like a fare trade or more movement, that would be awesome! Maybe I will get up that rock wall yet!

Thanks again!
Amy
Amy 28 years old ROBPI from MN
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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:
Contact Carolyn J

Re: Had an appt at Shriners today

Post by Carolyn J »

AMY,....I am betting that you WILL climb that Rock Wall at Camp!!! :)

HUGS all around,
Carolyn J ;)
Carolyn J
Adult LOBPI
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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: Had an appt at Shriners today

Post by Kath »

Amy
It looks like you will make it up the wall!
I am so happy for you and can't wait to see you at Camp and hopefully by then you will be pain free.

Kath robpi/adult
Kath robpi/adult

Kathleen Mallozzi
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rachelcasa
Posts: 729
Joined: Mon Apr 21, 2003 11:45 pm

Re: Had an appt at Shriners today

Post by rachelcasa »

Amy

That is so exciting I sure do wish you the best and will say a prayer for you. It is so exciting when you hear great news I am sure you are on cloud nine.

How are your classes going? I have been so extremely busy with work, the kids' extra-curricular activities I hardly have time to breath. Although I keep wondering if I'm running so much why I don't weight a lot less. Ha ha ha...

I'm so excited for you. That is great news. Best of luck to you Amy!!

*HUGS*
Rachel
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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:
Contact Carolyn J

Re: Had an appt at Shriners today

Post by Carolyn J »

I love ya ,Rachel....Please s-l-o-w d-o-w-n!!

HUGS HEAL! :)
Carolyn J
Carolyn J
Adult LOBPI
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