New to UBPN 25 yr old LBPI Female

[clo2481]

Hello everyone.I am a 25 yr old LBPI since birth from Memphis,TN. I was 9lbs 7 oz at my time of birth which was "unexpected by the delivering physician." My nerves were severely stretched resulting in what I have today wich is slight shoulder distocia,elbow contracture,and limited range of motion.I constantly remind myself to relax my left shoulder because it tends to tense up alot because of the overcompensation for the other weak muscles. I have known about UBPN for a while but have neglected to post.I know, shame on me I but I'm making myself do it tonight because you never know if your experience could maybe help someone else. I'm talking about limb lengthening. I know alot of us do not desire surgery but for those of you who do I felt that it was my duty as a LBPI to post my experience.First of all I empathize with many of you. I feel you. I was reading some of your stories and they brought tears to my eyes both happy and sad because your stories are my stories! Like many of you my parents encouraged me to do many things like tap, ballet,baton,pageants and all that good stuff.It was easier then when I had a child's innocent mind and no sense of feeling a little different. At about age 10 I became involved in track because a doctor suggested that it would be good excercise for my arm. By this time the shoulder distocia,limb length difference and the elbow contracture and set in.I actually turned out to be really good and by age 12 I recieved a phone call from the late Wilma Rudolph and I was being watched by high school track coaches. When it came time for me to enter high school I was placed on the varsity track and cross country team. It was great but sometimes I was so sad on the inside. I have been blessed with great friends and was never really bullied or teased but I have come across my fair share of ignorance and I have felt very frustrated at times. Like being told "You're so tall and pretty but you need to do something about your arm." One of the worst memories that I have is that of a guy on the track team running past me laughing and holding his arm like mine would naturally move when I ran.I also remember winning a race and leaving the track area and crowd immediately.I didn't stick around for the congrats because at that point I was sick of the questions,the stares, the blank looks,the sympathy,the people that would start a conversation with the intent of asking about my injury but then come up with something totally off the wall to say instead because they lost the courage to ask. But overall high school and college was great. I made some good friends and made some great memories. I know alot of the time I was probably the only one paying any attention to my arm and everyone else couldn't have cared less =) family and friends have always been very supportive they even forced me to audition for America's Next Top Model.Total strangers would walk up to me and ask if I thought about auditioning so I thought what the heck I'll just do it and see what happens. I was shocked out of my mind and in extreme disbelief when a producer actually called me. I was smiling uncontrolably and tears were in a constant stream from my eyes. He said that he and the casting directors would like to meet with me so of course I said yes.Well folks I guess I don't have to tell you that I didn't make it beyond that point. It was both exciting and humiliating but I'd rather be able to say that I tried it and made it further than most girls do than wonder what would have happened. I thank God that it's not any worse than it is and that it's not really noticeable unless I point it out. I know I have a purpose with this injury I'm just not sure what it is yet. As for my surgeries I have had limb lengthening and tendon lengthening done. The limb lengthening was done with Dr. Janet Conway and the tendon lengthening was done by Dr. Nath whom I see you are all pretty familiar with. I’m not sure if anyone has heard of Dr. Janet Conway but she is good let me tell ya! She specializes in bone deformities. She corrected the length and turned my arm at a more natural angle at the same time. All that’s left now is the mod quad and elbow contracture release. She put an external fixator on me with four pins in my arm and elbow that I wore for about four months. She surgically broke my left upper arm bone and the fixator slowly moved the break further apart everyday to allow room for the new bone. The fixator was not really painful just annoying. The only time that it hurt a little was the first few times that we turned the knobs that slowly pulled the break apart.You can’t sleep the same and it was a little annoying going back to the hospital for check -ups and being stopped at security check points in the airports in Memphis and Baltimore because of the fixator but it was well worth it. My arms are way closer in length now and once the contracture release and mod quad are done they will be even. I still can’t believe I actually grew my arm longer it’s crazy to me. Dr. Nath and Dr. Conway are both very good doctors! Dr. Conway’s hospital was featured on Oprah that’s how I learned of her. It was and still is ranked as the most experienced and advanced limb lengthening center in the world. I saw people that were getting their feet, ankles and toes corrected and getting their legs lengthened. I asked this guy I saw sitting in a room full of BPI's and asked what happened to his legs and his reply was "Nothing happened I just want to be taller." Yeah I know what you're thinking I had the same reaction... rediculous right? Anyway, after the surgery she called immediately each time after I paged her and she is very understanding and personable. She is located at The International Center For Limb Lengthening Rubin Institute For Advanced Orthpedics at Sinai Hospital of Baltimore. I know... long name huh? The address is Sinai Hospital of Baltimore 2401 West Belvedere Ave. Baltimore, MD 21215 (410)601-9573 You can read about her,the center and the other doctor’s studies and accomplishments at www.lifebridgehealth.org Go to the upper right, select Lifebridge Health Quick Links and click on International Center for Limb Lengthening. You can click on the doctors names at the bottom. Well thanks for letting me vent and I hope that this helps someone.I'll be happy to answer any questions if anyone has any. I guess I'm no longer guilty of reading and not posting=)I'm thankful for this site and wish everyone well. In the words of Maya Angelou "And Still I Rise"

God Bless!
Chloe'

[clover80]

Welcome Chloe!! It's nice to have someone else around my age on this site. Nothing against the "kids" or the "adults" but I never see postings from the mid 20 group.

It sounds like our arms have similar restrictions. Mine has never been obvious to anyone else. It's only when I point it out that it's noticeable.

Thanks for sharing your story.

Staci -26
SLC
ROBPI

[kamren]

Welcome!! It is great to "see" you here!!! It is amazing how much more can be done now than when I was younger. How far things come so quickly!

Kimberly, 38
Adult LOBPI

[Kath]

Welcome Chloe
Thanks you for posting and sharing your accomplishments with all of us.

I think your post will help people to see that being obpi for many years does not prevent you from making some changes and recovery, if that is what they want.

You post will encourage others to seek better medical information regarding our injury.

It has taken a long time to get you younger people to post.
We have others around in their mid twenties but I guess it's harder to open up at that age.


Kath (adult/robpi 66 )

[marieke]

Hi Chloe, nice to "meet" you!
Glad that you are able to share your story!
Keep posting!!!
Marieke (31 LOBPI)
http://nurse-to-be08.blogspot.com/

[Carolyn J]

WELCOME Chloe!!!
It is GREAT to hear and welcome someone in your 20's and your Story is sooo inspirating to me and I can bet to the Teens who lurk here too! I do wish you all would post more!! I mean the Teens around here too! I learn and can smile alot when I read your posts. You guys have more smartts than "some" of us adults, 'Ya know...
Keep coming Back, Y'hear!!

HUGS all around,
Carolyn J
LOBPI,68, WA (State)

[hope16_05]

Welcome Chloe! Its nice that you decided to come out of lurking and post I love seeing posts from others close to my age as well as the posts from those that are older than me. I get a taste of whats in the near future and the future in general.

I think its awesome that your still gettting recovery! THats just more hope for me, I am working in therapy all the time right now and am able to make some gains.

I hope you will continue to post!
Hugs,
Amy 19 years old ROBPI from MN

[Judy-T]

Welcome to the boards Chloe!!
I am so glad that you posted. It is such an unusual feeling when you know that you are not alone with this. We find out from each other so much information.
One example that I found out is that I was not the only one who had a big pen collection. I end up holding it in my right hand and do not realize it is there until I put it in the cup with the rest of them when I get home. Keep posting!
Judy(45 ROBPI)

[Carrie]

Hi, Chloe!
Nice to meet you, I'm glad you've gotten to a point where you are happy with your arm and it's function and looks. That guy who ran past you in the track meet? Later for that guy, you've showed guys like that ten times over with your guts and grit.
Rock on,
Carrie
Robpi (25)

[Kath]

Judy
Thanks to UBPN I no longer am a pen thief but I do take the remote for the TV and the hands free phone to the car sometimes... Now, I sit and laugh because I understand it is a bpi thing... I am not loosing it yet! LOL...

I think the best story I ever heard was from a teenager (at the time) Erica who use to put M&M's in her hand to save for the afternoon... nice soft and melted chocolate inside... LOL..

Kath (adult/robpi)