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Veptr removal
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Amanda's mom
Posted 2007-10-04 1:04 AM (#29124 - in reply to #27339)
Subject: Re: Veptr removal


Member

Posts: 30
25
Hi Jacki,
Please don't ever feel guilty for writing about how good Siobhan is doing. I think it is great for others to have hope, you keep writing about the good! The Veptr is a great invention. Every child is so different. Thanks for writing! Hope your family is well!

Sarah:)

PS Shannon, thanks for the note. Hope Caroline is doing well.
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Amanda's mom
Posted 2007-10-04 1:04 AM (#29125 - in reply to #27339)
Subject: Re: Veptr removal


Member

Posts: 30
25
Hi Jacki,
Please don't ever feel guilty for writing about how good Siobhan is doing. I think it is great for others to have hope, you keep writing about the good! The Veptr is a great invention. Every child is so different. Thanks for writing! Hope your family is well!

Sarah:)

PS Shannon, thanks for the note. Hope Caroline is doing well.
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Zoes Nana
Posted 2007-10-04 10:00 AM (#29129 - in reply to #27339)
Subject: Re: Veptr removal



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Posts: 3970
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Location: Plymouth, Pennsylvania
JACKIE,
I AGREE WITH SARAH...
"DONT EVER FEEL QUILTY"....
WE NEED THE GOOD NEWS...
GOOD NEWS BRINGS INCOURAGEMENT AND STRENGTH, AS
DOES THE PRAYERS AND THOUGHTS WHEN THE KIDDO'S ARE
GOING THRU TUFFER TIMES...
BIG HUG TO SIOBHAN AND TO YOU...
GOD BLESS...
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Rinny
Posted 2010-01-06 11:25 PM (#38558 - in reply to #27339)
Subject: Re: Veptr removal



Member

Posts: 5

I've read through all these stories and they seem to all have been posted years ago so I don't really know if anyone will read this but I'll give it a try.
I was born with congenital scoliosis, a fused left rib cage, hemi-formed vertebrae and two curvatures: one in the thoracic and one lumbar. Unfortunately I do not really know the degree to which the curvatures were because my parents were the ones informed (I do know that the bottom was 75 degrees but am unsure of the top). I was 18 months old when the first veptr device was put in to help me to grow straighter and slightly correct the curvature. My left rib cage was also separated from one big mass into actual ribs.
I grew up knowing that I had to have surgeries but didn't really feel that different than other kids in my school. I was fortunate enough that unless I wore clothing that showed my scars, like a bathing suit or tank top, no one really knew. Over the years my veptr was lengthened as I grew and I had always favored my right side over my left. This caused more muscle to appear on my right arm and shoulder than my left. The only time I felt different was in middle school when looks are all that seem to matter and one girl who liked my boyfriend at the time decided to call me a hunch back. I really don't want sympathy by telling my story, because it really does get better.
As I mature I learn to treat my scars as a symbol of strength. I was soposed to be in a wheel chair with an oxygen tank and only one functioning lung. I survived because one brilliant doctor had an idea and my parents took a chance. I was the 5th child and the 1st girl to have the veptr put in.
I am now twenty years old, enrolled in college, active in soccer, and studying to be a nurse. Two weeks ago I had the veptr device taken out due to soreness and unusual pain, hoping that this will help. I can't promise that everything will be perfect, but I pray that your story is more inspiring than mine. The funny thing is when told by others that they don't know if they could have gone through what I did and still turn out as a strong individual I usually tell them that "if it’s all you know, you don't really think you're missing out". My sympathy is for the parents who watch their children in pain and can't kiss it to make it better. I hope to ease some of your worries about your children leading normal lives; I believe that if they can see how much they accomplished in their medical battles that they will be better than normal but extraordinary.
I hope that someone finds this and takes the time to read it I'll let you know how pregnancy and life turns out for me (having the veptr taken out and not having spinal fusion) when I get there.
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Timothy
Posted 2010-01-07 10:57 AM (#38559 - in reply to #27339)
Subject: Re: Veptr removal



Veteran

Posts: 138
10025
Location: Albuquerque, NM
Rinny,

Thank you so much for posting your story. We have only been on this journey since July of 07.

Rosa
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michelle wessollek
Posted 2010-01-07 11:09 AM (#38560 - in reply to #27339)
Subject: Re: Veptr removal



Extreme Veteran

Posts: 557
5002525
Location: casper wyoming
Thank you so much for your story,My son was 18 months old when he had his first implants was born all of his ribs fused on the right side and multibale hemmi vertabre He is going in for his 20th surgry at the end of this month.Do u know how many surgries u have had?
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anbthomas
Posted 2010-01-07 12:25 PM (#38562 - in reply to #27339)
Subject: RE: Veptr removal



Extreme Veteran

Posts: 343
10010010025
Location: Highlands Ranch, CO
Rinny,

Thanks for sharing your inspiring story. Good luck to you in school and I know you will be a wonderful nurse. Please keep us updated.

Take care,
Anne
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josiejean
Posted 2010-01-07 12:36 PM (#38565 - in reply to #38562)
Subject: Re: Veptr removal



Elite Veteran

Posts: 1076
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Location: Silver Lake, Kansas
FANTASTIC story Rinny!! thanks for sharing. our daughter will be 9 in March and got her first VEPTRs at 16 months old. is is finally getting the age where she is more and more conscious of her 'differences'. last summer she was at a friend's pool party. she wanted to leave early. come to find out it was cause the other girls were running around and jumping in the pool, etc and she couldn't keep up. it broke our heart. i love what you had to say and am going to print it off for Josie to read (and re-read and re-read). thanks again!
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Maggie's Mom
Posted 2010-01-07 2:42 PM (#38566 - in reply to #27339)
Subject: Re: Veptr removal



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Posts: 833
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Location: Chittenden County Vermont
Rinny
thank you. maggie got her veptr at 3 years old. keep us posted about your life.
susanne
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Jackie
Posted 2010-01-07 4:13 PM (#38568 - in reply to #38558)
Subject: Re: Veptr removal



Elite Veteran

Posts: 931
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Location: Vancouver, Canada
Thank you so much for posting - I will read your story to my little girl, who ADORES soccer and also wants to be a nurse when she grows up
Interesting, that I talked to her doc a year or two ago about leaving the rods in vs. fusion....
I'm so happy to hear how well it's going for you

Best wishes,
Jacki
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Zoes Nana
Posted 2010-01-07 6:52 PM (#38569 - in reply to #27339)
Subject: Re: Veptr removal



Expert

Posts: 3970
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Location: Plymouth, Pennsylvania
RINNY, THANK YOU SO MUCH SO SHARING THIS WITH US...ZOE IS GOING ON 10 YEARS WITH HER VEPTRS...
I NEEDED SO MUCH TO HEAR THIS TODAY...ZOE STARTED THE "MIDDLE SCHOOL" THIS FALL, AND HER LOVE OF SCHOOL IS GONE...SHE IS AS TUFF AS NAILS, AND NEVER SAYS A WORD ABOUT WHAT SHE HAS BEEN THRU...BUT FOR WHATEVER REASON, "MIDDLE SCHOOL" JUST SEEMS TO BE OVERWHELMING HER...

GOD BLESS YOU...
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Diane17
Posted 2010-01-08 8:03 PM (#38571 - in reply to #27339)
Subject: Re: Veptr removal



Elite Veteran

Posts: 971
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Location: nixa mo
Rinny thank you for your words of encouragement. It means so much to read about how well you're doing as we prepare for our next surgery. I do hope you'll post again I would love to know more about you.
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Wendy
Posted 2010-01-11 2:34 PM (#38580 - in reply to #38571)
Subject: Re: Veptr removal



Extreme Veteran

Posts: 599
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Location: Southern California
Thank you Rinny. Your words and hope and encouragement are so meaningful and helpful. My son also got his VEPTRS when he was 18 mos and is now 10.5... Please do let us know how you fair without your VEPTRS.

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Rinny
Posted 2010-01-13 1:47 AM (#38585 - in reply to #27339)
Subject: Re: Veptr removal



Member

Posts: 5

I am honestly surprised at all the responses to my post. Thank you all for the encouragement and good wishes.
I am unsure how many surgeries I’ve actually had. Too many to count, I even tried to ask my parents and they aren’t sure. It happened when ever I grew and I only amounted to 5 feet tall, so maybe less than someone who turns out to be taller

Josiejean: My heart goes out to your daughter and her story of the pool party. I am so glad that I could help.
I’ve read on some other posts about their children being stared at or asked probing questions about their conditions. I was lucky to have a “hide-able” curve, because my two curves slightly complemented each other. I looked normal unless you were really looking closely. I also have a proud father who would tell my story to anyone who would listen. I sometimes got tired of hearing my story over and over again and then even tricked some of my best friends into not knowing anything about me being ‘different’. The one obvious factor was my height, but I have to say that when you get to say “I’m short because I was born with a birth defect and have had multiple surgeries to save my life, sorry I didn’t turn out the same height as you”, the person usually feels really bad and it tends to be forgotten that you are short. Although I may have a bit of short syndrome: (big personality and sometimes a big mouth).

Unfortunately because all of us with veptrs do not have identical conditions I cannot relate to everyone. I am truly lucky for all I’ve been blessed with. I am hoping to connect with some of the other patients who have gone through this process. I’m curious of my future and what’s to come. If there is anyone who is around my age (20) or any age and could swap stories that’d be great. It’d be nice to connect with others who have had similar experiences; sometimes it’s hard for others to relate when they haven’t had to grow up as fast.

Best of wishes to you all,
Rinny

"All that I'm after is a life full of laughter" - Daughtry
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Zoes Nana
Posted 2010-01-13 6:00 AM (#38586 - in reply to #27339)
Subject: Re: Veptr removal



Expert

Posts: 3970
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Location: Plymouth, Pennsylvania
RINNY, IT IS REALLY WONDERFUL TO HAVE YOUR INPUT AND EXPERIENCE...IT MEANS MORE THAN WE CAN SAY...
I WOULD LIKE TO INVITE YOU TO SOME OTHER "SUPPORT FORUMS"...MANY OF HERE BELONG TO "VATER/VACTERL SUPPORT BOARDS"...I DO NOT KNOW WHAT YOU DX IS, AND THAT DOES NOT REALLY MATTER...THERE ARE MANY YOUNG PEOPLE CLOSE TO YOU AGE, THAT I THINK YOU MIGHT ENJOY CONNECTING WITH...
YOU CAN CONTACT ME ANYTIME AT ......JOBEY44@AOL.COM'
THANKS AGAIN FOR SHARING WITH US...

AND P.S. YOUR DAD SOUNDS ALOT LIKE ME...LOL...I DON'T WAIT TO LET PEOPLE ASK QUESTIONS...I AM SO PROUD OF ZOE, AND HER ABILITY TO BE STRONG, THAT I WANT TO SHARE HER, "WITH THE WORLD"...
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Rachel
Posted 2010-02-03 12:29 AM (#38665 - in reply to #27339)
Subject: Re: Veptr removal



Regular

Posts: 65
2525
Location: Utah
Thank you so much for sharing your story.
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buggabear4494
Posted 2010-10-22 11:03 PM (#40108 - in reply to #27339)
Subject: Re: Veptr removal



Regular

Posts: 91
252525
Location: florida
rinny,
Thank you s much for sharing, i often look for older people (like not 2) who have gone through the struggles that my son is going through or will be going through as parents we often find our information through other parents who are going through the same trials as one another we seldom get to hear the point of veiws from the kids (not that u are a kid, im only 3 yrs older then u myself, but u know what i mean we are on opposite sides of the fense when it comes to our roles with veptr) and how they felt / feel about having to be put through all this as children! I tend to cry alot when i think about how much my son goes through and when i see him happy (which is often) and i tend to re think my decisions! Logan is 2 years old with VATERS! from the stories i hear about alot of VATERS babies Logan was really lucky, he has Severe scoliosis with Hemi vertebrae he has missing and fused ribs and he has urinary reflux and when he was in my belly he had single umbilical artery. Logan also had a stenosis in his nose which made it hard for him to breath out of his nose! after his surgery for his stenosis the Dr's got together and had a sit down meeting with me and told me that they thought that in the best interest of logan he should have a trach placed, that even though Logan could now breath from his nose a trach would keep him out of the hospital where if he got sick it could push him over the edge and back in the hospital, and the stenosis could always return. so we decided to go for it! i mean these guys had medical degrees and more knowledge then me right! I know regret doing the surgery for the most part! i mean its not really a bad thing and its my security blanket for the future VEPTR surgery but that darn Trach has been his leading cause of his hospital stays which is like a week to two weeks every month minus 3 or 4 months in 2 years! anyway i jut get upset at how much less he gets to do then other children! i know he doesnt realize it now but i do and i know he will! We found a Dr that is almost 2 hours away that is going to do the VEPTR surgery for Logan as soon as the hospital approves the program, his name is Dr. Raymond Woo and he seemed like an amazing Dr, i got more info out of him in one visit then i have in all the the visits we have had with logans Dr in our home town! So Rinny in all my babbling what i was trying to say is it is very refreshing to hear the positives from someone on the oposite side of the fense letting us know we are doing good by our children and it gives us (ME) hope that my son will have as bright a future as you! so THANK YOU FROM THE BOTTOM ON MY HEART!
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Zoes Nana
Posted 2010-10-23 5:44 PM (#40112 - in reply to #27339)
Subject: Re: Veptr removal



Expert

Posts: 3970
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Location: Plymouth, Pennsylvania
HEY LOGANS MOM...GLAD YOU FOUND US....
LOOKING FORWARD TO HEARING MORE FROM YOU...GOD BLESS...
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buggabear4494
Posted 2010-10-25 11:15 PM (#40129 - in reply to #27339)
Subject: Re: Veptr removal



Regular

Posts: 91
252525
Location: florida
thank you for the welcome zoe's nana i loved her web site! wish i new how to do one myself! HEY your street is my last name! LOL! well tomorrow we will have a surgery date! the hospital approved the program!
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Rinny
Posted 2010-10-26 4:18 PM (#40130 - in reply to #27339)
Subject: Re: Veptr removal



Member

Posts: 5

Hey everyone - Just had a thought that might be interesting.

As you may know I am a VEPTR kid and I'll be 21 years old in less than 2 weeks
I think that one of the hardest parts about this struggle was never really understanding what your medical diagnosis was or what that even meant. As I started taking nursing classes, such as anatomy, I began to have so many questions about my condition and even became aware about how little I knew. As a child I was told that my back wasn't straight and my VEPTR would help me grow straight. I was told about all the struggle with the insurance company, costs, and hard times my parents went through. I was told that I was lucky and that my parents were grateful for how great of a kid I turned out to be. I remember having surgery, being sore, and not having a straight spine; but not much else. I got to the point where I felt like I truly didn't know what my diagnosis was or what it even meant. I always had just told others that I had scoliosis, but there was just so much more there that distinguished my condition from scoliosis. I didn't really understand how others could have scoliosis and not have to have all of the surgeries I did. As I began to learn more about my condition more things began to make sense - I think one of the best parts was seeing a binder of medical events, newspaper clippings and x-rays my parents had saved over the years.
I think everyone just assumed that I knew what was going on, but I wish that I had asked earlier. So I guess what I'm trying to say is not to explain in great detail to a 5year-old their condition, but if your child asks or maybe give them a binder with details of what happened to them in the beginning of their life; the part they don't remember.
Hope this is helpful

--"you can write but you can't edit" --R. Spektor
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Zoes Nana
Posted 2010-10-26 7:14 PM (#40131 - in reply to #40130)
Subject: Re: Veptr removal



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Location: Plymouth, Pennsylvania
THANK YOU SO FOR SHARING YOUR EXPERIENCE WITH US...IT TRULY MEAN SO MUCH...
WE HAVE KEPT SO WHAT A LOG FOR ZOE, AND ONLY WISH, WE HAD KEPT MORE....I CAN TELL YOU THIS REGARDING ZOE...
SHE IS NOW 12 GOING SOON ON 13...AND SHE NEVER COMPLAINS...BUT SHE ALSO SHOWS NOT MUCH OF AN INTEREST IN WHAT SHE IS AND HAS GONE THRU....LIKE YOU MENTION....IT WILL AT SOME TIME IN HER LIFE BE IMPORTANT TO HER...AND HAVING THE INFORMATION TO PROVIDE WITH IS A GREAT SUGGESTION...
GOD BLESS.....AND KEEP IN TOUCH...
AND AN EARLY...'HAPPY BIRTHDAY'....WOW!! 21...ENJOY....
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elisa
Posted 2011-03-03 2:43 PM (#40857 - in reply to #27339)
Subject: Re: Veptr removal


New User

Posts: 2

hello,i´d like to keep contact with someone who son has been operated due to scoliosis using veptr II technique.My daughter is nine and has been operated 13 times using veptr but unfortunately she has broken twice the implants so dr.ventura from barcelona spain decided to implant veptr II.We are worried about a new rupture of the implant.Sorry for my english.
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josiejean
Posted 2011-03-03 3:06 PM (#40858 - in reply to #27339)
Subject: Re: Veptr removal



Elite Veteran

Posts: 1076
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Location: Silver Lake, Kansas
Hello Elisa! i feel like a stranger here since i seldom get on! i think the VEPTR II is the "lower profile" device that doesn't 'stick out' as much under the skin. they tried to put those in at Josie's last expansion surgery. Unfortunately our doc went through all the different sizes/angles or whater and could find one that work well for Josie. he even tried some other VEPTR-like rods but nothing worked. so he had to put the original type back in.

we were a little disappointed simply because of "appearance". Josie has really slimmed down so the rods are very visible on her back. when she first started the VEPTR program when she was just a year old (and for a couple years after) she had enough fat on her back you couldn't see the rods.

i keep losing count, but i think Josie has had 12 VEPTR operations herself. her next one should be around late May. I'm glad you found the site and i'm confident there are some people on the website who can answer your question!!!

Edited by josiejean 2011-03-03 3:08 PM
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Zoes Nana
Posted 2011-03-04 6:56 AM (#40862 - in reply to #27339)
Subject: Re: Veptr removal



Expert

Posts: 3970
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Location: Plymouth, Pennsylvania
HI ELISA AND WELCOME...
SORRY TO HEAR ABOUT THE PROBLEMS....BUT ENCOURGAED TO HEAR THEY WILL BE USING THE
'VEPTR 11'..I HAVE HEARD GOOD THINGS....AND WE WILL BE PRAYING THIS IS THE ANSWER FOR ELISA...
KJEEP US POSTED...WE WOULD LOVE HEARING MORE FROM YOU...
GOD BLESS...
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Dennis.dm
Posted 2011-03-13 11:14 PM (#40913 - in reply to #38558)
Subject: Re: Veptr removal


New User

Posts: 1

Thank you for your story. I am reading through all the threads to educate myself about this. My daughter is 7 and scheduled for a growing rod surgery at the end of the month. I am still hoping for a miracle or a sign if i should or not do it..
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