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| Hi, my daughter is 17 and having her Veptr removed and will be having a spinal fusion done at that time. She has outgrown her device and the surgeon says that instead of putting in a bigger device they would like to just do a spinal fusion on her. The surgeon just did not sound overly excited about any of this and that is a little worrisome. I just need a little reassurance I guess and would feel more comfortable hearing from someone who has had this done. If you know of a website that talks of removal, etc., that would be great also. Most of the sites I have been on only talk about insertion of the device, not much about removal since the device is not that old.
Thanks so much. |
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Regular
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Location: Dallas, Tx | My name is Courtney and I am 17 as well. I was going to have mine removed and have a spinal fusion, but we talked to my other doctor and he thought since I wasn't going to grow anymore then I shouldn't need a spinal fusion. He said that I could just leave the veptr device in my back and that it should hold. I am sorry I am not able to help you very much with this topic but I thought I would introduce myself. |
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Location: Utah | Welcome Amanda's mom. Thanks for posting. I'm very interested in this... My Braydon is 12 yrs old and will be facing the end of his VEPTR journey in a few years. We were told in the beginning that at the end, they would remove the VEPTR devices and do a final "stabilization" fusion. Having already done a fusion surgery and hearing stories about other scoliosis patients, I'm not sure that's a good idea for all kids. I hope (and pray) they come up with a better final "plan". Courtney - I'm very interested in how you are doing... are your VEPTRs causing any long term problems? I know it isn't "long term" as far as the medical world goes, but still. I've always wondered WHY can't they leave the rods in place for long term? Why are they temporary? If they remove a chestwall device and do a scoliosis fusion surgery, what guarantees that the chest won't start collapsing without the VEPTR support? So many questions. I know the answers are all different for each child. Can't compare them because they are unique. I just hope there is something they come up with that will be a good plan for each individual. Good luck with Amanda's next step.
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Regular
Posts: 86
Location: Dallas, Tx | Carmell,
I am doing very well. I am on my high school drill team and am the president of the social officers. I am also a certified veterinary assistant level 1 and am working to level 2 this coming school year. As far as I know they are just going to leave the rods in, they have not caused me any problems so far. Any more questions or you want to contact me anymore my email address is [email protected].
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Elite Veteran
Posts: 1127
Location: Vancouver, Canada | Sounds like a good time to have another chat with that surgeon and ask why can't another VEPTR be put in and run for as long as possible before the irreversible and difficult step of fusion. |
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Veteran
Posts: 116
Location: Bellevue, Nebraska | We have just started with our first implant. We are already talking about spinal fustion in years to come. Our doctor is looking at doing her spinal fusion when she is 12, if we can wait that long. Our VEPTR was an answer to prayer. Do as much research as you can. I am not sure of any specific website. Before our VEPTR, during our pre-labs, one doctor was very concerned about the risks we were putting our daughter through. I went home and cried for 2 days, second guessing our decision. Good luck and keep the faith! |
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| Thanks to all who have responded. It is a very hard thing to decide what to do regarding having the veptr removed. During Amanda's last 2 expansions she has had complications and the doctor did not feel that she could really continue to go through many more expansions (anesthesia/surgery) and that is why he suggested removing it and doing a fusion. Her little body is a mess, her pelvis is tipped and it causes bad circulation in one leg and foot as well as the breathing difficulties. She is in so much pain. She has not had an expansion for over a year (as the device is fully expanded) and is really being pulled to the side. When I took her in to see the doctor he was not at all excited about taking the device out but not excited about keeping it in. I am at a loss. We will say our prayers and hopefuly by doing a little more research we will come to a conclusion that is best for our sweet Amanda! Thanks again for being there, it makes me feel like I am not alone in all of this! |
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Posts: 3243
Location: Utah | Sarah - I didn't realize this was YOU and our Amanda! I will email you. I hope they can figure something out for her. I can only imagine how hard it is to see her in pain. Lots of hugs and prayers for you guys. I'll email soon.
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Elite Veteran
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Location: Vancouver, Canada | We're a ways off making any kind of decision too - Siobhan just turned 8, but I've been wondering the same kind of thing.
The thought of fusion, and it's permanency is definitely a concern. I like the idea of leaving VEPTR in. They do a remarkable job holding Siobhan straight, and with the last surgery relocating them, she's doing wonderfully.....
Something to talk to the doc's about......
Jacki |
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Elite Veteran
Posts: 952
Location: SanAntonio TX(formerly Hammond Indiana) | I am sorry to hear all of this, and I know I have my own fears and concersn with expansions,and problems and complications, and fusions....
I asked DR. Campbell a couple weeks ago, if they would ever consider doing expansions under local with conscious sedation and restraints for kids who are so compromised under genral anesthesia( all our kids are, I hope you know what I mean)
He said "interesting..something to think about...I'll get back to you"
To me, it IS something to think about!
I mean, my roommate had ankle surgery with local, and drove herself home.
Brianna ahd local with lots of valium to have her tendon retightened in ehr thum,b and wrist.
stuff like that, so it isnt a far stretch to think they may consider this for expansions on some of our kids.
just food for thought |
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Elite Veteran
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Location: Silver Lake, Kansas | We too, like Carmell are hopeful there will be other "options" when it comes time for Josie to be done. we are probably somewhere in the neighborhood of 8-10 years left. i'm pleased with our current doc is quite innovative in his thinking and approach. he has told us about testing to make a self adjusting device - no surgery needed (after implant), they are also making "lower profile" VEPTR devices that won't stick out as much... lots of stuff - so i know he'll be very conscious of looking for the best options for our kids. |
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| Has anyone heard how pregnancy will affect girls who have had VEPTR? I wouldn't think anyone w/ VEPTR would be old enough to have children yet, but I was wondering if any of the docs had made any statements regarding this. Since your body grows and changes during pregnancy, could the chest wall or spine worsen if fusion did not occur and the VEPTR was removed? I know this is a concern with patients who have idiopathic scoliosis so I would assume this would be the case with our children.
I will keep Amanda in my prayers and I hope that you get the information & reassurance that you are looking for. |
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Extreme Veteran
Posts: 308
| all questions that i, too, wonder about.
hopefully, we will all share our various answers to find the right answer for each of our wonderful VEPTR kids:) -Rhonda |
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Member
Posts: 30
| I just wanted to drop you a quick note and let you all know that Amanda had her VEPTR removed. It has been about a month now. They removed her Veptr and did a spinal fusion. Wow, I am so glad that is behind us. The procedure was almost 9 hours long. She had some complications in surgery but she pulled through and is doing very well now. The Veptr was a blessing for her and gave her the time to grow before being fused. I am glad that we made the decision to have it removed when we did for Amanda though I do not think I have ever been more scared in all my life, mainly not knowing if she would be able to survive such a long procedure. She definitely showed us all how strong she is. She is going a little bit crazy having to sit around the house and heal, it definitely is a long process but it was worth it. Thanks again to all who were so caring.
Much love, Sarah (Amanda's mom) |
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Member
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| I just wanted to drop you a quick note and let you all know that Amanda had her VEPTR removed. It has been about a month now. They removed her Veptr and did a spinal fusion. Wow, I am so glad that is behind us. The procedure was almost 9 hours long. She had some complications in surgery but she pulled through and is doing very well now. The Veptr was a blessing for her and gave her the time to grow before being fused. I am glad that we made the decision to have it removed when we did for Amanda though I do not think I have ever been more scared in all my life, mainly not knowing if she would be able to survive such a long procedure. She definitely showed us all how strong she is. She is going a little bit crazy having to sit around the house and heal, it definitely is a long process but it was worth it. Thanks again to all who were so caring.
Much love, Sarah (Amanda's mom) |
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Veteran
Posts: 213
Location: Abingdon, VA | I'm so glad to hear that Amanda is doing well! |
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Location: Plymouth, Pennsylvania | DEAR SARAH,
THANK YOU SO MUCH FOR UPDATING US...
AND I AM SO THRILLED TO HEAR THAT THIS IS OVER FOR AMANDA,
AND SHE IS DOING WELL...
ONE OF THE GREAT WORRIES, AND I THINK I SPEAK FOR MOST OF "THE CLASS",
IS THE FINALITY OF ALL OF THIS, AND THE "SPINAL FUSIONS"...
I AM GLAD BEYOND WORDS THE SURGERY IS OVER, AND BIG HUG TO BOTH AMANDA, AND TO YOU...
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Veteran
Posts: 150
Location: South Carolina | Continued well wishes!! |
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Posts: 3243
Location: Utah | Hi Sarah and Amanda! I'm very happy to hear she's doing well and on her way to a great recovery from fusion surgery. I'm sure you are relieved to have that part behind you. Scary isn't the right word - horrifying, i'm sure. We'll be in SLC this Saturday for the Rubber Ducky Derby - are you guys going? Maybe Amanda isn't up to playing yet.
Braydon is having leg surgery on Sept. 4, so we'll be at PCMC then for a day or two. Wish we could say HI once in a while. Take care! |
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Expert
Posts: 1582
Location: Greenbush, Minnesota | Hi Sarah ~
Great news.....I'm so glad to hear that Amanda's surgery went well. I'm sure it is difficult for her to be sitting around but hopefully she'll be on the go soon!
Janita |
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Member
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| Hi,
Just a quick update, Amanda just had her JP drains taken out from the surgery as well as her sutures. Yes, we had those at home for a month. Crazy! They did a culture on the drains after they were removed and they grew out 4+ staph. It is crazy. Never ending surprises but we will stay optimistic! We are home and not in the hospital so that is something to be thankful for!  Thanks for all your love and support, Amanda thanks you too! She is doing very well. We went to Primary Children's Hospital yesterday for a check-up and she will need to get a new seat for her wheelchair because her position (the way she sits) is so different now that she has been fused. Her pelvis is level now, something the vepter could not do. Many hugs to all those sweeties out there with a Veptr! Lets keep in touch!
Sarah and Amanda |
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Elite Veteran
Posts: 931
Location: Vancouver, Canada | I don't know how I missed this 
I'm glad to hear that Amanda is doing well after such a big surgery.
Please remind me again of how old she was, and how long she had her VEPTR's?
Sending lots of well wishes to a brave young lady.
Jacki |
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Member
Posts: 30
| Jacki,
No worries. I don't know about you but life is pretty crazy for us. Amanda had her Veptr placed about 4 years ago, she was about 13. The Veptr had not been approved yet when she recieved it. We were part of the study here in SLC, Utah. She was fully expanded with this device about 1-1/2 years ago. She really did not do very well with the expansions/anesthesia. She has had over 30 major surgeries in her 17 years of life and I think her body has just about had it with regards to surgeries and anesthesia. Dr. Smith felt it would be better to just take it out rather than put in a bigger device and have to put her out every few months for the expansions. So this summer they took it out, it was really starting to protrude and it was really starting to be uncomfortable to her. She was just being pulled to the side more and more so we had it taken out. She is doing really well now. She is just happy to have the device out, it bothered her that she could feel back there and feel it through a thin layer of skin. Thanks so much for your kindness. Hope your little Siobhan is doing well.
Sarah |
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Extreme Veteran
Posts: 424
| Sarah,
I'm so gald to hear that Amanda's fusion went so well. I do hope the staph is under control and she's is feeling better and in a new chair soon!
Take care,
Shannon
Caroline's mom
GA |
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Elite Veteran
Posts: 931
Location: Vancouver, Canada | Hi Sarah
Thank you for taking the time to answer my questions - I love this site  LOL
I'm always interested in how the "older" kids are doing with VEPTR/ removal/ fusion etc.
Your Amanda sounds like a very courageous young lady - You must be so proud of her.
We were lucky enough to have Dr Smith come to Shriners, SLC for Siobhan's implant surgery, and first expansion.
Siobhan is doing fabulously - Sometimes I feel "guilty" writing about how well she is doing with her VEPTR's, after reading of what some of the kids have to go through.
Continued well wishes to your whole family.
Jacki |
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Member
Posts: 30
| 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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Member
Posts: 30
| 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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Posts: 3970
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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Member
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| 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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Veteran
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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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Extreme Veteran
Posts: 557
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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Extreme Veteran
Posts: 343
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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Elite Veteran
Posts: 1076
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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Elite Veteran
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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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Elite Veteran
Posts: 931
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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Expert
Posts: 3970
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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Elite Veteran
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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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Extreme Veteran
Posts: 599
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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| 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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Expert
Posts: 3970
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 [email protected]'
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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Location: Utah | Thank you so much for sharing your story. |
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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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Location: Plymouth, Pennsylvania | HEY LOGANS MOM...GLAD YOU FOUND US....
LOOKING FORWARD TO HEARING MORE FROM YOU...GOD BLESS... |
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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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| 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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Expert
Posts: 3970
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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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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Elite Veteran
Posts: 1076
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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Expert
Posts: 3970
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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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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Regular
Posts: 78
| My son Bradley had Veptr surgery Jan. 18th he is 4 years old. Dr. campbell got for 4 inches from surgery amazing!!!! It has changed his life! He was around 130 degrees now half of that!! He has gained 3 pounds to!! Yes now very vocal, wasnt talking much before surgery just wined!! It has been a long road 7 weeks from surgery he finially took a few steps. He has a new body to relearn everything:( Good luck I hope this helped a little bit:) |
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Elite Veteran
Posts: 833
Location: Chittenden County Vermont | Danette- that is wonderful! Go Bradley!!! |
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Member
Posts: 5
| Hello everyone,
It’s been a while since I’ve visited the site and wanted to give an update and maybe put some of your fears on the back burner for a while. I had my VEPTR removed just about 3 years ago, without having spinal fusion, and I’ve been really well. I originally had my VEPTR out at the end of 2009 due to unexplainable pain after living with my VEPTR for 18 years. I have had no pain and no plan to have a spinal fusion any time soon. I am not sure about others, but I hope that this may be a viable option for some VEPTR kids reaching the age of possible fusion or removal of the Titanium rib.
I am now 23 and working as an oncology nurse. I have been truly blessed with good fortune and a loving family that has enabled me to move across the country to pursue a new job. With new time on my hands, no longer spent studying for classes, I am interested in getting involved in a VEPTR non-profit. Anyone know of a way I could use my time to help out?
Many of the stories of the VEPTR children posted on this website are truly amazing and I would love to volunteer my time to answering any questions or even just being present for families in need. (Although every case is different.) I also want to give a special thank-you to all of you brave parents.
Happy Holidays! |
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Elite Veteran
Posts: 1076
Location: Silver Lake, Kansas | what a great update!!! we think Josie is nearing the end of her surgical journey as well. she'll be 13 this next March. her last VEPTR surgery was about 1 1/2 years ago (or has it been 2 1/2 already?). we went in last summer for a one-year follow up and schedule a surgery date, but the dr said there's really no need yet after looking at the xrays cause at this point the rods would just be stretching her top and bottom ribs, but not gaining any benefit from it cause her spine hasn't really grown/gotten longer. so he said we'll just take it a year at a time and see where she's at. Josie is doing fantastic and hasn't had any health problems (due do diagnosis) in many many years. |
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | RINNY, CAN'T THANK YOU ENOUGH...ZOE WILL BE 15, AND SHE IS AT THE END OF THE PROJECT...HAD HER IMPLANTS IN AT 2 AND SHE IS DONE GROWING AT 4'2"...SHE IS NOT HAPPY ABOUT HER HEIGHT. BUT SAYS 'OH WELL'...AND WE ARE JUST HAPPY SHE IS ALIVE...AND OWE IT TO THE 'VEPTR'S..SHE HAS HERS PUT IN BY DR. JOHN EMANS AND DR. CAMPBELL IN BOSTON...SHE IS NOW OVER 1 YEARS SINCE WHAT WAS HER LAST EXPANSION, AND THE THOUGHT IS JUST KEEP HER IN A 'WATCH' 'NO FUSION' AS WAS ONCE THOUGHT...XRAYS JUST SENT UP (WE LIVE IN PA) AND EMANS REPORTED "LOOKS GOOD"...BEST YEAR OF HER LIFE...NO SURGERY ON THE CALENDAR FIRST TIME IN HER LIFE...THANKS YOU SO MUCH RINNY!!!...
SEEMS FACEBOOK HAS TAKEN OVER MOST OF OUR VEPTR TALKS...I MISS THIS BOARD AND WISH MORE WOULD COME BACK...GREAT SEEING A POST FROM YOU SHAWN...GREAT TO HEAR JOSIE IS DOING WELL...ALSO RINNY....PLEASE LOOK US UP ON FACEBOOK...SADLY WE JUST LOST A LITTLE NEW VEPTR YESTERDAY...HIS NAME WAS 'HENRY'...OUR 'VEPTR COMMUNITY IS IN MOURNING' BUT STILL KNOW THIS IS THE ONLY HOPE AND WE MUST GO ON...
GOD BLESS...
http://www.facebook.com/johanna.p.lambert |
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | RINNY, CAN'T THANK YOU ENOUGH...ZOE WILL BE 15, AND SHE IS AT THE END OF THE PROJECT...HAD HER IMPLANTS IN AT 2 AND SHE IS DONE GROWING AT 4'2"...SHE IS NOT HAPPY ABOUT HER HEIGHT. BUT SAYS 'OH WELL'...AND WE ARE JUST HAPPY SHE IS ALIVE...AND OWE IT TO THE 'VEPTR'S..SHE HAS HERS PUT IN BY DR. JOHN EMANS AND DR. CAMPBELL IN BOSTON...SHE IS NOW OVER 1 YEARS SINCE WHAT WAS HER LAST EXPANSION, AND THE THOUGHT IS JUST KEEP HER IN A 'WATCH' 'NO FUSION' AS WAS ONCE THOUGHT...XRAYS JUST SENT UP (WE LIVE IN PA) AND EMANS REPORTED "LOOKS GOOD"...BEST YEAR OF HER LIFE...NO SURGERY ON THE CALENDAR FIRST TIME IN HER LIFE...THANKS YOU SO MUCH RINNY!!!...
SEEMS FACEBOOK HAS TAKEN OVER MOST OF OUR VEPTR TALKS...I MISS THIS BOARD AND WISH MORE WOULD COME BACK...GREAT SEEING A POST FROM YOU SHAWN...GREAT TO HEAR JOSIE IS DOING WELL...ALSO RINNY....PLEASE LOOK US UP ON FACEBOOK...SADLY WE JUST LOST A LITTLE NEW VEPTR YESTERDAY...HIS NAME WAS 'HENRY'...OUR 'VEPTR COMMUNITY IS IN MOURNING' BUT STILL KNOW THIS IS THE ONLY HOPE AND WE MUST GO ON...
GOD BLESS...
http://www.facebook.com/johanna.p.lambert |
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | RINNY, THIS IS THE FOUNDATION THAT MY DAUGHTER HAS BEEN WORKING ON NOW FOR MANY YEARS...JUST GOT OFF THE GROUND WITHINT THE LAST YEAR AND HAS OPENED APPLICATION FOR FAMILIES FOR HELP...WE NEED ALL THE HELP SPREADING THE WORD THAT WE CAN GET...THOUGHT YOU MIGHT TAKE A LOOK...
http://r2bfoundation.org/
http://www.facebook.com/r2bfoundation?ref=ts&fref=ts
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Veptr removal
