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Veptr removal
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Amanda's mom
Posted 2007-07-05 3:15 AM (#27339)
Subject: Veptr removal


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Posts: 30
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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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Courtney
Posted 2007-07-05 9:58 AM (#27340 - in reply to #27339)
Subject: Re: Veptr removal



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Posts: 86
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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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Carmell
Posted 2007-07-06 12:06 PM (#27352 - in reply to #27339)
Subject: RE: Veptr removal



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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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Courtney
Posted 2007-07-06 2:14 PM (#27358 - in reply to #27339)
Subject: Re: Veptr removal



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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 lionettechic08@yahoo.com.
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stees
Posted 2007-07-10 1:29 AM (#27415 - in reply to #27339)
Subject: Re: Veptr removal


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Posts: 1127
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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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Linda
Posted 2007-07-11 11:58 PM (#27455 - in reply to #27339)
Subject: RE: Veptr removal



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Posts: 116
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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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Amanda's mom
Posted 2007-07-12 1:44 AM (#27460 - in reply to #27339)
Subject: Re: Veptr removal


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Posts: 30
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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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Carmell
Posted 2007-07-12 12:15 PM (#27464 - in reply to #27460)
Subject: Re: Veptr removal



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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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Jackie
Posted 2007-07-13 11:14 PM (#27488 - in reply to #27352)
Subject: RE: Veptr removal



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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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Jennie-BriannasMom
Posted 2007-07-19 12:57 AM (#27567 - in reply to #27488)
Subject: Re: Veptr removal



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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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josiejean
Posted 2007-07-19 1:30 PM (#27581 - in reply to #27339)
Subject: Re: Veptr removal



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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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Nadia's Mommy
Posted 2007-08-11 10:21 PM (#28056 - in reply to #27581)
Subject: Re: Veptr removal



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Posts: 40
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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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Rhonda
Posted 2007-08-12 8:03 PM (#28065 - in reply to #28056)
Subject: Re: Veptr removal



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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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Amanda's mom
Posted 2007-08-23 1:20 AM (#28343 - in reply to #27339)
Subject: RE: Veptr removal


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Posts: 30
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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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Amanda's mom
Posted 2007-08-23 1:20 AM (#28344 - in reply to #27339)
Subject: RE: Veptr removal


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Posts: 30
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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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Zoe Alexis's Mommy
Posted 2007-08-23 6:29 AM (#28345 - in reply to #27339)
Subject: Re: Veptr removal



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Posts: 213
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I'm so glad to hear that Amanda is doing well!
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Zoes Nana
Posted 2007-08-23 11:16 AM (#28347 - in reply to #27339)
Subject: Re: Veptr removal



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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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tmsuggs01
Posted 2007-08-23 11:37 AM (#28349 - in reply to #27339)
Subject: Re: Veptr removal



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Posts: 150
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Location: South Carolina
Continued well wishes!!
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Carmell
Posted 2007-08-23 11:55 AM (#28353 - in reply to #28343)
Subject: RE: Veptr removal



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Posts: 3243
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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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Emily's Mom
Posted 2007-08-24 11:19 AM (#28365 - in reply to #27339)
Subject: Re: Veptr removal


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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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Amanda's mom
Posted 2007-08-25 12:48 AM (#28387 - in reply to #28365)
Subject: Re: Veptr removal


Member

Posts: 30
25
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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Jackie
Posted 2007-10-02 9:46 PM (#29093 - in reply to #28344)
Subject: RE: Veptr removal



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Posts: 931
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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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Amanda's mom
Posted 2007-10-03 12:49 AM (#29101 - in reply to #27339)
Subject: Re: Veptr removal


Member

Posts: 30
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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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shannon p.
Posted 2007-10-03 8:44 PM (#29116 - in reply to #27339)
Subject: Re: Veptr removal



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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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Jackie
Posted 2007-10-03 9:23 PM (#29119 - in reply to #29101)
Subject: Re: Veptr removal



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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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