Home  :  About the procedure  :  Locations  :  Message forums  :  Photo albums  :  Stories  :  Links

VEPTR Forums
VEPTR Forums
Search | Statistics | User Listing Forums | Calendars | Albums | Skins | Language
You are logged in as a guest. ( logon | register )

Vepter in Toronto?
Jump to page : 1
Now viewing page 1 [25 messages per page]
View previous thread :: View next thread
   VEPTR Sites/Hospitals -> CanadaMessage format
 
LuckyMe
Posted 2009-03-04 8:53 AM (#36657)
Subject: Vepter in Toronto?


Member

Posts: 12

Location: Toronto Canada
Hello there,

My son (4 months now) was diagnosed with VATER,and amongst the issues he was born with: sever scoliosis, missing and fused ribs. He is completely off balance and collapses on the side of the missing ribs. I don't know at this point whether that's enough to qualify him for a VEPTER surgery at some point in time here in Canada given the fact that he's oxygen free but with lower than normal saturation levels???

I was wondering if there are any Families here in Toronto who went through the VEPTR experience and could share it with me If not, can you please tell me what were the factors that made your doctors decide on a VEPTR implant?

Thank You


Edited by LuckyMe 2009-03-04 8:57 AM
Top of the page Bottom of the page
Carmell
Posted 2009-03-04 11:25 AM (#36658 - in reply to #36657)
Subject: RE: Vepter in Toronto?



Expert

Posts: 3243
2000100010010025
Location: Utah

Welcome Amina.

My Braydon also has VACTERL issues, with his spine being the biggest medical hurdle for him.  He had his VEPTR implants done at 6yrs old (he is 13.5yrs old now).  If the VEPTR devices had been perfected when he was an infant, he would have qualified for VEPTR at a much earlier age.  He is only missing one rib on the right, but, he had 5 ribs grow/fuse together when he was little, causing the right lung to lose function.  With the VEPTR implant, they cut apart the fused ribs and his right lung improved by more than 40% in size and function instantly.  They also told us that his right lung had atrophied enough that he would have "lost the use of it completely".  Frightening to hear, especially when he NEVER had lung problems before.  No pneumonias.  No apparent breathing issues.  No oxygen de-saturation.  Nothing to indicate lose of function.  His body compensated very well.

Today Braydon had 42% total lung function.  He does not require supplemental oxygen (sats at 97-98 always).  He has no physical restrictions.  He's a very active teenager.  Without the VEPTR surgery, his quality of life would be dramatically worse.  When he was an infant (11 months old) he had spinal fusion surgery to stop the progression of the scoliosis.  This has stopped the vertical growth of his vertebrae in the fused area (T5-L1).  He is 6+ inches shorter than he should be.  We are very pleased with the VEPTR surgery.  I strongly encourage you to ask lots of questions.  If the orthopod is a VEPTR trained surgeon he/she should be able to help you understand how VEPTR would benefit your little man.  Every child is very different.

Another item that may be a little more important than VEPTR right now is checking for a tethered spinal cord.  It is relatively common to have a tethered cord (TC) in kids with congenital scoliosis.  If he does have a TC, it needs to be released before VEPTR surgery can be done.  Lots of things to think about, I know.  You are doing great.  Keep us posted on how things are going.

Top of the page Bottom of the page
Wendy
Posted 2009-03-04 6:25 PM (#36663 - in reply to #36657)
Subject: RE: Vepter in Toronto?



Extreme Veteran

Posts: 599
500252525
Location: Southern California
Hello and welcome!

I believe there are some families here from Canada... Jackie, Sioban's mum??? Or Susan? But, not exactly sure where... Hopefully they'll check in soon and touch base w/you.

My son also has VATER Syndrome, and has/had fused and many missing ribs on his left side. But he's doing quite well, thanks to his VEPTRS. These devices were suggested to us because they addressed Alex's rib cage issues and no other device or technique did at the time (and I think I can still say that applies today), and would buy us time, enabling Alex to keep growing while we wait for other improved treatment options. At the time, our only option was full thoracic region spinal fusion. Fusion would have left him with the spine of a 2 y/o for the rest of his life (not something we wanted if we could avoid it). Growing rods were not even proposed due to the severity of Alex's scoliosis and his "tethered" rib cage (due to the mass of ribs) and the high unlikelihood that they would help much as a result...

Best wishes to you and your son -- as you seek for answers and solutions!

Wendy
Top of the page Bottom of the page
Jackie
Posted 2009-03-04 7:39 PM (#36667 - in reply to #36657)
Subject: RE: Vepter in Toronto?



Elite Veteran

Posts: 931
50010010010010025
Location: Vancouver, Canada
Hi there

We're in Vancouver, BC - sorry that's not exactly close to you! My daughter had VEPTR implants at 6 yrs old - She has 2 rods placed rib to spine - no rib issues, so no rib to rib rods.
Her VEPTR's literally act as an "internal brace" for her scoliosis.
She's doing wonderfully!

Will Sick Kids be doing your son's surgery if/when he gets VEPTR?

Please post any questions,concerns, rants you have - We're all here to listen and offer any support we can.

Jacki
Top of the page Bottom of the page
Zoes Nana
Posted 2009-03-05 9:15 AM (#36670 - in reply to #36657)
Subject: Re: Vepter in Toronto?



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
HI AND WELCOME TO THE VEPTR BOARD...

YOUR QUESTION, ABOUT "FACTORS" MAKING US DECIDE...
FOR ZOE IS WAS VERY SIMPLE...THEY WERE TELLING US THAT HER TIME WAS "RUNNING OUT"...
THE COMBINATION OF HER MISSING AND FUSED RIBS, ALONG WITH THE HEMI VERTS, AND EVEN WITH HAVING A
"STABILIZING FUSION", SHE WAS CURVING SO RAPIDLY THEY WERE GIVING HER ONLY MONTHS...
THIS WAS 9 YEARS AGO...SHE WAS JUST 2 1/2 YEARS OLD, AND WEIGHED JUST 18 POUNDS....
SHE WENT INTO THE SURGERY A BEAUTIFUL, BUT VERY CURVED AND CROOKED LITTLE GIRL...BENT SO BAD THAT SHE COULD ALMOST DRAG HER ARM TO THE FLOOR, AND SHE CAME OUT OF THE SURGERY WITH "HOPE", THE ABILITY FOR HER LUNGS TO BREATH AND GROW, AND THE BONUS OF A MUCH STRAIGHTER SPINE...
ZOE IS NOW 11...NONE OF THIS IS EASY...BUT "VEPTRS" OFFER A HOPE, THAT I STILL THINK NOTHING IN THIS WORLD, YET CAN COMPARE TOO FOR KIDS LIKE ZOE...

GOD BLESS, AND WE LOOK FORWARD TO HEARING MORE FROM YOU...
Top of the page Bottom of the page
LuckyMe
Posted 2009-03-05 11:34 AM (#36674 - in reply to #36657)
Subject: RE: Vepter in Toronto?


Member

Posts: 12

Location: Toronto Canada
Thank you All!!

Jobey, You describing Zoe feels like you're describing Youssouf. His PT confirmed to me yesterday that she was pretty concerned about how crocked and bent he was even when sleeping. Not sure how he will be able to sit or eat.

Oh well, we will see Ortho next week. I'll keep you posted.

Thanks for the answers, really appreciate the company
Top of the page Bottom of the page
stees
Posted 2009-03-06 11:18 AM (#36677 - in reply to #36657)
Subject: Re: Vepter in Toronto?


Elite Veteran

Posts: 1127
100010025
Location: Vancouver, Canada
Hi Toronto,
This is Susan from Vancouver. I have three little lads all with congenital scoliosis, and although they don't have VATERS, the two older ones (8 and 4) have three VEPTRs each. The wee one is now 9 months and has a curve of... I really don't know what it is right now, but the doctor has just said to me that fall of 2009 will be the time of his first implant. So that would put him at a little less than a year and a half.

All I can go by is experience, and with the oldest boy, his curve was 90 degrees by that age.

Toronto did have a VEPTR program last I checked, many years ago. I don't know who's in charge of it. Doug Hedden came out to Alberta from there a few years ago.

Keep us posted.
Top of the page Bottom of the page
Zoes Nana
Posted 2009-03-07 9:08 AM (#36683 - in reply to #36657)
Subject: Re: Vepter in Toronto?



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
SUSAN,
I SENT YOU A PRIVATE MESSAGE, BUT I WANT TO SAY FROM ALL OF US...
CONGRATULATIONS ON THE ADDITION TO YOUR FAMILY...
WHAT IS THIS LITTLE "FELLOWS" NAME...?....
I KNOW TIME MUST BE LIMIITED FOR YOU, AND I HAVE BEEN WONDERING HOW YOU ALL HAVE BEEN...
WHEN YOU HAVE TIME...KEEP US UPDATED...AND ALWAYS KNOW YOU HAVE OUR LOVE AND SUPPORT...

GOD BLESS...
Top of the page Bottom of the page
Zoes Nana
Posted 2009-03-07 9:13 AM (#36684 - in reply to #36657)
Subject: Re: Vepter in Toronto?



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
SUSAN,
I SENT YOU A PRIVATE MESSAGE, BUT I WANT TO SAY FROM ALL OF US...
CONGRATULATIONS ON THE ADDITION TO YOUR FAMILY...
WHAT IS THIS LITTLE "FELLOWS" NAME...?....
I KNOW TIME MUST BE LIMIITED FOR YOU, AND I HAVE BEEN WONDERING HOW YOU ALL HAVE BEEN...
WHEN YOU HAVE TIME...KEEP US UPDATED...AND ALWAYS KNOW YOU HAVE OUR LOVE AND SUPPORT...

GOD BLESS...
Top of the page Bottom of the page
Michelle
Posted 2009-09-17 1:26 PM (#38111 - in reply to #36657)
Subject: Re: Vepter in Toronto?



Veteran

Posts: 111
100
Location: Edmonton,Albert
Hi Lucky.
I'm from Edmonton, AB but I have family in London & Woodstock.
My girl had very small lungs from birth( less than half size), all her ribs where fine but a curve of 104 degress. It took over 2 years from the first time I heard of the VEPTR to finally getting to meet the surgion. It's been 3 years now and she has never been better.
With it all the thing that I remember the most with frustration "hurry up and wait"
Stees...Dr. Hedden is here in Edmonton at the Stollery
Top of the page Bottom of the page
stees
Posted 2009-09-17 5:57 PM (#38116 - in reply to #36657)
Subject: Re: Vepter in Toronto?


Elite Veteran

Posts: 1127
100010025
Location: Vancouver, Canada
Thanks for the update! I am Susan, really.... : )
Top of the page Bottom of the page
LuckyMe
Posted 2009-09-22 8:09 AM (#38129 - in reply to #38116)
Subject: Re: Vepter in Toronto?


Member

Posts: 12

Location: Toronto Canada
Hi All,

Sorry i haven't been here that much lately, We are more so focusing on fixing youssouf's gastro-intestinal issues.

We have been told though that Youssouf is a condidate for vpter done by a french surgeon here in Toronto called dr Zeller!!!! We are still waiting to talk to him.

Youssouf is now almost 11 months old going for surgery #4 next monday and still unable to sit, crawl or do anything an 11 months old could do because of his trunk deformities.

But we're keeping the faith

Amina
Top of the page Bottom of the page
Michelle
Posted 2009-09-23 1:54 AM (#38131 - in reply to #36657)
Subject: Re: Vepter in Toronto?



Veteran

Posts: 111
100
Location: Edmonton,Albert
Jordyn had 4 surgeries in 4 months. We where so proud of her when she could sit up by herself at 18 month, even if it was for 5 minutes only.
now she is dancing queen with her scooter and not walking properly dosen't even slow her down.
Top of the page Bottom of the page
LuckyMe
Posted 2010-01-19 2:02 PM (#38600 - in reply to #36657)
Subject: RE: Vepter in Toronto?


Member

Posts: 12

Location: Toronto Canada
Hi evryone!!!

It's been such a long time since I last was here. Between the surgeries, the tests, the other kids and work. I bearly have time to be!!!

But in terms of the Veptr Surgerie. it is official. we have met the One and Only surgeon in Toronto who performs this surgery. His name is Dr Zeller. Youssouf is sheduled to have the implant in July. He would be about 20 months old by then.

The surgeon explained what it really was. but it's the stories of all of you who helped me catch my breath as he was talking. I thought if all of your children had it and have had their lives improved by it, then I should do the same.

Youssouf's bones need to be stronger for this surgery so we have to ensure that he gets all the nutriants he needs.

Hope all your kids are doing great!!

Amina
Top of the page Bottom of the page
Zoes Nana
Posted 2010-01-20 5:55 AM (#38603 - in reply to #36657)
Subject: Re: Vepter in Toronto?



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
AMINIA,
THANK YOU SO MUCH FOR UPDATING US ABOUT YOUSSOUF...
ZOE WAS JUST 2 1/2 WHEN SHE HAD HER VEPTRS PLACE ALMOST 10 YEARS AGO...
IT IS A TUFF ROAD, BUT IT SAVED ZOE LIFE, AND SHE IS A HAPPY LITTLE "TWEENER"...
LIVING A LIFE THAT WOULD NOT HAVE BEEN POSSIBLE FOR HER, WERE IT NOT FOR THE VEPTRS...
KEEP US POSTED, AND UPDATED ABOUT YOUSSOUF, AND THANK YOU FOR SHARING HIS PROGRESS WITH US....
GOD BLESS...
Top of the page Bottom of the page
Faith's Mom
Posted 2010-03-18 2:54 AM (#38954 - in reply to #36657)
Subject: Re: Vepter in Toronto?


New User

Posts: 2

Hi LuckyMe,

New to this site....looks like to little to late...but very thankful that you have found a surgeon. I just moved to Vancouver from Belleville, Ont and had many dealings at sick kids Toronto for my daughter Faith. Our Orthopedic Surgeon was in Kingston at KGH and was fantastic!!! Dr. Daniel Borschneck. He preformed my daughters surgery at 2.5 yrs old, he was the first surgeon I believe in Ontario to preform it and my daughter was the second. However he used a different brand from the Vepter a Moss Miami surgical steel implant that works the same as the Vepter (only less expensive...so unfortunately un-beknownst to us used that instead). Sounds like you are in great hands and sorry you had to wait so long....that is the hardest part. We are now in Vancouver and I am thoroughly impressed with the care at BC Children's hospital. My daughter will receive a totally new implant (this time the Vepter) She will be having surgery on the 24th March/10. Our case is Klippel-Feil syndrom with severe scoliosis as the major concern...no TIS, but many other anomolies. Stay strong...and I look forward to hearing about your experience and pray that it will be a good one. I'm not finding many Canadian entries....so I would love to hear some feedback from Vancouver as well as Toronto.
Top of the page Bottom of the page
stees
Posted 2013-04-10 10:24 PM (#41705 - in reply to #36657)
Subject: Re: Vepter in Toronto?


Elite Veteran

Posts: 1127
100010025
Location: Vancouver, Canada
Hi there,
Just checking in, this being the Canadian group. Dr. Reilly does the surgeries here in Vancouver and he just gets better and better every time. The incisions are smaller, the downtime and pain are less.... it helps that the boys are all growing up and getting stronger. Dr. Reilly works out of BCCH.
Pm me... I think I will be notified.
Top of the page Bottom of the page
Jump to page : 1
Now viewing page 1 [25 messages per page]
Jump to forum :
Search this forum
Printer friendly version
E-mail a link to this thread

(Delete all cookies set by this site)
Running MegaBBS ASP Forum Software v2.2 PR 1
© 2002-2005 PD9 Software