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Carlos Alberto
6th October 2005, 10:32 PM
Hello

Iīm new here. Iīm the fhater of Gaby who has kyphosscoliosis due to hemivertebrae. My time for writing is getting over i spend too much time in the photos galery, tomorrow iīll write more and will make some questions. For today just hello to everybody.

greetings Carlos

BeckyH
6th October 2005, 10:35 PM
nice to meet you carlos!

i'm becky, i'm 18 and 12 weeks ago had surgery to fuse T11-L3. unfortunately i don't have experience in little children with scoliosis but i'll offer my support and help in any way i can

sins
6th October 2005, 10:35 PM
Hello Carlos and welcome!
Ask any questions when you're ready.We'll do all we can to help.
Sins

Jonny
6th October 2005, 10:46 PM
Welcome to SSO Carlos :wave: nice to meet you. I'm 17 from England and had surgery for idiopathic scoliosis last July and this March.

There's no rush - ask when you like. Hope to hear from you soon!

mark
6th October 2005, 10:49 PM
Hello Carlos welcome to the site hope you stick arond were a crazy old bunch

tonibunny
6th October 2005, 10:57 PM
Welcome Carlos! :welcome2: Looking forward to hearing more about little Gaby :)

mark
6th October 2005, 11:56 PM
Hi carlos i just read your note under your post hasGaby had three surgeries already. I'm sorry to hear that she's had such a lotof surgery for someone so young

God bless you and your daughter

Mark

DublinPauline
7th October 2005, 12:24 AM
Welcome Carlos.
I am 39 and also have kyphoscoliosis caused by hemivertabrae.
I had surgery in 1979 and my spine has been stable since then.

jfkimberly
7th October 2005, 09:00 AM
Welcome to SSo, Carlos! I'm so glad you found us. We will be happy to answer any questions you have.

I am 32 years old, with congenital scoliosis (hemivertebrae and fused ribs). Like your daughter, I had three surgeries before I was 4 years old, with my first fusion at 11 months of age.

Is that Gaby in your avatar? Such a pretty child.

Sealy
7th October 2005, 02:28 PM
Hi Carlos :welcome:

I know you'll love it here ! This is a great place for information and especially support. Gaby is quite beautiful :-)



Sealy

conni60640@gmail.com
7th October 2005, 03:40 PM
Welcome Carlos. My son Billy is 5 and has a hemivertebra also, although his is "behaving" so far. He has scoliosis mainly from an uneven pelvis due to sacral anomalies causing his lumbar spine to compensate for the tilt.

Carlos Alberto
7th October 2005, 10:37 PM
Iím the father of Lia Gabriela (Gaby) who has a rare genetic disease called Chondrodisplacia Puntacta causing her kyphoscoliosis due to hemivertebrae. Her first orthopaedic surgery was at 16 month for fuse T8 - T12. This surgery fails because of an infection with Staphylococcus Aureus. She wore a Boston brace until she was three years old, then was the second operation with instrumentation Luque (posterior two rods) from T1 to L1 and fusing hers hemivertebraes. Again the surgery fails because of local sepsis. The doctors decided to make a long antibiotic treatment, trying to keep the instrumentation at least for one year. This time (the harder of ours life) she wore a plaster brace and had IV antibiotics treatment. Eight months later the hardware was removed. By a CT Scan is seen posterior fusion and no damage in the spinal cord but the hardwareís correction was loosen. Now she is wearing a brace thatís between a Boston and a Milwaukee and checking each three or four month with Xrays.
In our country we have now two different opinions. The first one is a next surgery by anterior approaching for performance an anterior fusion, this is taking away one or more ribs. And the other is let her grow without surgery for now, because of the posterior fusion the doc expect that the growth by the anterior side of the spine could improve (very slowly) the kyphosis and that the scoliosis donít get too much worst. We must be alert with something called crankshaft.

We live in Havana, Cuba, and canít have a different medical opinion here because thereís only two hospitals capable to do this kind of surgery.

A couple of months ago I filled the application for foreign patients for the Shrinner Hospital of Montreal, where my older brother live. The doctors got met and says that they could not do the case because is high risk and they don't have an specialist required for cases with previous infections but recommend us the Montreal Children Hospital and we are now expecting for the doctorís considerations, they are evaluating the VEPTER choice.

In Internet I found the USA NSF Forum http://www.scoliosis.org/forum/ where I learned a lot of things. By somebody I heard there of the UK Forum so here we are.

Iím sorry because this post is too long and my English is not the best

greetings

mark
7th October 2005, 10:42 PM
No need to apologise about your English it reads fine to me. Thanks for giving us Gaby's story. I hope you can find some answers in montreal. One of members Jenn (jeadyn) lives in Montreal you may have seen some of her pictures in the gallery

titch
8th October 2005, 10:05 AM
Hi Carlos,

:welcome2: I'm sorry it's not under better circumstances. It sounds like Gaby and you have been through a lot with this :hug:

I know it would be easier to go to somewhere that you have family, and hopefully the Montreal Children's Hospital will be able to do something to help (so far results with the VEPTR have been very good for most), but meanwhile it could be worth considering applying to several of the Shriners in the US as well - for example, Dr Randal Betz at the Philadelphia Shriners is also a VEPTR specialist. If I can find anything else that might help you, I'll let you know :-)

titch
8th October 2005, 10:14 AM
I've just found something - if I remember correctly, this charity started out with raising money for a girl from Africa to come to the UK for treatment. It looks like they're closed now, but it could be worth writing to them at the address given here: http://www.mproweb.co.uk/willow/contact.php, because even if they can't offer any help themselves, with all the experience they have got over the last 5 years, they may be able to offer you some advice and possibly point you in the direction of other charities that could help.

gerbo
8th October 2005, 11:34 AM
Originally posted by Carlos Alberto@Oct 7 2005, 08:37 PM
We live in Havana, Cuba,
do you still have these enormous and very old pre 1959 american cars driving around, which i remember so well from when I spend 48 hours in Havana in 1986??

gerbo

jfkimberly
8th October 2005, 02:19 PM
Carlos,

You might also contact Dr. Robert M. Campbell (http://christussantarosa.netreturns.biz/Providers/Detail.aspx?ProviderId=af6a392d-91be-4c26-b4df-8e37098d561b)'s office (sorry I no longer have the phone number, but he practices here: http://www.christussantarosa.org/contact_childrens.htm). I know he travels frequently to train surgeons and operate. When I consulted with him in February, he talked at length about his work in Puerto Rico (I believe that's where he said). His office might know of some way you can get yet another expert opinion to consider.

Also, since they're in San Antonio, there will probably be someone on staff who speaks Spanish, if that will help you.

(See: http://christussantarosa.netreturns.biz/Ne...5-276dce6876ab (http://christussantarosa.netreturns.biz/NewsReleases/Article_Detail.aspx?id=982e06cf-28a6-4ae0-9015-276dce6876ab))

Nicki
10th October 2005, 12:04 PM
Hi Carlos

Welcome to Scoliosis Support, you will find this site very supportive and infomative, everyone is warm and friendly.

Your daughter Gaby is beautiful, I am sorry to hear you have had such a difficult time with her surgeries.

I am mum to Lucy who is 9 and has idiopathic scoliosis, with a curve of 45 degrees.

Love
Nicki XXX

conni60640@gmail.com
12th October 2005, 05:48 PM
Originally posted by Carlos Alberto@Oct 7 2005, 04:37 PM
Iím the father of Lia Gabriela (Gaby) who has a rare genetic disease called Chondrodisplacia Puntacta causing her kyphoscoliosis due to hemivertebrae. but recommend us the Montreal Children Hospital and we are now expecting for the doctorís considerations, they are evaluating the VEPTER choice.


Carlos, there is a website specifically for families looking for information or who have already had the surgery and are living with the VEPTR implants at http://veptr.com/

It is a great bunch of people, I joined when Dr. Betz at Philadelphia Shriner's (mentioned in a previous post as a doc who does the VEPTR surgery) suggested this might be an option for Billy. We ended up not having the surgery, but I still hang around since I have many friends there now.

I also know there is at least one family who have had the VEPTR in Montreal.