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hosp appt tomorrow, VEPTR suggested
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Lisa Harvey
Posted 2009-06-09 11:36 AM (#37521)
Subject: hosp appt tomorrow, VEPTR suggested


New User

Posts: 2

Location: North Norfolk, UK
Hi, my little boy Daniel has scoliosis. He was in a plaster cast from 3 months, which was horrible, and a brace from about 2 until 3 1/2. We saw his dr today and are off to Addenbrookes tomorrow to see another dr about possible VEPTR. He is very small, about the size of a 2 year old, and our dr felt that this would be better than a rod put in his spine.

I am a member of another internet site infantile scoliosis and congenital scoliosis, but most of the posters seem to be from the US.

Very happy to find this site. Will know more when we see the other dr tomorrow. Only downside Cambridge is about 2 1/2 hours from here, we are in North Norfolk.

Lisa x
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Zoes Nana
Posted 2009-06-10 10:11 AM (#37532 - in reply to #37521)
Subject: Re: hosp appt tomorrow, VEPTR suggested



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
HI LISA,
AND WELCOME TO THE VEPTR BOARD...
AND THANK YOU FOR SHARING DANIEL WITH US...
I WILL SEARCH OUR ARCHIVES REGARDING FAMILIES IN YOUR AREA AND THE VEPTRS...
ZOE WAS JUST 2 1/2 WHEN SHE HAD HER "VEPTR" IMPLANTS, AND ACTUALLY VERY SMALL FOR HER AGE AT THAT TIME
AS WELL...
YOUR DOCTOR IS RIGHT, THE VEPTR IMPLANT MIGHT BE BETTER FOR YOU SON...
LET US KNOW ABOUT HIS EVALUATION WHEN YOU HAVE TIME...AND KNOW THAT WE WILL BE PRAYING FOR HIM....
GOD BLESS...
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Lisa Harvey
Posted 2009-06-10 3:12 PM (#37537 - in reply to #37521)
Subject: Re: hosp appt tomorrow, VEPTR suggested


New User

Posts: 2

Location: North Norfolk, UK
Hi Jobey

thanks for the reply. Appt went well today. We had to drive about 2 and a bit hours to the hospital, but I felt very safe there, and met the very nice doctor. He looked at Daniel's xray and thinks he has about a 75 - 80 deg curve, it was about 40 two years ago, so surgery is the only option as it is getting worse.

He said the two options were growing rods or VEPTR and he favoured growing rods but would speak to our dr and another colleague before any decision would be made.

Feel lots better now it is over, I hadn't realised how much I had been worrying. He hopes to do the op within the next 6 months, probably Oct/Nov which suits me.

thank you for your kind words

lisa xx
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Zoes Nana
Posted 2009-06-10 8:54 PM (#37547 - in reply to #37521)
Subject: Re: hosp appt tomorrow, VEPTR suggested



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
GLAD TO HEAR THAT YOU ARE FEELING BETTER, AND I DID CONNECT WITH ONE OF OUR FAMILES FROM THE
UK, AND YOU SHOULD BE HEARING FROM THEM SOON....
PLEASE KEEP US POSTED...AND GOD BLESS...
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Ross Family
Posted 2009-06-12 3:09 PM (#37561 - in reply to #37521)
Subject: Re: hosp appt tomorrow, VEPTR suggested


Member

Posts: 24

Location: Berkshire, UK
Hi Lisa,

I haven't posted on here in a long while but do come by every now and then to see if there are any more UK families going through this.

My daughter Hannah was born with a syndrome called Goldenhar and has got facial abnormalities, fused ribs, scoliosis of the spine, hearing loss, imperforated anus (now fixed) and was born without an eyelid on her right eye which had plastic surgery on when she was a few days old - consequently her eyesight in that eye is very poor.

She was referred to Nuffield Orthorpaedic Centre in Oxford when she was 21/2 for her scoliosis and it was only when they did more xrays that they discovered her fused ribs. The option they gave us was VEPTR - a new surgery for them. She was supposed to have the op just before she turned 3, but due to funding she ended up not having it till she was just over 3. It was very scary and a long op, but she came through absolutely fine and recovered in about 2 weeks. She is now 7 and has a great quality of life. She can do roly poly's but so what?! She runs, jumps, climbs, dances - basically everything she could do before but just straighter!

She is also small for her age (still in 5/6 clothes) and I was told prior to the op to try to "fatten her up" as they to were worried about not having enough skin to cover the rods, but she was fine and is still small and skinny - seems to be a commen theme with kids needing VEPTR!

She has a rod from top of spine to bottom and then one from spine to ribs. They get "turned" every 6 months and it has become part of normal life now. They have said she will need till she is skeletually mature (about 14) when they will look to remove rods and fuse top of spine to stop in curving over in last couple of years of growing. I don't really notice as I obviously see her everyday, but my friends and family can see when she has had a lengthening done and says how much straighter she looks. Without VEPTR she would have no quality of like as her fused ribs would have prevented her lung from growing and she would have been oxygen dependent - thank god for being born in this day and age.

The consultant we have is Mr Wilson MacDonald and he has done quite a few of these now. I believe that when Hannah had hers done, Mr Marks was involved (who I think is at Birmingham?) - he is very good and a bit of a VEPTR guru in UK.

I know how worrying it is when facing this and wish I had, had someone over here to talk to - however the posters on the US board are great and a mine of information! If you want to talk any further, please don't hesitate to post or you can reach me by email on ramonaross@btopenworld.com.

I hope that Daniel gets the correct surgery he needs and whichever way they do it, I think you will find that things will be much better for him - his curve sounds quite a lot - think Hannah's was similar and is about 35-40 degrees now which they are very pleased with (apparently its got to be at least 40 before they consider surgery).

Best wishes and look forward to hearing from you.

Ramona x
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