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|Ive just posted on other board didnt know there was this one for uk member. What it is is my son James has been diagnosed with kyphosis and scoliosis, We have asked about the veptr and my surgoen was a bit unsure whether this would work for James. James is of quite small build and quite skinny my surgeon said he wouldnt know if he would have emough tissue to cover the rods. I was just wondering whether anyone else has had this problem. This is last chance really for James as at the moment. Just want to prevent his lungs and other organs becoming crushed. Hes got a date to have spinal fusion with no instruments.James is only 2, well hes 2 years 16th March. I think the nearest center to us is birmingham, as we live in manchester.Could anyone point us in the right direction please. |
Location: Divide, Colorado
|Hi Sara, welcome! |
I'm glad you found the board. The concerns your surgeon has are commonplace. You'll find that most of the kids here are very lean. The good news is that most of them do just fine with the VEPTR. There are times that there is either some tissue breakdown because the child is so lean. But this can be handled. There are a large amount of kids who have both kyphosis and scoliosis. The VEPTR has proved to be extremely useful in treating these issues. It doesn't completely correct it, but it controls it. And more importantly, it buys them time. Time to grow before a fusion.
Have you had an appointment with a VEPTR surgeon? One who is familiar with the device and knows it's capabilities? We've found that doctors who aren't familiar with it don't fully grasp what it can do. A consultation with a VEPTR surgeon could be extremely useful. He (or she) will know better if this will work for James.
A fusion at 2 years of age, to me anyways, is beyond scary for so many reasons. A fusion stops the growth of the vertebrae in the area. As the child grows, their chest cavity area will only restrict their internal organs more and more. The lack of room means some of those organs will not have the room they need to grow and function properly leading to serious issues down the road. Can you imagine an adult man with the chest size of a 2 year old? Maybe the doctors aren't planning a complete fusion, I don't know. But it's something to think about.
If you haven't had a VEPTR consult, that would be my first suggestion. Then, once you have the information you need, it'll help you with your decision.
Hang in there! Keep in touch. I know this is a scary and difficult time. We know how you feel.
|Hi, yes whats happen is is that the front of his spine is fused,the surgeon was going to fuse the back of his spine to control his kyphosis.We were looking into getting a private consultation with Mr.David Marks in bimingham im ringing the hospital tomorrow to find out what we have to do. I dont know whether he does private consultations. Like i said its the last chance and there has been good reports about veptr. I will keep you posted on what happens. It is very scarey when you first find out its something we had never heard of until James was diagnosed with this. |
Thank you for replying.
|Hi I'm Samuels mum Suzanne and live in stoke- on- trent Samuel is 4 and has has fused ribs and scoliosis and we see Dr Jasani in north staffordshire he has been brilliant and i hear that he is working along side Dr Marks. There was another mother who i knew with a little one called freddie who had a private consultation with Dr Marks think it was about £200 but he then put them to the top of the nhs waiting list. If i can remember freddies mums mailing address i will pass it over to you as she was a brilliant help when i was worried about Sam. |
Anyway good luck and feel free to mail me private if you wish
|Hi Suzanne, yes i will email you, thanks. Still waiting for x-rays to be sent to Mr Marks secretary so no news or anything yet, but shouldnt be long now. Then we should be able to get alot of information on whats going to happen to James. I will keep you posted on what happens when we have been to see Mr.Marks hopefully he will be a candidate for veptr. |
Location: Plymouth, Pennsylvania
|DEAR SARA, |
WELCOME TO THE VEPTR BOARD...
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