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Any UK families?
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davies
Posted 2004-12-29 8:24 AM (#5539)
Subject: Any UK families?


2525
Location: Wales (UK)
I was just wandering if their are any other UK families using this site.

We have a 2yr old Son called Reuben who has congenital scoliosis. His curve is currently 75 degrees. He also has two hemivertabrae and fused ribs too. This does not affect his daily life whatsoever, he is a typical lively two year old, who enjoys being busy from 'sun up to sun down'. We have been fortunate that his condition hasn't impaired him at all.

Reuben is scheduled to have his first VEPTR operation on January 12th 2005 at the Birmingham Children's Hospital.

He is under Mr Marks' team and his main consulatant is Mr Spilsbury at the Royal Orthopaedic Hospital in Birmingham.

I have contact with a couple of families whose children have had the VEPTR here in the UK, I find it a great support.

Trace
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williams family
Posted 2005-02-06 6:01 PM (#6858 - in reply to #5539)
Subject: RE: Any UK families?


we have a 4yr old girl born with marfans syndrome. she has severe scoliosis 120 degree. we live in bristol and waiting for an appointment to go to the bristol childrens hospitial for the veptr procedure. chloe has been in and out of hospitial since she was 6months old she has very complex medical needs. at the moment the veptr is the only option we have. she is a wonderful little girl and lets nothing stop her.
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davies
Posted 2005-02-07 6:41 AM (#6861 - in reply to #5539)
Subject: Re: Any UK families?


2525
Location: Wales (UK)
Oh it is so nice to hear from you. Sorry to be so ignorant but what is Marfans syndrome?

Reuben has a 80 degree curve and had his first VEPTR fitted in Jan of this year. His curve was reduced to 60 degrees. He goes back in may to have it lengthed. He has to have a second device fitted in about a year as he was too small to take the both this time.

You are lucky that you live in Bristol and have such a fantastic hospital so close. Alot of the hard work for us is the travelling. We live in Mid wales and have to travel to Birmingham which is 2 1/2 to 3 hours. It is also made worse by the fact that Reuben HATES the car!!!

Apart from his curve, fused ribs and extras vertebrae Reuben is just like any other active 2 yr old. He is such a strong and spirited child, and I truly believe that this is what helped him get over the VEPTR operation so well. He did not go to intensive care and we were home on day 4, after 1 week he was on no pain relief and was running and climbing as ever. The worst for us was the itching as the wound was healing.

Do you know when you have an appointment?

If you need to know anything, then please ask.

My home email is also Ashmoor123@aol.com

I tend to check this more often!!!

Take care and please stay in touch.

Trace x
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steve
Posted 2005-02-07 9:26 AM (#6863 - in reply to #5539)
Subject: RE: Any UK families?


hi all
i am so so glad that i found this site
my 20 month old son oliver has just been recomended to have this procedure . he is at the queens medical centre in nottingham under mr freeman . mr freeman is talking of bringing mr bob campbell over from texas to do the procedure.
as we have only been told about it today we are very worried . oli's curve was 48 degrees 6 months ago but today is now 75 degrees.
if any one would be so kind as to tell mandy and myself(steve) any experiences you have with this procedure we would be very pleased
thansk for taking thetime to read this

steve
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Zoes Nana
Posted 2005-02-07 10:27 AM (#6864 - in reply to #5539)
Subject: RE: Any UK families?



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
WELCOME TO THE VEPTR BOARD,
TO THE WILLIAMS FAMILY, AND TO STEVE AND FAMILY....

AS A FAMILY WHO HAS BEEN WITH THE "TITANIUM RIB PROJECT" NOW
FOR ABOUT 5 YEARS, WE WOULD BE MORE THAN HAPPY ANSWER ANY QUESTION...
ZOE WILL SOON BE 7 YEARS OLD, AND IS A RECIPIENT OF THE RIBS,
AND I AM SO HAPPY TO REPORT,
THEY HAVE NOT ONLY SAVED HER LIFE, BUT GIVEN HER A MUCH BETTER QUALITY OF
LIFE AS WELL...
THIS "TITANIUM RIB WALK OF LIFE" THOUGH NOT EASY, IT DOES BRING
THE HOPE FOR OUR CHILDREN THAT NOTHING STILL CAN COMPARE TOO...
GOD BLESS, AND I LOOK VERY FORWARD TO HEARING MORE ABOUT YOUR FAMILIES....
JOHANNA LAMBERT
PLYMOUTH, PENNSYLVANIA
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candyman
Posted 2005-02-07 11:15 AM (#6865 - in reply to #6864)
Subject: RE: Any UK families?



Regular

Posts: 82
252525
thanks jobey

one little question
my son oliver is a typical 2 year old lover rough and tumble
will he still be able to play normally after he has had it done
thanks steve
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josiejean
Posted 2005-02-07 12:33 PM (#6869 - in reply to #5539)
Subject: Re: Any UK families?



Elite Veteran

Posts: 1076
1000252525
Location: Silver Lake, Kansas
Hi Steve,

GREAT to have you on board!! To answer your 'little question' from my perspective and experience.. the children can go on to continue having fun and playing around. There is some element of caution however. titanium ribs can break. while i've heard stories of rib kids playing footbal... that would be too risky for me personally to allow (at this point). But Josie still wrestles with her older brother,and runs and falls.... there is just no tossing her on her back, or bear hugs or things like that.

i'm sure those other members with BOYS could give you even better advice and recommendations.

shawn
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Zoes Nana
Posted 2005-02-07 12:37 PM (#6870 - in reply to #6869)
Subject: Re: Any UK families?



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
I WOULD MORE DEFENIATLY AGREE WITH SHAWN....
AND SPEAKING FOR ZOE, THINGS NOT ONLY WILL PRETTY MUCH
PLAY WISE, REMAINED THE SAME,
MANY THING WILL BE ALOT BETTER....
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Ramona Ross
Posted 2005-02-08 1:46 PM (#6901 - in reply to #5539)
Subject: My daughter has to have a VEPTR operation...


Hi, I live in the UK and my daughter, Hannah, is 2yrs 10mths and has Goldenhar syndrome. She has scoliosis of the spine and fused ribs which we only found out about in July 2004. As a result it was decided by the consultant that she would be a good case to have this procedure. It has taken ages for the operation date to come through and is now scheduled for 21st Feb (although there is now a slight problem in the fact that the hospital has to make a presentation to their board of directors about cost etc etc as she will be one of first children in UK to receive this op. - therefore if they don't get the go ahead then it may be put off for a couple of months).

Anyway, it seems that Hannah is due to be a bit of a guinea pig over here as far as the procedure is concerned,(so we have no British parents to talk to) but I know that a few children in USA have had it done. I would love to hear from parents that have gone through the experience and how the children have coped (my main worries are that she will be impaired physically when at the moment she is a lively, happy child jumping,dancing and climbing - I am worrying about whether she will be able to continue doing most things).

How has everyone else coped? I don't doubt for a second that the operation is a big one and carries all the risks of any major op, but some reassurance would be good!

Hope to hear from people soon.

Ramona
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Ramona Ross
Posted 2005-02-08 1:56 PM (#6902 - in reply to #5539)
Subject: RE: Any UK families?


Hi, I have just posted a message on USA board and then realised there was one for UK - I am so pleased!

My daughter Hannah (2yrs 10mths) was born with Goldenhar syndrome and has scoliosis of the spine and fused ribs which we only found out about in July 04. Anyway she is scheduled to have VEPTR procedure on 21st Feb (although slight prob with hospital - not sure if will go ahead or not). She is under Nuffield Orthorpaedic Centre in Oxford and having op done at John Radcliffe in Oxford.

We are absolutely petrified over her having this done although we understand that it is important for her to do so. Our consultant Mr Wilson-MacDonald has spoken to and shown Dr Campbell in US the xrays and CT scans and he feels she is a very good case for surgery but I also realise that children here in UK are relatively guinea pigs as far as this procedure is concerned.

My main concerns were about her quality of life after (know that she will have to be careful) but wanted her to continue to be able to run, jump, climb and do all rough and tumble toddlers do!

Very stressful for us at moment as she has a twin sister and her op is scheduled 10 days before my due date with next baby!! The NHS certainly timed it well!!

Anyway would love to hear from other parents about to go through or that have been through procedure - my email is ramonaross@btopenworld.com which I check everyday, or I will log back on here again.

Hope to speak to someone soon
Ramona
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Zoes Nana
Posted 2005-02-08 2:32 PM (#6903 - in reply to #5539)
Subject: RE: My daughter has to have a VEPTR operation...



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
DEAR ROMONA AND FAMILY,

WELCOME TO THE VEPTR BOARD....

SPEAKING FOR OUR ZOE, I CAN TELL YOU THAT SHE HAS BEEN ABLE TO DO,
ALL THAT SHE DID BEFORE THE SURGERY, AND IT HAS TRULY ENHANCE HER LIFE
TO DO MORE....
IT IS A TUFF SURGERY, BUT OFFERS A HOPE LIKE NOTHING ELSE IN THIS WORLD
STILL CAN COMPARE TO....

THERE ARE AT LEAST ONE FAMILY THAT I KNOW OF THAT HAS BEEN COMING FROM UK TO THE STATES TO HAVE THE SURGERY DONE NOW FOR ABOUT 4 YEARS....HOPEFULLY WHILE I AM LOOKING IT UP, SOMEONE WILL JUMP ON HERE, AND
GIVE YOU THAT INFORMATION....BECAUSE I THINK THIS LITTLE GIRL, IS ALSO NOW GETTING HER EXPANSION DONE IN THE UK NOW ALSO.......
HOPE TO HEAR MORE FROM YOU...
AND I WILL GET BACK TO YOU WITH MORE INFOR....
GOD BLESS,
JOHANNA LAMBERT
PLYMOUTH, PENNSYLVANIA
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Zoes Nana
Posted 2005-02-08 2:50 PM (#6904 - in reply to #6902)
Subject: RE: Any UK families?



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
WELCOME TO THE ROMONA FAMILY....

I AM AFRAID I POSTED YOU A REPLY, BUT SOMEHOW ON THE WRONG PAGE, SO I WILL
JUST REPEAT MYSELF HERE....
AS WE FOUND WITH ZOE, SHE COULD DO MUST THINGS AFTER SURGERY, THAT SHE DID BEFORE,
AND IT TRULY DID, AND STILL DOES ENHANCE HER QUAILITY OF LIFE....

THERE IS ALSO A FAMILY FROM THE UK THAT HAS BEEN COMING TO THE STATES FOR A FEW YEARS NOW,
AND I AM PRETTY SURE ARE NOW GETTING THE EXPANSION IN THE UK...
I HAVE ASK THAT SOMEONE JUMP ON HERE AND GIVE YOU THE INFORMATION, I THINK THEY CAN BE OF
GREAT HELP TO YOU....
GOD BLESS, AND LIKE I MENTION WE LOOK FORWARD TO HEARING MORE FROM YOU....
JOHANNA LAMBERT
PLYMOUTH PENNSYLVANIA....
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Hannah's Mom
Posted 2005-02-08 5:04 PM (#6909 - in reply to #5539)
Subject: Re: Any UK families?



Expert

Posts: 2039
200025
Location: Springfield, Mo.
Wecome to all of you to this site. I agree totally with Shawn.
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williams family
Posted 2005-02-08 5:33 PM (#6910 - in reply to #6861)
Subject: Re: Any UK families?


hello trace so nice to hear from you. marfans is arare genetic syndrome.one copy of a particular gene which produces a protein called fibrillin is faulty. fibrillin helps strengthen connective tissue which includes the skin, ligaments and blood vessel walls.for chloe this means she cannot walk, has a mechanical valve in her heart, lens dislocation in both eyes, and the most worrying at the moment her severe scoliocis which is crushing her lungs.we dont have a appointment as yet her dr is trying to get bob cambell over from the states to do her op. chloes syndrome is life limmiting we were told she wouldnt live to her teens, but without the veptr we have only afew years, with the veptr if every thing goes to plan it could give her a few more years. her dr says the veptr hasnt been done in anyone like chloe before so we hope and pray she gets through this, she is a little fighter and lives life to the full. i am so glad your little boys op went well and he stays well. havnt got a email address yet not much good with computors when i get one i will let you know. hope to hear from you soon take care from tina.
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williams family
Posted 2005-02-08 5:44 PM (#6911 - in reply to #6863)
Subject: RE: Any UK families?


hello steve and mandy like you we are waiting for the veptr surgery for our little girl chloe who at 4yrs old has a 120 degree curve. we hope dr bob cambell will do chloes surgery as well, he is going to be a very busy man. i cant share any experience with you at the moment like you its a waiting game but i hope we can at some point. speak to you soon from tina &keith williams.
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candyman
Posted 2005-02-08 11:07 PM (#6916 - in reply to #6911)
Subject: RE: Any UK families?



Regular

Posts: 82
252525
williams family - 2005-02-08 5:44 PM

hello steve and mandy like you we are waiting for the veptr surgery for our little girl chloe who at 4yrs old has a 120 degree curve. we hope dr bob cambell will do chloes surgery as well, he is going to be a very busy man. i cant share any experience with you at the moment like you its a waiting game but i hope we can at some point. speak to you soon from tina &keith williams.


do you mind me asking where you are in the country
i know that there is one operation planned for around april time in nottingham with,bob campbell coming over for that would that be yours?

we asked aboutthe rough and tumble for our oli one reason is because his sister is severly mentally and phyically disabled and would not be able to understand that she has to be very gentle with him and it would be very sad if we could not let them roll around and play on the floor . heather is almost 10 and is a strong little girl so we are even now very carefull when they are playing together but we are very lucky that olis condition does not restrict him at all at the moment he runs around and really throws himself in to everything like all 2 year old boys do .

steve
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davies
Posted 2005-02-09 6:53 AM (#6922 - in reply to #5539)
Subject: Re: Any UK families?


2525
Location: Wales (UK)
Hello Oliver and Co.

Reuben had his first VEPTR in January and is back to his normal ways, jumping,climbing all normal things for a busy 2 yr old.
I was really scared that the operation would change him, but it has not. He knows somehow what he can and cannot do it is an amazing thing to see I can tell you!!!!

We live in Mid Wales. My home email is Ashmoor123@aol.com

If I can be of any help or if you have a zillion questions please ask I am only too happy to help as I was in your position a few weeks ago.

Love

trace
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davies
Posted 2005-02-09 7:00 AM (#6923 - in reply to #5539)
Subject: Re: Any UK families?


2525
Location: Wales (UK)
Hello Tina and Keith

We too thought that the Prof would have to come over from America but so many of the British surgeons are now licensed to do the operation.

Although I am not familiar with marfans, I have read alot on the VEPTR procedure so anytime you need any thing give me a shout.

Trace (Home no 01597 822930 if you want a natter)
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davies
Posted 2005-02-09 7:07 AM (#6924 - in reply to #5539)
Subject: British Families-YIPEEEEEEEE


2525
Location: Wales (UK)
Ramona

Hey there are suddently British families everywhere-great!!!!

Golly a new baby on top of all of this, thankgoodness the feamle of species can cope with more than one thing at a time.

Well as you would have read Reuben has got congenital scoliosis and hemivertabrae and his bottom curve was 80 degress and the top one i, well who knows!!! Anyway Veptr fitted and Reuben is thriving. 4 weeks ago today it was, boy time flies. He is as busy and as crazy as ever. We were told that being such a busy boy he would probably break the device at some point, this is nothing to worry about as it can't damage him. I am nervous when he is bombing off the sofa and being a crazy chap but he know what he cannot do at only 2 yrs and 1 month of age.

it is amazing, and all the children you read about are amazing and really fill me with inspiration.

As said previously my home email is Ashmoor123@aol.com and my home number isd 01597 822930 if you ever fancy a natter or answers to the many questions.

We are under Birmingham Childrens Hospital and are in contact with a family in Birmingham who's two yr old Son had the VEPTr in September.

take Care

trace
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tina &keith williams
Posted 2005-02-09 10:45 AM (#6927 - in reply to #6916)
Subject: RE: Any UK families?


hello steve and mandy, we live in bristol and will be going into the bristol childrens hospitial when we recieve the appointment. we to have a disabled son who is 23yrs old and can be a bit rough with her (he doesnt mean to) we dont have any young ones the next one from chloe is 16yrs. from tina
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josiejean
Posted 2005-02-09 11:13 AM (#6929 - in reply to #5539)
Subject: Re: Any UK families?



Elite Veteran

Posts: 1076
1000252525
Location: Silver Lake, Kansas
Ramona,

As for Josie, the surgeries/impants have not slowed her down one single bit!!!

her last surgery was just a couple weeks ago and two days after surgery she was climbing up onto the bed. pulling herself up by her arms and swinging her leg up onto the bed.. i am confident hannah will recover quite well and amaze you at her resiliency. as Johanna has said many times... their quality of life is greatly improved.

shawn
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williams family
Posted 2005-02-10 12:28 PM (#6973 - in reply to #6861)
Subject: Re: Any UK families?


hello trace, i have been looking at some of the pictures of children who have had the veptr procedure and all have been done by going through their back, chloes consultant said that he would have to "crack open her chest" do you know of anyone who has had it done this way ? iam abit confused now i think i should speak to her dr again. tina
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josiejean
Posted 2005-02-10 3:18 PM (#6982 - in reply to #5539)
Subject: Re: Any UK families?



Elite Veteran

Posts: 1076
1000252525
Location: Silver Lake, Kansas
i have personally never heard of that being done in the program.

shawn
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Cindy
Posted 2005-02-10 4:15 PM (#6986 - in reply to #5539)
Subject: Re: Any UK families?



Elite Veteran

Posts: 697
500100252525
Location: Alexandria, Virginia
Welcome to the Williams family and Steve and family.

My son, Ian, was 21 months old when he had the VEPTR surgery. We, too, were worried about limitations and what he could or couldn't do. Two and a half years later, he is a typical four year old. He runs and plays with all the other little boys and girls in his class. Unless you saw him without his shirt on, you would never know anything was different. I tend to be a little more liberal in what I allow him to do and his doctor has not put any restrictions on him. So far, so good. In fact, a year ago, Ian fell onto some hard concrete from about four feet (he was horsing around on some bleachers and mom was watching my one year old) up and broke his arm. His titanium rib was not impacted at all.

Take care,
Cindy
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Ross Family
Posted 2005-02-11 4:04 AM (#7009 - in reply to #5539)
Subject: RE: Any UK families?


Hi Trace, Williams family, Steve and Mandy

We had some bad news yesterday in the fact that after our consultant presented to the board of the hospital, Hannah's op has now been cancelled for 21st Feb. It will be done but not for a few months now. So frustrated, disappointd, upset - had really geared ourselves up for it and was hoping that in 3 weeks Hannah would have had it done and be back on the road to recovery - now feel like it is hanging over us again. However suppose I don't need to worry about going into labour whilst she is in hospital (was always going to be a risk!!)

For Williams family, We were told that Hannah would have an incision made into her back, ribs expanded and then the rods attached to the back of her ribs and under her arm (2 in total) - they haven't mentioned to us about having to crack her ribs open - perhaps with Chloe's condition they have felt that is the best way to do it, but I would speak to your consultant again to put your mind at ease - I know that we keep coming away from appointments feeling like we're not really sure we have enough info.

Trace, Cindy, Shawn, so glad to hear that all of your children are continuing to have the same quality of life after the procedure as had before - really reassuring to hear.Hannah has had a number of ops since she was born and has always recovered so quickly - real fighter - hoping this time will be no different.

Take care all, Ramona and Gavin
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