Scoliosis Surgery & Marfan Syndrome

Our 7 yr old daughter has Marfan Syndrome and has just had surgery to insert growth rods to correct a scoliosis. This is our journey so far. If you are facing similar surgery we trust this will help you.

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[rcsmith2]

Naomi has her 7th Spinal Operation this week ..

[Mabelita1612]

hi. i am from Peru, i am 22 years

i have scoliosis too 55 degrees curved and i am worried

soon i going to have my own scoliosis surgery but still i don't know where

please you can help me?

where you had your surgery? (donde tuviste tu opercion?)

how many dollars you spent? (cuantos dolares gastaste?)

por favor ayudame tengo q operarme pronto porque mi escoliosis esta afectando mi salud

God bless i understand English less. Thanks but I speak Spanish

[rcsmith2]

Naomi has her surgery at the Royal National Orthopaedic Hospital in London. We pay for Healthcare through our taxes in the UK, so we dont know how much the surgeries cost. Naomi has her 5th spinal rods extension next week.

[megandurrrr]

Wow, your daughter is a real fighter. :)

I'm almost 15 and I was first diagnosed with scoliosis in late 2006 with a 57 degree curve and went into surgery during June of 2007 with a 67 degree curve and limited air capacity along with severe asthma (not a good combination) haha. But anyways, I'm having complications from my surgery now, going through extensive pain management.

But I hope that your daughter is doing great with her recovery. :)

[rcsmith2]

Sorry you are in such pain, that must be tough, hope the medics can find a solution. Naomi has only a little pain down one leg about once a week, we are not sure why and it doesn't last long. She is fully mobile and copes well at main school.

[crummy671]

My daughter is 1 1/2 yrs old, at 10 months for was diagnosed with subluxlens in both eyes. We immediately began testing her entire body for abnormalities and so far she is clear but we are still waiting for the genetisist to contact us. What were Naomi's earliest signs that triggered you to look further? Did she appear healthy & normal when she at birth? I'm sorry to ask such questions, Naomi's story is so amazing that it gives the optimism I need for my daughter.

[rcsmith2]

At birth naomi had a dipped pectus,very loose joints that clicked a lot.Once she was walking she had turned-out feet and we started to suspect Marfan syndromeafter my experience with a couple of patients.I wanted to know how her heart was as this was my biggest worry. So we asked to have genetic tests and heart,eye,spine. 2 years later the blood tests confirmed Marfans. Naomi's spine and eyes changed in that time so we were upset but not surprised. Her aorta started to widen last year.God bless

[parisgurl55]

She is a really strong young girl!!! I have marfans but have been one of the lucky ones and have not yet had surgery. but in the future will have a aorta transplant. good luck for the future!!! your daughter is very beautiful!!!

[wintye12]

Hello

What a beautiful and brave girl you are. Your parents must be so proud of you. You are very inspiring. I told my daughter about you, she is 5. she has Turners Syndrome, one of the main problems with that is lack of growth. Thank you for sharing your story. Take care and good luck for next surgeries.

With love

Claire

[gagadream111]

I also have scoliosis (10-15 degree curve) and marfan syndrome. I'm going to the hospital for a heart ultrasound at the end of this minth and if my aorta has ballooned 5 cm or more, I have to go in for surgery.

[Schmerzstiller]

@rcsmith2 i wish you all blessings and good luck on earth for your daughter, i am 25 years old and have marfan syndrome too, the last weeks i spended in hospital cause i had a big lung surgery i had an pneumothorax. also my heart function isnt very good and my eyes are getting worse every year... so my advice to all marfan patients is to let check their heart function at least every year! its very important for your life and can rescue it. (sorry my english isnt that good, i am from germany)

[ScoliGirl14]

Awww!!! I luv ur vid!!!! Ur lil girl is soo brave!!! How old is she now?? I'm 15 now. I had my surgery January 12,2011. I had Scoliosis & Kyphosis, which causes ur spine to hunch forwards. My surgery was a Posterior & Anterior op, which means it was back & front. Which is y i spent 16 hours in the OR!!! I was in the hospital for a looong time!!!

[TheMath2011]

u no wat I HAVE SCOLIOSIS 2 U NO AND MY FINAL 1 IS NEXT SUMMER B4 8TH GRADE WOOOOOOOOOOOOOOOOOOOOOOOOOOOOO­OOOOOOOOOOOO BUT ILL BE VERY SCARED AND NERVOUS

[maddieboo11]

Hi there, thank you so much for the video, I am 16 and i too have Marfan Syndrome and i had Scoliosis surgery in July 2010. I hope everything is well! Good luck for the future! xx

[Simszimz]

I had my scoliosis surgery 12 days ago, i had a 52 degree curve and a 58 degree curve and it went perfect:) i'm almost completly straight now :D Good luck for the future and sorry for my bad english

[teckiemom]

A very strong girl! My husband has Marfan's & luckily his scoliosis was only moderate so he responded to brace therapy but several of our Marfan friends have had the same type of surgery. Glad she is doing well & continued good wishes that she has a strong happy life. Greetings from accross the pond in Oregon, USA.

[marthapeter]

i'm so happy she is ok, you are blessed, in 2005 we lost my best friends brother to marfan and in 2007 almost lost her and her child, i also have scoliosis and almost died from the surgery in 94, freaked my parents out.... i'm glad that her surgery went well, life is precious, and we don't realize it till it's gone, may god bless you and your family !!!

[Jettybooboo]

Hi Naomi my name is Kirstie I live in New Zealand and I am 12 years old and found out that I was dignosed with Scolioss and need Spinal Surgrey. I am guessing you are from England or somewhere in the Uk. How old are you now? Anyway I wondererd IF YOU want to be a freind of mine on youtube and talk to each other.

From Kirstie