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  #1  
Old 20th December 2012, 09:58 PM
F's mum F's mum is offline
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Default bronchoscopy update

Hi all, today the little one had her bronchoscopy and it threw up some things. She has tracheomalacia and severe malacia of her bronchus intermedius. Basically airways floppy and flat and liable to collapse. They showed me photos and her windpipe is so flat it's scary. They couldn't get all the way into right lung as airways so thin.Now got to wait for ct scan to decide course of action. She also has a pectus excavatum (dented chest) as well as scoliosis and they think that the ct scan will show how much this combination is compressing her lungs and other organs. They think getting spine straight will help airways but because of issue with airways her recovery from spine op will be rougher than average. Respiratory docs are meeting with spinal docs to decide what to do. Feel so sorry for my poorly girl as she gets so anxious now even having pre med doesn't stop her freaking out in anaesthetic room
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X-ray of F's curve Feb 2012 41 degrees. Upon casting july 2012 curve had progressed to 47 degrees with compensatory curves of 28 above and 36 below. Due to have magnetic rods inserted in April as Main curve has reached 58 degrees and compensatory curves over 40. Didn't have MAGEC rods in the end as has possibility of MRI's in the future due to having NF1. So she has sliding growth rods along the lines of Davies Dominoes.

Last edited by F's mum; 21st December 2012 at 05:42 AM. Reason: typos
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  #2  
Old 20th December 2012, 10:11 PM
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titch titch is offline
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Default Re: bronchoscopy update

I'm so sorry to hear that there are further complications, but I'm glad that they have thoroughly investigated it and will hopefully be able to come up with a good plan of action to deal with it. I can't imagine how stressful this is for you, but know that we are always here for you, even if all we can do is listen and offer virtual hugs
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Diagnosed at 15 with 50 curve, but probably juvenile IS. Fused in kyphosis (by non-specialised ortho) with a/p surgery T10-L2 @ 21, posterior only revision surgery to correct kyphosis @ 29. Now 38 with further revision surgery and extension of fusion to sacrum required to correct residual kyphosis, restore lordosis and address spinal stenosis.
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  #3  
Old 20th December 2012, 10:18 PM
F's mum F's mum is offline
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Default Re: bronchoscopy update

Thanks Titch, just replied to you on my other update too. I feel like every time we go to the hospitals she comes away with a new complication to add to her ever growing list. Xx
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X-ray of F's curve Feb 2012 41 degrees. Upon casting july 2012 curve had progressed to 47 degrees with compensatory curves of 28 above and 36 below. Due to have magnetic rods inserted in April as Main curve has reached 58 degrees and compensatory curves over 40. Didn't have MAGEC rods in the end as has possibility of MRI's in the future due to having NF1. So she has sliding growth rods along the lines of Davies Dominoes.
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  #4  
Old 20th December 2012, 11:12 PM
VanessaR VanessaR is offline
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Default Re: bronchoscopy update

I am sorry to hear that your little one is having extra complications, but glad to hear that the doctors are working together on it. Sending virtual hugs !!!
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Mom to 4 year old Kelsey , diagnosed with Early onset scoliosis , 48 degree curve July 9,2012, first cast on Aug. 7 , 2012
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  #5  
Old 21st December 2012, 08:43 AM
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Default Re: bronchoscopy update

answers are good, plans can be made when answers are known!

i'll keep you both in my thoughts! hugs!
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  #6  
Old 21st December 2012, 09:22 AM
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Default Re: bronchoscopy update

Gosh how stressful for you. Maddy freaked out in the anaesthetic room for each of her 10 surgeries. She had some sessions with a psychologist based at the hospital which helped with other issues so it might be something you could try to help her come to terms with what is happening. Best wishes. x
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Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.
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  #7  
Old 21st December 2012, 10:34 AM
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Default Re: bronchoscopy update

Oh, the poor little soul I also have pectus excavatum which I always assumed was just part and parcel of the deformed ribcage that scoliosis caused but now realise that it's a separate condition I hope they can come up with a useful treatment for your daughter
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  #8  
Old 22nd December 2012, 07:18 PM
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Default Re: bronchoscopy update

Oh you poor people it must be so hard for her and so hard for you to see her go through this. Hope they can find some way around it all x
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I'm Tiff, I'm 17, my consultant's Mr Gibson at RNOH Stanmore and I was diagnosed in November 2011 and I had my spinal fusion October 3rd 2012 and am now fused T2-T11 with amazing correction (60T/40L to 30T/40L).
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  #9  
Old 22nd December 2012, 07:20 PM
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Sandra2e Sandra2e is offline
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Default Re: bronchoscopy update

Just to say HI and how sorry I am to hear your little one is going through so much, hard enough to deal with one thing but with other complications, but Thank God the Drs are on top of this and I am sure the Very Best of Care will be giving.

I know its easy to say 'don't worry' when its your child you just cant help BUT worry.

But with all the Drs and the Support you will get on this site, will help you SO very
much, you will never be alone, never be afraid to ask any questions as I am sure you have learned the people on this site, are just MINDS OF INFORMATION...


Sending you LOTS of love & Best Wishes to you and your lil one

Sandra xxx
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Sandra mother to Karen diagnosed with scoliosis at 8 yrs first Spinal Fusion Dec '09 12 yrs, Jun '11 section of rod detached from spine, had to be removed. April '12 had surgery to remove all metal work from her spine due to constant back pain Jan 13 Costoplasty to remove some prominent rib hump.
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  #10  
Old 7th January 2013, 09:06 PM
F's mum F's mum is offline
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Default Re: bronchoscopy update

Hi. Thanks for all your replies. We have the cut scan booked for the end of this month and a spinal appointment too so will have some updates for you at the start of Feb x
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X-ray of F's curve Feb 2012 41 degrees. Upon casting july 2012 curve had progressed to 47 degrees with compensatory curves of 28 above and 36 below. Due to have magnetic rods inserted in April as Main curve has reached 58 degrees and compensatory curves over 40. Didn't have MAGEC rods in the end as has possibility of MRI's in the future due to having NF1. So she has sliding growth rods along the lines of Davies Dominoes.
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  #11  
Old 7th January 2013, 10:04 PM
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Amazed Jean Amazed Jean is offline
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Default Re: bronchoscopy update

Whew! You and your little one are being handed an awful lot to cope with. Sending hugs for both of you! I think it is great that they are taking their time and being very careful with her. Better now than latter. Can I suggest a bottle of wine for Mom? Any bottle and a warm bubble bath. You are doing great so far but need a break - I'd bring a bottle and run the tub for you but I am too far away. Extra hugs though!
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I am 61 years old and the resident SSO fossil. I live in Oklahoma,USA with my husband Allen. We have one daughter Jae and she has three kids.Our grandkids are: Aidan is8. He's the one pictured in my current avatar. Jenna Jean is 7 and Ryan Allen is just 4 It's full time chaos here! I was diagnosed in 1965 at 14 years with Kyphoscoliosis and 2 curves measuring 68 and 63 degrees. My last measurements were in 2004 at 155, 88 and 55+ degrees. I have never had surgery or bracing so I now am on full time oxygen and use a Non Invasive Ventilator at night. at night.
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