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  #1  
Old 27th September 2012, 11:11 PM
roundthebend roundthebend is offline
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Default New: Need advice about limited lung capacity

Hello

I am 50 yrs old (almost) and was born with saccrococcygeal teratoma. I have a severe scoliosis (lumbar), dislocated hips etc and have been paraplegic all my life.

I have not been under hospital care for anything since my early 20's when docs told me there was nothing more to be done. (Because of internal complications,it was decided when I was a teenager that surgery was not an option.)

Then, last year I had my first chest infection ever, which turned into pneumonia, and I was hospitalised for over three weeks. Since then my breathiing has been sporadically bad, sometimes it feels as if I have someone sitting on my chest. I admitted myself to hospital earlier this year with shortness of breath and pains, and I was basically told I was imagining things! Desite this I refused to give in and eventually ended up with them giving me a pulmonary function test which I had last Wed.

I was shocked to find the result: Total value 28%. I am also nocturnally hypoxic apparently (I get headaches on waking which disappear when I've been up a little while)

It has been suggested by the lung function guy my consultant may want to put me on BPAP at night. How does this work?Is it comfortable? Do you feel much better? more importantly is there anyone else out there with the kind of levels I have, and can they offer me any advice about how to proceed from here?

Many thanks
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  #2  
Old 27th September 2012, 11:17 PM
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tonibunny tonibunny is offline
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Default Re: New: Need advice about limited lung capacity

Hi there,

I can't answer any of your questions very well myself I'm afraid, but I wanted to welcome you - you're very welcome here

I'm sorry that you've been having such a rough time. One of our longterm members, Jean, is a BiPap user and I'm sure she'll be along soon to give you some advice. I do know that the BiPap is likely to be a big help in sorting out those headaches, and hopefully you'll feel a lot better in general once you start using it. Hang in there, we'll do our best to keep you cheered up

Whereabouts in the world are you?

Toni xx
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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Old 27th September 2012, 11:32 PM
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GillyG GillyG is offline
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Default Re: New: Need advice about limited lung capacity

Hi there

It's reading posts like yours that makes me realise how lucky I am to just have scoliosis

I'm afraid I also have no experience with BiPap - my lung function is poor but nowhere near as bad as yours Lack of oxygen will certainly be the likely cause of your headaches though, so the BiPap should help immensely with those
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Old 28th September 2012, 12:04 AM
roundthebend roundthebend is offline
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Default Re: New: Need advice about limited lung capacity

Thanks both of you!
tonibunny , Iam living in Wales.
Gilly, you don't know the half! My original tumour 'lurked' inside my coccyx and has now come back to get me! Apparently, teratomas can do this. Babies born with SCT these days have their coccyx removed, mine was way back in the dark ages when this info was not known. I now have a large pelvic tumour that cannot be treated surgically (it is convoluted and impossible to get at) or chemically (because the cell structure is too strong to allow chemo to get through)

So, in some ways the lung function is the least of my problems
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  #5  
Old 29th September 2012, 09:59 PM
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tiffany.m tiffany.m is offline
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Default Re: New: Need advice about limited lung capacity

Oh gosh you poor woman - you have permission to hit me for that I hate hearing your so brave etc - we also have another member on O2 at night and I thiiiink it's tracy1? I am sure she said it helps immensely

xx
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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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Old 30th September 2012, 10:53 PM
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Amazed Jean Amazed Jean is offline
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Default Re: New: Need advice about limited lung capacity

I have spoken to Roundthebend under seperate cover by email. I do want to assure everyone that lousy lung function is in fact treated with supplemental oxygen and continued at night with adding a Bipap machine which breathes for you enough to rest your lungs. The hardest part to the whole mess for me was admitting that my bedroom is no longer the sexy little get away but has become my haven for breathing and resting. (God, I have even added a TV so I can go to sleep with Home Decorating programs!) You have to fiddle with settings and trying masks that fit correctly but it does all come together and certainly does away with the sleep induced headaches. You must stay under medical care in order to change settings etc. but it is a great way to gain more control over your life. Alllen has even adjusted to my paraphenalia and we are still a "loving' couple - ah hem - if you get my drift. We have even had some great laughs about the machines! I will gladly help anyone chat it over if you PM me or email me.
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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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  #7  
Old 1st October 2012, 11:22 AM
roundthebend roundthebend is offline
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Default Re: New: Need advice about limited lung capacity

Quote:
Originally Posted by Amazed Jean View Post
I have spoken to Roundthebend under seperate cover by email. I do want to assure everyone that lousy lung function is in fact treated with supplemental oxygen and continued at night with adding a Bipap machine which breathes for you enough to rest your lungs. The hardest part to the whole mess for me was admitting that my bedroom is no longer the sexy little get away but has become my haven for breathing and resting. (God, I have even added a TV so I can go to sleep with Home Decorating programs!) You have to fiddle with settings and trying masks that fit correctly but it does all come together and certainly does away with the sleep induced headaches. You must stay under medical care in order to change settings etc. but it is a great way to gain more control over your life. Alllen has even adjusted to my paraphenalia and we are still a "loving' couple - ah hem - if you get my drift. We have even had some great laughs about the machines! I will gladly help anyone chat it over if you PM me or email me.
Yes, Jean sent me a lovely reassuring e-mail and it allayed my panic considerably. I think the worst thing for me was being given the figure by the lab man and then him saying 'your doctor will be in touch, goodbye'. I had all these questions I needed answering and thought I'd have to wait forever to have them answered...My thoracic physician's secretary has just this minute been in touch and I have an appointment to see the doc on Friday afternoon.

And, don't worry about me hitting you, Tiffany! I don't think I have enough energy right now

Jean, having just read your post, I am hopeful that I will have more energy for...ahem...romance real soon!
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