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Date: 02.06.2012
From: Sunny Carrie

Subject: JRA fiber optic anaesthetic

Ok won't bore, get to point:

Arthritis since 15mths old now 35. In every joint, eaten every joint, joints not eaten slowly being replaced. Neck pretty fixed, chin goes right on to chest and can lift neck back to neutral position, can not look up.

Ok so another operation another day, been doing this since aged 8. So why post?

I have a son, one years old, a smiling, happy clever and healthy little man, a child who I never thought I would have. I have a husband who has arthritis in every joint, together we make up 1 parent as we take care of son in stages, hubby does an hour in morning, I do hour in morning then son naps, then do it again all day this way!

So ok I get from last op an Airway Alert card cos my neck is pants and tubbing me tricky. Any one else had this here? Any one had to be intubated awake via fiber optic tube up nose? How has anaesthetics gone for you if you have a rubbish neck? Let me know, please. I have never been bothered about my life all my years of major surgery, every year since I was 8 I have done this and never cried or been frightened, I am frightened and I may have to say that is enough surgery now, I would rather let myself get very ill, deformed , need more care but know I will be alive with my child and husband :( Just need positive words from others with pants necks who have annual surgery.
Many many thanks for any help x
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Date: 04.06.2012
From: Deborah

Subject: Re: JRA fiber optic anaesthetic

Hi sunny carrie,
Congratulations on having your son I am sure you are so happy.


I don't have this problem I have pa and a painful neck were sometimes can't turn it etc but my mum had, her neck was completely worn away until it just sat on her shoulders and she could not move it right/left or up/down it was completely fused it never affected her breathing as far as I am aware although I am sure she had quite a lot of pain with her neck but she never said.

she did have a anaeesthetic this way through her nose for another complaint she did say it was not pleasant but it never affected her afterwards.

I do hope the experience of my mums although not the same can help you in some little way.

I can only try and understand how frightened you must feel and hope that everything works out for you and wish you and your family all the best for the future Deborah xx
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