TRACHEOTOMY JEWELLERY SITES?
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TRACHEOTOMY JEWELLERY SITES?

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Posted by Eyeswideopen on May 16, 2008 at 02:09:01:

Hello everyone (especially Bill and Jeff), I'm so sorry that I haven't been in contact for over a year now especially since I had so much support from everyone on this forum when I was planning my MMA (which went ahead in November 2006). My only excuse is that I have had a terrible time since having the MMA. It didn't work for me at all and I ended up having to have a temporary tracheotomy in May last year. This cured my OSA completely but unfortunately I was very depressed by it and my husband didn't support me at all and hated it. I had it closed up in October last year and since then have tried a mouth brace which pulls my lower jaw further forward but this doesn't work. I've had another sleep nasendoscopy and the doctors here in the UK think that the culprit is my epiglottis which is flopping over my windpipe and causing my obstructions. This makes sense as I don't snore any more or sleep with my mouth open but just wake up suddenly. I also don't have any oxygen desats as I wake up immediately before my oxygen can drop. This happens about every five minutes all through the night and I am at my wits end again. The doctors want to do something called an epiglottopexy (which lazers the epiglottis to stiffen it up and stop it from flopping over the windpipe) and they also want to remove my lingual tonsils (these are at the back of the tongue not the normal tonsils at the back of the throat). The thinking is that my tongue is big too and pushes the epiglottis backwards so by removing the lingual tonsils it should take the bulk of the tongue away. I was ready to have both these operations done but then discovered I was pregnant again (at the grand old age of 43!). Needless to say they won't operate under general while pregnant. They are worried about my lack of sleep (which a recent sleep study showed was horrendous) and have offered my another tracheotomy which will either by temporary until I have the baby or permanent if the epiglottis op doesn't work. They will do the trach under local anaesthetic to lessen to the effect on the baby. Has anyone out there had an epiglottopexy or lingual tonsils removed and what are your thoughts on this. Also has anyone had a trach done under local (any thoughts on this too). I am very scared and hate the thought of having a trach done again but I can't continue as I am. My last trach was just a hole in the throat and I had a small plastic tube that went in only a few millemetres and a plastic plug so I could plug it during the day and open it at night. The trach was almost flush to the skin and could easily be hidden with jewellery (but still my husband hated it).

Sandman - you very kindly gave me the addresses of two sites last year of people who made jewellery for tracheotomies. I've lost these e mails and I wondered if you could be so kind as to give me the sites again. I'm hoping that my husband and myself will find it easier to deal with the trach if I could get some nice jewellery to cover it up with.

Sorry again to everyone for not being in touch for ages - my excuse - extreme sleep deprivation, a tracheotomy, and a small toddler and a very non-understanding husband!

Any thoughts on the epiglottis procedure would be much appreciated and also any sites on trach jewellery.

I will post again very soon.

L xxxx

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PLEASE ONLY CLICK THE SUBMIT FOLLOW UP BUTTON ONCE!!. Thanks, Sandman

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