Unknown disease requiring trach

[yovinamaka]

I got a trach the first of December, 2006 due to a restriction of my airway. Â*My larynx is inflammed and a "web" of tissue was blocking my airway. Â*I also have a benign mass on my thyroid. Â*My ENT removed the tissue and gave me the trach. Â*My sed rate and C-reactive rates are high, but I do not have any markers for an autoimmune disease such as Rheumatoid Arthritis, Wegeners, Lupus, etc.
The tissue is not cancer and the biopsy gave no information about what it might be. Â*
I saw a post from Anna-Maria about a rare disease that affects women, but she did not say what it was.
Any information would be appreciated. Â*

Jonna
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[lovemymak]

Hi Jonna,

I'm sorry to hear about your resent diagnosis. I hope you can find some answers soon. You should email or PM Anna-Maria to see if she can give you some more answers. Here is her post you are talking about.

Quote[/b] ]My name is Anna-Maria (from Skövde, Sweden) and I’ve just found this site. So I thought I would better present myself, and hope I will meet people with similar experiences to discuss with…

I have been using a trach since Christmas time. My doctors suspect that I have got some really rare disease, which only affects women (ironically very healthy in all other respects). The disease is systemic and affects the trachea – sometimes I get inflammations (without any known reason) and it starts to swell. I think there is also ugly scar tissue developing if I don’t get treatment directly. So right now I undergoing laser surgery every seventh week and I have to use the trach as a precaution measure. I had some problems getting used to the trach and have really hated it. But it’s getting better… In the beginning I was really scared for bacteria, bur everything has gone smoothly and I haven’t got any infections – puh! The problem has got more psychological – I feel a bit embarrassed for the trach and I try to hide it in different ways. My therapist thought I would try to get in contact with people with similar problems, so I wouldn’t feel so lonely with my thoughts and worries. I don’t know any other people with trachs and have never met anyone with the same disease. So if there are anyone out there like me – you are most welcome to contact me! (If you prefer e-mail: amt@maticon.se)

http://www.tracheostomy.com/iB_html/non-cgi/emoticons/luck.gif Sarah