Hi to everyone, my name is Faye im 33yrs old and was born with tracheo oesophageal atresia/fistula. Im really after some advice as ive recentley had two dilatations and now getting weird sensations in my neck and my chest and my doctors are baffled. If there is anyone who could shed any light on this i would be very grateful for your advice. I had a billary diversion and partail gastrectomy 5yrs ago for reflux .
Ive been reading all the posts on this websites and if i can answer any questions to new mums i will try!
And yes children born with tof will always have a barking cough, I still have mine and get very wheezy,chesty and bunged up when eating.
Im thinking of all your children and wish them all the best for the future. I have a 5yr old boy called Jamie who is well, i was worried he would be born with the same condition but hes fine.
If there is anyone from Plymouth ? xxx

Hi, this might not be much help but check out part of the i’ve never talked to a tof thread. . . Quote” The only probelms i really have are that I find my throat tightens when i get nervous and have recently developed quite severe lower chest pains and am being referred to the hospital but no know seems to know what it is, i’m sure its related though!” i too have just recently at 23 had some chest pains but attribute it to smoking but maybe sarah from the other thread might be going through something similar.

all the best

Hey Faye,
      I know I am only 13, but I think I get the same weird sensations in my neck and chest as you. I have never gone to the doctor about them, because me and my mum have never really been that bothered about them. Also mum has heard that quite a few TOFS get these sensations. So I wouldn’t be that worried about them if I were you. And trust me coming from me that is a lot, because I am probably the biggest worrier in the world. Ask anyone-I worry about anything and everything. Oh but an up side it that I am glad to hear I will always have my TOF cough!
  Shannon

Hello to all that have replied , I have been diagnosed with FIBROMYALGIA. Its took over a year but ive got there!!
Hello to Shannon, I hope you are well , Were you born with TOF and OA? What operations have you had to have?
I had a Colon transplant twice and lots of other ops too.
Do you have lots of scars? If you do dont let them worry you sweetie, be proud of them.

If you want to ask me anything your welcome. 

Take care .  Faye xxx

Also a message for Adele,  i hope serena is doing well. xxxxx

I get a chronic central chest pain all the time- I attribute it to chronic inflammation of the trachea. As we’re so rare I suspect there’s a variety of bits that get sore due to our design faults that don’t commonly get sore. My throat gets sore due to reflux burning my throat/ vocal chords. I would guess some of it is due to chronic acid from your stomach burning bits of your innards and making them chronically inflamed.