Does anyone know of any doctors in England who treat adults born with TOF ? Im having a few problems and my consultants cant find any reason for my sensations in my neck, chest and oesophagus. Im wondering if i have Achalasia or damage to the nerves. Has anyone ever experienced this?
Im going to see my consultant to ask for a referal for a second opinion. I just want to get to the bottom of this.
I had two dilatations last oct and they said there was a slight bleed but no tare , im wondering if this could be the cause of my pains? They say not!!
          Faye xx

Hi Faye,
This is a rather late response. Have you got to the bottom of your pains/sensations in your neck, chest and stomach? How are you doing now?

It was thought that I might have achelasia but that was ruled out with an endoscopy. I was treated by Mr Duffy in Nottingham. He is a cardio-thoracic surgeon. They checked cos a barium swallow showed incredible narrowing around the cardiac sphyncter at the bottom of my colonic transfer. What they did find was a polyp by my pyloric sphincter (no symptoms or hint of seriousness). They tried to romove it to test it but it got away, never to be seen again!

It would be great to hear from you.
Best wishes,
Sophie

Chestwise I see Professor Maurice at Castle Hill Hospital near Hull- he’s a world expert on cough and his focus is on reflux and cough which most TOFs will have. He has a number of TOF patients, and certainly has improved my quality of life. Not sure it’s the bit of the body you’re struggling with but I’d recommend seeing him- I didn’t realise how much reflux i got till I saw him- he does a score sheet and i was one of the highest scores he’d seen!

Professor Maurice is going to be speaking at the Adult TOF conference on 16th October this year at the Grimstock Hotel, Birmingham. Would you be interested in comming?
Sophie

Yes, glad it’s in Birmingham rather than Brighton!

Brilliant!