I would be grateful for any feedback from any of you folk diagnosed with HHT? ( I was diagnosed with HHT following a ruptured brain AVM and a life full of nosebleeds).
Upon my HHT diagnosis I was told by the specialist in London that there were 5 body areas wher it would be critical to check that no other AVMs existed.
- Brain - checked in london hospital 2 years ago and no further AVMS found👏
- Lungs-also checked in london hospital and no AVM found
- Liver, kidney, pancreas, gall bladder- also checked in london hospital 2 years ago and all clear👍
- Nose and throat ???
- Stomach and intestines.???
The london hospital sent me back to my local hospital for these last 2 areas to be checked and tested. I attended 3 appts 18 months ago and it became apparent that local hospital have no experience of HHT nor AVMs and really don’t know what to do to test for them:roll_eyes:. They admitted it would be a matter of trial and error .
As Covid hit hospitals before they came up with their best guess plan , I am now waiting in limbo for my local hospital.
So in the interim I am wondering if any of you have had similar experiences, and can offer any helpful advice or experiences ?
Thanking you in anticipation