HHT question on potential AVM’s in stomach/throat?

Hi all,
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.

  1. Brain - checked in london hospital 2 years ago and no further AVMS found👏
  2. Lungs-also checked in london hospital and no AVM found :ok_hand:
  3. Liver, kidney, pancreas, gall bladder- also checked in london hospital 2 years ago and all clear👍
  4. Nose and throat ???
  5. 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::thinking:. They admitted it would be a matter of trial and error :open_mouth::face_with_raised_eyebrow:.
    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

SmilerDi
:smile:

@PulmonaryHeartHHT

Di,

OMG! It isn’t helpful when the hospital don’t know what they are looking for, is it? Can you get a referral back to wherever you were seen before?

In terms of helping, I can only say that when I was reading lots of posts to try to categorise them and create the various groups to try to help people stick together, I am equally sure I read of stomach and intestines as areas that can be impacted by HHT. I also remember the apparently classical sign of HHT being nosebleeds and tiny spots on the lips, so nose, mouth and throat do seem susceptible as well.

I hope some of the HHT peeps can share where their issues have been found.

Very best wishes,

Richard

Thanks for your feedback and helpful thoughts Dick. Yes, I’m looking forward to some of the HHT folks perhaps enlightening me on this one🤔

Kind regards
SmilerDi

Hi there! You might try www.curehht.org. Blessings as you continue!

1 Like

Thankyou for sharing your thoughts :+1: