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

Symptoms & Treatment
#1

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

#2

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

#3

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

#4

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

1 Like
#5

Thankyou for sharing your thoughts :+1: