Hi Christine,

If your nosebleeds are that bad, I would certainly advise you to have Young's procedure.  I haven't had it, but I've only once lost so much blood as to need a transfusion, although it bleeds several times daily.

Best of luck!

Terry.

Congrats Matt on your 5th BD, and a job well done   

Thanks

TSHG

Hi

I have problems with my mouth

the roof "is like a seive" direct from the ENT Doctors mouth, just what i needed to hear

and i have a large bleed spot just behind my top 2 front teeth

when my mouth bleeds its a nightmare almost has bad as my nose

last year my ent surgeon tried something new with me and my son

sylastic plastic splints stitched into the nose to cover the septum

not very comfortable at first in fact very painfull for the first 2 weeks

but that said has cut the nose bleeds by 95%, just get the odd ooze now and not often

hope they can do something simalar for my mouth

cheers all

So, a about ten years ago my sister was diagnosed with PAVM's and has had numerous embolizations on them, the doctors all said that she didnt have HHT as there was no family history of it and she didnt have any of the symptoms. About 4 years ago she had a seizure, and it was discovered that she had two cerebral AVM's, she had a craniotomy for one and Gamma Knife for the other. It was then decided that genetic testing for HHT should be done, she had tests and it came back saying that she had a mutation of the ENG gene that hadn't been seen before so they couldnt confirm if she had HHT or not and recommended that other family members should be testing.
We got those test results back this week, my mother and I both share the same gene change as my sister, but my dad and brother dont. Now, me my mam and my sister all have red dots all over our skin, on our lips and around our noses, i suffer from  random nosebleeds...as does my mother, my sister doesnt really have them. I am convinced this is HHT, how can it not be? My mam and i are due to have ct scans and Mri scans to see if we have any AVM's.
our gene change is in the C.889T>C (whatever this means) Ive entered this into google and the first thing that comes up is the HHT mutation database...
I have no idea what to think, im scared of how this is going to impact my life and what it means for my future. Someone please help me.

Hi Colin, welcome to the site.