Hello, new here

[Brenda623]

Hello everyone, my name is Brend and I live in West Virginia, USA. I was just diagnosed with HHT. I was diagnosed with a large cerebral AVM with an aneurysm, in Jan 2007. My mother passed away in Dec of 2004 from a ruptured  brain AVM. I was set to have brain surgery on May 4th, but I met a Dr, White on the web who asked me to send all of my medical records to him so he could see if I had HHT. Dr, White called me yesterday and told me that it does look like I have HHT, he said I have every symptom. I have had nosebleeds since I was a child, to the point they have to be packed. I have an AVM in my pulmonary artery, stomach, lungs and possibly my liver. I have had polyps removed when I was 25 years old and again when I was 33. I also have Poly cystic Kidney disease. I am so knew to all of this and I am happy that I found this site. I have 2 kids 19 and 21, I also have a 1 year old grandson.......I stated young......lol. I am 38. I have 2 brothers and 1 sister. My sister has nose bleeds weekly since she was a little girl. I am so worried about all of my loved ones having this disease. My son and daughter do not have nose bleeds so does that mean they don't have HHT? I know I have a whole lot to learn about HHT. I want to know if this is curable? What is the average life span of a person with HHT? My doctor spoke with me on the phone yesterday and he didn't sound very optomistic, he said he would talk to me about everything in person, when I go to my next visit. I have just gone on and on so I will close now. Thanx for listening to me.
Brenda  

[Jess]

Hiii~ I think I can help you with some of your questions!

The first thing I want to tell you is to take a deeeep breath! We can't let ourselves get that dreading feeling when we think about family members; it's gotten to the point in my large family where cousins will meet after a year or so and say, "Been diagnosed yet?" For the most part, even people who have it can get away with few symptoms. There's always hope.

As far as heredity, from what I've read (and the example my grandfather's family set) it's a 50-50 shot. Just remember, there are always treatments, and new medicines are becoming available all the time! There was once a time when we didn't even know HHT was a legitimate disease; now we can diagnose several different types!

I suggest you read up at HHT Foundation International | Osler-Weber-Rendu. It'll help you with most of those questions, and you can always come back with other concerns. I think the best thing for those of us who are young (I myself am 20) to remember is that we don't really even have to worry about it for quite a while, in most cases. Plenty of time to take a deep breath, and to let our ever-expanding awareness of science catch up to our particular needs. And if you need anything (other than really hardcore sciencey stuff), let me know. I'll be glad to see if I can help.

~Jess

[Matt]

I completely echo Jessica's sentiments, and welcome to the site 

[labgirl]

Hello all...good to have stumbled on this site. Hope to give and get some info! Am from the USA (Virginia).

Had known for many years that my paternal grandfather had HHT (as well as a first cousin who suffered from a ruptured cerebral AVM at age 10), but had no personal experience with this until this Feb. Evidently my 84 yr. old father also has this, but thus far is fine except for an occasional nosebleed. Of his 4 kids, I'm the only one who's exhibited any symptoms and this was unexpected (I'm a very healthy 46 yr. old). Suffered a minor stroke. The telangiectases seem to be confined to the brain, although the CT lung scans were iffy. Have had no ill effects thus far other than several creepy deja vu events that are unexplained but have had these for years now. May be unrelated.

Anyway...during the stroke, I had extreme light-headness and a kind of "out of body" experience (autoscopy), plus my left leg suddenly went limp. After several minutes, the affected leg and my stomach muscles violently spasmed and after a time it subsided. Since then am just fine and resumed my moderate physical exercise and work schedule within 4 days of the event. If anyone else has experienced stroke with their HHT, please let me know. Apparently, my brain has several of these smallish telangiectases and unbeknownst to me, one "went off" at an earlier time. Fortunately for me, it seems none will be debilitating or fatal.

[Matt]

Welcome to the site

I am thankful that I have never experienced a stroke, however it sounds like a very scary experience

[labgirl]

Hey Matt,

Wasn't too scary (the stroke experience), but that's likely because I was at work at the time (in a hospital), so help was very nearby. It was more of a bizarre sensation. Since I'm the analytical sort, it was more like being part of an experiment and I was too busy being fascinated by it to be overly concerned. My only concern was not knowing how "far" the stroke would progress. Didn't really want to lose bodily functions in the hallway on the way to the ER if you know what I mean.

As it turned out, the weirdest sensation came one week earlier than the actual stroke. At that time, was sitting in the manager's office and suddenly noticed that the manager was "shrinking" before my eyes. It only lasted a few seconds, and was feeling slightly nauseous and light-headed at the time. I just laughed off the "lilliputian" event at the time. Only after the stroke did I connect the earlier event with the intracranial bleed. Since then, no lilliputians in view. 

[philbarto]

About 8 years ago I had several TIAs or mini strokes like you said not too serious limp down one side for a couple of minutes .The hospital even after cat scans could not find any apparent reason for this no bleed on the brasin or anything and it is only around this time that I find myself believing the HHT being the link . The Hospital put me on Aspirin to thin the blood which, to us HHT sufferers , is like green kryptonite is to superman .Since being diagnosed withh HHT thankfully no recurrance of the TIAs or mini strokes but it has me wondering if I should be scanned for the brain AVMs as Ive heard other HHT sufferers refer to.
regards   Phil

[Matt]

Meant to reply to this again a while ago, good to hear that there was no reoccurance philbarto, though you do raise a point, it may be worth checking just in case as you never know.

Also, thanks labgirl from your recounting of the experience, what with being in the hospital at the time, I'm sure that would indeed have been a great comfort

[philbarto]

Ive just had the PAVM done yesterday by putting a small coil in the defective blood vessel it involved laying on your back flat for about two hours while they fiddled to get the wire up thro the groin under local anesthetic to the offending vessel located thro the heart and into the lung and place a couple of small coils to stop the blood entering . this was followed by a further two hours flat on the back before given the freedom to move about . whilst I was there I got the consultant to do a brain mir scan at a later date  to look for any irregularity in the head. They will scan regularly now for further PAVMs in the chest . Ive just got to have my mouth lasered on 29 th July and hopefully everything will be as big a success as the nose closure.   regards to you all