I have just had a second craniotomy for brain abscess. My first was a year ago. My husband has contacted the HHT center in St. Louis, hoping to have my right lung's AVMs eradicated with the coil treatment. I am hoping that someone who has had this done will share their experience with me because it sounds pretty scary to this brain-challenged patient. I'm told it took about nine months last year for me to regain completely my intellectual function. My father died of HHT (bled out from colon after years of fighting it) as did his mother and others in his family. Thanks to all responsible for the HHT sites. We would not have known about the HHT centers without the benefit of the former site. Since that knowledge may lead to my own solution, please continue to spread that info. One more brain surgery and I'll have to start a 12 step group!!
Blessings to all,
charlyn dumm, la grange, ky, usa

Hello to all!  I guess I knew many years ago because of the spots on my fingers, toes, lips and tongue as well as LOTS of nosebleeds that I had HHT after reading about it on the web.  I've been blessed with a great dermatologist who uses a laser that has basically eliminated all the spots and bleeding on my lips and most on fingers and toes.  I don't have my tongue done unless necessary because that's one spot that can really hurt!  Because of the new laser the other areas don't really hurt when treated but the results are so much better than the old lasers.
I've had surgery on my nose because of the bleeds.  It helped for a while but they came back rather soon.  I do use Afrin on a kleenex, saturate the kleenex really well and then stick it up my nose (ugh! ) on the bleeding side which helps to stop the bleeding faster.  Because of the nosebleeds my ENT sent me to Mayo Clinic in Rochester to have a complete workup.
I was shocked when the tests showed my liver was full of telangeiectasias and my lung had a very large PAVM.  They used 11 coils in a surgery the next day.  I never had any coughing up of blood or shortness of breath prior to the surgery so I didn't even know I had this!  The surgery was easy-I was awake and just did the breathing they told me so that they could place the coils.  They gave me some kind of "happy juice" so that there was no pain.  I'm home now and was told to take it easy for 30 days and then I have to go back in 90 days for another check up.  After that they said it would be necessary to come back every year for repeated scans and treatment as necessary.  Need to eliminate alcohol to keep the liver in as good a condition as possible.
Of course now I want to have my 20 and 16 year old sons checked out as well as my 5 brothers and 2 sisters----none have shown any of the signs of HHT which is really surprising based on what I've read.
I really want to get back to normal life and being able to do physical exercise withouth working about the PAVM.  Would love to talk/share with anyone else out there!

I found reading the messages on this board, really interesting.  I have been reading up on HHT recently and learning loads.  My GP knows absoutely nothing, except from the fact that I bleed lots.

I have a pretty good consultant in the ENT dept, but as far as the PAVMs are concerned, he says that there is no need to go looking for trouble.  I find that a little worrying especially after reading a couple of posts ago from jmfw that there had been no signs and they found trouble with liver and lungs.

Does anyone else have any experinces as far as PAVMs are concerned?

Tracey

" have a pretty good ENT,  but as far as the PAMVs are concerned, he says that there is no need to go looking for trouble." Reading that gave me sinister chuckle. I wish to heaven anyone had gone "looking for trouble" before trouble found me. Immediately after the PAVM treatment on Nov. 30 in St. Louis, I ditched my inhalers and all my asthma medication. I didn't have a moment of pain. I have many little avms which will be scanned for the rest of my life, I guess, because these little fish grow up to be big trouble making sharks. I definitely should have been scanned after the first brain infection, but no one knew to do that because the docs are learning, as am I. I will return to St. Louis in March to see how the baby lung AVMs are doing. I'm giving up brain surgery for Lent, so it's extra important to stay on top of this. We have to forgive our docs because this is a new area for them; it is up to us to keep them in the know. Blessings to all and  keep us posted re the new site.
Charlyn

No, I had my lung AVMs done in 2003/4, as did my two daughters, but neither of us have had new ones open up - we were last checked in Nov 2006.

Terry.

Sorry to hear that, sounds pretty scary