420324 tn?1203044402

HHT / Lip AVM Bleeding

My wife was diagnosed with OWR / HHT early in her childhood (She's now 65) and the only symptoms she had were frequent nosebleeds, some of which were severe enough to require hospitalization, cauderizing and sometimes transfusions to replace the lost blood.  

She currently has a small AVM on her lower lip that has only recently burst and began bleeding profusely - as did the nosebleeds she experienced. It is very difficult to self-treat since if she allows it to dry out OR if she treats it with lip moisturizers and it forms a scab, when she smiles, the scab opens and it bleeds again. Her neurosurgeon (She has an untreated AVM on the rightt side of the dura.) has suggested that she contact a plastic surgeon to determine what, if any treatment can be used to repair it.

My question is simply this: Is surgery the best treatment for a surface AVM in this location or are  there other techniques / procedures available?
3 Responses
Avatar universal
She is incredibly lucky to only have nose bleeds until so late. Generally symptoms tend to worsen sometime in the 40's (I am 21, and an HHT patient. My 63 year old father is an HHT patient, my 70+ year old aunt is an HHT patient, and my grandmother died of blood loss 13 years ago)... Has she been to a center of excellence? I am assuming you are in the US, but if you are not I believe there is a center in London. There are several centers of excellence in the US: Yale, St. Louis, California, and more... They are experts in testing AND treating HHT, from brain AVMs to liver/lung problems, and even slight bleeding...
The answer to your surgery question is, possibly. There are steps that I would recommend taking before you look at that type of surgery. Has she tried laser cauterization? My father's nose was fairly under control until about 10 years ago, when silver nitrate cauterization just ceased to be strong enough. He now has an ear eye nose and throat specialist who works with laser cauterization once or twice a year, and it helps. I cannot go so far as to say that he never bleeds anymore, but he is no longer losing multiple units of blood. The only way to eliminate the problem is to remove the AVM, they literally go in and cut the veins and seal them. That's not recommended, it can cause more damage than the bleeding in some cases, and in others it just makes other sites bleed more because of the added arterial pressure. If i was you, i would begin by finding an HHT doctor. They will want to scan your wife's lungs, liver, and brain to make sure she doesn't have any life threatening AVMS. They will also be able to help with blood loss.
It sounds to me as if her doctors are not familiar with HHT so let me make a few suggestions common to the patients. Caffeine and Alcohol are blood thinners, and make us bleed more. Aspirin (and Advil and anything besides Tylenol or codeine) is also a blood thinner and makes us bleed more. Extreme amounts of garlic and vitamin e (like in a supplement) can also make us bleed more. Obviously, blood thinners also make us bleed more (warpharin, etc)... I wish your wife the best of luck; you can live well with HHT if you have the right medical team and treat it aggressively.
1389523 tn?1279831189
she can see a dermatologist and have the lip one laserd off many have had this done and it works great! have them consult with an HHT treatment center! and you can also get information from hht.org or join on FB one of the many sites there! I am recently diagnosed with HHT and am one of the few that the gene has not been detected yet!
Avatar universal
My sister drinks alot of alcohol is this bad for her HHT?
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