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AVM Survivors Network

HHT testing

I have been so focused on the AVM that lives in my brain and the side effects of recent gamma that I really haven’t put to much thought into my up coming HHT testing. Today it hit me. The reason I’m having and ECG, chest x-ray and blood work is because they are looking for more AVM’s. OMG!!!

When are you having the HHT test done? It’s my understanding that people with HHT have a higher than normal (if that’s the right word?) chance of having AVMs and most often in the brain, liver, and lungs. Don’t take my word for it, I just remember reading that when I was researching HHT. Just ask the doctors straight up if that’s what they’re concerned about. Probably not a bad thing? Easy for me to say, I know. Good luck and I’ll be sending good thoughts your way.

I have a full morning of tests on the 29th then meet with a new doctor (internist?) who specializes in HHT in the afternoon. I don’t know what I was thinking except they told me if I have HHT then our children will also have to be tested. It honestly never occurred to me that i could have more than one AVM.

Trish said:

When are you having the HHT test done? It’s my understanding that people with HHT have a higher than normal (if that’s the right word?) chance of having AVMs and most often in the brain, liver, and lungs. Don’t take my word for it, I just remember reading that when I was researching HHT. Just ask the doctors straight up if that’s what they’re concerned about. Probably not a bad thing? Easy for me to say, I know. Good luck and I’ll be sending good thoughts your way.

What’s HHT?

What’s HHT?

A person with HHT has a tendency to form blood vessels that lack the capillaries between an artery and vein. This means that arterial blood under high pressure flows directly into a vein without first having to squeeze through the very small capillaries. This place where an artery is connected directly to a vein tends to be a fragile site that can rupture and result in bleeding. We usually call a blood vessel that is abnormal in this way a telangiectasia (tel-AN-jee-eck-TAZE-ee-ya), if it involves small blood vessels. We tend to call it an arteriovenous malformation (AVM) if involves larger blood vessels. So, an AVM might be thought of as a big telangiectasia. The basic abnormality in the blood vessel is the same.
From HHT.org
We ate uncertain if my AVM is congenital or hereditary (HHT) so now we do the testing.

erin lyn hurley said:

What’s HHT?

Just looked it up. All 4 of my kids meet the criteria for having it as do I. All of us have 3 of the criteria. Now I have a few questions. Which doc would I take them to for my questions? We have a pediatrician, a gastro doc, a neurologist, a neurosurgeon, a dermatologist, a hemotologist, a cardiologist, a pulmonary doc and a few others. Who do I start with? Can you have HHT with a bleeding disorder? Should we be tested? Will anyone even test us since we have a bleeding disorder? Between all of us, we have von Willebrand’s Disease, low factor 8, GERD, 1st degree AV block, a-fib, eczema,AVM, hydrocephaly,early Lev-lenegre syndrome, shunt, papilledema, intestinal problems,polyps,headaches, and a few others. They all affect each other.

I’m not sure who you would start with. My nuerosurgeon recommended the testing but it was my family physician that made the referral. We live in Ontario and they have a HHT clinic at St Michaels Hospital in Toronto. They will test me first and if I have it our children will be referred to a children’s hospital for further testing. Our son also has been diagnosed with Wolffe Parkinson White Syndrome, an electrical problem inhis heart. Fun times here!!

erin lyn hurley said:

Just looked it up. All 4 of my kids meet the criteria for having it as do I. All of us have 3 of the criteria. Now I have a few questions. Which doc would I take them to for my questions? We have a pediatrician, a gastro doc, a neurologist, a neurosurgeon, a dermatologist, a hemotologist, a cardiologist, a pulmonary doc and a few others. Who do I start with? Can you have HHT with a bleeding disorder? Should we be tested? Will anyone even test us since we have a bleeding disorder? Between all of us, we have von Willebrand’s Disease, low factor 8, GERD, 1st degree AV block, a-fib, eczema,AVM, hydrocephaly,early Lev-lenegre syndrome, shunt, papilledema, intestinal problems,polyps,headaches, and a few others. They all affect each other.

Yeah. I love those electrical problems too. My heart is forgetting how to beat. I’m in 1st degree AV block all the time now. I throw about 1000 PVCs a day and spend most of the day in afib. Any kind of stress and I’m eating nitro like candy. Last time I wore the monitor, they actually called me and asked what I was doing. I said sitting in the waiting room while my son’s head was being operated on. They said good you’re at the hospital then. I busted up laughing. I wish the doc would give me a defibrillator so my heart would stay in a good beat. My heart is already getting bigger. I don’t understand why a doc is willing to risk massive emergency care for a patient when a little pacemaker would’ve solved the problem especially when other conditions will almost certainly kill them during emergency care. Been told that if I have a heart attack or stroke, I’m dead. Meds they give heart will make me bleed& stroke out and meds for stroke will make me bleed out and have a heart attack. Wonderful,huh?

Erin, when I asked my neurologist about my concerns with my daughter, he said that I should first talk to her pediatrician. I believe a pediatrician can refer a child for testing if they meet the criteria.




erin lyn hurley said:

Just looked it up. All 4 of my kids meet the criteria for having it as do I. All of us have 3 of the criteria. Now I have a few questions. Which doc would I take them to for my questions? We have a pediatrician, a gastro doc, a neurologist, a neurosurgeon, a dermatologist, a hemotologist, a cardiologist, a pulmonary doc and a few others. Who do I start with? Can you have HHT with a bleeding disorder? Should we be tested? Will anyone even test us since we have a bleeding disorder? Between all of us, we have von Willebrand’s Disease, low factor 8, GERD, 1st degree AV block, a-fib, eczema,AVM, hydrocephaly,early Lev-lenegre syndrome, shunt, papilledema, intestinal problems,polyps,headaches, and a few others. They all affect each other.