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Brain Matters

Well, after several months of minor, but quite annoying health issues I was diagnosed with HHT — also known as Hereditary Hemorrhagic Telangiectasia. It is a genetic disorder (given to me by way of my Dad’s gene pool) of the blood vessels which affects about one in 10,000 people. The tendency is for the body 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 having to squeeze the very small capillaries. This place where an artery is connected directly to the a vein, tends to be a fragile site that can rupture and results in quite a bit of bleeding. These abnormal blood vessels are called telangiectasis, if it involves small blood vessels. If it involves larger blood vessels it is called an AVM — which could be thought of as a big telangiectasis. I have one way up inside my right nostril. Lovely. This will have to zapped off with laser surgery in order to correct. Back in ’95 an AVM was discovered in one of my lungs and had to be corrected with surgery, but I was not diagnosed with HHT then and I haven’t thought much of it sesne.

However, before this will be corrected we have to address my brain. A catscan revealed what was, at first, thought to have been a stroke. yikes. Then it was suspected that I might have one or tow AVM’s in my brian. YIKES! So, after much anxiety, I had an MRI-MRA performed yesterday. I received some good news today with the results — no AVM’s in my brain!!!! But there are 2 contusions. ? I will be seeing a neurologists next week to discuss those and why I have them.

Having HHT means that an individual will need to have his/her body “screened” ever 2 to 3 years. Screening invloves MRI’s, blood tests and those fun things known as colonoscopies! FUN! not. Anyway, as long as I stay on top of things all should be ok.

Anyway, looks like my brain is ok with some concern. Now it is on to the cardiovascular and blood levels — then focus on the nose. Until am done with the screening I am to delay all dental procedures. So I view this as a break from gum grafting and yet another excuse to not bother with bar bells and stair masters! So, am feeling a great deal of relief. Almost passed out at the clinic as they withdrew blood — cause I am a spaz. But it was freaking me out to have a genetics team of doctors discuss my brain, heart and worrying blood levels. I did not cope well. I was going nuts all day today as I awaited the results of my brain scan. The good news was so good to receive, but I feel like a migraine is coming on. Those of you who suffer from them will know what I mean. I hope I am wrong — but I am normally on the money. Migraine is about to hit. Oh joy. At least tomorrow is Friday.

Oh, and how about this war? UGH!

well, at least there is no brain surgery in my immediate future.

March 20, 2003. Uncategorized.

One Comment

  1. Gwen replied:

    I have been searching blogs to find people interested in HHT. Our family has been greatly impacted by this little-known disease, and after years of feeling helpless and hopeless, we’ve seen drastic improvement thanks to the work of the HHT Foundation and the health-care professionals at the HHT Centers of Excellence worldwide. My husband has gone from a hemoglobin of 6.4 to well over 16! He is able to walk and jog, feels optimistic and almost never has a nosebleed after months of projectile bleeding, blood transfusions, iron infusions and multiple procedures all due to HHT. For information about the latest advances in HHT, go to the Foundation’s web site: http://www.hht.org

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