Hi everyone. I’m brand new here. I discovered the group after countless searches online to try to find information and people who are going through what I am. I found myself reading posts from this forum quite often. I will try to make my story as short as possible. Basically, I’ve always been a bit on the ‘weird’ side it seemed physically, and I grew to like being a bit more flexible in most of my joints, etc. My own curiosity led me to ask the doctor about this in 2012, which by then I was already 29 (I’m 32 now). I was diagnosed as probable Ehlers Danlos Syndrome Type 3 (Hypermobility Type). At my request, I had an echo to check my aortic root, which was requested based on my reading of the condition. My aortic root measured at 3.5, which was in the ‘normal’ range.
What I found odd about the test is the lady that done the test stated it my aorta appeared was dilated for someone my age, but the results, which I got in the mail, were normal. As someone that enjoyed being active and frequented the gym, I called and asking about weight training, and if that had any effect. I was never given an answer.
Now let’s fast forward to July of this year. I had frequently asked my current doc (a different one than in 2012) to do a follow-up echo, to which he said it wasn’t needed. I finally convinced him to do one despite him saying it would be normal. My reason for this was I had started some heavy duty weight training late in 2014 and wanted to venture further into this with peace of mind.
Unfortunately, my aortic root was dilated at 4.4 according to the echo. After freaking out, I did research on what all this meant, and about surgery that might eventually be needed (aortic root), etc. I’ve never had any kind of surgery or anesthetic that put me to sleep, and I will say surgery, along with anesthetics are my biggest fears in life – period. This fear was intensified by having a reaction to a dental shot several years ago. These past couple weeks have literally been the worst of my life. I’ve never had such life-crippling anxiety quite like this before, and I am on an antidepressant which helps tremendously with anxiety already.
I was given a CT scan last week to “make sure” the echo was right, and it showed my dilation at 4.0cm and not 4.4. After seeing a cardiologist for the first time last week, he stated he had looked at 6-7 images and seen nothing over 3.9 and basically told me I have nothing to worry about right now, and it would be monitored with yearly echocardiograms. He told me I could continue doing everything I was doing before, but “don’t over-do it”. So that’s where I’m at. I’ve decided to get a second opinion from a cardiologist that has more experience in connective tissue disorders, which I figured I’d do regardless to be on the safe side.
I don’t have a family history of aorta problems but I know with Ehler’s Danlos, a dilated aorta isn’t uncommon based on my reading. I’ve been afraid to go to the gym since Aug 19 when I heard the news. I’m afraid to do many of the things I once did. What I’m most afraid of is the surgery, or the potential for it. I’m ultimately afraid I would die on the operating table. While I’ve read this isn’t typical, neither is a connective tissue disorder or someone needing an operation like this either. It doesn’t help that I’m in the Kansas City area, and there doesn’t seem to be a lot of doctors (regardless of specialty) with much knowledge over my condition enough to give any advice. I can’t find any kind of endovascular procedures for an aortic root, which would ease my mind quite a bit, as it seems only open heart surgery can be done to fix this.
Is it remotely possible that an aortic root measurement of 4.0cm at age 32 will never require surgery? Is it realistic? I’ve decided to make changes – no more heavy lifting, straining, etc at the gym. I’d like to again do things like cardo and light lifting eventually. I’m too afraid right now as I haven’t really heard any answers from someone I’m confident in. I don’t want to make things worse if there really is a chance I might never need surgery. While I know no one can tell me for sure about what is going to happen, is the hope that I may never need surgery reasonable? I’ve read about the average increases per year, etc… it just doesn’t seem reasonable. It appears I’m just in a waiting game until it’s “big enough” to operate on. That’s very crippling and frustrating. : ( I posted to ‘heart talk’ as it seemed like quite a few previous topics were posted here as well on these issues..
What I found odd about the test is the lady that done the test stated it my aorta appeared was dilated for someone my age, but the results, which I got in the mail, were normal. As someone that enjoyed being active and frequented the gym, I called and asking about weight training, and if that had any effect. I was never given an answer.
Now let’s fast forward to July of this year. I had frequently asked my current doc (a different one than in 2012) to do a follow-up echo, to which he said it wasn’t needed. I finally convinced him to do one despite him saying it would be normal. My reason for this was I had started some heavy duty weight training late in 2014 and wanted to venture further into this with peace of mind.
Unfortunately, my aortic root was dilated at 4.4 according to the echo. After freaking out, I did research on what all this meant, and about surgery that might eventually be needed (aortic root), etc. I’ve never had any kind of surgery or anesthetic that put me to sleep, and I will say surgery, along with anesthetics are my biggest fears in life – period. This fear was intensified by having a reaction to a dental shot several years ago. These past couple weeks have literally been the worst of my life. I’ve never had such life-crippling anxiety quite like this before, and I am on an antidepressant which helps tremendously with anxiety already.
I was given a CT scan last week to “make sure” the echo was right, and it showed my dilation at 4.0cm and not 4.4. After seeing a cardiologist for the first time last week, he stated he had looked at 6-7 images and seen nothing over 3.9 and basically told me I have nothing to worry about right now, and it would be monitored with yearly echocardiograms. He told me I could continue doing everything I was doing before, but “don’t over-do it”. So that’s where I’m at. I’ve decided to get a second opinion from a cardiologist that has more experience in connective tissue disorders, which I figured I’d do regardless to be on the safe side.
I don’t have a family history of aorta problems but I know with Ehler’s Danlos, a dilated aorta isn’t uncommon based on my reading. I’ve been afraid to go to the gym since Aug 19 when I heard the news. I’m afraid to do many of the things I once did. What I’m most afraid of is the surgery, or the potential for it. I’m ultimately afraid I would die on the operating table. While I’ve read this isn’t typical, neither is a connective tissue disorder or someone needing an operation like this either. It doesn’t help that I’m in the Kansas City area, and there doesn’t seem to be a lot of doctors (regardless of specialty) with much knowledge over my condition enough to give any advice. I can’t find any kind of endovascular procedures for an aortic root, which would ease my mind quite a bit, as it seems only open heart surgery can be done to fix this.
Is it remotely possible that an aortic root measurement of 4.0cm at age 32 will never require surgery? Is it realistic? I’ve decided to make changes – no more heavy lifting, straining, etc at the gym. I’d like to again do things like cardo and light lifting eventually. I’m too afraid right now as I haven’t really heard any answers from someone I’m confident in. I don’t want to make things worse if there really is a chance I might never need surgery. While I know no one can tell me for sure about what is going to happen, is the hope that I may never need surgery reasonable? I’ve read about the average increases per year, etc… it just doesn’t seem reasonable. It appears I’m just in a waiting game until it’s “big enough” to operate on. That’s very crippling and frustrating. : ( I posted to ‘heart talk’ as it seemed like quite a few previous topics were posted here as well on these issues..
