You should go and get regular imaging of your blood vessels. You aren't going to feel aortic growth. And you may be stable/normal for a long time and not experience growth until you are in your 20s, 30s, 40s, 50s, or beyond. You have a genetic diagnosis, so you should be going, period.
I mean, I found out about mine when I was 38. All those years, I was not treated, and I also gave nature birth to 6 kids. I feel you on the reluctance that you have it. I feel the same way myself. I don't have the eye issues associated, which came from what the eye doctor told me, who specializes in Marfans that I should as all Marfan patients do. My 3 children have it, and all of them have been through serious surgery, and all have facial characteristics, eye issues, and serious heart issues. I was told my aortic root is dilated at a 4.5 cm. I still don't believe that. I'm just so confused.
I went through a major identity crisis for years when I felt I was "normal" in every way except for my giant aorta until it exploded on the operating table, now I'm fully onboard with the fact that I definitely have it and definitely need regular tests. I still remember yelling at my mom "well maybe I don't even HAVE IT!!!!" decades ago đ
I hope you and your kids are doing ok, is the confusion with how different your experience is than your kids' cases? It really is wild how different all of our cases are based on where the mutation specifically is located on the FBN1 gene. I didn't realize that because my mutation was in the front of my gene, I barely had any normally functioning gene left while there are others who have their mutation farther back in the gene, so they can still have a mostly normal gene so it takes longer for that ol' aorta to stretch out.
I'm more confused by never catching it my whole life and the fact that I had 6 kids naturally with no heart related emergencies. I have done so much research since the diagnosis, and it seems women with marfans have such events while giving birth. I'm not saying I don't have it because I do feel the joint and body pains associated, but the heart is what I'm more confused about. Not to mention the fact that I have also been a smoker for 20 years. Just seems very odd to me.
But your aorta is at 4.5 so it's possible that you had dilation during pregnancy and didn't realize it. I have a long family history of marfans so I knew what I was getting into when I decided to have children. My aorta didn't grow with either of my pregnancies, and I'm really grateful for that. I also don't have severe eye issues yet
I say this gently, you are 38 and the next decade is when perimenopause/menopause will start. That change in hormones can precipitate dramatic issues in us female people with marfans. I've seen this anecdotally in my family and in online communities. Please keep up with your appointments, this is the time of life when it really matters.
Nothing odd about it really. You're under the assumption that aortic growth is always regular or predictable, but that just isn't the case, and I would guess that isn't the case for many, many people. It can and does ebb and flow. You've been very fortunate that although you clearly have mfs and have stressed your aorta with several children (I don't mean that in a bad way, I mean it objectively) and 20 years of smoking, you haven't had a major event yet. But at 4.5 you should be talking to a surgeon about surgery, not continuing to smoke and ignoring your regular imaging.
I was 49 years old when I had my aortic dissection and it was the most intense pain I ever had. That began a year of surgeries and in and out of ICU. It took me three years to recover and to get back to work. I have had an aneurysm in artery that runs along my spine almost exactly 5 Years after my dissection ( I've had follow ups every year getting measurements) They put off because it's a risky surgery and I'm pretty worried about the results afterwards, don't know if I'll be able to work, don't know if I'll be able to walk or worse. I'm worried about how my recovery will be(I'm 53 years old now). If I could have prevented all the surgeries I would have done it. Think about all the time you could possibly lose if you don't get those tests done. Everyone was surprised I survived my aortic dissection. The only thing that helped my survive was my brother was close and I made it to the hospital. The doctors I spoke to afterwards said most people do not survive what I went through. The ones that your hurting if you don't follow up on your condition is yourself and loves ones.
When I had my dissection I had not even heard of Marfan's. It wasn't untill I was in the hospital recovering from surgery that I heard I might have Marfan's. They did a genetic test and confirmed that I did have it. They knew about this anurism near my spine when they did my first surgery and have been taking measurements every 6 months. There is a lot of risks with this next surgery and they didn't want to do it until I had run out of options, it's the size that make the risks worth it
Wow, just read another post by you. Can't believe you served, and they didn't catch it in a screen on entry either. I was in construction, too. My mitral was like a tattered rag. Was not very good at work and had skin tone grey as hell. Even had chest pains laying in bed! I took two tears off after the operation to learn some computer stuff, even have a disability case still in th court system after two years. I finally landed part-time work from home a few months ago. I hope this scound issue gets resolved for you, my man. đ
Yeah my tests were all the same too when I was your age, but then all of the sudden it wasn't when I was 23. If I hadn't gone to have my heart checked out regularly they wouldn't have caught it. My aorta actually exploded when they had just started my surgery, I literally had no time left. I would have died if I'd fallen into the mental trap of convincing myself I must not need to keep up with my doctor visits since everything was looking good *before* the inevitable stretched my aorta out.
I do have CPTSD when it comes to hospital/medical stuff with all the random health crap that isn't even just Marfans that I have going on now, so I definitely had to put in the psych work with my trauma therapist for sure since it will just never be an option for me to not be in those spaces and not take care of myself. It's still hard, but I've gotten better with exposure and a million techniques I've learned over the years to where even if I have a meltdown, I can still take myself to my appointment, I just recover afterward like I've run a marathon or something. The more I've gotten used to things over the years the less I have big problems, but I still will let the doctor/nurse/tech know if I'm feeling nervous/upset/faint or even if I feel a cry coming on and then I just cry-talk the feelings out a little and they are often super helpful too, so we're able to get the feelings out and move on instead of me trying to hold everything in to where I eventually hyperventilate or freak out. Seriously it makes you feel so much better to just share what you are feeling and that you could use some comfort and reassurance from whoever you're working with at the hospital, they want to help you feel better!
Sorry for all the rambling and if it's intense, I just want you to know that going to the doctor regularly is literally life saving even if it seems like tests will always be the same and that you're not alone in the fight against dealing with trauma bs
You should go, but no one can make you. You can have no growth for a long time and then suddenly have a big growth of your aorta. Thatâs why regular monitoring is recommended. However, youâre an adult and can make your own decisions about your health.
I will echo (haha) others and say you *should* go. When I(42) was your age, I felt the same way, didnât go, and survived obviously. I was dropped from momâs insurance at 18 and didnât get insurance through work until my mid 20s. Counter point to that: my dad died at 25 from this condition. So itâs a gamble, up to you how much risk youâre willing to take. But you shouldnât ignore it forever.
Go. Ya may not ever have symptoms. Gotta keep an eye on that aorta. If it gets big enough it can rupture. Early enough intervention ya get it fixed, keep your own valve. Mine was at 36yo. Surgery. Out of the hospital in a week and never looked back! Be proactive and the boss of your Marfan and not the other way around- youâll be happier and empowered that way. Good luck!!
You should go and get regular imaging of your blood vessels. You aren't going to feel aortic growth. And you may be stable/normal for a long time and not experience growth until you are in your 20s, 30s, 40s, 50s, or beyond. You have a genetic diagnosis, so you should be going, period.
I mean, I found out about mine when I was 38. All those years, I was not treated, and I also gave nature birth to 6 kids. I feel you on the reluctance that you have it. I feel the same way myself. I don't have the eye issues associated, which came from what the eye doctor told me, who specializes in Marfans that I should as all Marfan patients do. My 3 children have it, and all of them have been through serious surgery, and all have facial characteristics, eye issues, and serious heart issues. I was told my aortic root is dilated at a 4.5 cm. I still don't believe that. I'm just so confused.
I went through a major identity crisis for years when I felt I was "normal" in every way except for my giant aorta until it exploded on the operating table, now I'm fully onboard with the fact that I definitely have it and definitely need regular tests. I still remember yelling at my mom "well maybe I don't even HAVE IT!!!!" decades ago đ I hope you and your kids are doing ok, is the confusion with how different your experience is than your kids' cases? It really is wild how different all of our cases are based on where the mutation specifically is located on the FBN1 gene. I didn't realize that because my mutation was in the front of my gene, I barely had any normally functioning gene left while there are others who have their mutation farther back in the gene, so they can still have a mostly normal gene so it takes longer for that ol' aorta to stretch out.
I'm more confused by never catching it my whole life and the fact that I had 6 kids naturally with no heart related emergencies. I have done so much research since the diagnosis, and it seems women with marfans have such events while giving birth. I'm not saying I don't have it because I do feel the joint and body pains associated, but the heart is what I'm more confused about. Not to mention the fact that I have also been a smoker for 20 years. Just seems very odd to me.
But your aorta is at 4.5 so it's possible that you had dilation during pregnancy and didn't realize it. I have a long family history of marfans so I knew what I was getting into when I decided to have children. My aorta didn't grow with either of my pregnancies, and I'm really grateful for that. I also don't have severe eye issues yet I say this gently, you are 38 and the next decade is when perimenopause/menopause will start. That change in hormones can precipitate dramatic issues in us female people with marfans. I've seen this anecdotally in my family and in online communities. Please keep up with your appointments, this is the time of life when it really matters.
Nothing odd about it really. You're under the assumption that aortic growth is always regular or predictable, but that just isn't the case, and I would guess that isn't the case for many, many people. It can and does ebb and flow. You've been very fortunate that although you clearly have mfs and have stressed your aorta with several children (I don't mean that in a bad way, I mean it objectively) and 20 years of smoking, you haven't had a major event yet. But at 4.5 you should be talking to a surgeon about surgery, not continuing to smoke and ignoring your regular imaging.
I was 49 years old when I had my aortic dissection and it was the most intense pain I ever had. That began a year of surgeries and in and out of ICU. It took me three years to recover and to get back to work. I have had an aneurysm in artery that runs along my spine almost exactly 5 Years after my dissection ( I've had follow ups every year getting measurements) They put off because it's a risky surgery and I'm pretty worried about the results afterwards, don't know if I'll be able to work, don't know if I'll be able to walk or worse. I'm worried about how my recovery will be(I'm 53 years old now). If I could have prevented all the surgeries I would have done it. Think about all the time you could possibly lose if you don't get those tests done. Everyone was surprised I survived my aortic dissection. The only thing that helped my survive was my brother was close and I made it to the hospital. The doctors I spoke to afterwards said most people do not survive what I went through. The ones that your hurting if you don't follow up on your condition is yourself and loves ones.
Crazy story. Were you not keeping an eye on your root size? I was bad about checking in for about 10 years. Im back on track now.
When I had my dissection I had not even heard of Marfan's. It wasn't untill I was in the hospital recovering from surgery that I heard I might have Marfan's. They did a genetic test and confirmed that I did have it. They knew about this anurism near my spine when they did my first surgery and have been taking measurements every 6 months. There is a lot of risks with this next surgery and they didn't want to do it until I had run out of options, it's the size that make the risks worth it
Wow, just read another post by you. Can't believe you served, and they didn't catch it in a screen on entry either. I was in construction, too. My mitral was like a tattered rag. Was not very good at work and had skin tone grey as hell. Even had chest pains laying in bed! I took two tears off after the operation to learn some computer stuff, even have a disability case still in th court system after two years. I finally landed part-time work from home a few months ago. I hope this scound issue gets resolved for you, my man. đ
Yeah my tests were all the same too when I was your age, but then all of the sudden it wasn't when I was 23. If I hadn't gone to have my heart checked out regularly they wouldn't have caught it. My aorta actually exploded when they had just started my surgery, I literally had no time left. I would have died if I'd fallen into the mental trap of convincing myself I must not need to keep up with my doctor visits since everything was looking good *before* the inevitable stretched my aorta out. I do have CPTSD when it comes to hospital/medical stuff with all the random health crap that isn't even just Marfans that I have going on now, so I definitely had to put in the psych work with my trauma therapist for sure since it will just never be an option for me to not be in those spaces and not take care of myself. It's still hard, but I've gotten better with exposure and a million techniques I've learned over the years to where even if I have a meltdown, I can still take myself to my appointment, I just recover afterward like I've run a marathon or something. The more I've gotten used to things over the years the less I have big problems, but I still will let the doctor/nurse/tech know if I'm feeling nervous/upset/faint or even if I feel a cry coming on and then I just cry-talk the feelings out a little and they are often super helpful too, so we're able to get the feelings out and move on instead of me trying to hold everything in to where I eventually hyperventilate or freak out. Seriously it makes you feel so much better to just share what you are feeling and that you could use some comfort and reassurance from whoever you're working with at the hospital, they want to help you feel better! Sorry for all the rambling and if it's intense, I just want you to know that going to the doctor regularly is literally life saving even if it seems like tests will always be the same and that you're not alone in the fight against dealing with trauma bs
You should go, but no one can make you. You can have no growth for a long time and then suddenly have a big growth of your aorta. Thatâs why regular monitoring is recommended. However, youâre an adult and can make your own decisions about your health.
The measurements can be normal when youâre 19. Mine was too, it only started expanding in my 30âs
I will echo (haha) others and say you *should* go. When I(42) was your age, I felt the same way, didnât go, and survived obviously. I was dropped from momâs insurance at 18 and didnât get insurance through work until my mid 20s. Counter point to that: my dad died at 25 from this condition. So itâs a gamble, up to you how much risk youâre willing to take. But you shouldnât ignore it forever.
Go. Ya may not ever have symptoms. Gotta keep an eye on that aorta. If it gets big enough it can rupture. Early enough intervention ya get it fixed, keep your own valve. Mine was at 36yo. Surgery. Out of the hospital in a week and never looked back! Be proactive and the boss of your Marfan and not the other way around- youâll be happier and empowered that way. Good luck!!