Scared Stiff About Dilated Aortic Root

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pearjas

VR.org Supporter
Supporting Member
Joined
Aug 30, 2015
Messages
44
Location
Missouri
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..
 
Hi Pearjas, Sorry to hear about your diagnosis. 4cm is only considered slight enlargment, carry on with life & don't worry about it until you are told its time. Weight training is a bad idea with aortic enlargment, something I've had do give up myself. Cardio is a good idea as long as you don't push too hard & no sprints or intervals. I was told mine is 4.1cm last year but is fairly stable so I'm waiting until it's time before I worry about it now, however I did freak out about it for six months before I realised the stress is not worth it.
 
Easier said than done, but why worry about something you can do so little about. I had an aortic aneurysm and had no idea until I went into valve surgery and the surgeon told me about it. I've learned through my own experience in this process, you kind of have to give yourself up to the situation you're in. I was in the waiting room to get my valve replaced for fifteen years. I took it easy but mostly I just lived my life. I got tired of stressing about it and just couldn't do it any more. As so many here can tell you, surgery is not to be feared, ultimately it's will liberate you and give you the rest of your life to live. Stay strong and heed your doctors advice, but don't stress.
 
I had my David valve sparing procedure a year ago when MRIs were consistently reading between 4.5 and 4.7. All of the surgeons told me that growth was inevitable and the periodic MRIs would reveal the rate of growth. The consensus was that when I reached 5.0 (no connective tissue disorder) the surgeons would advocate surgery. At a consistent 4.8 I asked the doctor if there was any benefit to waiting and he said that there really wasn't. I am glad I proceeded and had the repair done. I have no idea if my doctors would have provided different advice considering your condition. You could read the Yale studies on exercise with ascending aorta issues. Dr Elefertades (not the correct spelling) has written many studies on the subject.
 
Hi and "welcome to the waiting room"

I think / hope you'll find that there isn't really anything to be scared stiff about.

pearjas;n858011 said:
Is it remotely possible that an aortic root measurement of 4.0cm at age 32 will never require surgery? Is it realistic?

it is possible but as to it being realistic is really not a good guess. I know that things like this take time to adjust to, but seriously now that its found what you need to do is have it monitored regularly. I'd expect something like once a year, but your cardiologist will be the best to make that decision. To me its only good that its found because the alternative is that you'd just have a sudden pain and then be dead (perhaps killing others with you if you were driving).

I know you'll probably think of all the worst things, but as you'll gradually come to see its just a challenge in life and you'll adapt to it. You're in a good place to find support.

Best Wishes
 
Welcome to the forum. I had an aneurysm in my root and ascending aorta and went through the surgery. I think most people here would agree that the anticipation of the surgery is worse than the actual thing. Perhaps meeting with a therapist could help you to find ways to cope with your fear. All I can tell you is that I would rather have a problem that can be fixed, then one that cannot. My surgeon said that he did over 50 operations every year that were comparable to mine. To the surgical team it is just another day at the office. Generally aneurysms tend to grow over time but I've read that below 4.7cm it is not inevitable.

You should ask your Cardiologist about taking Losartan. It is a blood pressure medicine and there is some limited evidence that it may help slow aneurysm growth in those with Marfan's. It has been speculated that it may do the same for those with Bicuspid Aortic Valve, not sure about Ehler's Danlos. There have been a few threads on this forum about it. While it is unclear if there really is any benefit, there is very little risk.

Re. Dr's, http://www.castleconnolly.com/doctors/ is an excellent website to search for top Dr's in your region. Last I checked I think it cost a few dollars a month, and I only joined for a month. http://www.healthgrades.com/ is a free website where you can see how patients rated Dr's. http://health.usnews.com/best-hospitals has ratings on hospitals and you can search by region as well. If you don't feel that you have a really good Dr. in your area, you could travel for a consultation. You are a day's drive from the Mayo Clinic which is generally ranked number one or two in the country. Not something that is needed for the annual follow-ups, but for a consultation or surgery, if that becomes necessary, it is an option. A lot of people travel for surgery.

Re. exercise, generally heavy weight lifting and even very intense cardio is not recommended for those with an aortic aneurysm, though below 4.5 cm sometimes Dr's will not have any restrictions. Lifting light weights and moderate cardio are generally approved or even recommended. My Dr's basically said to avoid heavy weights and competitive sports. There is not a consensus on this yet and having a connective tissue disorder may result in more conservative guidance for you. I started a thread a while back where I posted some of the research and guidance I found on this subject, here: http://www.valvereplacement.org/for...2576-exercise-and-stress-with-aortic-aneurysm
 
I can understand your frustration, I'm actually sort of glad that when my ascending aneurysm was discovered last year it was in a sweet spot as far as I was concerned. It was considered small enough that surgery wasn't considered immediately necessary but it was big enough ( 4.8cm ) that they'd operate if I wanted it done. I have a job where they can insist certain physical requirements are met and if it was big enough to require restrictions but not large enough for surgery that could have caused some problems. I don't know much about ehlers danlos but I thought it had to do with cartilage and muscle connections but I guess it can effect the vascular system also. At the current size I don't think you're at a high risk but personally I would avoid heavy weight lifting. Also I had my surgery back in February , was back to fill duty 3 months later and I don't have any restrictions so although it is scary -even with all the great support out here I was properly frightened on the big day- the success rates are high and the experience overall wasn't nearly as bad as I feared.
The positive way of looking at it is you discovered it in time and you have plenty of time to research things and pick the right surgeon.
 
Hi there, PearJuice! (That's what I read when I saw your name). My first though when you mentioned Kansas was "Cleveland Clinic." So there's that.
I was petrified of surgery too. It's a normal reaction. i had 10 years to get used to the idea of having surgery. Then I realized there wasn't a whole lot I could do to change my situation other than make the best of it.
Ask your friends and family, neighbors, coworkers, for the name of a good cardiologist who listens to their patient. They are hard to find, so when someone has a good one, they know it. If you want to come to Florida I know a couple of really good ones :)
Anyway, welcome to the forums. There's a crap-ton of great information here.
Meredith
 
Thanks everyone for the welcome. I am glad I found this forum. I am still learning about the different ‘types’ of surgeries. I just know my issue is with the aortic root, and I am going to get a second opinion as far as what I can/can’t do, etc regarding exercise. I doubt the cardiologist would have prescribed Losortan, though I’ve done a lot of reading on that as well Don. I was eager to ask, but he was so laid back about the whole thing. I will also check out those links you sent as well. Richie Rich – do you mind if I ask how old you are? I can also send you a private message if you'd like. :) Sounds like you are very much in my situation right now.

Dan, I would have made the same decision. Why wait! I am a bit of a weird case in that before any of this ever happened, if you had asked me what my biggest fear was I would have told you surgery that involves putting me to sleep. My mom has the same fear, but she’s fortunate in that she’s never needed an operation. I just fear that something will go wrong if I need surgery and I’ll lose my life. I know it’s supposed to be the opposite though, and it could have honestly been a good thing I “discovered” this. If I hadn’t, I would have continued lifting, running, etc. I was going to the gym about 6 days a week. I miss it immensely.

I am going to seek a second opinion from another cardiologist – one I’m certain will be more familiar with my condition, which will make him more familiar with what my limits should be. Oddly enough, the cardiologist I did see said I could keep doing everything I was doing before. When asked further, he said “but don’t over-do it”.
Don, I definitely agree in that I’m glad it can be fixed, but I just have this fear I can’t seem to get over. What’s funny is I had already found your post through searching on Google. I’m sure plenty of others have referenced it as well. Cld – You definitely found it about the right time. MrsBray - I think any state would have to be better than Missouri. Ten years is so long to wait! I wish I could just know right NOW when, and ultimately if, I will need surgery but it's obviously that not easy.

I sure wish they would have some kind of endovascular method for aortic root enlargements. I don’t even know if that would be the method I’d choose, but it would be nice knowing that if I was ever in the situation, I wouldn’t be REQUIRED to have open heart surgery. I think it would help me a lot if I could sit down with a surgeon and go over it, and get their input/feedback even though I’m not at that point right now, because it’s really the fear that’s causing me the difficulty.
 
Hi

pearjas;n858043 said:
... I am a bit of a weird case in that before any of this ever happened, if you had asked me what my biggest fear was I would have told you surgery that involves putting me to sleep. My mom has the same fear, but she’s fortunate in that she’s never needed an operation.

fears are often our biggest impediments to actually enjoying life. Here is (to me) a wonderful story about a woman who faced her fear (the darkness) and stepped into a world of beauty.

http://www.abc.net.au/interactives/aurora-australis/

Three years ago, the very thought of such a venture would have turned Fran's blood cold. She had been afraid of the dark for her entire life. This was not just a case of the jitters; Fran's phobia induced sheer, disabling terror.

now Fran is one of the photographers who photograph the Aurora
 
That's a good idea you had pearjas, why don't you see if you can schedule a consult with a surgeon to get the "lay of the land" and see if you feel more at ease? They might see you if you frame it basically as a mental health need (even though their gut might be "go away you don't need surgery yet")

You might also consider talking to a cardiac rehab specialist. They might have the perfect experience to help put some numbers on what exactly "overdoing" it might be or what constitutes "heavy" weights, etc. Maybe your cardiologist could arrange this if you explain how much you miss exercising.
 
pearjas;n858011 said:
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.

Hi pearjas,

You might want to do a web search for "guided imagery for surgery mp3". I just came across some of these provided by Kaiser and listened to a couple, and I can see how they would have been even more useful before my surgery. I'm a skeptic/engineer type and not into "woo-woo" stuff, but there have apparently been some good results with techniques like this.

Also, you can probably get second/third/etc. opinions without traveling if you send your test results. I've seen such a program on the Cleveland Clinic's website, and other places like the Mayo Clinic could well have something similar.

And reading the forum archives here could be very helpful. Many of us have had months or even years to educate ourselves before our surgeries, and this is all still pretty new to you. The more information you have, the more you can have a sense of control. The very fact that you are here is a big step; there are people who would be in such denial that they wouldn't even try to learn about their conditions. So give yourself a big pat on the back and hang out here as much as you need to.

Claudia Z.
 
Will definitely check out the link on Fran and I did the searching for the guided imagery. That was all new to me. Very much hoping everything gets sent over. Going to make a second opinion appointment with a cardiologist tomorrow. Guess I probably won’t know much more until I do that. I can’t picture being able to talk to a surgeon, but when I do see this cardiologist, I will likely mention that since I’m having so much anxiety about this!
 
Hi pearjas - your situation sounds like mine. I'm currently at 45mm (sometimes 45 , sometimes 46 or 47) been like this since I discovered it back in 2009. I take 300mg of Irbesartan per day (since January. Was on atenolol before) Irbesartan is similar to losartan.. Apparently the trick is to have the highest dose, I.e 300mg. Like you, this is in my mind on a daily basis and I am currently thinking about some decisions I need to make which includes:

1. PEARS procedure. This is a procedure developed here in the UK by Tal Golsworthy an engineer who 'fixed his own heart'. He is Marfan. The problem with this procedure that it's not been fully tested in bicuspids and I don't think it's been tested in Ehlers. The added issue with bicuspid is because of the valve! The procedure makes complete sense to me! Wrap the aorta and hopefully no more enlargement. For me the what if issue is whether my bicuspid valve will leak more on the future? However, get in touch with Tal. Honestly he is extremely good and a very nice chap. I am in the process of talking about this procedure more with one of the surgeons (Conal).

2. Wait till it reaches 5.0! And cross that bridge when I get there. My cardiologist did say that sometimes, the aorta stops dilating and especially with the Irbesartan, it's proving some great results! ... Who knows!

The issues around the above for me are:

1. I am scared shi * about surgery; and
2. I am scared shi * living like this!

So like you, I got no idea what to do! My cardiologist thinks I should wait and see. No real restrictions apart from usual heavy weights etc.... But I understand, these "what if?" questions eat me alive.

P.s I am 32.
 
Wow, you are exactly like me!!! You are lucky in that you're in the UK. Right now, the pears procedure isn't even an option anyway and I'm not sure if it will ever be. I did email them from their web site, and a response was sent back copying in the person that is in charge of getting FDA approval, etc.. but I haven't heard anything further. I can't imagine having surgery. I am not on any medications, but my cardiologist didn't seem very knowledgeable about this to begin with, which is why I am going to have a second opinion with the only cardiologist I could find in the area with experience on connective tissue disorders. The appointment is Christmas Eve morning of all days!!

Sounds like you've been dealing with this for many years. How was yours discovered? I will have to do some research on Irbesartan. Hopefully it produces good results for you! I sure hope a medication can be found that stops further growth. I've read that aneurysms can be stable and I've read they tend to grow, and even when I read that, the growth rates vary. Can't really find any consistent information.

I haven't done anything physically since August 17, and while I'm afraid to lift any weights (even light ones) right now, I'd like to start jogging or something again... but even that right now is frightening! Have you read anything about heart rate and keeping it under control, or does blood pressure seem to be the main thing that needs to be controlled? I'd like to begin an exercise program again, but obviously exercise increases the heart rate!
 
I think there is quite a similar procedure in the U.S. called Florida Sleeve? I haven't done much research about this, but I read somewhere that is quite similar to the PEARS procedure. I hate the thought of surgery aswell, but at the same time, I hate the thought of living with this thing! So its a very unfortunate position, but yet, very fortunate to find it out. I had a major panic attack back in 2009. I had no idea what was going on, my chest went tight, my breathing was heavy! Horrible! I thought I was having a heart attack. Then they done some tests and the next day they told me, nothing is wrong with me, there is something really minor called Bicuspid Aortic Valve, but this is nothing to worry about. Carry on as normal. So I started researching through my anxious state of mind, and contacted various cardiologist. All of them told me that I needed periodic follow up, so that is how I started and then found out that also, I have a slightly dilated aortic root. I was like, great, what a flaming bonus! Just made my day!

I dealt with this for quite some time, but to be honest, its always at the back of my mind. It tires me thinking about it. Sometimes, I have much better days that I just ignore it, and sometimes I start ruminating and thinking, great, I have a ticking bomb inside me! But then, when I talk to the cardiologist and professionals, they say that the risk of anything happening is negligible at this size, so I reassure myself.

As you said, literature has different views, some say this some say that, some say 4.0 is normal, some say 4.0 is aneurysm, some say cut of at 5 some say 4.5 etc etc. It does my heading. I think this is because of what is called 'Bell curve'. Not all people are the same, maybe 4.5 is normal for me? Who knows! (Unlikely, but it could be). Example, all my 3 children have dilated aortas, but none of them have a bicuspid valve.

I think that jogging is fine, because of what my cardiologist talked about in relation to the biomass. I think with aortopathy like ours, exercise to keep our aorta flexible and not stiff, is great for us. (For everyone, but for us in particular). Lack of exercise, unhealthy lifestyle, smoking etc. Can make the aorta stiffer and the progress of dilation will be faster etc. So cardiovascular is important. (I need to do this aswell, as like you, I am afraid! )

Irbesartan is supposedly to be a good medication for this - see AIMS study etc. I was concerned at first, but read a few articles and there are some promising results. Also, this site is fantastic. People here as you can see are always available to support. This site is better than my wife! She ignores me all the time :)
 
Ps you said I dealt with this for many years. Which is true, and from day one I thought something is going to happen etc etc. 6 years past and I wasted a lot of time feeling sorry for myself instead of taking my cardiologist advice to keep going as normal!.. I suppose, and I Know it's hard, but try not to do the same mistake. Just enjoy life. This is a small issue that can be fixed.
 
Being scared of the surgery and scared of waiting and living with it is difficult. Not to be flip about it but once you have the surgery and you're good to go you won't have to fear either. The idea of new procedures is definitely appealing but it's not like a software update where you can easily roll it back if there's too many bugs so I'd be a little cautious of trying something new and rarely tried especially when the success rates are so high with the "usual".
Sorry to hear the kids have a dilated root also . That has me a little worried as my 8 year old son has a normal aortic valve so I'm hoping he'll get to skip all this excitement.
She might ignore you but I'm sure she hears you.
 
You're right. It's a relatively new procedure compared to other traditional ways. I like you analogy about software update.
So are you back to normal activities now ?

About kids, yes, I am concerned. As usual my cardiologist said nothing to worry about, but I hate the fact that they might experience the same excitement as us in the future, as you described it. Hopefully not! And if it is, but that time, technology would have advanced even more! Maybe promising medication such as Itbesartan will fix the issue.

When I had a panic attack and I was in hospital, she couldn't stay with me cause she had a spray tan appointment!!! P.s it was the day before my wedding mind and doctors were saying I'm fine and that I'm having an adrenaline rush.... Strangely I had a panic attack before wedding and another one a day after getting married... We had a lot of fun!! She must love me to stick around. Now I remind her every time we have a small argument. "You put the spray tan before me!" :)
 
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