Found out today Ascending Aortic Aneurysm is larger---feeling confused and scared!

[HopefulHeart]

Hello everyone....I had an MRI today. It's been 3 years since my last one. My aneurysm 3 years ago was measured by MRI at 4.2cm. Today my MRI revealed it has grown to 4.4 cm. For 7 years my aneurysm was stable at 4.2 cm. But in the past 3 years something caused it to grow by 2 cm. Scary thing is I don't know what I did wrong to cause it to grow. My blood pressure has been kept in check with meds, I've been exercising (mild cardio---no weight lifting), I've been cutting down on carbs and making healthier food choices and I've lost 5 pounds. I'm healthier now than I was 3 years ago, but my aneurysm got bigger. I don't understand why and my doctor probably won't know either. So here I sit with a 4.4 cm ascending aorta and I'm feeling pretty scared because my cardiologist told me the new surgery threshold is 4.5 cm. Since I don't know what caused it to grow, I don't know what to avoid to prevent any more growth. And I feel myself moving closer to surgery faster than I thought I would. I also have a BAV, but there have not been any problems with the valve. It's still doing well. It's just this one section of tissue in my aorta that is weak. So I'm afraid of the aneurysm growth and the surgery. Does 2 cm growth in 3 years seem pretty severe to you all? I don't want to rush into something like surgery, but my situation seems hard to predict and I don't want to wake up next year and have it be at 5cm. Honestly, I don't think the doctors know much about aneurysm behavior. What if they grow faster than the doctors realize? As you can see, my situation has me pretty scared. Any advice or personal stories you want to share, I'd love to hear. Thanks in advance.


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[pellicle]

Hi

I understand that, but instead focus if you can on the fact that you know its there, you know its being monitored and now that everyone knows its growing it will be monitored more frequently.

I understand that its common for it to start to increase in size. Lucky for you that you know its there rather than just dropping dead and terroizing everyone around you when it happened.

As you know that you have BAV you'll probably have read by now that aneurysm is associated with BAV genetically, so you got that out of the way rather than having a valve surgery, then discovering the aortic aneurysm later and forcing a second

I would focus now on what you'll do at surgery, not stressing about the fact that you'll have surgery. Its time to pick what valve you'll have and know that every year its delayed gives opportunity for you to be offered newer technologies.

When you feel some panic arise, just recite this:

you'll be fine and you're going to be in good hands

 

[HopefulHeart]

You are right pellicle, and the beautiful words of wisdom you posted I will keep in my head. They do bring comfort to read them. I am lucky that I know about it. I consider it a miracle that it was even discovered in the first place. I think my extreme emotion over this has a lot to do with my uncle's death during heart surgery in 1996 and the fear that my aneurysm will suddenly and quickly enlarge and rupture without me knowing soon enough to do anything about it. But I will try to focus on the things I can do something about. Thanks for your response.

 

[AZ Don]

I've read that aortic aneurysms grow 1-2mm per year on average, but individual results can vary widely. I've also read that beyond 4.7cm, further growth is virtually inevitable, so perhaps below that level further growth is not inevitable. Is your Dr. using the surgical criteria that accounts for bodysize? The normal surgical criteria is 5.5cm. It was such a surreal experience to find out that I needed open heart surgery, but it really was good to get it over with. As far as a healthy lifestyle, from what I know of aortic aneurysms, they are pretty much independent of how you live your life. In fact trying to be healthy with strenuous exercise can actually make it worse, but mild cardio as you mention is recommended. The only thing I have heard that might slow the growth is controlling blood pressure (which you mention is already controlled) and Losartan which is far from proven, but worth discussing with your Dr. I think I've read that CT's and MRI's are accurate to 1mm at best. If there was any change in the way it was measured or read, that could easily increase the margin of error.

I very much agree with Pellicle's advise. As scary as it is to know you have an aortic aneurysm, it would be far worse not to know.

 

[HopefulHeart]

AZ Don....you make a lot of really good points. My Dr. mentioned the surgery threshold of 4.5cm because I also have a BAV. I am short (5 ft 3in) as well and have read that surgery is recommended earlier for smaller aortic aneurysms if you are short so that may also be playing into my Dr.s recommendation although we have not discussed that specifically. I am going to bring that up to my Dr at our next meeting. I have also been on Losartan for the past 3 years as well as a beta blocker (Metropolol). My blood pressure has always read normal, although close to borderline. Usually about 114/73 to 120/80. And finally, to your point about the way the MRI was read, my first thought when I saw the results was that perhaps it was read differently. Because one part of the report says my aneurysm is 4.4 cm, then later in the report where it goes into more detail the Radiologist stated "measures up to 4.4cm". I wondered if there was an error in the Radiologist's reading. I was going to bring that up to my Cardiologist as well and question the accuracy of the measurement. Hopefully the Dr's won't take offense, but every cm counts and if there is an inaccuracy I want to know about it. Funny thing is that I actually thought there was a chance my aneurysm would be smaller due to my healthier lifestyle and the fact that I've been taking Losartan for 3 years, so I was shocked and so sad to find out it in fact was larger. But the true gift is that I know about it and I'm thankful for that.

 

[DachsieMom]

Read the articles by Dr. elefteriades at Yale on the relation of body size to an aneursym. I am not quite 4'10". I had surgery last year - no BAV. However, thresholds are lower for those with BAV and/or are petite. My sister's was 4.8 cm at 5'3" and the surgeon said she could have been dead in 6 months based on the condition of her aorta. Mine was smaller (they thought under 4, but over 4 once removed). However, I was having symptoms so my surgeon felt it was the right decision (I would have followed in her footsteps). Also, I am so short there are not too many others to which one can compare for me. I am not saying this to scare you - just trying to raise awareness that it is not a one size fits all measurement of 5.5 cm. We are both young, recovered well, and now are fixed for life with mechanical valves. Surgeons do this every day - to them it seems routine!

 

[HopefulHeart]

Read the articles by Dr. elefteriades at Yale on the relation of body size to an aneursym. I am not quite 4'10". I had surgery last year - no BAV. However, thresholds are lower for those with BAV and/or are petite. My sister's was 4.8 cm at 5'3" and the surgeon said she could have been dead in 6 months based on the condition of her aorta. Mine was smaller (they thought under 4, but over 4 once removed). However, I was having symptoms so my surgeon felt it was the right decision (I would have followed in her footsteps). Also, I am so short there are not too many others to which one can compare for me. I am not saying this to scare you - just trying to raise awareness that it is not a one size fits all measurement of 5.5 cm. We are both young, recovered well, and now are fixed for life with mechanical valves. Surgeons do this every day - to them it seems routine!

DachsieMom......that is the one thing that I have been worried about. I am going to bring the article you mentioned above with me to my appointment on Oct. 5th. Thanks for posting it and for bringing this to my attention. Where did you have your surgery?

 

[HopefulHeart]

Read the articles by Dr. elefteriades at Yale on the relation of body size to an aneursym. I am not quite 4'10". I had surgery last year - no BAV. However, thresholds are lower for those with BAV and/or are petite. My sister's was 4.8 cm at 5'3" and the surgeon said she could have been dead in 6 months based on the condition of her aorta. Mine was smaller (they thought under 4, but over 4 once removed). However, I was having symptoms so my surgeon felt it was the right decision (I would have followed in her footsteps). Also, I am so short there are not too many others to which one can compare for me. I am not saying this to scare you - just trying to raise awareness that it is not a one size fits all measurement of 5.5 cm. We are both young, recovered well, and now are fixed for life with mechanical valves. Surgeons do this every day - to them it seems routine!

DachsieMom........Wow!!! I just read the article by Dr. E at Yale. I am in shock!!! I have the exact same profile as some of the patients he referenced. I am just under 5'3'' and I'm 41 (same exact age as his patients) and my aorta is at 4.4. The patients he operated on were at 4.8. I also believe I have a family genetic mutation that codes for these aneurysms as I've heard stories of relatives (grandmother, great aunt, uncle) all having heart problems that included passing out. Autopsies were not done when they passed away so no one in my family knows for sure. But Dr. E studies people like me. Holy Cow!!! I think my situation may indeed be worse than I thought due to my being short. Okay.....I'm going to take a deep breath. I'm supposed to see my Dr on October 5th and I may need to educate him on this. I don;t know if he is aware of this because he's telling me don't worry, 5.5 is the standard. If he won't listen, I may need to follow my gut and go see a surgeon for a second opinion.

 

[Catie]

I had posted yesterday on your other thread and will repeat some. I certainly wish you well in all of this, HopefulHeart.

I'm 5'4", 57 y.o., have a stenotic BAV, and will have my surgery late this month. My aneurysm has grown from when it was first dx'ed at 4.4 cm in 2008. I have remained at 4.7 several years, but a portion of mine is now 4.9.

I tried unsuccessfully to locate the particular article by Dr. E.

Cleveland Clinic definitely takes into account both body size and BAV, recommending surgery sooner for petite patients and when a bicuspid valve is present. Surgeons want to operate once the risk of dissection is greater than the risk of surgery.

I found it worthwhile to communicate with more than one surgeon. In my case, it turned out there was disagreement about aortic root dilation, and I needed to persevere and resolve that question. I want everything to be addressed in surgery that needs to be!

 

[HopefulHeart]

I had posted yesterday on your other thread and will repeat some. I certainly wish you well in all of this, HopefulHeart.

I'm 5'4", 57 y.o., have a stenotic BAV, and will have my surgery late this month. My aneurysm has grown from when it was first dx'ed at 4.4 cm in 2008. I have remained at 4.7 several years, but a portion of mine is now 4.9.

I tried unsuccessfully to locate the particular article by Dr. E.

Cleveland Clinic definitely takes into account both body size and BAV, recommending surgery sooner for petite patients and when a bicuspid valve is present. Surgeons want to operate once the risk of dissection is greater than the risk of surgery.

I found it worthwhile to communicate with more than one surgeon. In my case, it turned out there was disagreement about aortic root dilation, and I needed to persevere and resolve that question. I want everything to be addressed in surgery that needs to be!

Hi Catie....thanks for your response. And sorry about the multiple threads. I posted my question and realized I was not logged in under my name so I posted a second time. First I want to tell you I wish you all the best on your upcoming surgery. I will keep you in my thoughts and hope all goes well and that you have a quick recovery. I'm glad you mentioned Cleveland Clinic as that is where I was wanting to have my surgery when the time comes. Are you having your surgery at Cleveland Clinic?

My plan was to consult with a surgeon here in Charlotte, NC where I live and get their opinion. And then I want to consult with a surgeon at Cleveland Clinic to get their opinion. I find it so interesting that there was disagreement among the surgeons on the aortic root dilation. Were they telling you that yours was not big enough to operate on?

I now know that my aneurysm is getting larger (4.4 cm per the MRI I had done 2 days ago). I also know that I am petite (5'3'') and not as skinny as I wish I was (175 pounds). And I'm 41 years old with a BAV. Everytime my cardiologist tells me to just keep waiting, I worry with all these other factors that waiting is not the right thing to do. And to think that even the surgeons can disagree as in your case, you wonder who's advice to trust.

 

[DachsieMom]

I had my surgery at Yale -Dr. Elefteriades operated on both my sister and me (I found him after researching body size and aneurysms). He was fabulous. In fact, we believe he saved my sisters life. Surgeons at another hospital would not operate until her diameter had reached 5.5. As I mentioned, Dr. E said my sister's aorta was one of the worst he had seen, and she would have been dead anytime, and most likely in less than 6 months. It was 4.8 at the time.
You also mentioned genetic factors. That also could lower the threshold at which surgery should be performed.
This is not medical advice!

 

[Rachel]

Hi HopefulHeart – I know how scary this is - but it sounds like you're doing a great job being proactive.

This was my experience

I’m 5’4 and 117lbs
My aortic aneurysm was 5.2cm with BAV

First cardiologist I saw told me he wouldn’t recommend anything for me for the next TWENTY YEARS OR MORE

Second cardiologist told me that she “wanted to WAIT to see how fast it would grow”
I told her that I’d like to put this thing in her chest and watch it grow.....….that comment got me into see a surgeon, who scheduled surgery 10 days later.

I’ve read the height information on the CC website and I think it makes sense – but also know this – six months prior to even knowing I had a heart issue I was out running like a fool (7 min miles during speed workouts on a hot track in the middle of July).....talk about raising your BP....who knows why I didn't just die on that track that summer.

BP is the most important factor you need to watch with an aneurysm…..and you’ve got that covered.

I think you're doing a wonderful job going for that second opinion and taking care of your BP - be sure to relax and breathe as you navigate your way through, you are going to be just fine.

 

[HopefulHeart]

Hi HopefulHeart – I know how scary this is - but it sounds like you're doing a great job being proactive.

This was my experience

I’m 5’4 and 117lbs
My aortic aneurysm was 5.2cm with BAV

First cardiologist I saw told me he wouldn’t recommend anything for me for the next TWENTY YEARS OR MORE

Second cardiologist told me that she “wanted to WAIT to see how fast it would grow”
I told her that I’d like to put this thing in her chest and watch it grow.....….that comment got me into see a surgeon, who scheduled surgery 10 days later.

I’ve read the height information on the CC website and I think it makes sense – but also know this – six months prior to even knowing I had a heart issue I was out running like a fool (7 min miles during speed workouts on a hot track in the middle of July).....talk about raising your BP....who knows why I didn't just die on that track that summer.

BP is the most important factor you need to watch with an aneurysm…..and you’ve got that covered.

I think you're doing a wonderful job going for that second opinion and taking care of your BP - be sure to relax and breathe as you navigate your way through, you are going to be just fine.

Hi Rachel.....thanks for your information. Seems like lots of cardiologists have this wait, wait and wait some more attitude. Problem with waiting is you live in constant fear that one of these days the balloon will pop. And I'm constantly wondering if I'm doing anything to aggravate it....was the basket of laundry I lifted too heavy, if I sleep on my side does that put pressure on the aneurysm, if I go out for some brisk walking does that stress the aneurysms too much, etc etc. I dread the day I have to have surgery, but all the waiting and wondering is a nightmare. Because these aneurysms take no prisoners.

What kind of valve is the EDWARDS valve that you got? Is it mechanical? Have you had any problems with it? Also, where did you have your surgery?

 

[Catie]

Hi Catie....thanks for your response. And sorry about the multiple threads. I posted my question and realized I was not logged in under my name so I posted a second time. First I want to tell you I wish you all the best on your upcoming surgery. I will keep you in my thoughts and hope all goes well and that you have a quick recovery. I'm glad you mentioned Cleveland Clinic as that is where I was wanting to have my surgery when the time comes. Are you having your surgery at Cleveland Clinic?

My plan was to consult with a surgeon here in Charlotte, NC where I live and get their opinion. And then I want to consult with a surgeon at Cleveland Clinic to get their opinion. I find it so interesting that there was disagreement among the surgeons on the aortic root dilation. Were they telling you that yours was not big enough to operate on?

I now know that my aneurysm is getting larger (4.4 cm per the MRI I had done 2 days ago). I also know that I am petite (5'3'') and not as skinny as I wish I was (175 pounds). And I'm 41 years old with a BAV. Everytime my cardiologist tells me to just keep waiting, I worry with all these other factors that waiting is not the right thing to do. And to think that even the surgeons can disagree as in your case, you wonder who's advice to trust.

http://valleyheartandvascular.com/Thoracic-Aneurysm-Program/Calculate-Your-Relative-Aortic-Size.aspx

http://valleyheartandvascular.com/Thoracic-Aneurysm-Program/Risk-Stratification.aspx

HopefulHeart, you may find the above two links useful. It looks like with your physical attributes, if your aneurysm reaches 4.5, you'd be very close to the threshold they discuss.

Thank you for your well wishes; I very much appreciate those. Yes, I will be heading to Cleveland.

A couple of comments on their process. I'm not sure whether you planned to head up there or to do a long-distance consultation. The "MyConsult" remote consultation takes considerably longer than their website suggests. In my case, several weeks longer. Then there is a little lag time with submitting questions and receiving answers afterward.

All three surgeons agreed that it's time to operate, due to the size of the aorta. My valve only moved to "severe" from moderate at the June echo and I'm asymptomatic, so no one would have operated yet on that alone. I'd never heard of an aortic root before all this, let alone known that the root might add another layer of complexity to the surgery. Local surgeon immediately said root was dilated and he would replace it with a porcine one. First CC surgeon said aortic root is normal and didn't need attention. I had to have a tie-breaking additional surgeon up there look at my CT scan and I asked for a more senior surgeon to do so. He confirmed the root involvement and he will perform my surgery.

I moved here in 2014 and the first cardiologist I saw was a dud. He was the one who ordered the CT that showed 4.9 cm. When I said I planned to see a surgeon, he replied, "Oh you don't want that surgery. That is a terrible surgery." I told him it may be a bad surgery, but I don't want to die, so I'm seeing a surgeon. I unloaded that guy and got someone stellar to replace him. The dud cardiologist had me do a stress echo last year and wanted another one this June. I thought, there is no way I'm letting him do that right now. When I told my new cardiologist he'd asked for a stress test, he said, "He could have killed you." I said, yeah, I know--that's why I'm here with you instead.

To some of your other points, the weight restriction I've had for the last several years, was to not lift anything more than 40 lbs. The local surgeon saw nothing wrong with aerobic exercise; my new cardiologist asked me to not let my heart rate go over 120. I've never read anything about physical positioning being an issue.

 

[HopefulHeart]

http://valleyheartandvascular.com/Thoracic-Aneurysm-Program/Calculate-Your-Relative-Aortic-Size.aspx

http://valleyheartandvascular.com/Thoracic-Aneurysm-Program/Risk-Stratification.aspx

HopefulHeart, you may find the above two links useful. It looks like with your physical attributes, if your aneurysm reaches 4.5, you'd be very close to the threshold they discuss.

Thank you for your well wishes; I very much appreciate those. Yes, I will be heading to Cleveland.

A couple of comments on their process. I'm not sure whether you planned to head up there or to do a long-distance consultation. The "MyConsult" remote consultation takes considerably longer than their website suggests. In my case, several weeks longer. Then there is a little lag time with submitting questions and receiving answers afterward.

All three surgeons agreed that it's time to operate, due to the size of the aorta. My valve only moved to "severe" from moderate at the June echo and I'm asymptomatic, so no one would have operated yet on that alone. I'd never heard of an aortic root before all this, let alone known that the root might add another layer of complexity to the surgery. Local surgeon immediately said root was dilated and he would replace it with a porcine one. First CC surgeon said aortic root is normal and didn't need attention. I had to have a tie-breaking additional surgeon up there look at my CT scan and I asked for a more senior surgeon to do so. He confirmed the root involvement and he will perform my surgery.

I moved here in 2014 and the first cardiologist I saw was a dud. He was the one who ordered the CT that showed 4.9 cm. When I said I planned to see a surgeon, he replied, "Oh you don't want that surgery. That is a terrible surgery." I told him it may be a bad surgery, but I don't want to die, so I'm seeing a surgeon. I unloaded that guy and got someone stellar to replace him. The dud cardiologist had me do a stress echo last year and wanted another one this June. I thought, there is no way I'm letting him do that right now. When I told my new cardiologist he'd asked for a stress test, he said, "He could have killed you." I said, yeah, I know--that's why I'm here with you instead.

To some of your other points, the weight restriction I've had for the last several years, was to not lift anything more than 40 lbs. The local surgeon saw nothing wrong with aerobic exercise; my new cardiologist asked me to not let my heart rate go over 120. I've never read anything about physical positioning being an issue.

Hi Catie.....thanks for all the info you gave me. May I ask which surgeon at Cleveland Clinic is going to do your surgery? I like the way the surgeon you chose has worked with you and seems to be thorough and on top of things. And you said he's a senior surgeon and that's what I would want also. I've been on the Cleveland Clinic site and read about Dr. Roselli, Dr. Baekeen, Dr. Tong, and Dr. Svennsen. They all look like great surgeons to me. Curious if one of them is the one you chose?

Also, do you live near Cleveland, OH? I do not. I am in Charlotte, NC so I'd have to travel to go to Cleveland which is something I'm really bothered about.

 

[DachsieMom]

I'm sure you probably have some amazing surgeons in Charlotte. If you have consults with CC or Yale, ask them if they would recommend any aortic surgeons in your area.

 

[Catie]

DachsieMom is right, that there may be someone local you'd feel very comfortable with, if you don't want to travel.

If you decide on Cleveland, they have four hotels on the hospital campus. Half of their cardiac surgery patients are from out of state, so they deal with patients long distance all the time. They ordinarily set things up for patients to do everything in one trip and have a service to pick heart patients up at the airport and return them to the airport once it's all done. They want you to stay 2-3 days after release to have a follow up cardiologist visit before flying (or being driven) home.

My process started with their service that's designed to give you a second opinion at a distance. Based on my diagnosis, they selected the surgeon who wrote the recommendation and then answered additional questions.

Afterward, when I sent my packet up to request an in-person consultation and surgery, I asked for someone more senior, because of the question about my aortic root. They assigned my case to Dr Gosta Pettersson. He does work on a ton of aortic roots. So actually, I didn't choose and have never spoken to him. But his credentials and experience are amazing. My pre-op appointment with him is the day before my surgery.

I figure each of them were brought on board at CC due to their brilliance and skills. For his combination of personality and skills, I was leaning toward Dr Roselli, if I had done the choosing. Dr Svensson is top-of-the line. I don't think you could go wrong.