Aneurysm or Aneurysmal?

[rutho]

Last week, after having chest pains, lethargic and sleepiness alot of the time, I pestered the Cardiologist to conduct a CT Scan of my heart. You guys inspired me to take my health into my own hands and speak up! (Thanks so much). Last measurements of the "aneurysm" were 4.6 X 4.95 and that was four months ago. At that meeting last week, the cardiologist suggested I start shopping for a surgeon.

Wednesday of this week I had the CT test (4 months between tests) and the results came back 4.6 X 4.8. I understand there can be inaccuracies between tests.

On Thursday of this week, I met with Dr. Ott, Cardiac Surgeon in Houston. He told me I don't have an aneurysm, it's just dilated. He said my aorta is a "bit" enlarged. He said there is no need for me to have surgery any time soon. He suggested I go back to the cardiologist to find out why I would be having chest pains, but he assured me not related to my heart.

So, now I sit here feeling quite stupid. Is this "aneurysm/dilatation" just a play on words? Do I need to worry with the chest pains? I feel like one of those people they make fun of on "American Idol". HA, that girl isn't sick.

A few factors: I'm 40 years old, tall, most would call me thin, usually full of energy, bicuspid valve, moderate to severe regurtitation, I take Toporol.

Thank you so much for your help and advice! I feel like I am so much more empowered when I meet with these doctors only because I have been educated by this site!

I have my own black book with all my tests, notes from every appointment, my prescription sheet. One of the VR-ers suggested I start this book and four years later, I've come to rely on it more than I ever thought. You guys are a wealth of information and I truly appreciate it!

Ruth

 

[PJmomrunner]

Well, Ruth, I'd say you can rule out that particular surgeon! My guess is he doesn't differentiate between treatment for a BAV and treatment for a TAV and doesn't operate before 6cm (or some other too-big number) in either case.

The following is from the Bicuspid Aortic Foundation website:

"What is an Aortic Aneurysm?

In general, an aneurysm is a permanent enlargement or bulging of a blood vessel. This bulging or ballooning happens at a place where the walls of the vessel have become weak and thin.

The Society for Vascular Surgery has stated that an aneurysm exists when a blood vessel has enlarged to at least 1.5 times its normal diameter. It is reasonable that larger people will normally also have a larger aorta, and smaller people a smaller aorta. Therefore, the body size, as well as the gender and age of a person, help determine how big their aorta would normally be. If the normal size of the ascending aorta was 2.5 cm, enlargement to a diameter of 3.75 cm would be an aneurysm in that person.

For an aortic aneurysm, another definition is an enlargement of at least 4.0 cm in diameter in an average-sized adult.

If the aorta has begun to enlarge, before it is considered big enough to be an aneurysm, it is called dilated. The phrase aortic dilatation is used to describe this also.

?Whether aortic dilatation or an aneurysm is present, it is important to concentrate on getting an accurate measurement of the aorta.

? Enlargement of the aorta is considered a sign of aortic disease. It should be treated by medically addressing blood pressure and by checking aortic size periodically."

http://www.bicuspidfoundation.com/Aortic_Aneurysm_and_Dissection.html

 

[PJmomrunner]

He suggested I go back to the cardiologist to find out why I would be having chest pains, but he assured me not related to my heart.

...and how is this logical??? It's not your heart, so go see a cardiologist???

 

[aussigal]

Hi Ritho...
I had the same dilemma "aneurysm or dilated" ...after doing some research I found that mine was indeed an aneurysm...There is a proper definition somewhere. I think its something like once the aorta is 1.5 times the regular size they call it an aneurysm. I believe a regular (undilated) aorta is around 2.5-3.5cm.

I figure my Cardio just didnt want to scare me by using the "A" word!...as soon as I started to call it an aneurysm he did too!

Mine was practically the same size as yours (4.8 by 4.7cm). I had it replaced at that size and my BAV as well. I also have a strong family history of early Cardiac related deaths which helped influence my decision not to wait til the majic 5.0cm.. My surgeon sized my annie at 5.0cm when he went in and removed it.

Well done for keeping such excellent records...

 

[Ross]

Go see another surgeon. This one is going to play until you die.

 

[MrP]

Dr. Ott's credentials are certainly excellent, and perhaps there are members of this forum who have direct experience as his patient. I wouldn't get too caught up in the term aneurysm vs. dilated aorta vs. aneurysmal dilatation. Frankly, I don't understand why he dismissed your chest pain symptom. What's important is you have BAV, an enlarged aorta, and an inherent weakness in your aortic tissue that requires attention and eventual surgery (possibly sooner than later given your chest pain symptom).
Questions you may want to ask Dr. Ott are:
1) In BAV patients, what diameter of the ascending aorta does he consider aneurysmal and surgery necessary to reduce risks of rupture or dissection?
2) What other factors does he use in making this determination (such as diameter of ascending aorta compared with diameter of proximal descending aorta)?
3) Does he make a distinction between criteria for BAV patients vs. normal TAV patients?
4) Are his guidelines different from ACC/AHA 2006 Guidelines and why? see:
http://content.onlinejacc.org/cgi/content/full/48/3/e1?ct
5) Why does he dismiss your chest pain symptoms as not related to your aneurysmal dilatation?
With respect to this last point, I refer Dr. Ott to the research done at Yale Medical and the followng article, "Thoracic Aortic Aneurysm: Current Approach to Surgical Timing" (especially see questions and answers relating to symptoms).
http://72.14.203.104/search?q=cache...+valve+aneurysm+yale&hl=en&gl=us&ct=clnk&cd=9
Let him know you (we) are confused and don't undertand his recommended course of action. Feel free to email this post to him and other posts from this forum, especially Ross' in which he describes his painful experience of aortic dissection at 4.7cm. Let him know you are going to get a second opinion (see bicuspidfoundation.com for other experts). You may want to send your CT results and echo results to another expert instead of setting up an appointment.
Dr. Ott may be contacted via email on his website. Ask him to help educated all of us, please.

 

[briansmom]

My son had an ascending aortic dissection. He had chest pain in the center of his breastbone. They reassured me that his chest pain was not cardiac related - right up until the time that he was in heart failure and hours away from death. Now he has an experimental heart pump inside him. Miraculously, his heart has improved and they are taking the pump out in a few weeks. Bottom line - pain shouldn't be happening.

 

[Susan BAV]

Hi Rutho-

Good replies, all! What MrP said is especially interesting. Think about that email. I've read here that some other Valvers have communicated with prospective surgeons via email with good results.

 

[ptoddy]

I think that is a bit stong Ross.

I respect that you help run this brilliant website but comments like that do not help anyone.

I am in a similar position to you Rutho and my cardiologists are telling me exactly the same as Dr Ott is saying to you.

I agree that I think it is irelevant whether it is an aneurysm or aneurysmal but this is an excellent surgeon giving you advice you have got to believe someone.

Paul

 

[Ross]

I think that is a bit stong Ross.

I respect that you help run this brilliant website but comments like that do not help anyone.

I am in a similar position to you Rutho and my cardiologists are telling me exactly the same as Dr Ott is saying to you.

I agree that I think it is irelevant whether it is an aneurysm or aneurysmal but this is an excellent surgeon giving you advice you have got to believe someone.

Paul

Hey some people need to know just how serious this really can be. I'll be darned if I sugar coat it so as not to offend. If there is pain, there is a reason for that pain. They dismissed mine as a cause and had me laying around continuing to deteriorate until someones light bulb turned on and said, take him to CAT Scan. With women, I don't know why, but they tend to dismiss your issues. I just wouldn't feel right without knowing positively that aorta is not the cause. Given the measurements that she has, I certainly would not rule it out. Even top notch, looked up to mentor Physicians can make mistakes.

There is no medical reason why I am alive after mine ruptured. Needless to say, their magic number 5 before doing anything no longer carries any weight with me. If you ask me, that's too long. Many times, even with the best equipment, the measurements are wrong and the thing turns out to be much larger then anticipated. If I save even one person the experience I had, that is all I care about. It could even be you.

 

[Karlynn]

Rutho - your surgeon shopping isn't done. Rather than go back to Dr. Ott to have him further explain his reasoning, I'd just find another surgeon.

 

[PJmomrunner]

I just don't understand what purpose is served by not calling an aneurysm an aneurysm. Aneurysm vs. dilation is not a matter of semantics. Ruth has an aneurysm by anyone's definition--well anyone else's. If this guy's not using the same language as his peers, his "credentials" are useless to me. To tell me that I do not have an aneurysm when I know I do serves only to make me distrust anything else you say.

If Ruth can get past being made to feel "quite stupid" and like she was being made fun of to ask Mr.P's questions, and get some reasonable answers, she might walk away from a second meeting feeling quite differently and feel she's found the right surgeon. It would be a shame to pass up an excellent technician because his communication skills leave much to be desired.

If, on the other hand, nothing he might say could ever make her feel safe in his hands, then Ross' advice would, in my opinion, be well taken. It's all about the outcomes and we as patients have to feel confident we are bolstering the likelihood of a good outcome in the hands of our medical practitioners.

 

[ptoddy]

Ross

People use this forum for advice.They,like me are learning all the time about their conditions.I think you can get your opinion over without using that type of language.

I have seen 2 different cardiologists here in England and they both say (and I have pushed them on this)that my 4.89 cm ascending aorta is not an aneurysm,it is a dilated aorta.I agree it is an aneurysm.I think different cardio's from different parts of the world must refer to it differently.

I have read a lot on the subject since being diagnosed and as far as I can see there is still just a 2% risk of rupture under 5cm, unfortunately Ross must have been in that 2%, so therefore Rutho like me does not need surgery just yet.This surgeon obviously does not think Rutho's pain is to do with the aneurysm.Everything I have read states you do not get a constant pain with aneurysms.

Paul

 

[briansmom]

I'm going to put my $.02 in again. The difference here is pain. I'm with Ross on this. The pain needs to be diagnosed. It could be an esophogeal issue or it could be a dissection issue or ?. My son almost died from an undiagnosed dissection - I'm in the better safe than sorry camp.

 

[MrP]

From what I've read (see references to ACC/AHA 2006 guidelines), the ascending aorta is considered normal when the diameter is less than 4.0cm, mildly dilated between 4.0-4.4cm, moderately dilated between 4.5-4.9 cm, and markedly dilated =>5.0cm in BAV patients. As stated in earlier posts, when the diameter of the aorta is 150% of what's normal for the individual, it is technically considered an aneurysm.

Very important in this case is whether or not Ruth has symptoms indicating the aortic medial layer is stretching. From first hand experience, I agree with Paul that chest pain associated with the aorta is not constant. If chest pain is positional in nature, I think cardiologists and surgeons will dismiss this pain as muscular skeleton in origin. In my case, this chest pain was a sharp pain that came and went (and not necessarily associated with exercise); however, as I got closer to surgery, I also felt a fullness in my chest that was of a more constant nature...not painful but very different (afterall, my aorta was the size of a soda/beer can in my chest). I always had a difficult time describing my sharp chest pains to a cardiologist, and post surgery, this chest pain was not present.

It would be helpful for Ruth to describe her chest pain and for a cardiologist to truly listen. If uncertain as to source of pain, I don't know how one can dismiss it and possibly later become a statistic (lower 2%). We definitely know our bodies better than a cardiologist or surgeon who doesn't have first-hand experience with chest pain from aortic stretching. Communicating this pain in a way they understand is difficult at best. And coupled with moderate to severe aortic regurgitation of the bicuspid valve, aortic chest pain is especially worrisome.

 

[ptoddy]

I agree with you most of what you say Mr P.But reading Ruth's previous posts she has been having chest pain since Oct 2005 surely this pain cannot be coming from the aorta for all this time.

I notice Ruth said she was a worry wart,could the pain not be coming from stress and anxiety or muscular tension?

But I agree it needs to be diagnosed,but I think Dr Ott has dismissed it as not being aneurysm related.

Paul

 

[Karlynn]

But I agree it needs to be diagnosed,but I think Dr Ott has dismissed it as not being aneurysm related.

Women, particularly, need to be very careful that nothing is dismissed by a doctor until a certain diagnosis is obtained and successfully treated. More women die of heart attack than men because their symptoms are not the same as men and doctors dismiss it as something else. Plus - women are more likely to have doctors say their symptoms are over-blown, or imagined, or a result of stress.

It is my humble opinion that until Ruth's pain is definitively ruled out as resulting from her aneurysm, then she needs to proceed forward with the assumption that it very well may be the cause of the pain, or it may be something else, but a certain answer needs to be found. If it were me, I'd find another surgeon to speak with, as well as head straight back to my cardio and tell him/her we needed to be turning over more than one stone at a time.

I am one of the many women's who's complaints fell on deaf ears by doctors. I was told that my arrhythmia was psychosomatic, not MVP related and I was prescribed drugs by doctors assuming it was "all in my head". Fortunately for me - thosed doctors got fired by me, I never took the drugs they prescribed and I found a doctor who took me seriously. As it turns out - my symptoms were a result of my MVP and the cure for me was valve replacement. My valve was almost non-existant.

 

[MrP]

Paul, my sharp chest pain incidents lasted on the order of seconds and came and went over the course of a few years until surgery. This makes sense to me, as the aorta grows slowly over time and not over night. In my case, my ascending aortic aneurysmal dilatation extended into the lesser curvature of the transverse aortic arch, and I don't know if stretching of the aortic medial layer in this area of the aorta represents increased pain or not. Over time, the frequency of my chest pain incidents seem to increase.

If one cannot be sure of the cause of the pain, seems to me one must assume this pain is associated with aortic stretching. Risks of surgery are lower nowadays, and if a BAV patient with ascending aortic dilatation experiences chest pain, risks of rupture are greater than risks of surgery. Of course there are also risks associated with stroke post surgery that should be considered, in particular for a person in their 40s who may require coumadin management for a prosthetic aorta as well as mechanical aortic valve.

 

[rutho]

You are all awesome

You are all awesome

I feel like I have received more care and consideration from this site than from the doctor's offices. Thank you so much! I sincerely appreciate ALL of your ideas and I'm taking them to heart.

When these doctors see me, they see a vibrant 40 year old woman who does not appear sick. I think they definently dismiss alot of my symptoms because I seem so happy and am not freaking out. Without going into alot of verbage, I had to 'BEG' the nurse who took the CT Scan to give me a copy of the CT (on disk). My cardiologist said she was not going to look at it, would not give me numbers for two weeks. She knew I was meeting with Ott the following day.

Thank God the nurse at the CT lab was kind and she gave me the CD so I could take it to Dr. Ott. Odd to me, Dr. Ott did not know the numbers himself. I never saw him look at it, but I'm sure he did. When I specificaly asked him for the numbers of my aneurysm, he told me he did not remember. He handed the disc back to me and told me to check back with a cardio. I left his office feeling so bummed. My husband, on the other hand, who was with me, was elated. No surgery!

My chest pain is becoming more and more heavy. It is as if Mr.P described, a heavy feeling, a feeling that something is ripping in my heart. It is not "Stop everything" but is becoming more and more a part of my day and it truly concerns me. THe last three weeks are different - much different. Normally I am exercising, yoga, etc., and I have stopped all of it. I just know something is not right.

I am on Klonopin 1mg at night and Celexa 40 mg daily. My PCP prescribed them when he saw a lab photo of my aneurysm. He said I needed to make sure anxiety did not get me. So, I feel like my Worries (which I am a worry wart) should be managed by these drugs?

My plan is to meet with my PCP asap and let him help me. He seems to have a good grasp, care alot and he will lead me. I am going to print out all of these ideas and run through them with my PCP (and Cardio eventually).

Keep the ideas coming. You can't hurt my feelings - I just want my heart fixed and to be normal! I don't want to be like Ross and have an emergency surgery, so I take all of your warnings and advice to heart and truly appreciate it. Thank you again for all your help!

 

[PJmomrunner]

Ruth, getting back to your original post...chest pain is a known symptom of a leaky aortic valve. Did your cardiologist examine you and ask about other symptoms. Did he offer any explanation for your symptoms? Are you experiencing any shortness of breath? While you may have sought out your cardiologist and requested a CT for concern about aneurysmal pain, I wonder if his suggestion that you start surgeon shopping was related more to concern for your valve, based on your symptoms and your perception that your condition has changed.

If it were me, and provided the CT was of high quality, I would take some comfort in knowing that no one saw any sign of dissection at least. Have you taken your blood pressure when you are feeling chest pain? My normal (medicated) BP is 102/70 to 107/80 or thereabout, but on the rare occasion when I forget to take a dose of my beta blocker I find I have a very uncomfortable and disconcerting ache in my chest. It happens this was the case just yesterday and I checked my BP and found it was 137/84.

Ours is not an easy diagnosis to live with and the only thing that makes it even possible for me is trust in my surgeon. Don't let anyone make you question yourself any more than you already do on your own. Who needs that? Erring on the side of caution is the only way to play this agonizing waiting game.