First Post- dilated aorta

[ptoddy]

Hello everyone,
First of all I would like to thank everyone involved with this site for the help and support it has given me over the past year, without it I don't know how I would have coped.
I have been reading posts on here for about 8 months and thought it was about time I introduced myself. I am a 42 year old male who up until Feb 2006 used to run about 25 miles a week at 7 minute miles. I played lots of sport and enjoyed life to the full. However on a routine doctors visit he heard a murmur and sent me for an echo, where it was found I had a bicuspid aortic valve functioning as normal as possible( 2.1 m/s). To be on the safe side I was referred for a CT scan where it was found I had a 'significantly dilated ascending aorta', 4.89cm. My cardiologist says it is not an aneurysm just a very large blood vessel.The cardio told me they will give me another MRI scan in April to see if it is stable or growing, if it is growing I will need an operation.
The cardio says the aorta is at an awkward size to small to operate as yet. I take 50mg Atenolol daily and my BP is ok. She has told me to avoid lifting and to be careful about running.
Once again thanks to everyone on this site especially those with aneurysms and any comments and thoughts would be welcomed. I have noticed that one or two of you have had your measurements adjusted after secondary scans, does anyone think that is possible with me? After all my research I feel as content as I can be with the diagnosis and plan of action, I just hope that my aorta remains stable as I have read that they can for a lengthy period of time.
Sorry for such a long post it's just that it's my first one
Paul

 

[aussiemember]

Hi Paul,

It's a bit quiet here this time of day/night Just wanted to welcome you to VR.com. I don't know anything about your particular condition but there will be others along shortly who will have some answers for you

 

[EireCara]

Welcome......

Welcome......

*Im sorry I dont have advice for you but wanted to welcome you to this WONDERFUL site...Im sure you will get LOTS of help shortly. Best Wishes to you.

 

[Turkey Hunter]

Hi Paul & welcome to the site.

My story is in the stories section, so I won't go on all about my history.

It sounds as if your doc is handling things in the best fashion. Keeping an eye on the "dialated" area is needed and in April you will know much more.

Be happy that the issue was discovered before anything catastrophic occured.

We are here for your support and feel free to ask any questions you may have.

God Bless

 

[WayneGM]

I can't offer any advice our your situation but I'm sure there are others who can. Just wanted to say "Welcome to the community".

Cheers,

 

[francie12]

Welcome! A bit of information that we found to be true--CT's and MRA's, in addition to being more accurate, tend to show slightly smaller numbers than routine echos...

Add our wishes to everyone else's--may your dilated aorta remain stable for many years to come!

 

[MrP]

Results of CT scans vary depending upon several factors, including resolution of the machine (16, 32, or 64 slices) and the radiologist's consistency of measurement and interpretation. It is important to compare diameters of your ascending and descending aorta to better evaluate the extent of your aneurysmal dilatation. The size of your aorta at 4.9cm is indeed an aneurysm....not just a large blood vessel. There's some very useful information to be found at the bicuspid foundation website,

www.bicuspidfoundation.com

and more regarding timing of surgery in the Yale research article found at the following url link:

http://72.14.203.104/search?q=cache...+valve+aneurysm+yale&hl=en&gl=us&ct=clnk&cd=9

Also review the following presentation regarding decision making:

http://www.conferencearchives.com/aats2006/sessions/1500.PGAC.10/session.html

To reduce risks of rupture or dissection, many specialists recommend surgery for BAV patients before the diameter reaches 5.0cm and others recommend waiting until it reaches this size. Regardless of size, surgery is recommended right away if you begin having symptoms such as chest pain.

Echo measurements are in fact less accurate, and in my experience, CT scans always demonstrated a larger size than echocardiogram measurements.

It is very important to be seen by a cardilogist with up-to-date knowledge of BAV and to choose a surgeon with lots of experience in this area.

All my best,
MrP

 

[ptoddy]

Thanks for all the kind replies so far.

I do think it is an aneurysm but whe I pushed my Cardio on this she said it is not because it does not bulge out like an aneurysm it is smooth like a large blood vessel.However I just think some specialists call them aneurysm's and others do not.

When I read my first post back it sounded like I was very calm and relaxed about it all,I am not,it has turned my life upside down.I am coming to terms with it a little but still worry about the short and long term future all the time.It is good to here I am not alone in this situation and there is a way out of it!!!

Paul

 

[bvdr]

Web definitions for Aneurysm
A localized, pathological, blood-filled dilatation of a blood vessel caused by a disease or weakening of the vessel's wall. [Heritage]
www.antiquusmorbus.com/English/EnglishA.htm -

Welcome! I think your situation qualifies as an aneurysm. Glad to have you with us.

 

[Meghan]

Hello Paul,

Your heart situation sounds much like my husband's - well functioning bicuspid aortic valve with an aortic aneurysm. His aneurysm was found 3 years ago and we have been monitoring it for changes with MRIs every 6 months since. I sympathize with how this can turn your life upside down. We knew about the bicuspid valve (he has a congenital heart condition, surgeries at age 1, 7, and 13) but finding the aneurysm still threw us for a loop.

I think that all I can say is that it gets easier with time to not think about it constantly and to continue on with life (except as the next MRI appointment closes in and then the worry about whether or not anything has changed, is now the time for surgery, etc, comes back in force). We had been watching Eric's aneurysm remain the same size for 2 years when his cardiologist told us to be thinking about surgery. This brought new stress and worry - knowledge of a 'someday' surgery was much less than trying to evaluate surgeons and get information about specific procedures, recovery, etc.

With respect to future MRIs/CT scans, we have found it helpful during this waiting period in that the same person in radiology made the measurements for each MRI. Eric's cardiologist showed us how by 'slicing' across the aorta at slightly different angles and to very slightly different locations you could get fairly significant differences in measurement (his aorta is at 5.1cm, so a different slice that showed a larger size would be cause for much more urgent surgery). Having the same person do the measurements has given us confidence that we are measuring the same thing each time and comparing apples to apples.

One thing that we are struggling with is what to do about Eric's bicuspid valve, since he is 26 and it is well functioning; from your description I would imagine that you will face the same questions. You have time now to find out about the options and think about what you will want to do in the future - I would start thinking about it and doing the research now before surgery is imminent.

Sorry this is long - welcome to VR and best of luck with the waiting and upcoming decisions.

Meghan

 

[jbrown413]

Welcome Paul...

Welcome Paul...

i know you would probably prefer to not be a part of our little community, but i think you'll find us helpful, empathetic, educational, and supportive. like Mr P, i highly suggest the bicuspidfoundation website, especially the lecture by Dr eric I on when to do aortic replacement surgery. you want to make sure your cardiologist knows about bavd. mine didnt, discharged me from treatment 8 years ago, and i just discovered a 5.8 cm ascending aortic aneurysm this past month. give her the website, and she if she runs with it. dont know where you are from, but there are lots of good aorta surgery centers throughout the country. and if you are finding yourself very anxious about all this, check out my website drjosephbrown.com. good luck, and welcome. -- joe

 

[Magic8Ball]

One thing that we are struggling with is what to do about Eric's bicuspid valve, since he is 26 and it is well functioning; from your description I would imagine that you will face the same questions.

Probably, i had the same, my valve was fine too. I had a bicuspid valve from birth and they found a 5.8 aneursym on a checkup but my previous checks had never even looked at its size so i had no historical data to base my decision on. My decision was to attempt to go for the one off fix and so i had the whole lot replaced in the hope that they never have to go back in again.

From memory i think a growth of .1 per year is 'normal' but you have entered that area of uncertainty of around 5.0 where it becomes more of a worry. I was told 5.0 is a worry, 5.5 is dangerous. If they'd found mine at 5.0 i may have had it done then even though it lasted until 5.8....you just don't know.

When i found out i waited about two months before i got my 'bentalls' surgery done and now post surgery my wife says it was the worst two months ever as she was worried i would just hit the deck before the surgeon got the chance to fix me up....as other people will tell you, some aneurysm's can blow when as low as 4.5 so its not a nice thing to have to deal with and i sympathise with you.

In contrast, all i can say is that nearly 3 weeks post op i feel pretty dam fine, in fact been good since 1 week post op. The aysimtomatic person i thought i was is not true anymore as i no longer feel 'tired' which i just attributed to getting old (37) and the kids sapping the the very life out of me/us.

Best of luck with your search for info, in the two months i spent on this site asking questions i went from novice to totally comfortable with choosing between surgeons to do my preferred 'bentalls' and being very calm prior to surgery.

I should put this in my signature but if you smoke, quit and if you drink coffee go decaf....the only thing you don't want to be doing post surgery is coughing...the rest is pretty easy.

Just noticed you are from the north east of england....i'm originally from newcastle but now live in australia...are you going to be going to the Freeman Hospital? supposed to be a good centre for heart stuff and probably where i'd have had mine done had i still been in the uk...

 

[MrP]

Paul,
I also want to add that going an entire year between CT and/or MRI tests is too long a wait, and especially given the size of your aorta when measured by CT scan last Feb. (If I understand correctly, your last CT scan was in Feb 2006....is this correct?) The larger the aneursymal dilatation, the faster the rate of growth, and therefore, measurements every 3 to 6 months would allow for less risky monitoring and a better understanding of the rate of growth. The size of your aorta may already be at or greater than 5.0cm many thoracic surgeons would recommend for elective surgery to reduce risks of rupture or dissection. Understandably your anxiety is high, and you incur increased worry by waiting.
MrP

 

[ptoddy]

Thank you all for the welcome

Meghan thanks for the kind words

Mr P I had my ct scan in late July and I am pretty comfortable with waiting till April for MRI,I and the cardio think it is a reasonable time to wait and see if it has grown and then take it from there.She also said it is possible it could have been 4.89cm for years,so to try and deal with it I am just hoping it is stable.

Thanks magicball for your reply I have been reading your posts and they have been very very helpful to me,I live about 25 miles from Newcastle.I feel ok physically apart from the beta blockers which make me a little tired.I too think your situation is similar to mine,and when I hear you are doing great it gives me hope.

Paul

 

[MrP]

Paul,
Thanks for clarifying this and sharing this personal information. I agree with others that this waiting period is very difficult. Since you are asymptomatic at this point, this is a very gray area and full of anxiety. One must also keep a keen eye on aortic valve regurgitation and size of the left ventricle, as you are most likely aware. All my best, MrP

 

[Arlyss]

Blood Pressure Control

Blood Pressure Control

It is not trivial to balance the factors that may lead to aortic dissection or rupture against the risk of aortic surgery.

Today aneurysm size is appropriately a major part of the guideline for elective surgery for aortic aneurysms. It is certainly very important, but it leaves something to be desired - people dissect or rupture at varying sizes, so size alone is not enough to consider. There is something else, also very important, that should be included in the assessment - blood pressure and the associated stress on the wall of the aorta.

Papers are starting to appear in the medical literature measuring aortic wall stress and blood pressure - it is no surprise that the higher the systolic blood pressure, the greater the stress on the wall. So, it is very important to deal with blood pressure while waiting for surgery. One major center gives a general guideline of 105-110 systolic for those with aneurysms.

It is very possible that those whose aneuryms reach larger sizes without an emergency have had lower blood pressure/lower stress on the wall of the aneurysm than those who dissect/rupture at smaller sizes. Unfortunately, very many of those with BAV have labile hypertension - blood pressure that spikes very high with exercise or emotional triggers. They need help to prevent that pressure spike from tearing the aorta. Some of them also develop flat out high blood pressure at some point. My husband was one of those - unkown to us his blood pressure had gone out of control. Also unknown to us was the aneurysm hidden in his chest, six years ago now.

Blood pressure medication is the best friend of those with aneurysms, lowering the pressure/stress on the thin, weakened aortic wall.

I personally would not feel comfortable "watching and waiting" unless I had blood pressure medication on board to lower the stress on my aortic wall. It is something very important to talk about with one's doctors.

Best wishes,
Arlyss

 

[ptoddy]

Thanks Arlyss for taking the time to reply.

I do understand the issue about the BP.My cardio put me on Atenolol 50mg as soon as she found the aneurysm.I have my own bp machine and it is usually between 100-110 systollic.However when I am extra worried it does peak to 125.I have read about the labile hypertension problem also.

I think my aneurysm has reached the size it has because of all the exercise I have done since I was a small child.I have played football (soccer) and trained 3 or 4 times a week since childhood,also I have lifted light weights 2or 3 times a week for years.Since I stopped playing football at 35 I have taken up running .As soon as I was diagnosed I stopped all the training hoping my aorta would stop growing.

I know there is no link to exercise and the aorta increasing in size along with a BAV,but in my circumstancesI think it is a contributary factor especially as my BAV is working ok.

Sorry for another long post once I start I can't stop!!!!

Paul

 

[Arlyss]

Hi Paul,

Someday I hope we understand much more about BAVs - I don't know why, but the great majority of bicuspids are very active, athletic people, right from child hood! My husband was not allowed to play sports in school as a child because of his heart murmur - so he took up weight lifting! Between heavy lifting and his blood pressure issues, I really have no explanation for why his aorta did not tear.

Once in a while, BAV is mentioned in a public figure. Here in the US, the press reports in 2005 about Fred Hoiberg, who was playing basketball for the Minnesota Timberwolves at the time, mentioned that it was known since he was in college that he had a bicuspid aortic valve. He had a large aneurysm and it is amazing that he didn't get into trouble out on the basketball court. Ronny Turiaf, who plays for the LA Lakers, had aneurysm surgery that same year.

Best wishes,
Arlyss

 

[PathFinder]

BAV aneurism

BAV aneurism

Hallo, guys! There is something I didn't understant - is it possible to have aortic valve replacement as a young boy (24) and not to develope aortic aneurism in the future? Or it is a part of the game always?

 

[Mike C]

She also said it is possible it could have been 4.89cm for years,so to try and deal with it I am just hoping it is stable.

It will continue to expand, the question is at what rate. Its possible and I would expect its been growing at a slow rate over many years but also possible its been growing over a short period of time. The rate of growth also helps to determine timing of surgery.

is it possible to have aortic valve replacement as a young boy (24) and not to develope aortic aneurism in the future?

yes, it is possible. However, you must watch it carefully for remainder of yoru life if it is a bav being repalced as the two are associated. I would also look closely at your aorta at time of surgery, may be a good question for the surgeon.