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Posted 9/18/2010 6:52 PM (GMT 0)
Hey all,

New to the site. I am a 47 yr old male and was diagnosed with an ascending aortic aneurysm back in 2007; it was measured at 4.5-4.6 cm. Subsequently, I get an MRI or echo cardiogram every 6 months. I was put on losartan which is a specialty anti hypertensive used in treatment of aneurysms. The aneurysm has not changed in size. But here is the deal...

Was a road biker and would commonly raise my heart rate to 140-150 during a ride for 45 minutes to an hour. Now with the aneurysm it is restricted below 130 for sustained times...which can even keep pushing a lawn mower. I do a little isometric (weightlifting) never going over a 20# dumbbell (lots of reps) and walk....this makes weight control a real issue now. I love cardio exercise!!!!!

I have been considering surgery on the aneurysm thinking that such a surgery at 47 yrs old is better than on at lets say 52 and the aneurysm goes to 5.0 cm....

However, the insurance I have (BC/BS) would most likely consider it elective and I would bear the brunt of the cost....

Anyway, the new life style is driving me nuts!!!! In addition to stopping the biking I thought that kayaking, hiking, yard work are all probably off limits as well because of sustained heart rates....

Anyone in my shoes? Care to discuss.....
Posted 9/19/2010 3:49 PM (GMT 0)
Hi Jersey Dad,

I am sorry to read of your delima and I uderstand your concerns.   Surgery is generally recommended if your aneurysm is 2.2 inches (5.6cm) and larger.

I see you were very active and I know you must be missing your favorite things to do.  How about some low impact exercises and walking.  Walking is a great way to control weight along with a well balanced diet.  I am sure you already know these things  -  I do not have an aneurysm but hopefully someone will come forward that does and help you out.

Paying out of packet for this surgery if you can afford it may be the way to go but I would get a couple of opinions from surgeons to way the odds of the risks either way.

Welcome to HealingWell.

Kindly,

Kitt

Posted 10/4/2010 8:03 AM (GMT 0)
Hi, Jersey Dad,

I'm also new to the site, 47 years old, and have a 4.5 cm ascending aortic aneurysm. Mine was only discovered 3 months ago, and I have never had any previous heart problems.

How about swimming? I swim laps for an hour 4-5 days a week and am completely addicted to it. It's great because it works out your whole body at once, stretches you out, gives you a great workout, and doesn't put a lot of stress on your joints. This is necessary to me as I also have ankylosing spondylitis (an autoimmune disease which causes painful inflammation in joints & other areas - it caused my aneurysm and can also cause spine fusion), so I can only do low impact workouts but need to keep my body as flexible as possible for as long as possible. On the days that I don't have time to swim, I stretch, do low impact aerobic-type exercise in front of the TV, and lift 5 and 10 lb weights. (I'm able to swim year round at an outside pool - a nice benefit of living in LA.)

My cardiologist said that my only restrictions are not lifting anything heavier than 20 pounds, including weights. She said basically to avoid anything that causes a sudden exertion.

I share your concern about weight management; I lost almost 50 pounds over the past couple of years and would surely gain a lot of it back if I wasn't able to do at least the amount of exercising that I currently do.

Please keep us posted. I also have BS insurance so would be interested in how they would handle the surgery if it's not considered a necessity at the time.

Auntie Lili

(I also have Crohn's Disease and uveitis/iritis. All of these medical problems are related to my ankylosing spondylitis and one particular evil gene: HLA B27.)
Posted 10/6/2010 12:57 AM (GMT 0)
Hi Jersey dad and AuntieLili,

I'm 24 years old. I was diagnosed just about 6 or 7 months ago with dialation of 4.5 centimeters on the ascending aorta as well. I feel the same way. I used to do a lot of physical and contact sports. Its really hard to feel so limited now. I feel couped up in my own body. Though of course I'm greatful they found it and it beats the alternative, but it is still sometimes hard to accept.

I've gotten mixed advice from different Dr's, so i have been left pretty confused. The one common thing they like to say when I ask about life style changes is, " Oh, just go and be a normal kid. However don't do this, this, and this. That's all." Right. haha, basically "be a normal kid, but just one whose activities are that of a senior citizen."

Actually the last dr I saw, a very renouned specialist, told me i could do just about everything except powerlifting. Though he added, even that might be possible, but not worth the risk.

So with his last comment in mind, I emailed him asking if I could do kick boxing training and very light sparring. He responded that it was too risky.

I wonder why he didnt give me the 20 pound rule that you two have? Maybe because of my age? or he just has different beleifs about it? I dont know, but its a little concerning.

So i replied with a new message asking about running, push ups and pull ups and they havent responded. I'm going to write them again until they respond, and also look into some books to do my own research. does anyone konw any good books on the subject?

Because of the aneurysm are there any medication or supplements that are ill advized concerning our condition? I wasn't told of any. I ask because i do have other medical issues regarding musculoskeletal pain, infammation, immune system and allergies, and i try to use alternative meds as much as possble. (I did ask the dr about it in the last email, but like i said they havent responded yet)

I'm glad I found this site, because at my age it is very hard to find people around me who relate to this. I also want to add, that I do beleive everything happens for a reason. One of the positive sides to this condition is that it is a constant reminder of how precious life is, so sometimes I feel more alive than those who have nothing to worry about, because they don't have the memo tacted on to their heart to not take anything for granted.

Good luck to you guys, take care and keep me updated,

Mus1cian
Posted 10/9/2010 5:56 AM (GMT 0)
An ascending aortic aneurysm is an abnormal widening or swelling of the portion of the aorta in the human heart known as the ascending aorta. There are many reason due to which aneurysm happens such as weakening of the walls of the aorta, which is the largest artery in the body. The portion that passes through the chest is known as the thoracic aorta, and it contains the ascending aorta. The ascending aorta begins at the heart's left ventricle and extends to the aortic arch, or the bend in the aorta. The portion of the aorta beyond the aortic arch but still within the thoracic cavity is known as the descending aorta. The aorta is one continuous blood vessel, and its function is to supply clean, oxygenated blood to the body.
http://www.insideheart.com/
Posted 10/9/2010 6:20 PM (GMT 0)
@Mus1cian

I was just curious, how was it diagnosed? Oh, and given your age, have you been checked for connective tissue disorders, such as Marfan's?

@jerseydad

Do you have HR monitor? You could probably get one with an alert. I'd imagine that you could keep your HR under 130 for many activities, especially considering you have a history of keeping yourself in good cardiovascular health.

Best,

trn450

Post Edited (trn450) : 10/10/2010 5:25:32 PM (GMT-6)

Posted 10/9/2010 7:47 PM (GMT 0)
Hi, Musician,

I know what you mean about appreciating life more. I’m usually pretty calm about the aneurysm (although it’s mostly because of loved ones in crises that I am more worried about), but sometimes I feel like I have a time bomb in my chest.

I doubt that age has much to do with the 20 lb rule. JerseyDad was told about it and he sounds like he is exceptionally physically fit, as it sounds like you are, too. I would think that there would be some differences in advice from different doctors, and it’s hard to know who to believe. I would ask your specialist about it, if I were you. (I’m curious to know, what’s the name of the specialist?) And don’t you love it when a doctor tells you that you can do anything until you start naming specific things and suddenly there are lots of things you can’t do??

I have not read any books on the subject; if you find any good ones, please pass them on. All my research so far has been online. Here are a few sites that I found helpful, if you haven’t discovered them yet:

Cedars-Sinai Hospital:
http://www.cedars-sinai.edu/Patients/Programs-and-Services/Heart-Institute/Treatment-Programs/Aortic-Disease.aspx

Mayo Clinic:
http://www.mayoclinic.org/aortic-aneurysm/

This is the most recent study I found that had a lot of good info (from American Heart Association):
http://circ.ahajournals.org/cgi/content/full/121/13/e266#SEC8


I haven’t heard of any medication/supplements to avoid, but that doesn’t mean there aren’t any. Obviously avoid anything that can raise your blood pressure, like caffeine. My cardiologist put me on blood pressure medication (Lisinopril) because my BP was a little high. I’m also on medications for ankylosing spondylitis, Crohn’s Disease, and depression. I think longingly of the days that I was healthy enough to say, “I’m not on any medications and don’t want to be.” But now I am so thankful that I live in a time when there are medications to combat these problems.

If your aneurysm grows to the point where you need surgery, I believe that once you have recovered from that you will no longer have any restrictions (although I could be wrong about that – you should verify it). Although obviously no one wants to have open heart surgery, that could be among the benefits.

Good luck & keep in touch!

Auntie Lili
Posted 10/9/2010 7:56 PM (GMT 0)
A couple more things....

Jersey Dad and Musician:
How often are your cardiologists having you come in to check the size of the aneurysm for any growth? Mine does not want me to come back for another 6 months, which I find a wee bit scary.

Trn450:
Sorry to butt in, but I think you're talking about aortic dissections when you ask about Type A or B. I haven't heard of aneurysms identified by those terms. Am I wrong?

Thanks,

Auntie Lili
Posted 10/10/2010 11:28 PM (GMT 0)
@AuntieLili

You're definitely right. My bad. :-) A&B refers to the site of the vascular tear of a dissection. I don't know what I was thinking. (o_0)

RE: Heart rate and TAA

As an aside, the more I think on it the more I become confused about the 130bpm rule. Your body does a great job of regulating blood pressure to the value it considers baseline, even during exercise (read: elevated HR). I would imagine that so long as your blood pressure remains within an acceptable range during exercise, it shouldn't be a big deal if your HR increases). It may be worth getting a couple more opinions on the matter.

RE: 20lb rule, a bit of educated conjecture to serve as food for thought and no more.

I'd imagine that they consider anything above that likely to require a "valsalva maneurver". This is where people hold their breath while they exert themselves. This can transiently increase the amount of blood flow returning to your heart, resulting in a reactionary increase in blood output from the left ventricle to the aorta and a transient, high, increase in blood pressure that in repetition could increase the size of the TAA, or at worst, could potentially induce rupture (essentially zero probability at 4cm-ish TAA size range according to most literature).

Having said that, if a renowned cardiologist says that most physical activity is still on the table, I'd definitely hunt around and get a consensus.

Post Edited (trn450) : 10/10/2010 5:40:16 PM (GMT-6)

Posted 10/15/2010 10:23 AM (GMT 0)
I am 39 years old suffering from moderate aortic insufficiency due to a damaged aortic valve.  Supposedly, I never had rheumatic fever.  Myself and my family have been through a couple of sessions of trying to figure out how my aortic valve was damaged-to no avail.  I came to this website seeking some general information about heart valve replacement but was struck by something Stephen posted.  The only particularly odd thing I suffered as a child was an episode where I was stung numerous times(perhaps as many as 30) by bees (or wasps, couldn't tell you which one and my parents are both deceased and therefore cannot enlighten me further) while ripping open a nest.  I was aged two or three at this time.  I would never had made any type of connection to THAT and heart disease but I'll throw this tidbit of information out there in the hopes.
http://www.insideheart.com/
Posted 10/16/2010 1:41 PM (GMT 0)
    Hi, Havent been on here for awhile, I also have a ascending aortic aneurysm, 4.5 cm, was diagnosed in Dec. 09. I have had only 1 ctscan since. I was told I could do pretty  much what I wanted , I was given a 50 pd wt. limit, which I found surprising., and to keep my blood pressure down, which is not a problem for me. My Dr. now wants to wait till June for another scan to check the measurement. This has really upset me, so I am going for a second opinion to Cleveland Clinic, which is supposed to be the best. I am a 56 yr old female, sm-med build, go to the gym 3-4 times a week, and try to eat only healthy food, but I have no appetite, so eating is not a problem. Has anyone been to the Cleveland Clinic for this problem?
Posted 10/16/2010 6:02 PM (GMT 0)
Hi Margie:
I haven't been to Cleveland Clinic, but have read about many great experiences there. Have you read the forum topics Thoracic Aortic Aneurysm 1 and 2 on this site? I think that's where I read them all. https://www.healingwell.com/community/default.aspx?f=42&m=1025346

Syra:
What a horrific trauma that must have been for you to get 30 bee stings when you were 2 or 3! Do you remember it, or do you just know from your family telling you?
Also, what posting of Steven's are you referring to?

Trn450:
Thanks for the info on the valsalva maneuver; that makes a lot of sense to me and is good to know.


Auntie Lili
Posted 10/17/2010 11:33 AM (GMT 0)

Yes, I have read some of the previous postings, and that is part of the reason I chose Cleveland Clinic. By next week this time hopefully I will have had my second opinion,and can say that I had a good experience at the Clinic, and have a great Dr. there, etc.  Will keep the forum posted on my trip.  :-)

Posted 10/17/2010 6:03 PM (GMT 0)
Good luck! I hope things go well.

AuntieLili
Posted 10/17/2010 7:17 PM (GMT 0)
  Thanks, I appreciate it, and any prayer will be greatly appreciated also. This forum has been a lifesaver. Otherwise, I really dont have anyone to talk to about this that would understand.  Thanks again,  Margie
Posted 10/18/2010 6:45 AM (GMT 0)
‎34yrs old and I was recently diagnosed with a thoracic aortic aneurysm in the ascending aorta and aortic arch. Also with bicuspid aortic valve and mitral valve regurgitation. Right now the cardiologist is suggesting beta blockers and close monitoring. However, due to other medical issues (asthma, allergy injections) the doctors are trying to decide if the beta blockers are safe and the best option.

If anyone knows of a good cardiothoracic surgeon in the Dallas/Ft.Worth, TX area, please let me know. I am looking to get a second opinion.

Thanks,
Jessy
Posted 11/3/2010 5:39 PM (GMT 0)
HI all,

I am new to the site. 50 years old male, ascending aortic aneurysm 4.7 cm via MRI. glad to have found your thread as I have been very concerned about how to maintain physical activity levels since I was diagnosed this past July. I am an active person, fit, usually backpack with 70 pound packs (ultralight backpacking here i come!), work on the family ranch in the summers (the doctor said no more cow throwing), and have a one year old boy who is already 22 pounds and about to start walking (running?). My cardiologists disagreed on treatments, but agreed on 50 pound lifting limit, and also said I could continue cardio exercises with no limits. That made me interested in your thread as many of you got different advice. I also do environmental research in China and the Himalayas and the docs both said I could climb at high altitude with no concern, just no heavy lifting. I am going for a third opinion mid-November to try to sort this out prior to my second MRI in January.

I have a number of questions on measurements. I wonder if the 4.7 cm has different meaning depending on the size of one's body? It seems to me this might matter as we all are in the balance on when to operate. in this sense it appears to be a bit more of an art than a science in the predictive aspects of risk. I asked the cardiologists and they said their charts were averages that did not take into account the size of the actual patient. Has anyone learned more on this aspect?

It also appears that mri's are the gold standard, though I had to fight to get one as it is more expensive then the ct. the ct's also have radiation issues that i am sure everyone here has read about. given how often we may need them i am continuing to push for the mri's. any other info on this appreciated.

I have also been told by one cardiologist to start on a low level of beta blockers. i am concerned about side effects. has anyone had any experience in this they could share?

Thanks for any thoughts, and I am glad to join the conversation.

Sincerely,

NMC
Posted 11/4/2010 10:41 AM (GMT 0)
Hi NMC, Glad that you joined the forum. This is a great place to come to for info and support. It sounds like you travel alot, so you may want to consider a trip to Cleveland Clinic.  I was just there for a second opinion, and it is a amazing place. I am sure you will find all the answers to your questions there. I had ct scans, my aneurysm measures 4.5, and I willl have another next fall. mri has never been offered to me. The Clinic has a wonderful website, check it out , and let us know what you think. There have been others from this forum who have also gone there.  I hope they have the answers you need, glad to meet you,   Margie
Posted 12/26/2010 1:59 AM (GMT 0)
Glad to have found this site. I'm a 55 year old female with a newly diagnosed ascending aortic aneurysm of 4.0. I'm very fit: run about 45 min-1 hour each day, workout with weights, as well as take the occasional hour long class at the gym. I don't have high blood pressure, never have; I don't high lipids, never did. My doctor (vascular cardiologist @ Duke) told me I had no limitations on my cardio workouts, but should limit my weight lifting to 1/2 my weight (so about 50#), particularly upper body weights. I don't lift more than 50# with my upper body anyway, but I do lift a lot more than that with my legs. I have backed off on the weight and increased the number of reps. With regard to heart rate, my doctor said that most patients are told to keep their heart rate below 130, but that at this point in time, possibly due to my fitness level (??) I don't have those limitations. I was diagnosed via CT, but my follow up visit (1 year- which makes me nervous - I'd really feel better if it was 6 months) is already scheduled for an MRI. Dr said it will give him more detail than the CT. I have 3 daughters, ages 12, 13, and 14. I'm so nervous about the aneurysm dissecting, and leaving my daughters without their mom before they become adults. I think about this every day. I've only known about the aneurysm for 2 weeks, so I'm still adjusting to the whole thing. I'm not liking it, that's for sure. Every time I go out for a run, I keep thinking, "Really? Really? Is this really okay?" Anyway, thanks for letting me ramble. I don't like to let my husband know I'm so scared, and I haven't told my girls. It's nice to have this place to come to.
Posted 1/20/2011 1:13 AM (GMT 0)
Hi,

My dad had the surgery for this 18 years ago and is doing great he is now 87yrs old. If you would like the name of the surgeon who did the surgery just let me know. We traveled to Houston TX for the surgery from North Carolina. We went there since the surgeon specialized in this type of repairs. My father also had his valve replaced which was the cause of the aortic aneurysm. He hasn't had a problem since. He actually never had any symptoms it was found on a routine physicial. They were just watching it and he didn't want to be a ticking time bomb so he decided it was time to stop worrying about it and do something. He actually played golf the day before we left for TX. I wish you the best ....and again if you want the surgeons information I can get that to you.

C-
Posted 1/20/2011 1:22 AM (GMT 0)
Carrie, thanks for your response. Do you know the size of your dad's aneurysm when he had his surgery? My dr at Duke also specializes in aortic aneurysm surgery, but he definitely just wants to watch it. I guess I should see how fast it grows, or not. It sure makes me nervous though. Apparently, 4.0 isn't that large yet, but I would be really interested in what the size of your dad's was. Thank you!
Posted 1/20/2011 1:25 AM (GMT 0)
Hi txjessy

I know of an excellent surgeon in Houston TX at St. Luke's Hopsital . This surgeon did surgery on my father 18 years ago for the same problem you are having. My dad had his surgery when he was 69 and he is now 87 years old and has never had a problem.

We traveled from North Carolina to TX because this MD was so highly recommeneded.

Carrie-

Joseph S Coselli, MD
Thoracic Surgeon
Male - 30 years experience

St Luke's Episcopal Hospital
6770 Bertner St Ste C-350
Houston, TX 77030
(832) 355-9910


Read more: http://www.vitals.com/doctors/Dr_Joseph_Coselli.html#ixzz1BXCJle7K
Posted 1/20/2011 1:28 AM (GMT 0)

jerseydad63 said...
Hey all,

New to the site. I am a 47 yr old male and was diagnosed with an ascending aortic aneurysm back in 2007; it was measured at 4.5-4.6 cm. Subsequently, I get an MRI or echo cardiogram every 6 months. I was put on losartan which is a specialty anti hypertensive used in treatment of aneurysms. The aneurysm has not changed in size. But here is the deal...

Was a road biker and would commonly raise my heart rate to 140-150 during a ride for 45 minutes to an hour. Now with the aneurysm it is restricted below 130 for sustained times...which can even keep pushing a lawn mower. I do a little isometric (weightlifting) never going over a 20# dumbbell (lots of reps) and walk....this makes weight control a real issue now. I love cardio exercise!!!!!

I have been considering surgery on the aneurysm thinking that such a surgery at 47 yrs old is better than on at lets say 52 and the aneurysm goes to 5.0 cm....

However, the insurance I have (BC/BS) would most likely consider it elective and I would bear the brunt of the cost....

Anyway, the new life style is driving me nuts!!!! In addition to stopping the biking I thought that kayaking, hiking, yard work are all probably off limits as well because of sustained heart rates....

Anyone in my shoes? Care to discuss.....

Hi Jersey Dad,

My dad had the surgery for this 18 years ago and is doing great he is now 87yrs old. If you would like the name of the surgeon who did the surgery just let me know. We traveled to Houston TX for the surgery from North Carolina. We went there since the surgeon specialized in this type of repairs. My father also had his valve replaced which was the cause of the aortic aneurysm. He hasn't had a problem since. He actually never had any symptoms it was found on a routine physicial. They were just watching it and he didn't want to be a ticking time bomb so he decided it was time to stop worrying about it and do something. He actually played golf the day before we left for TX. I wish you the best ....and again if you want the surgeons information I can get that to you.

C-

Posted 1/20/2011 4:25 AM (GMT 0)
I had a bad A/O valve and was admitted in an emergency with chest pains, etc. Found out I also had a 6.5 cm
Asending Aortic Aneurism. I was already taking aspirin and Plavix. Had a 16 day hospital stay, Surgery for the repair of the Aorta, valve replacement and one bipass graft. I was 60 yr old and came through fine. But they sure watched me close for the first 7 days before the surgery, Big Aneurysm. Hospital bill was 208,000 and 60k doctor bill.
Posted 1/22/2011 3:56 AM (GMT 0)
   I went for my 6 month check up and the aneurysm remaind at 4.3 I was diagnosed with it in December of 2009 but later found CT scans from 2007 that showed that i had an aneurysm measuring 4.3.It as not changed yet I try to exercise everyday try not to lift over 20# per doctor advice.I'm currently on 2 blood pressure medications Lisonopril and Bystolic plus Crestor from doctor recomendations. Never took any medications prior to this diagnosis.I've come to terms with my condition and I am more aware of the important things in my life,like my family.This condtion has made me respect and enjoy all that surrounds me.I'm 51 and my mother,father,brother and uncles have had aneurysm.All I can say is get on board and enjoy the ride.
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