Update after Stanford Appointment

[caligirl]

Hi everyone just wanted to post an update after my appointment yesterday at Stanford. I saw the cardiologist at the center for marfan syndrome and aortic disease, and also had another echo because my previous cardiologist would not give me a copy of the CD of the one done in her office in May. They had 3 different doctors looking at my echo, because they said it is was very hard to tell if I have a "true" bicuspid valve but the fact that I have an ascending aneurysm they are going to say it is a bicuspid. He told me that I have all 3 leaflets but one of them is thicker and fused a little bit. The aneurysm measures 4.3 -4.5 cm they are not sure of the exact measurement due to cardiac movement but those are the numbers they get from the CT I had done as well as the most recent echo. For now he put me on a low dose of metoprolol (12.5 mg per day) , and will follow with another echo in 6 months to check the growth rate of the aneurysm, he also advised me to wear a medical bracelet that states I have a thoracic aortic aneurysm. He said if it is growing slowly then I will probably not need surgery for 5-10 years. Also from what I understand my overall heart function is very good, and my valve is not problematic yet no stenosis and only trace regurgitation. I am much happier with the care at Stanford they were very thorough explaining my condition and everyone was so nice and friendly. I informed him that I have severe anxiety issues, which I do I have OCD germ phobia, and he told me that the metoropol will help with those symptoms. I also let him know that since my diagnosis last month I have been experiencing hand and mouth numbness and he said most likely that is anxiety related. I feel so much better and more comfortable with Stanford and am glad I went there. Just curious for anyone that has had to replace the ascending aorta what size was it before they recommended surgery, and if your valve is well functioning would they just leave the valve as is.

 

[Sarah_Louise]

Glad to hear you are happier now & you can possibly avoid surgery for up to 10 years!!
love Sarah xxx

 

[Bill B]

Glad things went well at Stanford. You can tell from my signature below that I am partial to that place. I fell in love with my surgeon (figuratively) during my initial consultation. I knew I was in the presence of greatness.

I actually don't recall how large my ascending aorta was at surgery. The main reason for my surgery was my valve - it was in horrible shape, unlike yours. My surgeon recommended repairing the arota at the same time even though it may not have met the criteria at that point. In your case, should the aorta need repair first, then some decision needs to be made about that valve. I'm JUST GUESSING, but I would think if the valve is STABLE and functioning well enough, they would leave it alone or perhaps do a repair if that would help. Your native valve, if working well enough, would be far prefereable to prosthetic valve. It's a good question for one of your future follow-up visits.

 

[Garserin]

Caligirl, I was in a similar situation as you. My AA aneurism was diagnosed in 2005 at about 4.6 cm. At first I had echoes every 6 month and the aneurism stayed fairly stable. I was told I would need to consider surgery if/when the aneurism reached 5.5 cm. April 2011's echo showed the size at 5.5 cm and I had surgery a month later. Like yours, my aortic valve is also tri-cuspid and in good enough shape to be reimplanted in the aortic graft. I had severe regurgitation and my ascending aorta measured 5.7 cm, the root was at 6 cm at the time of surgery. So if your valve is in good shape they will just replace the aorta and reimplant the valve.

If you have any questions, just let me know.

 

[ElectLive]

Caligirl - 5.5 cm is the baseline point for surgery assuming no relevant disease conditions or risk factors. Those with a bicuspid valve (which sounds like still a question mark for you, but certainly a likely possibility) inherently have a connective tissue disorder, though, that essentially can weaken the aorta and make problems more likely than in the general population. So, surgery for those with a bicuspid valve is now recommended at 5.0 cm, sometimes even sooner. Other factors do come into the decision (growth rate, body size, symptoms (if any), and general risk profile for surgery) also so it's impossible to say for certain what it will be for you. But Stanford should take very good care of you and ensure that the best decision relative to timing is made for you. Best wishes moving forward.

 

[caligirl]

Thank you everyone . This forum is full of such valuable information and is very helpful. The wait seems like its going to be the hardest thing. I am trying my best to stay stress free but it is very challenging.

 

[TheBFG]

I was also experiencing anxiety for the longest time and the idea of a dissection/rupture was always in the back of my mind. I've visited the ER numerous times from chest pains and neck pains, to left arm numbness and vertigo. One time I thought I was having a heart problem It turned out to be a pneumothorax. Whenever I get stressed now I take a walk to a nearby park and soak up the sun for vit D. It really helps clear my mind and the SUN is a great mood lifter. Just remember to stay hydrated because the sun in CA triggers my migraines and burns my skin, esp in the summer. I tried to get a referral to Standford marfan clinic, but ended up not going becasue it wasn't covered by my insurance. From what I hear and read, Standford is a great place. They seem to have great doctors and are on top of the lastest research and treatments. Good luck to you and don't be afraid to ask your doctors any and all the questions you want answered.

 

[sood]

Caligirl you seem to be in almost an identical situation I am in! I am new to the site and just posted this:
http://www.valvereplacement.org/forums/showthread.php?40471-Decisions!-New-to-the-site

I too suffer from OCD but have never taken medication from it.

The bracelet seems like a good idea, do you just make it yourself or do they actually have one somewhere you can buy? I wanted to put something in my wallet about it. I did learn from my appointment with my cardiac surgeon that dissection of the aneurysm is fixable and you will have time to get to the ER, etc.. He did say the dissection causes some long term issues though. As far as rupture the chances of that while they exist are very low. And of course if a rupture does occur it is most likely game over. I have an aneurysm worse than yours and have been advised to wait and stay the course. I'm actually pretty happy someone in my boat is getting similar information. And you should be even happier because my aneurysm is worse at 4.8-4.9 cm.

 

[caligirl]

sood:

I ordered the bracelet from medicalalert.org, basically the dr wants me to wear it in case I ever pass out, because he said in the ER they don't usually check for aortic aneurysm's. I just want them to fix the aneurysm now without replacing my valve since it is still working well. I really hate walking around with a so called ticking time bomb in my chest. The thought of something bad happening consumes my thoughts every day, but they seem to think that the risk of it rupturing is less than the risk of surgery. Did your dr tell you how long they want to wait until considering surgery for you/

 

[Lynlw]

Im glad you were able to get some answers are happier with the care at Stanford. I was wonderring, is your Aneurysm in the ascending aorta, or the root like you said in your earlier post? The root is larger than the rest of the Aorta, so a 4.5 there wouldnt be as dialated as the same measurements in the Ascending Aorta, if that helps with your anxiety.

 

[caligirl]

Hi Lyn, the original cardiologist that was very unprofessional and I was very unhappy with wrote on the CT referral that my aortic root was dilated but it is in fact the ascending aorta the root is normal size. The CT scan as well as the echo I had at stanford showed that the root is normal the ascending is dilated and measures between 4.3 & 4.5 cm.

 

[sood]

caligirl:

Thanks for the link! I think I'll order it too. I hear you on the ticking time bomb, part of whether I decide to do the surgery or not will be whether I can live with the ticking time bomb, although I have done so for the past year without a problem - mainly probably due to the fact I thought I had until 5.5 cm and the cardiologist didn't make a big deal of it at the time, but now I feel more urgency because they are saying 5.0 cm. My cardiac surgeon did mention that sometimes the aneurysm plateaus and doesn't change for a long time (several years). He threw out 5 years as an example but I think it was just an arbitrary number. They just don't know. I did read on an internet post somewhere that one person claimed their aneurysm reduced in size after taking significant blood pressure medication. My goal over the coming weeks is to lower my blood pressure as much as possible since that is the most important variable in this whole aneurysm. I was on caduet for a while last year but I stopped and started taking garlic pills from costco, they have been regulating my blood pressure pretty well. I'm gonna try to do everything I can to control the blood pressure including asking for medication if I need, stopping caffeine intake, not having salt (trying to cut out as much soda as well since it has a lot of sodium) and increasing my exercise and hopefully losing a few pounds too. You should get a home blood pressure monitor if you haven't done so already.

sood:

I ordered the bracelet from medicalalert.org, basically the dr wants me to wear it in case I ever pass out, because he said in the ER they don't usually check for aortic aneurysm's. I just want them to fix the aneurysm now without replacing my valve since it is still working well. I really hate walking around with a so called ticking time bomb in my chest. The thought of something bad happening consumes my thoughts every day, but they seem to think that the risk of it rupturing is less than the risk of surgery. Did your dr tell you how long they want to wait until considering surgery for you/

 

[sood]

caligirl: can you double check the link you sent? I tried to load it to find the bracelet but the address goes to some random site. thanks.

sood:

I ordered the bracelet from medicalalert.org, basically the dr wants me to wear it in case I ever pass out, because he said in the ER they don't usually check for aortic aneurysm's. I just want them to fix the aneurysm now without replacing my valve since it is still working well. I really hate walking around with a so called ticking time bomb in my chest. The thought of something bad happening consumes my thoughts every day, but they seem to think that the risk of it rupturing is less than the risk of surgery. Did your dr tell you how long they want to wait until considering surgery for you/

 

[Lynlw]

caligirl: can you double check the link you sent? I tried to load it to find the bracelet but the address goes to some random site. thanks.

Im not sure this is the one she used but it is the "official" one many use, http://www.medicalert.org/shop/shopHome.htm?selected=Medical+IDs

 

[sood]

Thank you, I found this one too: http://www.americanmedical-id.com/

 

[Lynlw]

Thank you, I found this one too: http://www.americanmedical-id.com/

There are quite a few companines that make medical Id bracelets, but many people prefer Medicalert and the services they offer, and the fact you have a 1800 number medical personal can call and get alot more info than is on a bracelet. I dont know if that is important to you

 

[sood]

There are quite a few companines that make medical Id bracelets, but many people prefer Medicalert and the services they offer, and the fact you have a 1800 number medical personal can call and get alot more info than is on a bracelet. I dont know if that is important to you

Thanks so much for pointing that out, I didn't know that and it makes total sense, I've always wondered why someone didn't come up with such an idea. Glad it exists! I'll definitely use them.

 

[AmyBL]

Hi Caligirl and sood -- From a native California girl/woman to another (me to you) and sood, too. I just had my first follow-up echo yesterday and was told my ascending aorta is now 4.8 (6 months ago it was 4.5) but my valve looks great. No stenosis or leaking. Growth of .3 in six months seems rapid to me. What is wierd is that my blood pressure is excellent and has been my entire life.
Did you two mention physical restrictions? I was just about to take out my big dog for a walk (and I mean BIG -- 155 lb. St. Bernard/Mastiff mix) but became frightened that if he pulled too hard it might be too much pressure on my aorta. I get the ticking time bomb thing.
Anyway, if you could post what you have been told about physical restrictions, I would appreciate learning about your situations.

Thanks,
AmyBL

 

[caligirl]

Hi AmyBL,

The only thing my dr told me was not to lift anything over 40lbs, and not to sprint if I run. Other than that he said exercise is good for your overall heart health. So since yours seems to have grown fast are they recommending surgery soon?

 

[ElectLive]

I just had my first follow-up echo yesterday and was told my ascending aorta is now 4.8 (6 months ago it was 4.5) but my valve looks great. No stenosis or leaking. Growth of .3 in six months seems rapid to me. What is wierd is that my blood pressure is excellent and has been my entire life.
Did you two mention physical restrictions? I was just about to take out my big dog for a walk (and I mean BIG -- 155 lb. St. Bernard/Mastiff mix) but became frightened that if he pulled too hard it might be too much pressure on my aorta.

Amy - The clinical definition of rapid growth is greater than 0.5 cm per year, so your 6 month rate of growth is on that path. The problem of course is that either (or both) measurement might be slightly off, but the more consistent the procedure (same machine - same tech being best case) usually the higher degree of accuracy. Have you seen a surgeon or just a cardiologist so far? For those with BAV, rapid growth at the ascending aorta is one of the key considerations for surgery prior to 5.0 cm.

Physical restrictions are very relative to each person's own capabilities but generally speaking moderate aerobic exercise is usually just fine, in fact encouraged. Vigorous aerobic (running and basketball as examples) exercise may not be without other precautions such as a stress test. Isometric exercises are where most of the caution comes into play, but again, it is very relative to personal capability. Numerical limits don't make much sense, so more general advice such as only lifting what's comfortable and not "bearing down" (Valsalva maneuver) are typical recommendations.

Just so you know, all of what I've said is pretty much straight out of the Thoracic Aorta Disease Guidelines for management of patients in your situation. By the way, I'd be willing to bet my 50 lb dog could pull nearly as much as your "beast" (a stubborn dog with determination and leverage can do pretty much anything no matter how small :biggrin2, so speaking from experience here, you might consider a good pressure collar (not the mean ones, the "gentle" ones). When used properly, it can definitely help reduce that problem. Yeah, I know, 155 lbs is still BIG, but worth a shot, good luck...