Thoracic Aortic Aneurysm --- Lots of Questions Without Answers

[KayBee718]

I was diagnosed with a 4.4 cm TAA of the ascending aorta in early November, 2014 after an echo to investigate an abnormal EKG.

Shortly thereafter, I started having high blood pressure readings and I was prescribed two BP meds, which I have taken religiously. My BP is now perfect.

This thing has never been far from my mind since it was diagnosed. I'm sure all of you can relate to that!

Fast forward to now.

After having some chest pain last Wednesday, I drove myself to the ER. I had a CT angiogram in the ER, and I was horrified to find that my aneurysm is now measuring 4.9 cm at the level of the sinuses of Valsalva in the aortic root. The ascending aorta was 4.2. Due to my familial history (uncle, grandmother, her father have all had aortic aneurysms), I have now reached the surgical threshold and my cardiologist, whom I love, had referred me to a cardiothoracic surgeon. Yikes. Unfortunately, I can't get in for my first appointment with the surgeon until the 30th and I'm pretty frightened. At the same time, I'm sick of living with this time bomb and I'm SO ready to be rid of it. Waiting three more weeks for answers is pretty much unbearable so I'd like to reach out to people who have been in my shoes.

I'm a 49 year old woman, overweight but otherwise healthy, never smoked, cut out caffeine completely a few months ago. As I described above, I have a familial history with these nasty little buggers and my grandmother was paralyzed when she came out of surgery to fix hers.

My questions...

As described above, the 11/2014 echo showed that the aneurysm was 4.4 cm. The 03/2015 angiogram showed it as 4.9 cm. 0.5 cm in 4 months, or thereabouts. I understand that comparing these two test results is like apples and oranges, but how do I know how much it's really grown? I know that "rapid growth rate" indicates surgery. Has this grown rapidly? I would think so, but I don't have an MD after my name.

My angiogram also showed mild cardiomegaly. Is this common with an aneurysm of the ascending aorta? It seems like it would be since the heart is is trying to push blood thru an inflated balloon. Will it get better after repair?

Sneeze and chest pain. This developed several months before I was diagnosed. I sneezed last night and the pain was intense for about 20 to 30 seconds. I'm already frightened.....things like this don't help

Does anyone have experience with Baylor Heart Hospital in Plano, TX? I have read stellar reviews on-line - just checking in with peeps who have been there and done that.

What goes into scheduling such a major procedure? I read something that said they had to have cardiac cath before scheduling surgery. What is that and why?

How long should I plan on being out of work when I have surgery? I have a sedentary job without lifting.

I guess the biggest question is what are the chances that the surgeon is going to recommend surgery now vs. waiting more. I'm ready to get it over with. I've read that the risk of rupture or dissection at this point is 5% (1 in 20) per year. Surgical mortality is 1.5% to 2.5%. With those odds, I have to say that I'll take the surgery for $1000, Alex.

 

[jhc1]

Alex-I'm also not an MD, but can share what my cardio and surgeon told me…first, there is some level of uncertainty in the measurement of the aortic aneurysm, especially on the echo. Ask your cardio about the growth rate. A cardiac cath is a procedure where they thread a long catheter either through your femoral or radial artery into your heart. It allows them to inject radiolucent dye and image things in detail. they can also measure things like flow rates and pressures that characterize cardiac performance. Mine was done through the radial artery, and was relatively painless. How long you are out depends on what procedure your surgeon decides you need. As far as hospitals, if you trust your cardio, have him/her recommend a couple of surgeons, pick one, and go where they practice. Good luck on your journey. The folks here are very helpful, and compassionate, and helped me get through my valve replacement and aneurysm repair.

 

[ottagal]

Hi Alex,
Welcome to this great forum. First of all take a deep breath...as scary as this all sounds, this surgery has been done before and there are many members of the forum who were diagnosed and walking around with aneurysms.



I didn't have surgery for an aneurysm, but for a stenotic valve, but now have an aneurysm starting (4.1 cm). The one question I can possibly answer is my cardiologist sent me for a cardiac MRI to confirm the aneurysm and told me this was a more accurate test than the echo. I understand the concern about the change in measurements and I guess you can't go 'back' regarding the echo. You have done some good research.

Ask your questions and hear what the experts suggest.

Best of luck to you. I am sure others will chime in.

 

[Southrnshooter]

Hey, I just went through this in October of 2014. Maybe I can help. My aneurysm was 5.2 cm at the time it was discovered. I also had a bicuspid aortic valve that would need replacing. I was 47 and very active. Found due to a heart murmur in September. Mine grew to 6 cm in 3 weeks. However my surgeon said that was very uncommon. Please don't worry that this could happen with you. Again, VERY uncommon to change that rapidly. From discovery to surgery was just over a month. They do a cath to make sure there are no other issues with your heart that they may want to fix while they are in there. My cath came out perfect. No blockages.

I went to the hospital 2 days prior to the surgery for all the testing. Got to the hospital at 6am the morning of. I was in surgery by 7am and out at 4pm. Woke up about 8pm and they had me up and walking at 8am the next morning. It is major surgery but it really is not that bad. The first day I walked 3 laps around ICU. Was out of ICU in 2 days and went to the heart unit where I stayed for 4 days before I went home. I was back at work in 5 weeks doing administrative stuff.

Just watch the coughing and sneezing after, that is the worst. Hope this helps. I am back to my normal self now, running every day. Did 5 miles yesterday.

 

[KayBee718]

Thanks, everyone!

My name is Karen, not Alex. The last line of my OP was a reference to Jeopardy and Alex Trebek. LOL

I'm alone here in Texas with the exception of my adult daughters, and going thru such a major procedure without someone to lean on is a bit daunting. That's really getting to me. I'll have relatives coming in from out of town post op to babysit me while I recuperate.

I try to be a well educated medical consumer so I've been reading everything I can which leads to more questions, and I want answers! LOL

 

[AZ Don]

Welcome to the forum. Many of us have been thru this already and looked for answers just like you. My aneurysm was found on a test for an unrelated issue and was already 5cm (root and ascending). I had valve sparing surgery to repair it in May 2013.

how do I know how much it's really grown? I know that "rapid growth rate" indicates surgery. Has this grown rapidly? I would think so, but I don't have an MD after my name.

Frankly you don't. I've seen reports of echo's that are off by several milimeters. Often a CT or MRI is done to confirm the size but at 4.4 they might not do that since even adding the margin of error doesn't put you at the general surgical criteria of 5.5cm. I've read that on average an aortic aneurysm grows about 1mm per year, though individual results can vary widely.

My angiogram also showed mild cardiomegaly. Is this common with an aneurysm of the ascending aorta? It seems like it would be since the heart is is trying to push blood thru an inflated balloon. Will it get better after repair?

All I can say about this is that I didn't have it and haven't seen it referenced in my research on aortic aneurysms, but it sounds like something that can be associated with aortic valves that are stenotic (narrowed) or regurgitating (leaking). I suggest you ask about this as well as the condition of your aortic valve. It is connected to the root so if there is an issue with the valve it is often recommended to replace it during an aortic root graft.

Sneeze and chest pain. This developed several months before I was diagnosed. I sneezed last night and the pain was intense for about 20 to 30 seconds. I'm already frightened.....things like this don't help

Definitely discuss this with your Dr. Symptoms associated with an aortic aneurysm are an indication for surgery.

What goes into scheduling such a major procedure? I read something that said they had to have cardiac cath before scheduling surgery. What is that and why?

Quite simply it gives the surgeon an advance view of what he will be dealing with in the surgery. A secondary reason is to check your coronary arteries. If they find significant clogs they will likely recommend a bypass while they are doing your surgery. I was never totally out during the procedure but was on enough meds not to have any worries. Afterwards you have to lie flat for up to several hours. For me they went through my leg. You should expect other appointments as well: chest x-ray, ekg, and blood work.

How long should I plan on being out of work when I have surgery? I have a sedentary job without lifting.

I expect your Dr. will suggest to stay out of work for up to 8 to 12 weeks. I wouldn't plan on going back before 6 weeks. Typically driving is not allowed the first 6 weeks.

I guess the biggest question is what are the chances that the surgeon is going to recommend surgery now vs. waiting more. I'm ready to get it over with. I've read that the risk of rupture or dissection at this point is 5% (1 in 20) per year. Surgical mortality is 1.5% to 2.5%. With those odds, I have to say that I'll take the surgery for $1000, Alex.

I'm not a Dr, but I would think that your Dr's will have to assume that the earlier echo is accurate, in which case your aneurysm has grown much faster than average and that is an indication for surgery. This combined with your family history, I would be surprised if surgery is not recommended. I agree, the odds generally favor earlier surgery.

Good luck and feel free to share any questions, concerns, etc. That's what this forum is for. Waiting is definitely the worst part. It's different for everyone but I was surprised how well my recovery went.

 

[cldlhd]

Welcome to the forum. Many of us have been thru this already and looked for answers just like you. My aneurysm was found on a test for an unrelated issue and was already 5cm (root and ascending). I had valve sparing surgery to repair it in May 2013.


Frankly you don't. I've seen reports of echo's that are off by several milimeters. Often a CT or MRI is done to confirm the size but at 4.4 they might not do that since even adding the margin of error doesn't put you at the general surgical criteria of 5.5cm. I've read that on average an aortic aneurysm grows about 1cm per year, though individual results can vary widely.


All I can say about this is that I didn't have it and haven't seen it referenced in my research on aortic aneurysms, but it sounds like something that can be associated with aortic valves that are stenotic (narrowed) or regurgitating (leaking). I suggest you ask about this as well as the condition of your aortic valve. It is connected to the root so if there is an issue with the valve it is often recommended to replace it during an aortic root graft.


Definitely discuss this with your Dr. Symptoms associated with an aortic aneurysm are an indication for surgery.


Quite simply it gives the surgeon an advance view of what he will be dealing with in the surgery. A secondary reason is to check your coronary arteries. If they find significant clogs they will likely recommend a bypass while they are doing your surgery. I was never totally out during the procedure but was on enough meds not to have any worries. Afterwards you have to lie flat for up to several hours. For me they went through my leg. You should expect other appointments as well: chest x-ray, ekg, and blood work.


I expect your Dr. will suggest to stay out of work for up to 8 to 12 weeks. I wouldn't plan on going back before 6 weeks. Typically driving is not allowed the first 6 weeks.


I'm not a Dr, but I would think that your Dr's will have to assume that the earlier echo is accurate, in which case your aneurysm has grown much faster than average and that is an indication for surgery. This combined with your family history, I would be surprised if surgery is not recommended. I agree, the odds generally favor earlier surgery.

Good luck and feel free to share any questions, concerns, etc. That's what this forum is for. Waiting is definitely the worst part. It's different for everyone but I was surprised how well my recovery went.

Did you mean 1 cm per year or .1 cm? As for work I guess that largely depends on your occupation. I was told that with my job the soonest I can go back to work is 3 months after my surgery.

 

[AZ Don]

Did you mean 1 cm per year or .1 cm? As for work I guess that largely depends on your occupation. I was told that with my job the soonest I can go back to work is 3 months after my surgery.

I've read that aneurysms grow 1mm per year (.1cm), on average.

Thanks for pointing this out. I corrected it once but this website lost my post and when it recovered it I guess it was missing the latest. At least the website allows for recovery.

 

[Dan Zulu]

Karen,

My aortic root ansurysm was discovered in October 2013 and I had a valve-sparing David procedure at UCLA the following August. I was back at work on day 7 and working full time by day 10. I've healed well and am very happy with the treatment I received. My aneurysm was measured at various facilities by various devices and the readings ranged from 3.8 to 4.7. When my surgeon measured it with a ruler it was 5.0.

My catalyst for surgery was when the surgeon told me that the David procedure was inevitable. His policy is not to actively recommend repair until 5.0, but in my case he acknowledged there was no benefit to waiting because I would have to accept the surgical risk at some point anyway. Feel free to ask me questions.

 

[Agian]

That's great Dan. How long does such an operation take?

 

[Dan Zulu]

Surgery lasted from 7:30 to 2:30. I woke up at 4 as the nurse was removing my breathing tube, then I fell back asleep until 9.

 

[KayBee718]

Wow, Dan! That's super amazing!

I'm going to have to look up your procedure.

I'm keeping a very positive outlook...It's the waiting that's driving me up a wall! My appointment with the surgeon is on the 30th. I have no idea what he's going to say....wait another six months or git er done. I prefer the git er done route....I'm a little unnerved by the rate of growth on this thing.

 

[KayBee718]

Are there any other forums on this subject that you can recommend?

I seem to remember one that had people posting their surgical experiences in detail but I can't find it now.

 

[dornole]

There's a whole post surgery thread if you click on "Forum" with lots of people's experiences . . . I have also found the "search" tool to be super useful.

 

[cldlhd]

When my ascending aneurysm was last measured it was 4.8 cm after my operation the report said it was actually 4.99 for what it's worth. From what I've read an aneurysm that " let's go " either dissects which means usually every minute you're not in surgery your chance of survival drops 1% or it ruptures which is usually game over. I'm not saying this to scare you in anyway because like you after I found out about my aneurysm I also had moments when I had some sort of "symptom" when I thought " is this it" and it wasn't .
I had my surgery on Feb 7th and if I had a sedentary job I'd be back already but since I don't the plan is 3 months.

 

[KayBee718]

When my ascending aneurysm was last measured it was 4.8 cm after my operation the report said it was actually 4.99 for what it's worth. From what I've read an aneurysm that " let's go " either dissects which means usually every minute you're not in surgery your chance of survival drops 1% or it ruptures which is usually game over. I'm not saying this to scare you in anyway because like you after I found out about my aneurysm I also had moments when I had some sort of "symptom" when I thought " is this it" and it wasn't .
I had my surgery on Feb 7th and if I had a sedentary job I'd be back already but since I don't the plan is 3 months.

I'm definitely trying to stay positive so I'm not attributing every twinge to the aneurysm, but it always is near the forefront of my mind.

That ER visit at the beginning of the month could have quite possibly saved my life. That's a sobering fact right there....needless to say, the $720 hospital bill knocked the wind out of me (thank God for insurance) but it's $720 less I'll have to pay for the surgery...I have $1500 out of pocket max.

 

[The Thief]

My ascending aneurysm was measure 4.5 before surgery, but turns out it was only 4.3, they fixed it anyway. CTY scans are most accurate in determining size, but they arent 100% accurate.