Your opinion please

[tammy70]

Hi there. I do not post very much, but I read the site alot and appreciate all of the good information that I have gotten. Just a little back ground history on myself, I have a BAV with moderate stenosis and insufficiency with moderate pulmonary hypertension, mild MVP with insufficiency and tricsupid insufficiency. Last July my echo showed my ascending aorta dilated to 3.7 cm. In Feb my echo showed it at a 4.2cm with coarctation of the aorta. I had never been happy with my cardiologist, but after the last echo I requested a CT scan. (My maternal granmother died of a aneurysm rupture and my father has had 3 repaired and currently watching another one.) My doctor refused saying that he would recheck in six months with an echo. I requested a second opinion with my fathers doctor and he ordered a CT scan. It came back with an 4.6cm aneurysm, but thankfully no coarctation. My question is, would it be smart of me to become an established patient with a thoracic surgeon, because it seems at some point I will need this repaired? Or is that overreacting? Please let me know what you all think.

 

[Karlynn]

Since I'm not an Aortic valver, I don't know a whole lot. But I seem to remember that 5 seems to be the "lucky" number for surgery and some recommend getting it done prior to that. You definately seem to be in the realm of surgical possibility.

We also recommend consulting with a surgeon when you're approaching that time, simply because surgeons tend to be more proactive than cardiologists and like to operate before permanent damage is done.

 

[ALCapshaw2]

By all means, start interviewing Surgeons NOW.

You will want to find someone you are comfortable with BEFORE you become 'critical'. Also, let the SURGEON make the call on when to operate as they prefer to get in there before there is permanent damage or the risks become more severe. Many cardiologists seem to prefer the 'wait and see' approach which can lead to less successful outcomes.

'AL Capshaw'

 

[Ross]

I would look now. Aneurysms can do as they please. Might be 4.6 today and 5.1 tonight or worse, just 4.7 and rupture like mine did. I see no reason to wait. Start looking now.

 

[Tom F.]

I want to echo what Ross said. Aortic aneurysms approaching 5.0 need to be dealt with. While some docs differ on whether surgery is warranted at 4.0, or 4.5, when you start to approach 5.0 is when things can change quickly, with fatal results. Go and find yourself a good surgeon.

 

[tammy70]

Thanks for the advice. How do you go about getting the referral to the thoracic surgeon? Do I call myself or do I try to get my cardio to do it? That maybe a problem because he just wants to check it in 6 months with another ct scan and may not want to refer me out.

 

[bvdr]

Yes, Tammy, get a surgical consultation. You are not over-reacting but rather just being smart.

 

[Ross]

It's usually by Cardiology refereral, but I wouldn't let it stop me from trying without.

 

[Karlynn]

Only a really pig-headed doctor (and yes, there are some) is going to refuse give you a referral to a surgeon is you ask for one. He might say "I don't think you're ready yet." but I doubt he'll refuse.

 

[Eowyn Rose]

Hi Tammy.

I had my aortic valve replaced. I was close to critical and scared. The whole experience thaught me to trust in my abilities to sense what is best for me.
If I am worried I will now do what I feel I have to do. Changing the cardologist because I do not trust him does not mean that he is not very cabable. However if I intrust my health in someone I feel comfortable with I have peace of mind. Trust your instincts. Look for a surgeon and any other health proffessionals you will feel comfortable with. You will feel proactive, empowered and get the feeling that everything will be alright.
By for now
Eowyn Rose

 

[tommy]

I'd get a surgeon's opinion now. Take some time to investigate (dare I say "shop") for the right one for you. I did this and brought a list of three to discuss with my cardiologist. He validated my list and gave me the referal that I requested. He was going to recommend the best surgeon at the hospital that the cardio has priviledges. My list included the best in the Dallas area. I considered the fact that my cardio wouldn't visit me in the hospital, but don't regret for a minute my decision. BTW, from others that I talked to after surgery, the cardio's original recommendation would have been fine in a pinch.

If surgery is not required right away, don't be surprised if the surgeon dodges you a bit until surgery is required. My surgeon does not hold long-term patients. He slices them, fixes them, sews them up and follows them for a month, then it's back to the cardiologist.

Either way, you'll get a second opinion and have established a relationship that you can tap later (or sooner).

As a nurse, you may already have a good idea of what surgeons you may consider, and/or know people that can steer you. I got my best advice and validation from friends that are in the med field.

 

[KimC]

Tammy,

If I may ask for my own curiosity, what kind of CT scan did you have? Was it specifically an aortic scan? Did your doctor order it because of your father's problems?

I ask because I had a CT recently for aortic pain. My primary care doc didn't order an aortic angiogram, but a CT scan with dye that looked at the ab and pelvic organs. I don't know if he used the right protocol, and am trying to find out, but still don't have the requested records. I live in a small town so I can't take anything for granted.

I don't mean to draw attention away from your original question. If it helps, I only have moderate regurg and borderline stenosis (plus another heart condition) but have already chosen my surgeon, per my father and brother's advice. (They're brain surgeons). They said it's a good idea, just in case things progress more quickly than expected.

Best,

 

[Susan BAV]

Hi Tammy -

Where 'bouts in Missouri do you live? I've seen some other Missourians posting on this site. Missouri is so pretty this time of year!

Regarding your condition: it doesn't hurt to investigate and find a highly recommended surgeon and see what he says. I keep reading experiences on this site where cardiologists tend to try to medicate symptoms and surgeons repair problems. If a defect in your heart continues it's decline and goes too far, other damage can be done to your heart and your body. Please click on the stories section and look my story up. I was getting very bad advice from an inexperienced, or inept, or worse, cardiology group. My husband and I ended up consulting with three different surgeons. When I had an angiogram done, about seven months after my previous cardiologist dismissed my symptoms as "nothing" and told me to come back and see him in another year, my new cardiologist performed the angiogram and the results were, and I quote him, "you have weeks, not months," to get that heart valve replaced. The surgeon replaced the valve a week and a half after that.

There are much more dramatic stories than mine on this site. And many people have had to become very involved in directing their own medical care.

 

[char2mar]

Hi there. I do not post very much, but I read the site alot and appreciate all of the good information that I have gotten. Just a little back ground history on myself, I have a BAV with moderate stenosis and insufficiency with moderate pulmonary hypertension, mild MVP with insufficiency and tricsupid insufficiency. Last July my echo showed my ascending aorta dilated to 3.7 cm. In Feb my echo showed it at a 4.2cm with coarctation of the aorta. I had never been happy with my cardiologist, but after the last echo I requested a CT scan. (My maternal granmother died of a aneurysm rupture and my father has had 3 repaired and currently watching another one.) My doctor refused saying that he would recheck in six months with an echo. I requested a second opinion with my fathers doctor and he ordered a CT scan. It came back with an 4.6cm aneurysm, but thankfully no coarctation. My question is, would it be smart of me to become an established patient with a thoracic surgeon, because it seems at some point I will need this repaired? Or is that overreacting? Please let me know what you all think.

Tammy:

I would ask your cardiologist for referal to a surgeon ASAP. Based on your diagnostic tests over the past 11 months your aorta has grown ~1 cm. That growth rate alone should be ringing alarm bells off with any doctor. Has he seen the latest CT results? Put your foot down and ask for the referal. If the surgeon feels that your condition can wait awhile before surgery then so be it and at least his or her advice will put your mind at ease.

Char

 

[tammy70]

I live in the southwest area of Missouri. I know that there is a good aortic specialist in St. Louis that I would like to do my surgery when it comes to that point. I have spoke to my insurance though and they said that my cardiologist has to make the referral and to be able to see the doc in St Louis my doctor here has to state that no one in this area can do the surgery. I guess I need to speak to my doctor and see if he will do that. I am afriad that he will be hesitant to do that. Has anyone else had to go out of network to see a physician and how did that go for you?

 

[Mary]

Tammy,
I would try emailing the surgeon in St. Louis to initiate a dialogue.
I circumvented my cardiologist and made my own appointment. My GP was supportive.
After you hear from or see the surgeon, you will be able to determine whether your cardiologist needs to make the referral.

You might have to pay for the initial surgical consult without benefit of insurance. However, if the surgeon thinks you need his services, I bet your cardiologist will be agreeable to writing your insurance company and advocating a need for the surgeon's specialized expertise.
Mary

 

[ALCapshaw2]

I've noticed that MANY cardiologists seem to look only at your LATEST echo report and compare your current data with the "normal limits".

If you point out how much CHANGE there was over the last year, I'll bet that your cardiologist would me more willing to give you a referal. It wouldn't hurt to ASK, either in person, in a letter, or a telephone call (most likely through his nurse).

Becoming proactive is the best way to get what you want / need.

Good Luck!

'AL Capshaw'