Could someone help me understand?

[carista]

Hi everyone, I just got copies of my medical records today so I have all my numbers, only I don't know much about what the numbers mean yet. I have a second opinion next tuesday and I suppose I could ask the doc then but I'm impatient, plus I would like all of your opinions as well as a doctors.

Basically what my cardio and surgeon recommend is that I keep getting checked every 6 months till I need surgery and they're guessing for sure no longer than 2 years and most likely in one year I will need my aortic valve replaced. Here is what my records say:

Review of cardiac MRI scan - reveals the patient to have moderate to severe aortic stenosis with ascending aortic dilatation with a maximum diameter of 4.7cm. The ascending aorta at the level of the brachiocephalic region is 3.3cm, and the descending thoracic aorta is 1.7cm.

On my echo report it says that the aortic valve area measures approximately 0.8cm sq. The peak velocity is 4.0 meters per second and the mean gradient is 33 mm Hg.

Does this make any sense to anyone ???? also I noticed it also says that the mitral valve leaflets are not thickened but that there is trace mitral regurgitation. Is that bad? I never remember my cardiologist saying anything about my mitral valve to me.

Thank you all to any help you can give me, I really appreciate it!

Carista

 

[Tom F.]

There are others here that can understand more of your records than I can, but from my own experience it appears that you have aortic dialation of 4.7cm, which means you have an ascending aortic aneurysm. That means that the aorta has expanded. The danger is that when this happens the aorta weakens, and can split apart, mean dissection. At 5.0 you are clearly in the danger zone for such a thing. And typically, at 4.5cm the docs are closely considering surgery.

I would be curious, and I would ask, whether yours is a normal or bicuspid aortic valve. If normal they might be able to repair the aorta, and allow you to keep your valve. That is exactly what they did for me.

In getting your second opinion I would encourage you, if you have not already done so, to at least once go to a major teaching or heart center hospital hospital where they do a lot of heart surgeries, and where they can offer you lots of options that small hospitals, even those with heart surgeons, cannot. These options should include the Ross Procedure, and David-type aortic valve repair procedures.

Finally, trace mitral regurgitation is, I was told, very common among people that work out a lot. In your case, unless told otherwise by the docs, I would not sweat it.

 

[Valve Nurse]

Hi everyone, I just got copies of my medical records today so I have all my numbers, only I don't know much about what the numbers mean yet. I have a second opinion next tuesday and I suppose I could ask the doc then but I'm impatient, plus I would like all of your opinions as well as a doctors.

Basically what my cardio and surgeon recommend is that I keep getting checked every 6 months till I need surgery and they're guessing for sure no longer than 2 years and most likely in one year I will need my aortic valve replaced. Here is what my records say:

Review of cardiac MRI scan - reveals the patient to have moderate to severe aortic stenosis with ascending aortic dilatation with a maximum diameter of 4.7cm. The ascending aorta at the level of the brachiocephalic region is 3.3cm, and the descending thoracic aorta is 1.7cm.

On my echo report it says that the aortic valve area measures approximately 0.8cm sq. The peak velocity is 4.0 meters per second and the mean gradient is 33 mm Hg.

Does this make any sense to anyone ???? also I noticed it also says that the mitral valve leaflets are not thickened but that there is trace mitral regurgitation. Is that bad? I never remember my cardiologist saying anything about my mitral valve to me.

Thank you all to any help you can give me, I really appreciate it!

Carista

Hi Carista, I'll try to explain this to you. When you get an echo, they are measuring the opening of your aortic valve. Normally it should be about 2.0 cm2.(about the size of a quarter) Yours is .8cm2 or about half that. I would consider this moderate. Your mean gradient of 33 mm Hg is also moderate, I wouldn't worry until it was 50-60 mm Hg. Your ascending aorta (I'm assuming this was the mid-ascending meassurement) of 4.7 is also moderate. I don't see them doing surgery until it is 5.5. The trace of mitral regurgitation is nothing, no worry at all! Of course, if you are having symptoms, then surgery would be considered earlier. I can send you some info by snail mail if you wish. Valve Nurse

 

[PJmomrunner]

Hi Karista:

I also have a bum aortic valve and an ascending aortic aneurysm. I cannot speak to a stenotic valve as mine is purely regurgitant (leaky) 'cuz it doesn't close all the way, whereas yours is more like too tight.

My aneurysm has been measured by TEE, by 40-slice CT and by high speed CT. Everybody who read each of those imaging studies assigned a different value to the size of my aneurysm from 4.0cm (on the most recent scan) to 4.8cm on the TEE. My surgeon, who is an aortic specialist at the U of Michigan, calls it 4.5cm from the first CT, so for now that's what I'm going with, although I am fortunate in that I am having it evaluated by another aortic specialist. I hope this bolsters Tom's point that it is VERY important your aneurysm be evaluated by an aorta specialist.

Tom makes another good point when he recommends finding out if your aortic valve is bicuspid. Bicuspid Aortic Valves (BAV's) are highly associated with ascending aortic aneurysm. In a VERY young person like yourself it is extremely rare to have an ascending aneurysm without an underlying reason. (BAV http://www.csmc.edu/3893.html and Marfan Syndrome http://www.marfan.org/nmf/index.jsp being two biggies)

Criteria for operating on the aneurysm varies depending on the surgeon's expertise and the relative risk of operating versus watching. (Some surgeons have a better survival rate than others, while the risks of waiting remain the same--when the risk of waiting is higher than the risk of operating, you operate.) I am also in watching mode, at least pending a confident assessment of size. I have seen some indications that some surgeons in some cases operate as soon as 4.5cm on a BAV. Most wait until 5.0cm if you have a BAV or 5.5cm if you have a tricuspid valve, the difference being a BAV that comes with an aneurysm is assumed to have crappy (or myxotamous) tissue.

You don't say whether you are symptomatic (shortness of breath, fainting, chest pain/pressure, etc...), but that is often a determining factor where the valve is concerned.

People here call it being "on the other side of the mountain" after surgery. Unfortunately, there is a majorly freaky rollercoaster ride on the way up the mountain. Hang on tight. Feel free to PM me if you want to talk.

P. J.

Hi everyone, I just got copies of my medical records today so I have all my numbers, only I don't know much about what the numbers mean yet. I have a second opinion next tuesday and I suppose I could ask the doc then but I'm impatient, plus I would like all of your opinions as well as a doctors.

Basically what my cardio and surgeon recommend is that I keep getting checked every 6 months till I need surgery and they're guessing for sure no longer than 2 years and most likely in one year I will need my aortic valve replaced. Here is what my records say:

Review of cardiac MRI scan - reveals the patient to have moderate to severe aortic stenosis with ascending aortic dilatation with a maximum diameter of 4.7cm. The ascending aorta at the level of the brachiocephalic region is 3.3cm, and the descending thoracic aorta is 1.7cm.

On my echo report it says that the aortic valve area measures approximately 0.8cm sq. The peak velocity is 4.0 meters per second and the mean gradient is 33 mm Hg.

Does this make any sense to anyone ???? also I noticed it also says that the mitral valve leaflets are not thickened but that there is trace mitral regurgitation. Is that bad? I never remember my cardiologist saying anything about my mitral valve to me.

Thank you all to any help you can give me, I really appreciate it!

Carista

 

[carista]

Thank you so much for all your replies and help! I forgot to say that I was born with a biscuspid aortic valve which was discovered when I was 10. And I already know that they can't repair it, it will have to be a replacement. As far as symptoms, I only have fatigue and some shortness of breath - only when doing activities.

I'm curious about the acsending aortic aneurysm - will this make my surgery more difficult? Is there something else they will have to do besides replace my aortic valve and will this make the surgery more difficult?

Thank you all so much for your encouragement, help and knowledge!

Carista

 

[Ross]

They may have to replace the portion of the aorta where the aneurysm is in addition to the valve. MAY. They won't know for sure until they are in there. If so, it's a little more complicated, but not a big deal to them. They do it everyday.

 

[ALCapshaw2]

Hello Carista,

If I had your report, I would be interviewing Surgeons NOW for a several reasons.

First. it is my understanding that an aortic valve area of 0.8 is one of the 'triggers' indicating that it is time for surgery. Maybe not tomorrow, but SOON.

Second, your aneurism is very close to the surgery 'trigger' and echocardiograms are not very precise. Several of our members have been told the condition of their heart was worse than predicted by their test results, especially echocardiograms.

Third, since you have a BAV AND an Aneurism you already KNOW that you need surgery. Cardiologists are notorious for wanting to wait as long as possible before surgery.

SURGEONS like to operate BEFORE there is PERMANENT DAMAGE to your heart muscle caused by compensating for a narrow valve by increasing blood pressure within the heart which thickens the heart muscle. Why wait and risk further (permanent) damage to your heart when success rates for first surgeries in patients under age 60 is 98-99%?

Check your echocardiogram report for the Chamber Sizes and see if they are normal, high normal, or above normal. If you have earlier echo reports, see if there is any change. Heart ENLARGEMENT is another 'trigger' for having surgery.

IMHO, it is better to have an experienced Heart Surgeon make the call on WHEN to have surgery, hence my suggestion that you start interviewing surgeons NOW. Look for one who has a lot of experience with BAV and aneurysms.

As far as your 'trace' mitral regurgitation, that could be a result of the 'higher pressure' in your Left Ventricle (due to the narrow aortic valve) and will hopefully go away after surgery.

Here is a rough list if Medical Modifiers in increasing level of severity:

NO / NONE
Trace
Mild
Moderate
Severe
Critical

Bottom Line: Trace is 'next to nothing'. Not to worry about the mitral valve except as an indicator that there IS another probable cause that needs to be corrected.

Yes, I AM biased toward Early Intervention. Several members (including myself) believe we got to surgery "Just in Time". IMHO, it's not worth the risk to wait.

'AL Capshaw'

 

[Karlynn]

Carista,
Just bouncing off of Al's comment, make sure the surgeon is in agreement with the cardio on waiting. He's right, most cardio's are very "wait and see". If the surgeon agrees whole-heartedly, then, if it were me, I'd rest a little easier. If the surgeon is saying "Well, uh, your cardiologist is probably right." then I would ask him/her to give their honest opinion without the prequalifier of the cardiologist's opinion.

 

[gadgetman]

Carista,

Glad to see you are getting "involved" with your situation by getting copies and reading them. For a long time I was a "stick head in the sand" type of patient. Guess I figured what I didn't understand couldn't hurt me . WRONG!!!! Once I (with my wife's STRONG guidance) got involved with my treatment I felt more in control.

As most have said, it is probably time to get that Surgeon involved. My condition went South so fast that my Cardio and Surgeon were on the same page. My first "alarm bells" were shortness of breath and low energy levels after some work until just before surgery I couldn't walk 5 or 6 steps without stopping to get my breath.

Good luck on future visits and we will send prayers and good thoughts your way.

May God Bless,

Danny

 

[Guest]

As far as symptoms, I only have fatigue and some shortness of breath - only when doing activities.

Heh...frustrating, isn't it? Well, it is for me, at least. I strongly dislike it when I plan to do something then either can't do it...or can't finish it...because I'm not feeling good enough to do so. Arg. Then again, you'd think by now this would not be an issue...heh. I'm too active, apparently .


Cort, "Mr MC" / "Mr Road Trip", 31swm/pig valve/pacemaker
'72,6,9/'81,7.hobbies.chdQB = http://www.chevyasylum.com/cort/
MC Guide = http://www.chevyasylum.com/mcspotter/main.html
"I'm just out to find the better part of me" ... 5 For Fighting ... 'Superman'

 

[KimC]

Carista,

Has your cardio recommended that you refrain from lifting anything over 20 lbs.? I've learned through my doctor who specializes in female heart disease that lifting puts strain on the brachial artery and aorta. In his opinion, women are more likely to experience angina-like symptoms after lifting heavy objects. Given your diagnosis, please be very careful when working out.

All the best,

 

[carista]

Carista,

Has your cardio recommended that you refrain from lifting anything over 20 lbs.? I've learned through my doctor who specializes in female heart disease that lifting puts strain on the brachial artery and aorta. In his opinion, women are more likely to experience angina-like symptoms after lifting heavy objects. Given your diagnosis, please be very careful when working out.

All the best,

He told me not to lift anything over 10lbs and I just haven't been into working out since, so I'm not lifting much of anything anymore. I've been trying to get back into it but it's hard when I can't do what I want, not to mention I'm just nervous about it now.

My cardiologist already had me talk with a surgeon and the surgeon said the same thing - to wait and get it checked again in 6 months. I have a second opinion at Mayo next tuesday, so hopefully that will help clear things up for me. I'll see if they say the same thing or not.

Also, I'm curious...how did you guys decide who to pick as your surgeon? How many surgeons did you talk to before deciding on one, and what were the key factors that made you go with that particular surgeon? I just don't know how to go about making sure I have a good surgeon.

Thank you all!
Carista

 

[ALCapshaw2]

My cardiologist already had me talk with a surgeon and the surgeon said the same thing - to wait and get it checked again in 6 months. I have a second opinion at Mayo next tuesday, so hopefully that will help clear things up for me. I'll see if they say the same thing or not.

Also, I'm curious...how did you guys decide who to pick as your surgeon? How many surgeons did you talk to before deciding on one, and what were the key factors that made you go with that particular surgeon? I just don't know how to go about making sure I have a good surgeon.

Carista

Those are good questions Carista!

I had my bypass surgery done locally with good results. When my Aortic Valve needed to be replaced, my Cardio suggested I might want to consider going to UAB which is a MAJOR Heart Hospital ranked #13 in the U.S. and sent me to a well known surgeon who heads the transplant group.

I'm a little surprised that with your test results the surgeon didn't want to proceed. I notice that women often do not seem to receive agressive treatment, especially younger women. Perhaps some of our female members can address this issue further.

In any case, I suggest you compose a brief history with copies of your test results attached. Then compose a list of questions and concerns for your potential surgeon(s) and give them a copy (maybe even before your appointment).

I would certainly ask about your Aortic Valve Area and the risk of Sudden Death should it close off, the risk of your aneurism rupturing, and what possible benefit there is to postposing surgery since it is clear that surgery IS necessary to correct your condition.

You will probably want to discuss valve options (review the Valve Selection Forum for LOTS of information) including Mechanical, Tissue, and the ROSS Procedure. This subject is especially important if you want to have children at a later date since childbirth while on Coumadin (for a mechanical valve) is considered High Risk. If you are interested in the Ross Procedure, you will want to interview a surgeon who has lots of experience with this procedure and a good track record to back it up. Note that most surgeons do NOT perform the Ross Procedure.

You should also ask about the surgeon's experience repairing aneurisms and his track record (morbidity and mortality numbers).

It is important to have a surgeon lined up beforehand because as several of our members have learned, "The worse it gets, the faster it gets worse" (credit to Bob H. for originating this phrase - hope that is right).

IF you have a GOOD local surgeon who is familiar with your preferred valve and aneurism repair, then having surgery locally may be OK. Personally, I would lean towards the Mayo Clinic since that is the #2 rated Heart Hospital. They should have surgeons who have seen everything and can do anything you need / desire.

Good luck with your quest!

'AL Capshaw'

 

[KAJ]

Carista,

I agree with Al about trying to have surgery at a major heart hospital. When we first learned about my valve, my cardiologist recommended the Cleveland Clinc or UAB. I wanted to go the Cleveland Clinic. When we were told it was time for the surgery, we found out my insurance covered UAB but not the Cleveland Clinic. We selected a surgeon but the next thing we knew, my cardiologist selected a different surgeon due to my past history.
My AVR was replaced and the ascending aortic aneurysm, which measured a 4.5 on the MRA, was repaired. I am now 6 weeks post-op and started back to work this past Monday. Naturally I had approval from a cardiologist before I returned.

Karl

Those are good questions Carista!

I had my bypass surgery done locally with good results. When my Aortic Valve needed to be replaced, my Cardio suggested I might want to consider going to UAB which is a MAJOR Heart Hospital ranked #13 in the U.S. and sent me to a well known surgeon who heads the transplant group.

I'm a little surprised that with your test results the surgeon didn't want to proceed. I notice that women often do not seem to receive agressive treatment, especially younger women. Perhaps some of our female members can address this issue further.

In any case, I suggest you compose a brief history with copies of your test results attached. Then compose a list of questions and concerns for your potential surgeon(s) and give them a copy (maybe even before your appointment).

I would certainly ask about your Aortic Valve Area and the risk of Sudden Death should it close off, the risk of your aneurism rupturing, and what possible benefit there is to postposing surgery since it is clear that surgery IS necessary to correct your condition.

You will probably want to discuss valve options (review the Valve Selection Forum for LOTS of information) including Mechanical, Tissue, and the ROSS Procedure. This subject is especially important if you want to have children at a later date since childbirth while on Coumadin (for a mechanical valve) is considered High Risk. If you are interested in the Ross Procedure, you will want to interview a surgeon who has lots of experience with this procedure and a good track record to back it up. Note that most surgeons do NOT perform the Ross Procedure.

You should also ask about the surgeon's experience repairing aneurisms and his track record (morbidity and mortality numbers).

It is important to have a surgeon lined up beforehand because as several of our members have learned, "The worse it gets, the faster it gets worse" (credit to Bob H. for originating this phrase - hope that is right).

IF you have a GOOD local surgeon who is familiar with your preferred valve and aneurism repair, then having surgery locally may be OK. Personally, I would lean towards the Mayo Clinic since that is the #2 rated Heart Hospital. They should have surgeons who have seen everything and can do anything you need / desire.

Good luck with your quest!

'AL Capshaw'

 

[perkicar]

Carista,
Just bouncing off of Al's comment, make sure the surgeon is in agreement with the cardio on waiting. He's right, most cardio's are very "wait and see". If the surgeon agrees whole-heartedly, then, if it were me, I'd rest a little easier. If the surgeon is saying "Well, uh, your cardiologist is probably right." then I would ask him/her to give their honest opinion without the prequalifier of the cardiologist's opinion.

Hi Carista,
I went from Moderate to severe in the matter of a few months. I have aortic stenosis, but a normal aorta and root. My cardiologist here in Louisville was more "wait and see" but the cardiologist and surgeon in Cleveland (where I'm having my surgery on Tuesday the 10th) both felt that it was in my best interest to do the surgery electively before I had any permanent damage to my heart. I already have some left ventricular hypertrophy as a result of the stenotic valve.
Have you thought about talking to anyone at Mayo, since it's so close for you? I know there are folks on this forum who've had surgery there.

 

[perkicar]

........

Also, I'm curious...how did you guys decide who to pick as your surgeon? How many surgeons did you talk to before deciding on one, and what were the key factors that made you go with that particular surgeon? I just don't know how to go about making sure I have a good surgeon.

Thank you all!
Carista

Dr Lytle was recommended to me when I made my initial contact at Cleveland Clinic, mostly because he is known as the radiation guru. He is also know for his technical abilities and willingness to tackle the tough cases that other surgeons shy away from. He does alot of reoperations.
He's also operated on a couple of folks on this list, all of whom have had nothing but praise for his ability as a surgeon and his bedside manner. I've been impressed with his communication skills--as a nurse I appreciate a doctor who can be a straight shooter without whacking a patient upside the head with the truth, and I'd say he definitely has those skills. He's very easy to talk to, and answers any and all questions easily and without talking "down" to you. I even asked him what parts of the surgery he would actually be doing--because the reality is, in a teaching institution (and even in the OHS I've seen) a Fellow might do the opening and closing and the "big gun" does the meat of the procedure. He told me that because of my radiation history and the uncertainty of what they might find when they get in my chest, he would do the opening and valve replacement, but that a Fellow would do the closing.
I think when you talk to them, trust your intuition. Look at his/her stats, the institutions stats re: your procedures success rates.
You'll make the right choice.

 

[MelissaM]

Remember the first boy you kissed? You thought he was a good kisser because that was all you knew. Then, after kissing a few boys, you got a sense of what constituted a good kiss, and what was just sloppy, wet, and yucky.

Well. . .looking for a surgeon is very similar. The first surgeon you talk to sounds good because that is all you know. After talking with a few of them, you should start to see differences that separate out one from the other.

Some questions to ask:

1) How long do they expect you to be on the heart lung machine?
2) What valve do they recommend and why?
3) When do they recommend surgery, why or why not?
4) Also look for the mortality rate of the hospital you choose

Good luck!
Melissa

 

[skimomck]

Also, I'm curious...how did you guys decide who to pick as your surgeon? How many surgeons did you talk to before deciding on one, and what were the key factors that made you go with that particular surgeon? I just don't know how to go about making sure I have a good surgeon.

Thank you all!
Carista

Our son (20yo) is having surgery at the Mayo on Tuesday (Dr. Schaff). This is the second time around for him but our first experience at the Mayo. He came recommended to us because of his experience in dealing with what our son's problems. I assume you are also seeing a cardiologist in the Adult Congenital Clinic also. Melissa's questions were good- we did that when we were deciding on the first surgeon and you do start to see differences after you talk to a few. Good luck

 

[Jewel]

Ditto to Cara

Ditto to Cara

I agree WHOLEHEARTEDLY with Al!!! In general, young women are treated MUCH less aggressively than men. At least in my experience......I have had 5 cardiologists on the "wait and see" plan. And, decided to interview some surgeons for myself (listening to most of you on this website I now have 2 confirmed opinions from surgeons about "going now" and I am on about a 6 week countdown. I am 38 - sort of young and sort of old - your perspective I guess Very similar situation but no diagnosed anuerysms (yet?). No lifting, some shortness of breath etc etc but one of the cardiologists actually wrote to my GP "no symptoms or patient denies symptoms" and the same office, a NP said "do you think perhaps you have anxiety?" Then it finally hit me - they think we are worryworts!! And that the anxiety causes some (or all?) of our symptoms. Mind you - this was a female doc and female NP. Crud! I actually had a surgeon call me back to discuss "sudden failure" and "going early to prevent future situations/damage". He also admitted that surgeons like to go early and cardios like to go later.......the reason I am listening to him is because he is an aortic specialist. I have looked up all of the major hospitals and surgeons in town and then researched which specialize in either "adult congenital" or "aortic". While I would like the comfort of Cedar Sinai, Cleveland Clinic or Texas Heart - I don't want to travel. I won't recuperate as well and would miss my kids too much! So I am looking around in town, may get a second opinion. I have asked the cardio for another echo, a stress test, and to help plan for the cath asap. It does feel better to know your numbers, make choices, visit more docs.....at least if you 'go early' you will feel comfortable in your choice. It turns out a good friend's daughter is about to 'go early' on her mitral valve as well - she is about 26 I think. It's a scary decision. I hope hearing that others are in your same boat somehow makes you feel better? Perhaps we can figure out a plan to unite women 25-40 (or so ) and plan a campaign that says "listen to our symptoms and treat us!!"

 

[M&M]

I agree WHOLEHEARTEDLY with you Jewel and Al.. I had a heart attack at age 37 and I wasn't told much at all. It was like don't upset the lady - she'll probably start to cry. I started getting arrhythmias right after my heart attack and my cardio - said: Its nothing don't worry about it.. Now I have an ICD !!! Those pesky little pvc's turned into vts..... and the last time I saw my 'previous' cardio - I told him I was having vt's and I needed a holter monitor and an appt with my electrician. He just laughed at me.. I got the monitor - a week later I gave him vt's on it - and a couple days later I saw my electrician.. No wonder heart disease is the leading cause of death for woman !!! I look at it this way - did this jerk come in the top 50% of his class or the bottom 50% - cause it makes a huge difference. Just like any profession - you have to question them. I hate to go looking for things - so I tend to wait till my symptoms get real bad - and then in the beginning they usually don't take me seriously and by the time they run the tests - its getting really bad and I say: Maybe I waited to long before I said anything. So then I end of suffering from symptoms longer. Of course we all tend to go into denial and think well this would never happen to ME !!! I'm much more assertive today than back in 1992. I wouldn't be alive if I hadn't been. I remind myself - be NICE and get what you WANT.. or what you NEED.. My new PCP - couldn't believe I had OHS and an ICD - I looked so good. She said you've got all the latest bells and whistles with the highest technology - she was amazed - woman just don't normally get it.. and I think she was quite impressed that I have come this far this long...

I do bake them delicious cookies and honestly I am very sweet.. Once in awhile I play the stupid little lady.. But I generally know the answer to my questions before I ask - and they know that.. Well, if they know ME - they know that.. That's why I've been able to give my surgeon running medals. I didn't get them cause they just dropped out of the sky !!! The only problem is - if you go in and complain about shortness of breath - they don't take you to seriously when your holding a medal in the other hand..

Can't win !! I'm not so sure I'm going to be giving them any more medals -as I think I CONFUSE THEM.. Of course I'm a WOMAN so why shouldn't I..

Marilyn (runner)