what should i be asking.

[as4dp]

dear members.
i am a new member who has become a big fan of this site.
my problem is this, i am 43 fairly fit, not overweight. had instances during the first few minutes of exercise, where i go dizzy. weak and if i don't lie down or stop what i'm doing collapse, first happened when i was 18. had many instances since. always thought it was something i was doing wrong.anyway these attacks got more frequent. so hit 40 and went to gp, who passed me on to cardio. had many tests angiogram, cardic mri, found to have bav with moderate stennous and regurgition on echo. thought this was the answer, and things would be done. but after nearly 3 years they say valve narrow than should be,but should'nt be enough to give symptoms i'm having.the mri has'nt given a clear answer wheather a replacement valve would be a help or not.
this is making me wish i had never gone in first place, got appointment in june, what should i be asking.

 

[ALCapshaw2]

Do you have copies of ALL of your Test Results?

If not, that is where I would start.

Once you have the 'numbers' you can compare with the standard guidelines for Valve Disease. I believe these guidelines can be found in the Reference Source Forum.

 

[as4dp]

thanks for replying, i never thought things would take this long to get a firm answer, to what is happening to me and why.
i remember talking to a friend and he said he had the same thing happening to him.
and it was all to do with the electrical pathways in his heart, simple operation to burn the area and he's right as rain.
so like most people convinced myself this was my problem.
but went to see doctor, who said he was 90% sure problem was all to do with valve,asked him his opion on when he thought i may need surgury, said sooner rather than later.
i know the must make sure that nothing else is causing the problems, hence the mri, as they belive there maybe some weakness in the heart muscle.
they have said that surgery will happen but would rather wait till i was nearly 60.
i have stopped any running and competitive sports,which i don't like to do, but are very nervous about doing any real damage to my heart/valve.
i would like to enjoy my life now, and feel great.
i don't want my health to gradully go down hill. my family do not seem to live long. dad & mum 62.
thanks again.

 

[ALCapshaw2]

Some of the parameters you will want to know and track (I use a spread sheet) are:

Effective Valve Area of your Aortic and Mitral Valves in sq cm

Pressure Gradient across the Aortic and Mitral Valves in mmHg (millimeters of Mercury)

Insufficiency or Regurgitation (same thing - means back flow) of Aortic and Mitral Valves

Dilation of Aorta (euphemism for Aneurysm), measured in cm

ALL of that information should be on your echocardiogram report, except that the upper part of the ascending aorta is not well visualized by echo (or so I 'understand').

Note that there is a high correlation between Connective Tissue Disorder (weak tissues, typically in the Aorta) and BAV. A Chest CT or MRI is the Best Way to visualize the entire Aorta.

'AL Capshaw'

 

[perrypiratesdad]

Any chance there is a coartation of the Aorta as well? What about your BP, is is low or high, and what differences are there with upper and lower extremities (eg, BP in Arm vs BP in leg)?

 

[as4dp]

again thanks for all replys, they have all been a great help.
its good to comunicate with people who can relate to my situation.
never thought to even ask for results from any tests. just let cardiologist get on with it (english way i suppose !)
but after reading posts feel better able to ask questions, and hopefully get the full facts of where things are going.
many thanks.
paul

 

[AgilityDog]

they have said that surgery will happen but would rather wait till i was nearly 60.
thanks again.

Who'd rather wait? You or the doctors? Your quality of life sounds like it is deteriorating with the things you've had to give up, so don't wait just because you think you are too young! If it is the doctors, remember lots of cardiologists prefer to wait and treat medically, sometimes until irreversible damage is done. Surgery is best done sooner rather than later. The healthier you are before surgery the faster your recovery will be. Be sure to ask for a referral to a surgeon.
If you get it done soon, you'll likely get all or nearly all your activities back!

 

[cday]

becoming a couch potato

becoming a couch potato

I read many post about people (or their doctors) who are waiting for their symptoms to get worse. This is puzzling to me. My husband had only very vague symptoms (that he didn't recognize) - until he collapsed on a tennis court. By the grace of God there was a doctor 10 feet away who was able to revive him -- which I'm told is rare. Even with that the doctors initially said he could choose to delay the operation if he was willing to limit his activities. We said let's have that operation tomorrow if possible. He had AVR the following week.

I don't know why doctors would want to wait, and want you to limit your activities, that would seem to make recovery harder.

My question would be -- Can I have it now? not, Can I wait?

 

[Ross]

I read many post about people (or their doctors) who are waiting for their symptoms to get worse. This is puzzling to me. My husband had only very vague symptoms (that he didn't recognize) - until he collapsed on a tennis court. By the grace of God there was a doctor 10 feet away who was able to revive him -- which I'm told is rare. Even with that the doctors initially said he could choose to delay the operation if he was willing to limit his activities. We said let's have that operation tomorrow if possible. He had AVR the following week.

I don't know why doctors would want to wait, and want you to limit your activities, that would seem to make recovery harder.

My question would be -- Can I have it now? not, Can I wait?

Cardiologists seem to like to wait for damage to occur, Surgeons would rather do it as soon as it's necessary and earlier.

 

[Dina]

Who'd rather wait? You or the doctors? Your quality of life sounds like it is deteriorating with the things you've had to give up, so don't wait just because you think you are too young! If it is the doctors, remember lots of cardiologists prefer to wait and treat medically, sometimes until irreversible damage is done. Surgery is best done sooner rather than later.

This is great advice, My surgery was pushed to the last minute
and for this reason certain problems are most likely irreversible.
It is so easy to grasp any opinion that leads you away from surgery
as this is natural , but this can be a big mistake in some cases,
only if there is a REAL reason to put it off should you accept this.
Wihing You the Best,

 

[Ana]

I don't know why doctors would want to wait, and want you to limit your activities, that would seem to make recovery harder.

One would love to assume that the doctors are competent and up to date on all the medical information regarding treatment plans and prognoses and risk factors (heh, in a perfect world). But really, the only way to know why a decision is being made is to ask and press for direct answers.

My husband was diagnosed out of the blue with CHF - we thought he had walking pneumonia. This was on a Friday afternoon and that night, which we spent in the ER, were told it may be possible he would be able to manage the condition medically. The PA did an echo and EKG on Carl and when I called the cardio clinic on Monday to schedule tests and follow up visits, was told that he would have to have his mitral valve repaired and that they wanted to schedule him the next morning for an cath and angio. I hung up the phone in a daze after confirming an appt. time. The next morning a nurse asked us all sorts of detailed questions (required by informed consent to the cath) regarding Carl's condition and if we knew why he was having the procedure and for what purpose. I couldn't answer anything and just burst into tears. She told us the cath would be delayed while she brought in the surgical nurse to answer our questions about the cath itself and wouldn't release Carl to the O/R until the doctor met with us and talked to us in detail about what was going on.

I swear, we lucked into one of the best cardiologists, hospital and surgeons in the country. All the docs and nurses throughout the whole ordeal treated us with respect and compassion and answered every single question we had. Even prompted us to think if there was anything that they had not answered. But, even if you haven't had such a positive experience as ours, there is no reason why your questions and concerns should go unanswered. Just put the social niceties away and start demanding. Sometimes I think docs are so used to patients taking their advice unquestioningly, that they forget to inquire if the patient has any worries or questions.

 

[tobagotwo]

It's true that many cardiologists would rather wait until just before permanent damage is done (which is impossible to accurately judge until it's too late). Apparently they want to show that they didn't rush their patients into surgery. However, you don't want permanent damage, so a doctor who says wait-and-see to something you're plainly done waiting for needs to be put out to pasture.

It's also true that most cardiologists can speak at great length about symptoms, treatments, possible causations and drugs related to arterial blockages and infarctions, but many can barely stammer through a complete sentence about valve issues, and what does come out is usually dogma heard in a lecture some years earlier, or the last thing they heard from a valve salesman in their office.

I also wouldn't rule out electrical issues as an added factor in your case, as certain arrhythmias can have effects similar to the ones you're mentioning.

This is why you should be actively involved, and why you should get more cardiologists involved. If this one doesn't know, then go to the next one. This is your heart, man!

Best wishes,

 

[as4dp]

hi once again.
sorry i haven't replied to all your welcome advice and experiences,been at local airshow, and work is hectic.
i'll be the first to admit to taking things a bit too much for granted, that the cardiologist would find the answer and i would soon be back to normal again.
my faith has taken a bashing over this. in dec 07, after a toe, cardiologist said he would push for avr,and we were looking at a time scale of 6 months for the op, my mind was mush over the xmas and new year, but thought once it was done, it would be worth it,and the success rate was an added reasurance.
but had another appointment end of jan 08, with cariologist at his clinic, asked if i had the letter he sent, no such letter received.
had discussed case with his colleague's.
valve narrow, should not be enough to give symptoms, possiable weakness in heart muscle, so off for a cardic mri.
that was mar 18th. gave 5 weeks for results to return to cardiolgist.
then rang his secretary.
got a letter dated may 1st, saying hasn't given clear answer if i'd benifit from avr or not, but would discuss my case in detail with his colleague's again, and would write to me. nothing received as of today.have an appointment june 23rd, hence my original message, im not happy about things but will make sure i use all your advice, and get the answers i feel i deserve.
kind regards.
paul.