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B

BIGHEARTED

Hi - I haven't posted for awhile, but I have been reading threads now and then. When I first came to this website a couple years ago someone posted a link to a Cleveland Clinic web page regarding the stages of aortic valve stenosis. I remember 1.0 being moderate, but don't remember the rest. If anyone can post that link, I would be very appreciative.

In 2000 I was told I have BAV and an aortic aneurysm - I have an MRI yearly and sometimes an echo. Last year my aneurysm was at about 4.9 cm and I was told my stenosis was getting worse, but never was given a number. The echo was actually done after my cardiologist appointment, so I was never given the results. When they found the aneurysm they said they wanted me to wait about 15 years before having it fixed, if possible, unless the stenosis got a lot worse.

I go back in April and will have lots of questions, as I seem to be having a lot more symptoms lately. I am very SOB and often have a very hard, fast heart beat. It feels like it will jump out of my chest. I am on Toprol XL, which they told me would keep the heart from beating so hard and it worked well until a few weeks ago. I also have episodes of dizziness and stabbing pain, which I am told "are nothing". Not to me they aren't! I am wondering if these symptms could be a sign that my stenosis is worse. The cardiologist seems to be more concerned about the aneurysm staying the same size and doesn't say much about the stenosis, so I would be thankful for any information about stenosis you can give me.

I also read in another thread someone said that some doctors seem to dismiss women's complaints. I think that may be happening in my case, and I am not very effective when I deal with him.

I love this sight, and even though I don't contribute often, I do learn a lot from all of you. Thank you.
 
My son was the patient and they very much dismissed his complaints of pain, etc. IMHO, you should be calling your doc TODAY and telling him that you are much worse. If he ignores you, go to the ER. You and you alone know your body. My son almost died because his aorta dissected after they told us nothing was wrong with him. Please do not ignore this - better safe, than sorry.
Please let us know how it goes.
 
You certainly have all the signs of a worsening condition. I'd advise seeking a second opinion or going to the ER also. I'm afraid they are dismissing you, wrong as it is, it happens.
 
Last year your aneurysm was 4.9cm, and if I understand correctly, you'll have another measurement in April. Is this correct? A year is too long to wait, and there's real concern your symptoms are indicative of a larger aneurysm now than last year. The stabbing pain you mention may be attributable to stretching of the aortic media and may represent a big warning sign of pending rupture or dissection. Where are you being treated? Cleveland Clinic? We are all 'worry warts' sometimes for good reason.
 
It's time to get aggressive. If this doctor dismisses you, get online, find a doctor specializing in women's medicine and MAKE THEM LISTEN. You know your body better than anyone else and women's intuition is strong! I just found out about my condition and had my surgery all within a month. The first time I went in, I wasn't taken seriously. My chest pain was excused as "stress".
My philosophy is that it is easier to recover with a strong body. 5.0 cm aneurysm is considered dangerous. If you are symptomatic, get someone to listen. It's your body and you have to live with it.
 
Hi Bighearted -

I think that you need a second opinion. And get copies of your last several tests, echos, and such.
 
Don't wait! I met with my surgeon Mon. to schedule surgery (AVR) and he said if I experienced ANY symptoms other than my shortness of breath, or even a slight worsening of that - to call him immediately!! Don't let anyone ignore you. You know your body better than anyone else. Good luck!!

jan
 
Don't be put off by Dr's when you know something is wrong (and you do know it seems).

For me, once symptoms started they were quite bothersome. I didn't see them as the signs that they were. I had severe left shoulder pain (read: chest pain for women) and dismissed it as a pulled muscle. I just stopped doing things when the SOB got to be an issue.

If you have a supportive person that can go with you that can work to your advantage too. I'm bad at Dr. offices, I tend to not be agressive enough. The Dr. would say "well you don't look SOB right now" and I'd say "well it happens when I exert myself" and my husband would interject and say "no, all she has to do is walk once around the house and she's SOB, that's not how she was a few months ago".

Get to a cardiologist and tell them the symptoms are bothering you and then get past them to the surgeon. Surgeon's want to FIX you, cardiologists seem to want to test you forever, and wait and .....

I was lucky and had a female cardiologist and surgeon. Don't let a male Dr give you that "all in your head" or "stress" line....

I know it's hard to be tough but it's your body.

Wishing you all the best,
Ruth
 
Find another cardiologist, get a proper workover and get this sorted.

I agree that 4.9 last year for a woman (generally smaller in stature) is a big number and if you are having SOB and chest pain i'd be booking myself in for surgery.

Regards.
 
Thank you all

Thank you all

I'm sorry it has taken me so long to respond to you all - I don't have access to the computer as often as I would like. Thank you all so much for your concern. Yes, Mr. P, I am being treated at the Cleveland Clinic. It is almost impossible for me to see the cardiologist there more than once a year. I haven't talked to the thoracic surgeon there in over 4 years, but my cardiologist follows up with him. They are both excellent doctors, it is just that the CC is so big and busy - I can't just call and make an appointment. About a year and half ago, I was having some difficulty and it took me almost two months to get an appointment. At that time, after many tests, they lowered my dose of Toprol XL from 200 mg a day to 100 mg a day and it worked wonders. I am wondering if possibly I may need to have my medication adjusted again. I do have a local physician who keeps a good eye on me and I will see her next week., but I only have the MRI and other tests done once a year. I don't consider my symptoms to be an emergency, (the sob is pretty constant, but the pains and palpitations come and go) so I don't want to go to the ER. And our local ER would just tell me to go to the CC.

When I was first diagnosed with the aneurysm, seven years ago, at age 49, I was told it was 5.0 - that was a cat scan measurement. Since then I have had yearly MRI's and it has remained stable at 4.9 all that time. The surgeon told me they would like to wait until I was 65 to do the surgery. The reason they gave me was that a tissue valve would last approximately 15 years and I would not need a second surgery because of life expectancy. I actually am pretty happy with that news, as I am not looking forward to major OHS.

Ruth, yes my husband does come with me to all my yearly appointments, and he has noticed more sob, especially lately. He will be with me in April. As you can probably tell, I am definitely not assertive when it comes to talking to doctors. They ask me how I feel and I automatically say Fine! I guess I'm just a wimp.

Thank you all again for all your help. By the way, does anyone have any idea about the link I asked about that gave the degrees of aortic stenosis? I'm pretty sure I saw it here. Thanks again. Leny
 
Thank You

Thank You

Yes, Barb, that was it. Thank you so much. I will print it out this time, so I don't lose it. Thanks again. Leny
 
I am highly surprised that a doctor from Cleveland Clinic has been content with just a wait and see attitude on a 4.9 aneurysm in a woman in particular. (I'm assuming your aren't 6'5".) The unfortunate thing with aortic aneurysms is that you rarely get warning signs that they are going to blow. You may be getting those rare warning signs. My mother had no warning signs - just severe chest pain one afternoon and an hour later she was gone.

How is your blood pressure? Do you check it regularly. This is one thing they should have told you to do.

It's time for you to take the driver's seat in this. It's time to tell the doctors what they need to be doing. I learned the hard way how some doctors dismiss women's complaints. After almost dying from a medication that was prescribed to shut me up, I learned how to be very assertive.
 
I don't know how far you are from Cleveland, but if possible I would try going to the ER there, you could always say something like I was in cleveland to go the the rock and roll hall of fame and got pain, since it isn't your local ER
 
rachel_howell said:
Okay, Bighearted, start another thread. I promise I won't post on it.
Click to expand...

I'm jumping to a conclusion as to why you followed up your last post here with this one, Rachel. But your compassionate plea, while scaring even me, was a good reminder for all of us and good information as well.

Bighearted Leny - I hope things go well for your next appointment. Nancy posted some encouragement a few or several months ago to Eirecara regarding how serious we need to be with our doctors so we and our symptoms aren't brushed aside. I may look for it and post it here. I found it very encouraging. Also, like Karlynn said, it may be time for you and your husband to tell the doctors what they should be doing. I was very ill and brushed off by my (former) cardio about four years ago and it was difficult for my husband and I to know what to do next and where to go. Maybe you could print this thread off for your husband to read also. We all of us hope the best for you and your treatment.
 
From 7 Dec 2006, encouragement to Eirecara from Nancy regarding an arrogant and dismissive doctor:

"Forget the arrogance--that is a BIG time defense mechanism for him. He doesn't want his patients to mess around with his findings. To my mind, it means he's unsure of himself.

With someone like that, you have to be as bold as can be, take no prisoners attitude. Speak your mind, do not smile. TELL your symptoms, do not be meek. Say no more than you have to, but say it all. Then be silent and wait for him to answer. Don't chatter on and on. That means you are nervous and vulnerable.

If you do not understand what he is saying, ask him to explain, and do not smile when you do it. Then write down what he has said, right in front of him.

And by the way, have a list of your symptoms, printed up, looking professional. Bring two copies, give one to him and keep one for yourself. And check off your questions one by one, slowly. And do not smile.

If he gets you off track, bring him right back on track. And do not leave the office until you have the answers you want.

And do not smile. You can thank him, if he did the right things."

This is the voice of experience. I hope it will encourage you also. Take care.
 
Back Again

Back Again

To Rachel and all others who answered my thread a couple weeks ago. I am still here, but this is the first time in the last couple weeks that I have been able to post. It took me awhile to find the thread, and I had no idea there were so many posts. I read all of your posts and truly appreciate your thoughts and concerns.

Rachel, I do appreciate your bluntness and it did not offend me. In fact you said all the things I am feeling and hoping to be able to tell my cardiologist when I see him. For over seven years I have lived with this thing in my chest and have taught myself not to get upset every time I have a twinge. But now I think things are changing and I will let thm know. I hope you see this Rachel. Thanks - maybe I need to get a backbone to go along with a new aortic valve and aneurysm repair.

By the way, I am feeling better. The pains have gone away. Still very short of breath when I exercise, but otherwise doing well. I think I will take the advice offered and even print this thread out to take with me. I have an appointment with my PCP next week and will try to move up my appointment at the Cleveland Clinic if I can.
 
Thanks again

Thanks again

I just looked at another thread about a young man in Colorado who had his tests sent to CC. They also told him to wait for surgery. He is a lot younger than I am, but I see a pattern here. I look forward to getting some more information to take with me to my next appointment. Leny
 
I'm with Rachel on this. There are a number of recent threads concerning aneurysms.

I also think you should get a different opinion than your current cardiologist. It's not a question of whether he is a good person. It's about whether he is so against surgery that he feels it's okay for you to have a diminished and uncertain life instead. 4.9 is more than adequate with BAV. I recently posted a hospital recommendation I came across that a BAV with 4.5 should be considered operable. Especially a woman.

Are they waiting for 65 so that Medicare/MedicAid will pick up the tab?

Too much beta block paradoxically can have a similar effect to too little, for entirely different reasons.

Best wishes,
 
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