Very confused

[BIGHEARTED]

Hi everyone - This is my first time starting a new thread and I hope I do it right. I am a 55 year old woman and I was diagnosed with a bi-cuspid valve and aortic aneurysm 5 years ago. I go once a year to the Cleveland Clinic for an MRI and other tests. I was told at my first visit that they would like me to wait for about 15 years for the valve replacement. I am on Toprol XL (200 mg per day) Cozaar (100 mg per day) and Dyazide (50/70 mg per day). Although my blood pressure is still higher than they would like it (135/85), my aneurysm has held steady at 4.8 and my valve has "moderate" stenosis. I was told that I am maxed out on blood pressure medication. My last echo, done in April showed the valve at .9 - I'm not exactly sure what that means, but it is a little worse than it was a year before at 1.0.

My confusion is this. When I complained of pain a few years ago I was told that the aneurysm "can't hurt" and what I was feeling was just a spasm and to live with it. Well this pain is getting worse and I think it is more the valve than the aneurysm. It feels like a sharp, stabbing pain and lasts for between one and two minutes. Somedays I get 10 or 12 of these episodes, and other days I don't have any. It is worse and more often when I exercise, but sometimes they come when I am just sitting still. I get extremely out of breath now and it is starting to affect my everyday life. If I make a bed, I have to lie down on it for 10 minutes before doing anything else. I used to walk a lot, but now I am afraid to get too far from home because I fear I won't make it back. I am able to do water exercises and that seems to work the best for me. It takes me several minutes to catch my breath after climbing steps or inclines. My regular doctor told me not to do any aerobic exercise at all anymore. I am not scheduled to go back to the CC until next April, but these symptoms seem to be getting much worse. I'm not sure what I should do next. Any advise that anyone can give me would be more than welcome.

By the way, this website has been so helpful to me. I was very afraid of surgery until last week when I read a post from someone who gave the statistics about elective surgery vs. emergency surgery. He put it all into perspective and really gave me something to think about. Thank you in advance for any insights anyone can give me. Leny

 

[McCln]

You need to change cardio as soon as possoble and get a complete workup. The pain is not good for you and it is a signal of something is off. Please get a referal to another cardio and get test done. You are getting a brush off and not getting any answers. Good luck and try to stay calm in the meantime.

 

[Yaps]

I agree, I was the same way ..and didnt realise what was happening..another dr is needed..and welcome!!

 

[BIGHEARTED]

Very confused

The doctor that told me it was just a spasm and to "live with it" is no longer my cardiologist. I supposedly have the best at the Cleveland Clinic, but I think some of it is my own fault. I am very intimidated and have a hard time telling them how I feel.

 

[Yaps]

Keep pen and paper nearby...each time you have a sympton or a question pops into your mind..write it down..all of it.
Then hand it to him(dr), he will ask you questions.. guarantee

 

[Tom F.]

That just plain sounds wrong. My aneurysm was 4.9 and I had to have the surgery "within months". From what I have read a dissection of the aorta is plenty painful. That pain means something. Get another doc.

 

[Karlynn]

Leny
I'm terrible at geography, so I don't know how far away from the CC you are. If you are close - make an appointment asap with them. If it's a big event to go, get a local cardiologist and see them now.

If you are experiencing symptoms that frighten you (appear worse than usual for you these days) don't hesitate to go to the ER.

Write everything down. Your symptoms and your questions. Take the list with you when you go and give it to the doctor is you are having a hard time asserting yourself. The doctor/patient relationship is a Partnership not a Parent/Child relationship. You have every right to question, and ask for clarity and specifics. And you have every right to feel better than you do now.

 

[BIGHEARTED]

Thank you all for your help and encouragement. I am only about 25 miles from the CC and we even have a satellite office in my town. Although all my doctors are all downtown, but it is not a hardship to get there. I will call tomorrow and try to get an appointment and some answers. Until then, I will try to keep a log of symptoms and questions.

Tom, your answer kind of scared me. I was told that they didn't want to even consider surgery until my aneurysm was 5.0 or larger. I know every case if different, and my aneurysm has stayed the same for the past 5 years, so I guess that's why they want me to wait. I was told they do not like to replace the valve more than once if at all possible, and that is why they have me waiting for the surgery.

 

[Marguerite53]

I agree with everyone.

I agree with everyone.

Hi Leny. I think you need to be seen. I think you need to have someone respect your concerns. I think you need to go in with a short list and hand them to whomever you see and sit there until you get the answers you need. I'm such a space case, I ususally make a copy for me, too -- grab a pen and jot down the answers as they are given to me. Your insurance may give you the coverage to seek a second opinion. Mine does. I can get as many opinions as I want. I suggest you get another if you do not receive the respect you deserve. If you don't muster up the guts to ask, though, these doctors can't really help you. It's tough. I always feel like a child (I'm 51) and they often make me feel like an "hysterical woman". Never mind all that. If you have family who love you (and of course you do!!) you owe it to them to get answers!!!!

The .9 and 1.0 change might not be considered too significant. Those are the diameter of your aortic valve opening in cm squared. Read .9 cm2 (squared). Anything less than 1.0 is headed from moderate to severe. Some will tell you here at vr.com, that once things start to go downhill, they can go pretty fast. My cardiologist, in MY case, doesn't seem to think it will.

Those values are initially discerned with an echochardiogram. Results may vary slightly. My particular cardiologist calls in the surgeon at .75. She would consider .75cm squared severe and have me referred to a surgeon, who would then, probably schedule me out weeks or months for valve replacement. That is my understanding.

You have an aortic aneurism. I do not. That is more serious. That is the part I would want more answers about because I believe that is the thing that could cause you more of a challenge.

Keep us posted. Get on it, please. Be tough. You're important to us now!!
Let us know.

Marguerite

 

[PJmomrunner]

Leny:

I think you should call the Cleveland clinic and request an appointment. When you go, bring a copy of your initial post that started this thread. All the acceptable numbers and unmet thresholds in the world are worthless if you are having symptoms. It is not normal to have to lay down after you make the bed.

I too have an aneurysm and a bicuspid valve and the plan is to operate when the aneurysm reaches 5cm OR when the valve gets bad. I just more or less assume the aneurysm will enlarge first, but your experience reminds me that may not necessarily be the case.

Do go get checked out by the whoever you trust.

 

[Granbonny]

Leny

Leny

When one ages like me..I cannot remember what I did yesterday..but can remember things from years ago..Your post got me to thinking..before they found my aneurysm......I got several of those pain..stabbing Spasm's..Once, driving to meet family for Xmas Eve lunch...another washing my son's windows..(reaching out to windex) they, too, lasted only a minute...But, very painful...I had NO symptoms.....just a few months later..was trying to find out why I was burping so much..(Many doctors)...but PCP wanted me to have an echo..went from there..to Cardio..to Cath. to surgery for a 5.0 aneurysm...Still have the burping..but, it is from aerophagia..Swallowing too much air.....Try to control it by not getting too stressed out.....but, I thank goodness..I went to find out this minor problem.....and they found my BIG one...Had surgery 3 days later..Doing great now. Bonnie

 

[tobagotwo]

Leny,

Fault doesn't enter into it. The doctor understands, or there may be bad consequences. Your part now is to take the best advantage of your new cardiologist. Make sure s/he knows what your symptoms are. PJmomrunner makes a good ppint. Bringing it in written form may break the ice and help you get it out in the open.

I would get that aneurism measured again. They seem to do nothing for many years, then they often show a sudden change. None of this stuff is a straight line. Even for the valves themselves, which are more stable than aneurisms, "the worse it gets, the faster it gets worse."

Best wishes,

 

[BIGHEARTED]

Thank you all again for your insight and encouragement. Marguerite hit it right on the head when she said they make me feel like a hysterical woman. I have learned so much from this website and I truly appreciate all the experience and wisdom you all have. I don't feel so alone now. I will call today and try to at least get an appointment. And you are right - the doctor only knows as much as I tell him - I will remember that the next visit. I will let you know how I make out. Leny

 

[catwoman]

Keep pen and paper nearby...each time you have a sympton or a question pops into your mind..write it down..all of it.
Then hand it to him(dr), he will ask you questions.. guarantee

Leny:
Yaps has a great suggestion.
Not long ago, I told a friend about some odd symptoms I was having and, being a veterinarian, he told me I need to do for myself what I do for my cats: Jot down date, time of day, symptom, any things that might have brought on the symptom (change in diet, exercise, meds, etc.).
We tend to forget many details about symptoms or fail to see a pattern, which could be significant.

 

[BIGHEARTED]

Hello again - I just got off the phone with my cardiologist's office at CC. I told her how I was feeling and how often and she typed what I was saying while I talked. Asked me a few questions to clarify things and said she will give my message to the doctor. They will call back later today regarding getting me in to see him tomorrow. That doesn't give me much time to start a list, but I will do the best I can. Thanks again, I probably wouldn't have called if not for all of you. I will let you know how I make out. Leny

 

[Karlynn]

Best wishes Leny. Glad you are getting a response to your call.

 

[gadgetman]

Leny,

Sorry to hear you are receiving the "Doctor's Rush" on your problems. Based on comments on this site, women seem to be ignored by doctors more than men. Of course, it has been shown that women will SEE a doctor more often than men. Men (me included) will ususally put off visits until we either make the ER or get hit over the head enough by the wife or significant other. I hope they see you soon. Pain, no matter where it is at, is NOT NORMAL. Your body is trying to tell you something. It's up to the Doctor to figure out what.

One note about the pen and paper. We started years ago taking a small tape recorder to doctor visits. As a courtesy, we always ask permission to record and have never been refused yet. You can pick up inexpensive ones at Wally World or several other places. We have found it to be a Godsend when you get to the point where you "stick your head in the sand". We can go back later and see what the doctor "really said". Anyway, I can't read my own writing once it gets cold .

Good luck and hope they find out what is going on real soon.

May God Bless,

Danny

 

[BIGHEARTED]

Hi again everyone - Here it is Friday and I still have not heard back from the doctor at the CC. I originally called on Tuesday, was told he would probably want to see me the next day and they would call later with the time. I waited until 8:00 pm and never heard a word. On Wednesday a.m. I called again. Spoke to the same woman who didn't even remember talking to me the day before. Gave her the same story and again was told that either she or the doctor would call me back later in the day with his instructions. Two days later and still not a word. Talk about getting the bum's rush!!! I have not tried to call again and probably won't - at least for awhile. Both my husband and I wonder what we will do if I have a real emergency! I'm not sure what to do next.

 

[Karlynn]

I would call immediately and ask to speak to the woman's supervisor and tell her that you are not accusing her of not passing along your information, but that you have not heard back after 2 calls and that during the first call you were told you'd probably need to be seen the next day. Somebody is messing up, whether it's the person you spoke with, or the doctor, it needs to be addressed now.

If the person you spoke with says they don't have an immediate supervisor, I would ask her who you need to talk to to get your concerns addressed pronto. The squeaky wheel gets the grease.

Make sure you document your calls and the name of the person you spoke to.

 

[JohnnyV_46]

TIME FOR ANOTHER DOCTOR AGAIN!!!! I'd definitely change doctors again...Shoot, maybe you need to call an ambulance next time you have the pains for feeling. I know I'm never going to an emergency room again unless its on a gurney from an ambulance. Seems it's the only way anyone pays attention.