TEE results and still not sure whats what

[char2mar]

Hi Guys:

I went to the internist yesterday to go over my latested TEE. It basically said that my ascending aorta was 4.0 cm. and that it was significantly larger than the last messurement, but that he may have measured it closer to the root last time. That TEE was in February and it measured 3.3 cm. The last regualar echo I had done said that the aorta was at 3.8 cm. That was in March. So all in toll I have a dilated asecnding aorta. He said there was no evidence of a dissection...which is good and no evidence of stenois but I would need to have a TAE for a accurate measure of that. That kind of confused me because I was told that on two different occasions I had mild AS. That my valve has thickening and calcification. It appeared on the echo and also when I had a angiogram done. When I asked the doc for a copy of the TEE results for my record he gave me one. I was disapointed to see no measurements were taken of the LV or of the mean gradient across the aortic valve. So basically I feel that this TEE was done for nothing. He did say that I have moderate regurgitation of the aortic valve and mild regurgitation from the tricuspid and mitral valves and no abnormalities of the left atrium. My last echo said that I have moderately/severe regurgitation of the aorta. When I questioned the internist about the lack of info on this report and how it differed from the echo report he said not to worry about it. That these echo reports are not an exact science and that I shouldn't expect a black and white number.... and that because I work in the lab I am conditioned to expect the results to be totally accurate and exact. ???? Anyways...to make a long story short...he has written me off...and refered me to the Adult Congenital Heart Clinic. I see them in July. He feels that he can't do anything else more for me. So here I go again...Round 4 and I still don't have a cure or explaination on my chest and neck pain. The carotic artery ultrasound showed that I do not have any plaque build up or narrowing. So who knows why I get ripping pain up my neck at times. I guess I am just a mystery. Its a good thing that my health insurrance covers 100% of my health care because I feel like I have been going around in circles getting tests and going to doctor appointments. Wish me luck at the Congenital clinic....perhaps I will be told exactly what to expect...what my long term prognosis will be and if I need surgery at some point or another.
My biggest concern is my lack of energy and weight gain. I am so fatigued that I find it hard to be motivated to do anything. I am tired all the time. My chest hurts almost daily. I have SOB going up 1 flight of stairs or doing mild exercise. I also noticed that I get agitated quite easily. I find things to be quite overwelming at times. I chalk it up to my fatigue. Does anyone out there know what I can do to boost my energy level. I work full time in a busy medical lab and by the end of the work day all I want to do is crawl under a rock and sleep for a week. Of course I can't do that...have too many other responsiblities to deal with. Does anyone out there have a magic cure???

Char

 

[savysmommy]

Char,
Boy do I know the feeling of wanting to crawl under a rock and sleep for a week! I sometimes wish I could just press 'pause' on everything in my life and get some sleep! I have a toddler that keeps me very busy along with a full time job. I am always fatigued.. I find myself taking 3 hour naps every weekend when my daughter goes down. I only wish I had the time during the weekdays to do that!

Sorry I dont have any advice.. Just wanted to let you know your not alone!
Good luck at the congenital clinic.

Shannon

 

[char2mar]

Shannon...

I hear you....I have 3 kids to deal with and a husband that works afternoon shifts...so I feel like single mom, at least on the weekend he gives me a break and doesn't complain too loud when I nap out. I just wish they could do something now as to later to make me feel better. Being in limbo sucks.

Char

 

[ALCapshaw2]

Sorry you are getting such 'sorry' results from your Internist. Your account makes me wonder WHO performed your echo and TEE measurements?
Do you have copies of ALL your reports?
Has a CARDIOLOGIST looked at your reports?

My cardiologist PERSONALLY performed both of my TEE's which determined when I was 'ready' for surgery.

It sounds like you may have to endure more tests.
Hopefully you will get a better assessment this time.

'AL Capshaw'

 

[char2mar]

Al:

The same cardiologist performed the two TEEs. I told him that I was experiencing chest pain and a ripping pain in my neck. That I wanted a comparison TEE to see if the dilation was getting bigger or not and to rule out dissection. He said he would do his best. I also told him that there has be a change in my EKGs. 8 months ago it showed that I had a left axis deviation. Now it says I have left ventrical hypertrophy by voltage. I was disappointed that the left ventrical wasn't mentioned and the gradients were not measured. The report said that a TAE would be a better test to determine the pressure gradient. (This I do not know...The copy I got of the first TEE performed was just the unit peliminary report and not the actual typed out offical one so it didn't have any dimensions on it other than that the ascending aorta was 3.3 mm, and that the valve was bicuspid).

I just found out that the congenital heart center wanted to get a copy of the actual tape and will be veiwing it before my appointment in July. So hopefully I will get some answers then. Also that they just purchased a 3D echo machine so they can determine a whole lot of stuff that both the 2D echo and the TEE machines can't.

Thanks for your imput....and concern.

Char

 

[strawberry]

Char,

You mentioned weight gain. Could you be retaining fluid? I had "ankle" edema and when I finally got on a diuretic and lost the 10 pounds I had put on I realized I had been puffy all over. Doesn't sound like much but it is when you're 5'3" and 108 normally.

Take care.

 

[char2mar]

Char,

You mentioned weight gain. Could you be retaining fluid? I had "ankle" edema and when I finally got on a diuretic and lost the 10 pounds I had put on I realized I had been puffy all over. Doesn't sound like much but it is when you're 5'3" and 108 normally.

Take care.

Strawberry:

I do have edema, and have taken diuretics. I can lose 6 to 8 pounds a day on them. But I gain it all back over night even though I rarely eat anything with salt. My sister gave me some of hers to try....cause she also has edema. I asked the internist for some but he doesn't believe in them. But said I should ask my family doctor for some. So I guess I will have too the next time I go see her.

Char

 

[tobagotwo]

A TEE (or TOE in the UK) can be an unpleasant experience. I would never return to a doctor who didn't perform as many measurements as he could, as long as he had me in that uncomfortable predicament. He cheated you of good information you paid for in both money and discomfort. As you plainly note, he didn't even do many of the basics.

I don't know that a ripping pain in your neck sounds like it is associated with your heart or your enlarging aorta, but the other symptoms you are describing are well within the curve for valvular issues, and with other problems that can cause valvular issues.

Your doc is an underachiever. I would not consider that he has actually done a proper diagnosis. If he were my internist, I'd lose him fast. Time to start going to a doctor who specializes in just cardiology.

Best wishes,

 

[strawberry]

Char, thanks for the reply about the edema. The cardiologist scoffed at me when I went in with swollen ankles. He said to stay away from diuretics if I wasn't "obviously fluid overloaded." Let's see, My weight goes up three pounds a week for three weeks. Not only am I not eating more, I'm starting to eat next to nothing cause I can't button my pants (obviously not '"just" ankle edema), my sneakers hurt they are so tight and I can't fit in my sandals without deep grooves developing. I also feel short of breath but that's "in my mind" cause I just have mild regurg of two valves. If that's not fluid overload I don't know what is. Now I fit back into my pants and shoes and some of the doctors act like I'm an anorexic trying to fight weight gain.

I really think doctors understimate the effect of milder regurgitation. They think it's asymptomatic cause that's what their protocols say.

I'll be interested to hear how you make out.

Take care.

 

[char2mar]

Char, thanks for the reply about the edema. The cardiologist scoffed at me when I went in with swollen ankles. He said to stay away from diuretics if I wasn't "obviously fluid overloaded." Let's see, My weight goes up three pounds a week for three weeks. Not only am I not eating more, I'm starting to eat next to nothing cause I can't button my pants (obviously not '"just" ankle edema), my sneakers hurt they are so tight and I can't fit in my sandals without deep grooves developing. I also feel short of breath but that's "in my mind" cause I just have mild regurg of two valves. If that's not fluid overload I don't know what is. Now I fit back into my pants and shoes and some of the doctors act like I'm an anorexic trying to fight weight gain.

I really think doctors understimate the effect of milder regurgitation. They think it's asymptomatic cause that's what their protocols say.

I'll be interested to hear how you make out.

Strawberry:

I am hearing you. My pants are too tight, my eye lids and face are puffy. When I take the diurtecs all that goes away. I can lose 2 dress sizes in one day, but the doctor tells me to go Aitkins. Eat less carbs and more protien. Only eat a half protion....blah, blah, blah. They just don't want to listen to you. Haven't been to the family doc yet but I will push her for them because I feel so much more better on them. Without them I fell congested and angitated, fatigued and SOB.

Take Care
Char.

 

[DebbiN]

I empathize

I empathize

I have a 4.6 ascending aortic aneursym with bicuspid aortic valve. I have fatigue so badly it is hard to go to work and do all the things to take care of my family and myself. I have so many limitations I have gained weight and feel pretty lousy all the time. I try to not show it to my family or co workers. The shortness of breath is the same for me, have it when walking to the laundry room and back! I am sorry you must feel like I do.

 

[char2mar]

I have a 4.6 ascending aortic aneursym with bicuspid aortic valve. I have fatigue so badly it is hard to go to work and do all the things to take care of my family and myself. I have so many limitations I have gained weight and feel pretty lousy all the time. I try to not show it to my family or co workers. The shortness of breath is the same for me, have it when walking to the laundry room and back! I am sorry you must feel like I do.

Hi Debbie:

Sorry to hear that you too have same problems as I do....With an ascending aortic aneursym of 4.6 cm you must be pretty close to having surgery. Having learn't all I have learned from this site...surgery should be seriously looked at in your case. The good news is about that is that apparently you will feel so much better afterward. I really feel for you....and I am grateful to see that other people feel the same way as I do....now I know I am not a whimp or that it is not all in my head....Good luck with your heart issues......

Char

 

[Abbanabba]

My biggest concern is my lack of energy and weight gain. I am so fatigued that I find it hard to be motivated to do anything. I am tired all the time...... I have SOB going up 1 flight of stairs or doing mild exercise. I also noticed that I get agitated quite easily. I find things to be quite overwelming at times. I chalk it up to my fatigue. Does anyone out there know what I can do to boost my energy level. I work full time in a busy medical lab and by the end of the work day all I want to do is crawl under a rock and sleep for a week. Of course I can't do that...have too many other responsiblities to deal with. Does anyone out there have a magic cure???

Hi Char, I'm sorry to hear you're STILL dealing with all of these issues. Boy - can I relate to how you're feeling though! I had to give up work 2 years ago now because of the fatigue, so I applaud you for the struggle I know you go through each day.

I also can relate to the utter frustration of test results showing one thing and your doctors telling you it's nothing to worry about, or not bad enough to be causing your problems. When I fronted my cardio about the changes to my results she told me I was worrying about nothing. The previously unmentioned trace regurg through my tricuspid, aortic and mitral valves is apparently "normal" - according to her everyone's valves need mild regurgitation to prevent blood-cots forming, which is fine, but my point was why would you mention it unless it was MORE than "normal" regurg?

Anyway, I'm ranting again...(..sorry..).

I hope "round 4" is the round that comes up with some answers. I wish I had some for you - and myself - but I can only give you my support.

Best wishes,
Anna : )

 

[char2mar]

Hi Char, I'm sorry to hear you're STILL dealing with all of these issues. Boy - can I relate to how you're feeling though! I had to give up work 2 years ago now because of the fatigue, so I applaud you for the struggle I know you go through each day.

I also can relate to the utter frustration of test results showing one thing and your doctors telling you it's nothing to worry about, or not bad enough to be causing your problems. When I fronted my cardio about the changes to my results she told me I was worrying about nothing. The previously unmentioned trace regurg through my tricuspid, aortic and mitral valves is apparently "normal" - according to her everyone's valves need mild regurgitation to prevent blood-cots forming, which is fine, but my point was why would you mention it unless it was MORE than "normal" regurg?

Anyway, I'm ranting again...(..sorry..).

I hope "round 4" is the round that comes up with some answers. I wish I had some for you - and myself - but I can only give you my support.

Best wishes,
Anna : )

Anna:

Thanks for your concern. I'm glad you had a nice trip. I hear you on the frustration. I wish I could just quit work right about now.....perhaps the new clinic I will be going to in July will reconmend some much needed time off. Gawd this process takes such a long time. Right now I am struggling with chest pain.....but will I get it checked out.....no....cause I know that there is nothing they can do for me at this time.

Char

 

[Georgia]

Char - I second (or third/fourth) the notion that you find another internist.

My pcp didn't have a clue until I was so bad my bp was 195/135 and I was in chf.

I'm really really concerned about the amount of edema you have. You just shouldn't be able to lose 6 - 8 # in a day by taking a diuretic unless something cardiac is causing it. Dump the guy and get someone who wants to help. And get a copy of all your records to travel with.

Good luck.

 

[char2mar]

Char - I second (or third/fourth) the notion that you find another internist.

My pcp didn't have a clue until I was so bad my bp was 195/135 and I was in chf.

I'm really really concerned about the amount of edema you have. You just shouldn't be able to lose 6 - 8 # in a day by taking a diuretic unless something cardiac is causing it. Dump the guy and get someone who wants to help. And get a copy of all your records to travel with.

Good luck.

Actually he dumped me and refered me to the Adult Congestive Heart Defect Clinic. He said that he couldn't do anything else for me. SO I guess I have to be put through the works yet again. Seems Calgary is not the place to be when you have BAVD. Our health care system is good in that it is affordable for everyone but its bad in that it takes so long to get in to see a specialist. Even longer if you have to be refered to a different province or country for treatment. We do not have a 2 tiered Health Care system. I can't just email or call a cardiologist or a Heart Center for a consultation, I have to be refered. In fact as much as I would like to beable to solicit a surgeon for a consultation I can't...I need a cardiologist or a internist to refer me. At this point I know exactly what ails me but have yet to meet a Doctor that wants to treat me for it. Instead all they want to do is put me on antidepressants and wait for some crisis to happen. For some reason they can't believe that a person with BAVD gets fatigue and chest pain. I should be asymtomatic because I do not have CAD, arthritis or lupus. As for the arrhythmia, well I should be able to live with that too....no big deal. Now see you got me going on wallowing in self pity. Tomorrow I go see the other internist to see what he has to say. Wish me luck.

Char