Annual Cardiology Check up ...

[bit of a chicken]

Hello all... I have not been on here for a while , have been busy with other matters in my life .I had cardiac surgery as a child and use this site based on my need , which in honesty is selfish but the truth !! I dip in and out from time to time and am very glad to be aware of every one's existence here, know you are here and that I can drop in as I when ..!

So, hello to all the regulars and hope everyone is enjoying chocolate !! Also hoping some of u may be able to shed some light on my number information below !!, I would be grateful.
I recently attended my annual cardio outpatients appointment with cardiologist and adult congenital cardiac specialist . All is very positive... Had coarctation repair in infancy , which a recent cardiac mri has shown to be excellent , thirty years later .. feel very lucky and no evidence of aneurysm on the circle of willis. All good , I left the appointment happy to put the whole matter out of my mind for another year. I have received a cc copy of a letter they have forwarded to my GP. Now feeling a little frustrated as there is information contained in letter that was not mentioned when I was sat in front of them , meaning I shall not see them for X amount of time , and it leaves a niggle of non comprehension ...
At the appointment there was not a mention of numbers , but in this letter to my G P they refer to my bicuspid valve ( that I am fully aware of ) and "mild aortic root dilation , ( what is that ?! ) but this is less than 3 cm and the valve is opening well. The peak doppler velocity across left ventricular outflow was just under 3 m/s but there were two components suggesting there are two levels of minor obsrtuction. " I realise that none of this can be at all serious , as I do not need to see them for a while but what does it actually mean ?!

I will not see the cardiologists for a whilenow, I realise that none of us here are medical professionals. I also realise that surgery is not immenient for me but I would like to understand the above ? I wish the numbers and content above had been discussed with me and explained as I find this frustrating ? This heart is in my chest , after all, I feel it must be a patient's natural reaction to fully understand all of it and have ownership of that understanding? I am having a rant !! I fully support preventative care , exercise regularly . .. do not eat too many custard creams , maintain dental hygiene and follow advice/ recommendation .Despite coming on this site I am embarrassed to confess the numbers mean nothing to me, I just do not understand it ?

Well, ... anyone able to help , that would be nice .I think it is also wonderful to have our NHS system in England we are very very lucky ,on reading some of this here, I see how lucky we are with regard to insurance worries etc and all the politics however , I will say I do not like feeling a bit patronised , and I do feel a bit patronised ! It is my heart and surely the letter is great follow up but some explanation of content whilst sat before them even better ... !

 

[Superbob]

As one who had "catastrophic" dilation, at 5.5 cm, I would venture that your "mild" at 3 is something to watch over the years but not a huge concern right now -- just my non-expert opinion.

I am glad you are happy with the public health service in the UK, and I don't wish to make a political point. But I am just wondering: Under your system, it is not possible to just call up and request an explanation of the numbers you just got? I am happy currently (though who knows in the future?) to be able to go over and talk with my doctor at length at any time if I have questions or concerns.

Wishing you all the best. I am sure people better informed than I will come along here with good answers to your questions.

 

[Ross]

Basically, you have an aneurysm that needs to be watched.

 

[bit of a chicken]

Hey ??!! Ross... u trying to trash my easter !!!! That cannot be right , they certainly have not said that ? That is what makes me so cross about information exchanged to my GP and not explained to me ...It comes back to this heart being in my chest , and I fully expect to undertstand every aspect of it, not becuase I want to be a hypochondriac and worry over it , but because not fully understanding , for me, causes more frustration and concern , I can't be unusual in that... If it is an aneursysm , presumably that may stay at that figure and not be a problem ? What is the implication of it then ... it just needs watching ? I find all this a bit confusing ... Thanks for the replies... ! As for contacting them , Superbob, that might be an idea , last time I sent a letter but it got lost in the system and it was a year before I had a reply . I never feel justified in bothering them as clearly do not need intervention at the moment , so I just do not want to keep on , as mentioned here though, I just want to be totally clear on it all . Right now it does not feel too clear , so perhaps I will make that call. ..

 

[Lynlw]

Hey ??!! Ross... u trying to trash my easter !!!! That cannot be right , they certainly have not said that ? That is what makes me so cross about information exchanged to my GP and not explained to me ...It comes back to this heart being in my chest , and I fully expect to undertstand every aspect of it, not becuase I want to be a hypochondriac and worry over it , but because not fully understanding , for me, causes more frustration and concern , I can't be unusual in that... If it is an aneursysm , presumably that may stay at that figure and not be a problem ? What is the implication of it then ... it just needs watching ? I find all this a bit confusing ... Thanks for the replies... ! As for contacting them , Superbob, that might be an idea , last time I sent a letter but it got lost in the system and it was a year before I had a reply . I never feel justified in bothering them as clearly do not need intervention at the moment , so I just do not want to keep on , as mentioned here though, I just want to be totally clear on it all . Right now it does not feel too clear , so perhaps I will make that call. ..

I know how frustrated you must be since I want to know everything about Justin's heart. I am curious, did the cardiologist send you a copy of the letter he was sending your GP or did you GP give it to you?
My thought is, I know many people (both patients or parents of the child patient) who don't want the exact numbers, just a more general discussion like it seems like you had with your doctors at the appt. I'm not blaming you, but have you told your doctors that you do want to know all the numbers? Maybe they thought you were fine with how genral the info was if you didn't ask what the numbers were, but IF they CC'd you on the letter, you would have the numbers for your personal records. Maybe it is just a matter of making sure the doctors know you want to understand in great detail everything about YOUR heart. I also think maybe since everything is "mild" or "minor" that might be why they didn't go into much more detail during the appt. Justin's case is different since he has alot of surgeries and a couple parts of his heart have problems, but I know during the appt we mainly discuss the numbers if it is severe or moderate and anything that is "mild" is just mentioned in passing, or if there is a change over the last year. IF something is considerred mild, but has changed since the last test then we might talk about those numbers, and the fact this is something to keep an eye on.if I am explaining that right.
Also I don't know what your measurements were for your last check up, but if they were close to this years, and everything is pretty stable, often they don't give you the numbers but more along the lines of, everything looks good no real changes see you in a year. and only bring up numbers if there is a change especially if things are considered mild.and just put the numbers in the report/letter. Since you don't have an appt for another year, I would either call or write to your doctor and let them know you have a couple questions since reading he letter and how it is important to you to know the numbers during your appt, so you can ask questions and understand in detail.
BTW did the letter give the exact number for your aortic root r just say under 3? do you have the measurements for the rest of your aorta?
If it makes you feel any better, "technically" I don't believe an aortic root measurement under 3 is considerred an anuerysm. Most things I read use 4 as the lowest diameter to be considerred an anuerysm

 

[Bina]

Maybe go on Google Images and find some pics of a dilated root.....yours is less than 3cm so I really wouldn't be overly
concerned right now as long as your HR and BP are decent. My pre surgery cath found that my root was dilated and the valve was totally trashed, so I had no choice but to get into surgery.
Eat more chocolate !

 

[bit of a chicken]

Thank you Lynlw and Bina ... Lyn , to answer your question , I have received a cc copy of a letter they have forwarded to my GP . I was not expecting a letter . I had dismissed the whole appointment/ consult as entirely positive. I still think it is ... The difficulty is , having been a cardiac patient since a baby , my parents had first been given the entire low down . Now , as an adult and having independantly taken on my cardio appointments from the age of fourteen , I have really only in the last ten years really understood it, both the coarctation , how it was repaired , the connective tissue aspect and the bicuspid valve and the coarctation resection . This is down to the cardio I currently have who actually did take the time to ask what my understanding of it is , I explained that I had attended out patients where they explain importance of healthy eating , regular exercise and dental hygiene but at no point does the doctor generally explain your case , quite simply because u have been going along year in , year out. I now understand more than my parents ever did, or I had before , if that makes sense ! Anyway , the point is , my irritation is down to a slight lack of communication from me to my cardiologist probably and I will address this via a phone call/letter. They did not mention numbers and I did not think to ask .. They reassured me there is no anersym at the circle of willis and given that I had only recently comprehended this aspect that was my key concern . I will follow this up with a letter to my regular cardio , who is generally very helpful and I am confident he will explain the numbers and tell me what the aortic root dilation is , as they did not mention it and I am not sure I much like the sound of it , mild/minor or not ! No other numbers had been discussed with me at all ? I just find it annoying that for ten minutes I am there and none of this comes up , I leave , feeling positive and then receive this and wonder at its meaning . Every time I go along , in the last four years I seem to fully understand more , which for me , I like , and want to be fully aware of all of it , just wish they would explain it to me whilst I am sat there , instead a light bulb moment hitting me care of a letter !!... Lyn , yes I have previously conveyed my interest to fully understand it , at one point the adult cardio congenitenal heart specialist did tell me not to worry over it as that is their job , it was only when I was out in the corridor it occured to me it might be his job , but it is my body !! and that I think is why I feel a bit annoyed !! Bina ... I am off to eat lots of chocolate and finish my large easter egg , even though I know , thanks to cardios that cholesterol is to be avoided and weight gain in heart patients is not advised !!! Ha ... Thank you and happy easter ... !

 

[Ross]

I'm not trying to ruin anything. Dilation is enlargement of the aorta and enlargement of the aorta is an aneurysm. Beleive me, I don't like it either! I sit here with a 3.6er in my abdomin.

Thoracic Aortic Aneurysms
The permanent enlargement of some portion of a blood vessel is often described as bulging, ballooning or dilated. The diameter of the enlargement will determine whether or not it is considered an aneurysm. Traditionally for the aorta, any permanently dilated section measuring 4.0 cm or greater in diameter has been called an aneurysm.

The definition of an aneurysm may also be based on comparison with the normal blood vessel size for an individual. When the permanent enlargement of some part of a blood vessel is at least 1.5 times greater than normal size, it may be termed an aneurysm. Applying this to the aorta, if an individual's normal aorta is 2.5 cm, then dilation of 3.75 cm or greater represents an aneurysm in that person. A variation of this defines an aneurysm when the enlarged aorta is at least twice its normal size.

Whether the aorta is called "dilated" or the word "aneurysm" is used, any enlargement of the aorta, regardless of its size, is an indication of aortic disease and requires treatment. Aortic enlargement, although perhaps not yet qualified for the term aneurysm, should be monitored, treated medically, and the lifestyle and diet of the patient addressed.

Identifying dilation of the aorta implies the ability to determine the aorta's normal size for an individual. It is understood that the aorta's size will vary across any given population based on age, gender and body size. Broad ranges of aortic diameters sometimes listed as the normal size of the aorta necessarily span a large variation of body sizes in the population and may be misleading regarding a given individual. It is important that every effort is made to determine the normal aortic diameter for each individual in order to detect the early stages of aortic expansion due to underlying aortic disease. Generally, in the majority of patients that part of the aorta that is not enlarged may be used as an indicator of what is normal for that individual.

http://www.csmc.edu/Patients/Programs-and-Services/Heart-Institute/Aortic-Disease.aspx

 

[Lynlw]

I'm not trying to ruin anything. Dilation is enlargement of the aorta and enlargement of the aorta is an aneurysm. Beleive me, I don't like it either! I sit here with a 3.6er in my abdomin.




http://www.csmc.edu/Patients/Programs-and-Services/Heart-Institute/Aortic-Disease.aspx

I agree it has to be followed, and kept an eye on, but but most "normals" I see say the root is usually between 2-3 actually it is hard to find "normals" but most I see say 2.0-3.7 is normal for the Aortic root, depending on the person and what the measurements are for the rest of the aorta.
Since it was call mild and less than 3, with out knowing the exact number or what the measurements were for the rest the aorta are, chances are technically even by this defination he wouldn't be considerred to have an anuerysm.
"The definition of an aneurysm may also be based on comparison with the normal blood vessel size for an individual. When the permanent enlargement of some part of a blood vessel is at least 1.5 times greater than normal size, it may be termed an aneurysm. Applying this to the aorta, if an individual's normal aorta is 2.5 cm, then dilation of 3.75 cm or greater represents an aneurysm in that person. A variation of this defines an aneurysm when the enlarged aorta is at least twice its normal size."

I'm not saying it isn't something to keep an eye on, and it could become an issue, but I wouldn't stress as much since it is still called a mild dialation and less than 3 than if it was considerred an anuerism. I would want to know the exact numbers and know how they compared to previous test.

http://www.medhelp.org/posts/Heart-Disease/Slightly-Enlarged-Aortic-Root/show/250138 discusion with the normals ccf

 

[bit of a chicken]

Thanks Ross and Lyn ... I have now sent a letter and hope it will not be an age before I get a reply ! I am sure my cardiologist will give me the answers I want . I do not like the sound of the aortic dilation , but I suppose the MRI S that they send me for make sense and is reassurance that they are monitoring it . I will let you know what he says ??!! In the meantime ... I am eating more chocolate ! Lyn , I am female !! ... just thought I would say .. thanks again for all the replies , this has shown me that next time I go I will try and be a bit more proactive on quizzing them on the numbers and any changes . Always a good thing to understand more ... It reinforces motivation to remain fit active and maintain a healthy lifestyle which can only be a positive thing to do. The aortic disease bit , well, I am five feet tall, weigh about six stone ten and exercise regularly so I can't do much more than that.. I think as Ross states, there are some things we might not like , but u just cannot change ... only maintain as healthy a lifestyle as possible ...

 

[Ross]

... only maintain as healthy a lifestyle as possible ...

Yeah, plenty of booze, cigarettes, swinging chandelier sex everything that's bad for you.

 

[bit of a chicken]

Oh yeah ? Nice to know what get up to over there ?! The first two , well , no that probably not good for you , but last is at least exercise ?! Isn't that what the cardios are always suggesting !

 

[Ross]

Yes it is and instructor Bina suggested it to start with in another thread!