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Kari72

Hi Evryone,

I have been observing from the sidelines of this forum for the last few days, and I have finally decided to take the plunge and find out if any of you may have some answers to some of the many questions I have floating around in my head. I found out last week that I have an enlarged ascending aorta. It measures 3.1mm as of now. My doctors office called me and said that once it reaches 4mm they would be sending me to a surgeon. I was pretty much in shock, so I did not think to ask some of the really important questions that I should have, and I do not see my cardio until April.
I was wondring if anyone knows how long it usually takes for someone to get to 4mm? I was told I would have CT scans every 2 years to watch it, but what if it enlarges faster? Also, I have bad chest and back pain already, is there medication that I should be on now, and how do I know if something is wrong if I already am having this type of pain? And one more question(sorry)
Should my doctor have not told me all this in person, or at least given me an appointment sooner so I could have had some of these questions answered?
I have seen OHS when my brother had it last year, and it scared me then and it scares me even more now! I live in the Gainesville, Fl. area and I hear there are some really good cardiologists here, so I guess I should feel lucky, but all I can think about are the unaswered questions I have and the fact that I have a husband and 2 young children that I need to stick around for. I know all this worry can't be helping. Thanks for taking time to read this, I hope you all can help!
 
Welcome to the VR community. Sorry for the circumstances but glad you found us.

Sorry, I can't provide an answer with respect to the aorta, as I had a mitral valve repair. All, I can do convey my OHS experience.

I've been having an annual GP check-up since I turned 40 at the insistence of my wife. During my routine check-up the year I was turning 50, my doc noticed a significant heart murmur from reguritation that wasn't there before. It was monitored and it went from modest to severe rather quickly, including the starting of heart chamber enlargement. At age 52 I had OHS to repair the problem. That's how quickly I went from no apparent heart problems to having OHS. I don't want to worry you more, but what I can tell you from my experience is that OHS was not nearly as bad as I feared. Now I'm recovered and having just as active life as I did before. I don't know your specific situation, but best wishes and good luck.
 
Thank you

Thank you

Thanks Wayne!
Right now any information is helpful. The only person I know of to have OHS was my brother but he had an annomolis origin of the right coronary artery. He found out on a Tuesday and was in surgery Thurday, so it was not something they wanted to wait and watch. I am finding out that waiting is the worst!! Thanks you for sharing your situation with me, I am really glad I found this site. Kari
 
Kari72,
Welcome to the family of vr.com.
I am unable to help you, I had a mitral valve replacement.

The weekend can be slow sometimes for answers, but someone should come along shortly to help you out.

Meanwhile, try to relax, breath and ask them same questions here as you will ask your doctor.
Take Care
 
Hi Kari -

Welcome to the site; there is a great deal of helpful information to be found here. Did the doctor say WHY your aorta is enlarged? Nearly all of the members here who have had enlarged aortas also have congenital defects in their aortic valve--I think. If you also have a congenital defect in your aortic valve, like a bicuspid or a unicuspid or a quadcuspid valve (the aortic valve is supposed to have three leaflets or "cusps"), then your plot has thickened.

So, no matter what, one of the things that you will probably want to do from this point on is to get a copy of every cardiac test you have, such as an echocardiogram (echo) and keep a copy of that test, or rather the readings from the test, in a personal file. Someday you may need them. Until that point, you will also be able to personally track the possible digression of your heart issue(s).

Now, if you have a congenital defect in your aortic valve, you will probably be relieved to learn that there are degrees of the abnormalities and some--maybe many--people never need their valves surgically addressed. They still may need them monitored, however. Also, with a congenital defect, there may be some other specific things that you may want to be aware of. One is, that it is important to quickly address any infections, because they can settle in a defective area of the heart and cause damage. Another is, that it is very important for you to keep your teeth and gums in a healthy state. Another is, that high blood pressure, particularly with an aneurysm, is not a good thing. You also may be warned against lifting heavy things. Some of us must take antibiotics before dental cleanings and certain OB/GYN tests.

So, there's a start for you. There is much more to learn, all in due time maybe. Click around the site and search questions and ask questions and read this and that. It sometimes takes several readings to "get" things and that's pretty normal, particularly for someone who is new to all of this.

I hope this post was helpful to you. Take care and post again.
 
Kari,

I am no medical expert, but from what you say it sounds like to me you are in an early stage and they will want to monitor further enlargement periodically with echocardiograms. I had the ascending aortic aneurysym and my danger point was 5,0. It was 5.3 when the surgeon went in to do the root and valve replacement.

There are people more expert than I about all these mysteries who will be along soon enough to reply.

I was monitored for many years before my time for surgery came. Try not to stress too much. The good news is your doctors are checking it out and will stay on top of it. The surgery has a very high rate of success. I am living a very active life and am grateful for all that was done. Things will work out well for you....Stay strong.
 
Thanks for all your replies. I am not quit sure why my doctor is watching it when I am only at 3.1mm. The only thing I can think of is the RN who came along for the CT scan, made mention that the CT Tech's could not believe how small I was. I thought they were referring to my build, but now I think my nurse was hinting to me that there might be a problem.
I called my primary care doctor and I will be seeing her tomorrow. I am taking the results of my CT with me so maybe she can tell me a little more as to why I am already on my cardios "need to watch list." Thank you all for stopping to take the time to try and answer my questions. Kari
 
You mention your build as small and that your doc wants to get things fixed when you reach 4.

That is good...the magic number is 5 normally but it should be reduced for smaller people and perhaps increased a little for larger people...i'm large and only found mine when it was 5.6 i think...then it was a rush to get it fixed.

Normally it is to be expected that a 1mm per year growth will happen but it depends on a lot of things such as blood pressure, weight etc etc...it could stay still for years then jump 3mm in a year.

I'd get checked yearly minimum regardless...a lot can happen in two years.

It's strange, as mentioned, to have the enlarged aorta without the associated bicuspid valve but hey...consider yourself lucky.....surgery to just replace the aorta with a dacron tube will be ok and you should get a full recovery with only the scar to show for it.

Ask for a 'cosmetic' closure or ask around that area for things to reduce your scar and without the ticking of a valve you will eventually feel like nothing was ever done.

Good luck.
 
Kari72 said:
Thanks for all your replies. I am not quit sure why my doctor is watching it when I am only at 3.1mm. The only thing I can think of is the RN who came along for the CT scan, made mention that the CT Tech's could not believe how small I was. I thought they were referring to my build, but now I think my nurse was hinting to me that there might be a problem.
I called my primary care doctor and I will be seeing her tomorrow. I am taking the results of my CT with me so maybe she can tell me a little more as to why I am already on my cardios "need to watch list." Thank you all for stopping to take the time to try and answer my questions. Kari
Click to expand...
Aneurysms have a mind of there own. I am a dissection survivor that in all honesty, shouldn't be alive to be typing this. Any bulging area of the aorta needs to be watched carefully. Mine went from 4.0 to 4.7 in literally no time and never did make it to the golden 5 number before blowing. I now have a 3.6 Abdominal Aorta Aneurysm which we are watching yearly. Yes, it's a baby, but after my last experience, all I want is it taken care of so I don't need to worry about it anymore.

Should yours show signs of growing, they'll go to yearly, then every 6 months in keeping tabs on it. Your pains shouldn't be at all from the aneurysm. It's just too small. You cannot mistake a dissection. I've never had pain like that in my life and God knows, I never ever want to have it again.
 
I don't think that there are any valve problems. I don't even have a history of high blood pressure. I noticed on my CT report that the cardio wanted me checked for Marfans syndrome? I am tall (5'9) but only weigh 105lbs. I assume he thought that I may have this disorder, but until I see him in April, I won't know for sure. All i know is that my symptoms started completely out of no-where(and it was just shortness of breathe to start) but in the last few weeks things have gotten worse for no apparent reason. I am trying to keep my stress level under control, but I have always been extremely high-strung so I am finding this is not easy to do. The only other things I noticed from my CT results was that I have mild emphysema and a defect in my chestwall which I was made aware of only a few years ago by a plastic surgeon. But without having high blood pressure, I can't imagine what is causing this. I don't even have the slightest bit of any blockages which is really nice to know!
 
Marfans is possible, but without testing, you'll never know for sure. You seem to fit the profile now, but as you get older, that may not be true.
 
Ross,
You mentioned that you had a dissection? How did you know that things were bad enough to get to a hospital, was it increased pain or something worse? My fear is while taking the watch and wait attitude something like this will happen, and of coarse it will happen while I am out with my husband 2 miles offshore in his fishing boat!! It makes me almost scared to stay too far away from any major medical centers!lol
 
Kari72 said:
Ross,
You mentioned that you had a dissection? How did you know that things were bad enough to get to a hospital, was it increased pain or something worse? My fear is while taking the watch and wait attitude something like this will happen, and of coarse it will happen while I am out with my husband 2 miles offshore in his fishing boat!! It makes me almost scared to stay too far away from any major medical centers!lol
Click to expand...
I awoke with what I thought to be indigestion. At first, it was just a dull pain sensation that kept me awake, then suddenly it went to pain like having a heart attack. I bounced all around the room trying to find a way to get comfortable while wanting nothing more then to be able to get my hands on whatever was causing the pain and rip it out. Next thing I remember is a paramedic slapping my face telling me to stay awake which was futile. Then awakening in the Cleveland Clinic 1 1/2 months later.
 
Oaktree said:
The significance of 3.1 has to do with how large your ascending aorta should normally be. That is something you can ask your cardio. If it should only be about 2cm, then 3.1 is already 1.5 times normal, which some surgeons consider to be an aneurysm.

Regarding pain as a symptom of an aneurysm, I have to respectfully disagree somewhat with Ross. Yes, I'm sure the pain of a dissection is, as he says, unmistakable. However, it is possible to have milder, intermittent pains from the stretching of an aneurysm. I had that, with no coronary artery disease, and the pain (that particular pain, anyway) was gone as soon as I woke up from surgery. Whether the chest pains you are having could be from your aorta depends, I would think, on how enlarged your aorta is compared to normal and also on whether the enlarged part of your aorta is in an active growth spurt. No one can determine for you over the internet whether the pains are from your aorta, from anxiety, or from something else entirely.

About the bicuspid valve, I don't know what tests you have had to rule that out, but echocardiograms miss a lot of them.
Click to expand...
If hers were larger, I might agree and you still might be right, but this is a baby as far it goes and shouldn't be causing any pain just yet. Shouldn't doesn't mean that it can't.

I don't mean to cause alarm either, but it's obviously got your attention and it should. It's nothing to play around with and your wise to question things NOW.
 
I agree that if it does turn out to be something such as Marfans, I will definatly want a specialist.
Ross, I can't even imagine having the type pain you are describing and I hope it never gets to that point.
I do know that my decending aorta measures 1.8 right now and was told that they like the ascending and descending to be appox. the same size. I really had no idea that the valves may have been affected so once again I read over my CT and it states that there is a normal 3 cusped aortic and pulmonic valve, and that the mitral and tricuspid valves are normal. Then it says there are no valve calcification??? (Can you see why I am cofused!)
Oaktree, I don't really know if I could be any more worried than I already am, so I really do appreciate any information I can gain speaking with you all.They say knowlege is power so I hope to be very powerful before I meet with my cardio again. Thank you all for this information, it really does help.
 
Thanks Oaktree, the information you gave helps alot. I am going to see if I can get in to see my cardio sooner. They say the squeeky wheel gets the grease, so I think I am going to start making alot of noise!! Again, thanks for taking the time to post, it helps to know that others have been right where I am now. Kari
 
Hi Kari

This Is A Great Site For Information And Also For Sharing So Many Feelings. I Was Diagnosed With A 4.7 Ascending Aortic Aneurysm After My Pcp Sent Me For A Ct Scan Because He Kept Hearing Regular Pvc's At Each Visit. After Seeing The Aneurysm, He Sent Me To A Cardio Who Sent Me To A Surgeon. In Spite Of All The Things They All Told Me, I Just Couldn't Bring Myself To Have Surgery, Even Though The Surgeon Said I Needed It Immediately.

At That Point, My Cardio Had Me Have A Ct Scan Every 6 Months To Check On The Aneursym. After It Appeared To Stay The Same We
Went To Every 9 Months To One Year. This Lasted For 5 Years.b]

Even Though My Cardio Kept Warning Me I Was A Walking Time Bomb, I Still Refused Surgery. Slowly After 4 1/2 Years I Became Progressively Short Of Breath And Extremely Tired. One Day A Came Home From Work Barely Making It In The Door. That Was It, I Couldn't Live Like That Anymore And Called The Cardio Who Saw Me Right Away.

My Aortic Valve Was So Stenosed, I Was Hardly Getting Circulation, And My Heart Was Enlarged From The Blood Backing Up.

Needless To Say, I Had Surgery Within The Next Week. I Had A 3 Leaf Aortic Valve That Was Just Badly Stenosed Which Has Caused Further Stretching Of The Aneursym.

Everyone Is Different, Usually The Docs Say When It Reaches 5cm It Is Time For Surgery, But If Symptoms Come Earlier You May Have To Have Surgery. Just Make Sure You Have A Doc Who Will Listen To Your Concerns And Answer All Your Questions.

Best Wishes To You

Evelyn
 
Wow, you were very brave to wait. I actually thought about not going to see a sugeon when the time comes, but then I started feeling guilty because of my children.I have only seen one person(my brother) whose OHS looked like he was so close to death I remember telling my mom that if I ever needed the same surgery, they might as well dig a hole to put me in because I would never be able to go through anything like that. But my brother says he does not remeber much and he is back to life as normal flying commercial airliners. I am a few years younger than he is (I am 36) but I still can't wrap my mind around the fact that I have a heart problem at my age!
But, l am beginning to see that everyone on this site is INCREDIBLY brave to have faced this and are still willing to help others like me.
 
To those of you who have been through OHS, did you need someone with you 24/7 when you came home from the hospital or were you able to get around on your own? This is one of the questions I have been wondering about. My husband works 12 hour shifts so if I am going to need someone here that would be nice to know ahead of time. Thanks, Kari
 
My husband had 5 weeks vacation for when I came home from the hospital. I was one of those very freaked out types and could not stay alone..... Most people appreciate some help for the first couple of weeks until they get settled into a routine and catch up on sleep.
 
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