Ascending Thoracic Aorta Aneurysm, Part 1 of 2 - CLOSED

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dyky71
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Date Joined Apr 2007
Total Posts : 4
   Posted 1/21/2008 6:28 PM (GMT -7)   
Is there anyone out there living with an ascending thoracic aorta aneurysm?
I just found out I have one that is 4.5 cm. They say surgery will be done if it reaches 5cm.
I have been reading about these and I am in a panic..
If you have one of these aneurysms  please tell me how you deal with this. It sounds like a time bomb waiting to go off.
I have been told I need to have a CAT scan once a year to keep an eye on it .Is this often enough?
I have SVT and was in the hospital overnight with some pains that seemed heart related. I overheard the nurse relaying to the Dr. over the phone outside my door the size of the aneurysm and that there was no change from 2005! I asked her when she came in my room if I had an anuerysm and she said no.
My Dr. wanted me to see my Cardiologist because there were slight changes in my ekg so we had to get my medical records to take with me. 
I then read about the aneurysm in my medical records and asked the cardiologists if I had an aneurysm and was told yes that is what this record is telling us.They said it need to be checked once a year. This had been known since 2005 and no one told me. I had no idea. Not one word was ever said about it. Why in the world would they not tell me that I have an aneurysm? I am so angry about this.
If there is anyone out there living with one of these please respond. How do you keep from worrying about it all the time? 
 
 

Post Edited By Moderator (stkitt) : 6/16/2010 7:44:08 AM (GMT-6)


Jjc2007
Regular Member


Date Joined Apr 2007
Total Posts : 194
   Posted 2/1/2008 7:47 PM (GMT -7)   
I had an aortic aneurysm in the root (which is where the heart and aorta meet). It was 4.5 cm. I lived with it for several years. I finally had it repaired with open heart surgery in 2005 and am doing well.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm


ebjlady
New Member


Date Joined Jun 2008
Total Posts : 4
   Posted 6/5/2008 11:10 AM (GMT -7)   

Just found out in the last two weeks that I have an ascending thoracic aneurysm. Mine is 4.7 cm and now it is a wait and see situation.  I will go back in three months to see my cardiologist and another c-scan is scheduled for November. I had open heart 22 years ago to replace the aortic valve with a St. Jude mechanical valve which is now showing signs of wear. This will be replaced when the surgery is done. I am 60 years old and this has really upset my world. I think about it all the time... it is hard not to think about it.

Please let me know how you are doing.

 

 


HFEIII
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Date Joined Jun 2008
Total Posts : 5
   Posted 6/16/2008 8:21 PM (GMT -7)   
Funny.  I read the first post in here about month or so ago. Finally signed up.  And now there is another post.  Well, you guys are amatuers.  LOL! Well, what I mean is my ascending thoracic aorta aneurysm 5.3 cm per the CT SCAN.  I go for my first consult with the heart surgeon this Thursday - 6/19.  He is the top dog at Yale Hospital - Chief of Cardiac Surgery to be exact.  He even has a specialty in the field - ascending thoracic aorta aneurysm - go figure!!  I guess I'll be in good hands.  Initially I was having my deviated septum fixed (a Hollywood nose job if you will) and a toncelectomy to help improve my breathing.  I have mild sleep apnia and I snore like a jack hammer ( my wife was fed up!  LOL).  My EKG also showed a change - it's not suppose to.  One of the up bleeps now showed it to be a down bleep.  A echo was scheduled and they measured the asc. aorta to be 5.4 cm.  The CT Scan (which I think is way more acurate) showed it to be 5.3 cm.  I am in no pain.  I wouldn't even know about this if it wasn't for my wife complaining about my snoring!  Since finding out I've done a little research.  i think I'll be doing a lot more after Thursday.  As faras I can tell, if the reports I was reading online were not too old, once you hit 5-5.5 cm, surgery is recommended.  There are two types.  Don't ask me the names - I have memorized them yet.  But the minor of the two, they go in through the arteries in the groin and run a mesh like tubing (looks kind of like the inside or a garden hose) up to the aneurysm.  It helps releave the pressure on the aneurysm.  I think this is more an older person's surgery.  It is a lot less risk and everything I've read has attached something along the phrase of "depending on the condition of the patient"  The other isd more or less open heart surgery and the remove the whole part of the aorta and replace it with a rubber-type material.  I think this would be a younger guys surgery because it would be a more permanent fix.  Unfortunately, I think I will be having the open heart surgery.  I am relatively healthy.  Oh...and I'm only 34!!!!  I try not to let things bother me until I have to.  Right now I'm just living my life normally.  I do try and stay calm, which is hard to do with a 4 year old.  I do notice when I get really aggravated I start to feel really bad.  I think it has to do with my BP rising.  But, besides that, life goes on as normal.  Well, at least until Thursday.  We shall see.

dochow
New Member


Date Joined Jun 2008
Total Posts : 16
   Posted 6/19/2008 11:34 AM (GMT -7)   
The 'average' doctor doesn't 'see' aneurysms. Often they are found accidentally on a back xray, CT scan or MRI & only written on the report going to your doctor. It can be missed. They do ask you certain questions & check your neck & check for 'hints' of problems. An aneurysm is SILENT [aneurysm = a 'swelling' or 'bubble' on a vessel, much like when a tire is going to blowout].

5cm. is the generally accepted size to do an intervention & save that 'bubble' from bursting (& killing you). Patients are sent to see a Vascular Surgeon, where they will be re-checked & evaluated regarding 'regular' repair or stent placement. Stents are quick, overnite 'fixes' that can work very well (but have been known to 'move' later) & require frequent checkups thereafter to be certain they are in position. open-repair, 'regular' surgery requires about 5 days recovery & does leave a harmless scar. Aneurysms can occur at ANY AGE: even golfers & football players die from them sometimes.

I watched my 4cm Abdominal Aneurysm grow over 9mos. to 4.8cm & because my Dad died from a burst aneurysm (remember, I said they're silent), I opted for regular surgery (I'm a retired physician). It's now 4 years after, I'm 81 & doing fine, thank you.

You've had a stent(s). Do what you are told; don't fool with your body. Ruin it, and where will you live?

HFEIII
New Member


Date Joined Jun 2008
Total Posts : 5
   Posted 6/20/2008 8:29 PM (GMT -7)   
Saw my doctor.  Aug 12th, 2008 - open heart surgery.  Removing aorta aneurysm and possibly valve if damaged.  Currently they hear a murmur, but it might be being caused by the aneurysm.  Doc said I am in the "yellow" range (green - ok, yellow - cautious, red - danger).  He said that if I didn't find out about this, it probably would have become dissected within 1-3 years.  Probably would have died before I got to the hospital.  It more than likely would have been misdiagnosed as a heart attack.  And all this started because my wife was sick and tired of me snoring!  God Bless for small things!!  Good luck to all you out there who have or are worrying with one of these fun little aneurysms.  I will write again after the surgery.

dochow
New Member


Date Joined Jun 2008
Total Posts : 16
   Posted 6/21/2008 9:18 AM (GMT -7)   
Your doc is good. open heart surgery is way more dependable at this time than a stent; and too many docs get 'greedy' & put in more than one. Once recovered, there's no restrictions & you can live a normal life. To do that, you should pay close attention to what & how you eat: you don't want your heart to become a problem, either. Best of luck & may you "Live long & prosper"! :)

jj73
New Member


Date Joined Jul 2008
Total Posts : 1
   Posted 7/3/2008 4:36 PM (GMT -7)   

Hi there

I'm not sure if anyone is still reading this thread but it was good to stumble across it.  I was recently diagnosed as having an aneurysm.  The most recent diagnoses was " sinus aneurysm of the aortic root going through to the septum with fistula to the right ventricle" ... bit of a mouthful !

It was discovered by chance really, I felt some mild palpations and thought I'd get them checked out, normally I would not have bothered but I was increasing the intensity of the rowing training I was doing.  I'm 34 years old and although I don’t train so hard in recent years I have in the past really pushed myself to extremes physically.  So now I feel rather lucky that nothing bad has happened up to this point and so glad I went to the doctors that afternoon.

Needless to say I'm taking it easy and await surgery within the next few weeks, I'm not sure exactly what will be done other than it will be open heart type surgery and I may require a pacemaker at the end of all this. 

The sooner the operation comes now the better really, waiting for it is the biggest pain.  I dont seem to be too worried about (although I was at first) i'm more curious to learn about whats going on and hear from other people who have been there, my main concern is being able to do all the things I do now after the operation.

Anyhow hope anyone else in the same boat finds another account helpful I know I did

Jim


HFEIII
New Member


Date Joined Jun 2008
Total Posts : 5
   Posted 8/28/2008 9:27 AM (GMT -7)   
STILL KICKING!  Had my surgery on Aug. 12th.  They removed aneurysm, but did not have to do valve.  The surgery was initially supposed to be about 6.6 hours, but without the valve, it was a couple hours shorter.  The doc scared the hell out of my family when he came out of the operating room early.  They feared the worst.  It's been a little over 2 weeks and I'm doing pretty good.  I have youth on my side.  I still have a pretty good pain in the center of my chest, but I think it's the breastbone healing back together.  Besides that and a lot of tiredness, I'm doing good.  My doc said when he opened me up, the aneurysm was still about 5.4 cm, but was VERY thin.  He said it could have ruptured as early as THAT NIGHT!!  He initially said I might be able to go 1-3 years!  Glad we took immediate action.  Hope all out there are hanging on!

Arielle
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/24/2009 4:39 PM (GMT -7)   
My husband has an ascending thoracic aortic aneurysm as well; his was 4.8 upon discovery in January 2004 and it's now 5.4 (we just got the results of his yearly CT scan yesterday). The doctor isn't too concerned about it and says that controlling blood pressure is the key to preventing further growth, but my husband has been on a beta blocker all this time, so obviously blood pressure control isn't the ONLY key to this thing. His grandfather had two of them, so we do believe it's a hereditary thing in his case. As for whether or not a yearly CT scan is enough, my husband had the scans every few months for the first year and now does them yearly. I personally would feel better if he had them more often, but it is what it is. I'm going to talk to my husband about getting a second opinion because according to my online research, surgical repair should definitely be considered when the aneurysm is 5cm-5.5cm, but his doctor wants to wait until it's 6cm. Yikes! Sounds like your doctor has the right idea (in my opinion, anyway) if he wants to operate when yours gets to be 5cm. It could take years for it to get to that size or it may NEVER get that big; here's hoping, eh? As for your panic, I certainly understand that! But honestly, yours is still on the small side and since your doctor is going to operate on it at 5cm, you should just live life to the fullest in the meantime and watch your blood pressure. It is definitely a black cloud, and my husband and I had a hard time at first, but now we're so used to that black cloud that the only time we get concerned is when he goes in for his yearly CT scan. I'm really uncomfortable with his being 5.4cm and hope I can convince him to get a second opinion with respect to whether or not it should be repaired now or at 6cm. Best of luck to you!

Miss Helen
Regular Member


Date Joined Aug 2008
Total Posts : 56
   Posted 1/24/2009 5:12 PM (GMT -7)   
I showed up in the ER with unusual symptoms, throbbing and bulging in my throat, palpitations etc. and because of my history of congenital valvular heart disease (aortic valve had been replaced), the ER doctors did a cat scan. They discovered that I had an aneurysm of the ascending aorta that was 5 cm. Because I presented with symptoms and because of my history of valvular heart disease, the doctors did the surgery right away. They replaced a whole section of my aorta with a dacron graft and replaced the aortic valve at the same time because they found a clot on the first mechanical valve that had been in place for 12 years.

The aneurysm that was discovered was never discovered on any previous cat scans and I've had bunches of them. It wasn't discovered during any TEE's or heart caths and I've had plenty of those. It also wasn't discovered during my first open heart surgery 12 years earlier. My last cat scan before the aneurysm was discovered was two years prior, so either that cat scan missed it or it developed over a very short period of time.

I'm very happy mine was discovered. I personally know two people that weren't so lucky. Aneurysm's don't typically give off symptoms, or those symptoms are mis diagnosed. John Ritter is an excellent example. If you have been diagnosed with an aneurysm, keep on top of it. Follow through with all medical tests that are ordered and follow all medical advice. It's not something to take lightly.

Good luck.

HFEIII
New Member


Date Joined Jun 2008
Total Posts : 5
   Posted 1/25/2009 8:44 PM (GMT -7)   
Hey!  Still around!  I thought I read somewhere that an aneurysm always keeps growing.  It is usually only a very small amount every year, but with other factors and risks, it could grow faster.  With my surgery, I seemed to heal with super-human speed and strength.  I consider myself very lucky - both with the finding of the aneurysm and the success of the surgery and post-op.  I am now running into another - hopefully not associated - problem.  about once a month since the surgery I have had vision episodes.  They usually last between 15-30 seconds.  What happens is that my sight just about goes out totally.  It get very blurry and out of focus.  Is anyone else out there having this happen??  Last week I went and saw my PCP who sent me to a neurologist who thinks I might be getting clots in my basal(or is it basil) artery.  He, along with my cardiologist and heart surgeon, is doing a bunch of tests.  One theory might be clots forming on the tube that replaced my ascending aorta.  Well, I guess time will tell.  I just had the first two tests Sat. - a MRI and MRA of the brain.  Waiting on results.  This was supposed to be a good year for me!  Well, we shall see....

ebjlady
New Member


Date Joined Jun 2008
Total Posts : 4
   Posted 2/7/2009 4:37 PM (GMT -7)   
I first posted on 6-5-08. I had a ct-scan as a follow up to a echo and an ascending thoracic aorta aneurysm was found. It measured 4.7 cm...had another ct scan in Sept. and the measurement was 4.1. I am guessing the readings were done differently. I have another scan scheduled March 12. I am praying that it is stable. The artificial valve that I have had since March '86 will be replaced when the aneurysm is repaired. I am trying to think positive but sometimes it is very hard. I am lucky that my cardio followed up on a "shadow" that he saw on my last echo.

Identifier
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/8/2009 2:17 AM (GMT -7)   
Glad to have found this board. I just had a TEE test done and the Dr. found a 4.7 aorta aneurysm and a 2.7 aneurysm their saying is on the outside on top of the V in the valves. Not sure I understand it all. I also was told to watch it until it hit 5 but was also told by my nero that I'd be better off getting it done now at 47 than waiting until I'm not healthy or something happpens in the future. I do have polycystic kidney and at this time kidney function is alright but I have huge cyst. Cardio Dr. just said don't lift nothing over 20 lbs. Like I said my nero is more upset about the aneuysms than the cardio it seems. Nero is sending me for test because I have neuropathy and says he's calling my cardio because he feels it's to importand to bypass and wants me to go to the Cleveland Clinic for testing of aneurysms. I live in Mich. Anybody have a better resource or hospital to have this checked? Also, I have a mitro valve that has a slow leak. Hope this made some since. Any input would be much appreciated. Good luck to all.

HFEIII
New Member


Date Joined Jun 2008
Total Posts : 5
   Posted 2/8/2009 11:53 AM (GMT -7)   
Don't know if you want to travel, but the doc I saw was great.  Check him out.  He's one of the best.  Yale New Haven Hospital - New Haven, CT  - Dr. John Elefteriades  He's been doing this stuff for many years.  He has tons of stuff published.

Miss Helen
Regular Member


Date Joined Aug 2008
Total Posts : 56
   Posted 2/8/2009 5:29 PM (GMT -7)   
I don't think you can get much better then the Cleveland Clinic if you're in the midwest.   I was followed for many years at the Cleveland Clinic when I lived in Ohio and in Michigan.   Very good doctors with an outstanding reputation.  The Mayo up in Minnesota is another good choice in the Midwest, although it's probably stretching it to say Minneapolis is Midwest.

Identifier
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/9/2009 12:22 PM (GMT -7)   
Thanks HFEIII and Miss Helen. I very much appreciate your input. It's definetley between the three. All three seem to come up in every conversation. Thanks again.

gpo
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/7/2009 12:35 PM (GMT -7)   

My mother died from a ruptured aneurysm of the ascending thoracic aorta at age 59, and I have been treated for hypertension since I was in my 40's.  I had always wondered about the possibility of my having one, and had mentioned my family history to my doctor many times.  Finally, at age 63, she asked me if I wanted to be screened for an aneurysm, which of course I did.  My ascending aortic aneurysm was 4.7 cm. in August, and was in the exact same location as my mother's.  My echo showed some moderate aortic valve dysfunction, but after a weight loss I'm generally without symptoms.  I, too, felt anxious about the idea of waiting another year to have it checked again, especially since there was no change in any of my medications.  All I could do was loose the extra 60 lbs. I had gained, and start an exercise program to get in the best possible shape in case I ever do need surgery!  Now I'm at an ideal weight and much more physically fit, but I have to admit that everytime I have any type of chest discomfort or light-headedness, I wonder.  We live an hour away from the closest hospital that could do emergency surgery, so I hope that if I ever need to have surgery, it will be elective.  My next CT scan will be in August, and I wonder about having the work-up done at the Cleveland Clinic for a second opinion; the hospital in my area doesn't do anywhere near the amount of thoracic aortic aneurysm repairs.

  Have any of you contacted the John Ritter foundation?  They are partnered with a study at the University of Texas.  Since I have a family history (my mother, and my brother has an abdominal aneurysm) I'm thinking of participating in their genetic study and asking my children if they would, also.

Good luck to all of you

 


Miss Helen
Regular Member


Date Joined Aug 2008
Total Posts : 56
   Posted 3/7/2009 3:34 PM (GMT -7)   
Welcome to the forums GPO and thank you for the information on the John Ritter Foundation study.   I had not know about this, but I just emailed them to see if they would be interested in including myself and my family in the study.   I think it's important to know if any of my children need to be screened.   Good luck to you.

Identifier
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 3/31/2009 6:10 AM (GMT -7)   

Thanks gpo for all the info. I obvioulsy knew of John Ritters passing and it being heart related but didn't realize it was due to a aorta aneurysm.  You've also gave a great idea in having my family checked out. Congrats on getting yourself to a healthy weight/shape in case You should need surgery, that makes a huge difference from what I understand.

 Does anybody have a cardio Dr. that seems to have such a wait and see attitude? All my other physicians tell me get it fixed asap, but my cardio seems so cool and calm. He wants to wait six months to see if it grows from the 4.7 even though they now say if your 45 and the size is larger than 4.5 surgery is warranted.


dogman
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 4/12/2009 3:07 PM (GMT -7)   
Ihave a aneurysm of the ascending aorta size 5cm.i have been to the cleveland clinic. they recommended that it should be larger because i am 81 years old and it hasnt grown in15 months.. have never been told what my limits are only to not lift over 60 pounds. any other information on this i would appreciate it . thanks-BILL
underline text


Identifier
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 4/25/2009 7:34 PM (GMT -7)   
Well I went to the Cleveland Clinic for a work up. What an excellent place for people with our problem (aneurysms). They had me arrive at 7AM and did every test possible. After all the test I saw the surgeon who explain a graph they utilize to see if you fit into a certain criteria for surgery. I happen to have polycystic kidney disease so it kind of complicates things for me. My kidney function is border line. In fact I had to drink two bottles of water before my CT because my kidney function. They have me at 4.8 to 5 aneurysm wise but want to wait for six months and do another CT.
I still feel scared all the time and keep forgeting not to lift nothing over 30lbs. My surgeon in Detroit wanted to change my valve because my tricuspid is only a bicuspid but the Cleveland Clinic said that's crazy because it's still working fine and any time you can keep your own valve vs an artificial one your better off. Besides he said I may need the blood thinners for something else some day. Sorry for going on just wanted to let every one know the Cleveland Clinic was really a great place and they really take care of you. Like I said I'm still nervous but feel a little better knowing I've been to one of the best places possible and they have a history on me now and gave me advice.

leapfrog
New Member


Date Joined Apr 2009
Total Posts : 1
   Posted 4/26/2009 4:25 AM (GMT -7)   
My sister's aneurysm was measured at 5.5 yesterday. It had been 5.2 for two years. She hasn't had a follow-up eco yet and gone back to the surgeon to find out if surgery is warranted now or if she could still just "watch" it. She's scheduled to go on a short flight tomorrow from NY to Columbus for her job and her family doctor said she should go. My sister is very frightened and has weight problems and occasional vertigo as well. Does anyone know of flight as a contraindication? It's all so frightening. Any information will be greatly appreciated. Thanks so much.

Miss Helen
Regular Member


Date Joined Aug 2008
Total Posts : 56
   Posted 4/26/2009 5:11 AM (GMT -7)   
Identifier glad you had a good experience at the Cleveland Clinic. I know that for the many years I went to the Cleveland Clinic I had a very positive experience. My bicuspid valve was replaced when I was 35, but I was symptomatic and tests revealed that my valve was calcified so badly that it was 99% closed off. 12 years later I had aneurysm repair surgery and the valve was replaced again. As long as your doctors keep an eye on your valve and feel it's not ready to be replaced yet, you're golden. Trust me, you don't want to be on blood thinners unless you have to because they really do impact your life. Keep an eye on that aneurysm and follow all the doctor's advice. Good luck.

catmantoo
New Member


Date Joined May 2009
Total Posts : 1
   Posted 5/4/2009 3:13 PM (GMT -7)   
I'm a 62 yo male, a non-smoker, who was diagnosed with an ascending thoracic aortic aneurysm, 4cm in size, through a CT-Scan 12 months ago. I was told at that time to have an annual CT-Scan to insure that it didn't get any larger. I have never had any symptoms and worked out at the gym 5 days a week, including lifting weights. I therefore was not very concerned about this. However, several weeks ago I had my annual CT-Scan which revealed that the aneurysm had grown to 5cm and it was "suggested" that I see a surgeon. After considerable searching on the internet as well as discussions with friends, I decided to visit Dr. Patrick Roughneen who is in the Dallas area. I was very impressed with Dr. Roughneen's quiet confidence and he advised me that he had done quite a few of these surgeries, all with great success. After a considerable discussion with Dr. Roughneen, it was agreed that I needed the surgery ASAP, since the aneurysm had gown 1cm in 12 months. We subsequently did other tests to rule out any blockage or valve damage, which luckily all came back negative. I had the surgery on April 21st at Baylor Hospital in Grapevine and went home after 7 days at the hospital. I am scheduled to see Dr. Roughneen this week, but feel pretty good only being 2 weeks postoperative. If I can answer any questions for anyone, please do not hesitate to ask. Thanks!
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