10 yrs post avr... anything i should be looking for?

[jbrown413]

hi -- its been just over 10 rs since i had a st jude replace my original aorta valve. i am finally going to a cardiologist for the first time in about 8 yrs. back then they told me i didnt need them anymore, but numerous other docs have been surprised. so i have an appt in a couple of weeks, and i am not sure what to ask about. are there any suspected long term consequences of mechanical heart valves -- eg. aneurysms? leakage? anything? thanks so much for any info -- joe

[MrP]

There's a clear relationship between a dilated ascending aorta and bicuspid valve...even after valve replacement. This is because of abnormalities of the aortic wall (loss of elastin). So yes, definitely ask them to look for a dilated aneurysmal aorta. If an echo test shows your ascending aorta is dilated, a CT scan will be necessary to more accurately measure the diameter and compare with what's normal for you. Hope they don't find one! Regardless, annual echo tests are recommended going forward to not only evaluate your mechanical valve but to continue to monitor for aneurysms.

[rtblount]

You should insist that the cardiologist take a good look at your aorta, especially if you had a bicuspid valve replaced. I had a bicuspid aortic valve replaced in October 1997 with a St Jude mechanical valve which is operating perfectly. In May of 2005 my cardio discovered that I had an ascending aortic aneurysm measuring 5.25cm which is pretty large. I had a MRI in October showing that it had enlarged to 5.3cm. My cardio and his recommended thoracic surgeon do not want to do surgery if or until it reaches 5.5cm since they say redo's are riskier. I'll have another CT scan in May 2006.

[Rush20]

First, congratulations on 10 years of successful post-operative health. I had my AVR in August of 2003 and I have my next scheduled cardio appointment this April. I also have not had a post-op echo performed so by reading this thread I think I'm going to push the envelope with my cardio. EKGs are the only standard tests I've taken and they usually strap me up at the beginning of each cardio appointment.

I feel relatively good, however the one think I noticed post-op is that my body cannot take the abuse it used to pertaining to lack of sleep, rest, etc.

I didn't realize there is a potential link to a dilated Aorta or potential dissection. Pretty scary, considering I thought I was out of the woods with a successful AVR surgery.

[jbrown413]

i last wrote earlier this year. i reported

-- how i had had a st jude aorta replacement back in 1995.

-- how i had been told after my second post-op echo (3.1 yrs post-op) that everything was fine and that i did not need a cardiologist any more.

-- about how over the past 6 years many other docs have often seemed surprised that i didnt have a cardiologist

-- about how i had made an appointment with the cardiologist who had done the 1999 echo to get a follow-up

-- and i asked what i should be looking for.

i got some great responses telling me that bicuspid aorta valves are related to general failure of the aorta, resulting in aneurysms. when i saw him i asked for a repeat echo, explaining what i had heard. he seemed to be completely unaware of this, and was somewhat reluctant to do a repeat echo. in fact, he never scheduled me for the echo. (he also said he "didnt know anything about toothbrushes" when i asked about home ultrasound systems for plaque removal. (maybe i shouldve know then that something was wrong.))

anyway, since he seemed so unconcerned, and since it was golf season, i put off the echo till about 2 weeks ago. i had to tell the tech that i also wanted her to look at the aorta for dilation. at the end of the echo i was told my aorta was indeed dilated, and i was rushed downstairs to make a ct appointment, which was done a week later. of course, in the week i did some more research, and found that 5.5 cm seems to be the point where surgery is done.

well after waiting another 4 days, i am finally told that my aotirc root measures 5.8 cm!!! i am furious about this! i now understand that if we had been monitoring all along, we'd have a better idea of the speed of progression, not to mention i couldve been on a beta blocker which might have slowed progression.

on top of that, i got a copy of my first echo with this guy, and it said then that there was slight dilation!!! that was the time he told me i didnt need a cardiologist anymore!!! from what i understand right now, that first sign of dilation shouldve been the flag to get my first of many ct's to keep closer track of progression.

well, aside from sharing my woes, i guess i'd really like it if anyone can tell me where my theorizing here is off base. have others heard the 5.5 cm as being the cut-off for surgery? have others been sent for ct's after the first sign of dilation? has anyone else ever been told they didnt need a cardiologist?

also, in thinking about doing more surgery,(which sounds like its pretty inevitable, (unless of course i pop first)), i have come across the massachusetts general hospital aorta surgery center in boston. i live in springfield, ma, about 2 hours away. has anyone been there? how was it? is it worth it, or should i go back to my last surgeon, who seemed to do a good job on the valve implantation. how much more involved, risky, etc, is an aorta root graft as compared to an aorta valve replacement, especially considering i already have an AVR? does anyone have any web links to this type of info?

i thank you all in advance for your thoughts. i will hopefully see my last surgeon, and maybe MGH's in the next week or two. i will keep you posted, and thanks again. -- joe

[MrP]

Joe,
Sorry you recently learned you indeed have an aortic aneurysm, and especially since you had AVR for a bicuspid valve 10 years ago. With respect to timing of surgery, the risk of surgery is weighed against the risk of rupture or dissection, unfortunately both of which result in death for most people. A recent study at Yale medical (see url link below) shows that 6.0cm is the "hinge point" after which risks of rupture or dissection incease considerably, and therefore, elective surgery is recommended before the aorta reaches this size. For someone without BAV, 5.5cm is the recommended size for surgery; due to weaker aortic tissue, 5.0cm is the recommended size for BAV patients. Although your BAV was replaced with mechanical valve earlier, your aortic tissue remains weaker as a result of BAV which is more than just a valve disease. Therefore, surgery is recommended earlier for BAV patients.


http://72.14.203.104/search?q=cache:PiVQ1Ldma34J:www.utmem.edu/cardiology/articles/thoracic%2520aneurysm.pdf+bicuspid+aortic+valve+an eurysm+yale&hl=en&gl=us&ct=clnk&cd=9

Your aneurysm size is already 5.8cm...you need surgery right away. Risks of rupture or dissection are signficant. In addition to the Yale study referenced above, please check the bicuspid foundation website at:

www.bicuspidfoundation.com

My recommendation is to find a thoracic surgeon with years of experience, and preferably, one who has performed thousands of these types of surgeries. Redo operations carry greater risk, but these risks can be managed by an experienced surgeon. You'll find some information regarding surgeons on the bicuspid website also. Yale Medical has an excellent surgeon, but I can't remember his name. Dr. Joseph Cosseli in Houston is one of the best also if you elect to travel for this surgery. Cleveland Clinic also is an excellent aortic center.
All my best,
MrP

[Arlyss]

Your experience is all too familiar, and it is a dangerous situation to be in. I am very concerned about bicuspids after their valve is replaced. People have been told they are fixed, with nothing more to be concerned about, especially if they receive a mechanical valve projected to last longer than the human life span. The "old" and still too common thinking was that replacing the valve was all that was needed. My husband was one of the people that was told that, and today I know of many more. Not all of them are found in time.

There was a theory that slight dilation of the aorta would not get any worse once the valve was replaced in those who have stenosis. It was only a theory - a dangerous one. Similar to your experience, this could easily have cost my husband his life - on a report done on him at that time, his aorta was drawn enlarged and labeled "post stenotic dilatation". Like you, we were not told, and he was not followed. Other than following his protime/INR, nothing was checked. I am not sure what was thought about those who had regurgitation or leaking of their bicuspid aortic valves, but it appears that generally the aorta has not been monitored. Today we know that the valve(s) and the aorta should be carefully followed for a life time.

The aorta is unpredictable - there is no guarantee that it will not dissect or rupture at a certain size. Statistics are used as guidelines. I have read that half of the people who were asked to wait until 6 cm for surgery (in the days when aortic surgery was very high risk even in the most experienced hands) dissected or ruptured before they reached 6 cm. Today, those with BAV disease are offered surgery before 5 cm by those aortic surgeons who perform aortic surgery with low risk/high success rates.

Surgery on the aorta is very different than surgery to replace a valve. You might visit www.bicuspidfoundation.com regarding further information. You will note that Dr. Eric Isselbacher of Mass General is on the scientific advisory board.

Please keep your blood pressure low and avoid heavy lifting and anything that might put pressure on your aorta until that aneurysm is safely removed. You need to be seen by an aortic expert as soon as possible.

Best wishes,
Arlyss

[Arlyss]

Generally after 10 years, the scar tissue has softened, making it easier for the surgeon to open and work in the chest again.

However, you want to be very careful that whoever does your surgery checks to see if your aneurysm is right up against your sternum (breast bone). If it is, it will take specialized knowledge to open your chest without cutting into your aorta - that is a life-threatening situation. I have heard of it happening.

I notice you mention being seen in the next week or two. If you were my family member, I would have you seen by an aortic expert tomorrow . In 2001, my husband was seen within 24 hours of my call to an aortic surgical office. It was the first thing that saved his life, because his blood pressure was out of control, and that was dealt with immediately. You need help asap.

Best wishes,
Arlyss

[EireCara]

Hi Joe, I hope you take action and get things sorted out ASAP. Please keep us posted. Very best wishes. 8)

[SumoRunner]

Hey Springfield, I'm not too far away just north of Albany. My son went to Springfield College so I've spent some time over there too.

I had a St Jude's AVR 15 years ago and have had a annual checkup with my cardiologist every year since. They have done an echo every two or three years. I'm rather surprised you have not. I always thought this sort of thing would be mandatory.

[Karlynn]

If you were my family member, I would have you seen by an aortic expert tomorrow . In 2001, my husband was seen within 24 hours of my call to an aortic surgical office. It was the first thing that saved his life, because his blood pressure was out of control, and that was dealt with immediately. You need help asap.

Best wishes,
Arlyss

I emphatically support this advice!

[Farid]

i last wrote earlier this year. i reported

-- how i had had a st jude aorta replacement back in 1995.

-- how i had been told after my second post-op echo (3.1 yrs post-op) that everything was fine and that i did not need a cardiologist any more.

-- about how over the past 6 years many other docs have often seemed surprised that i didnt have a cardiologist

-- about how i had made an appointment with the cardiologist who had done the 1999 echo to get a follow-up

-- and i asked what i should be looking for.

i got some great responses telling me that bicuspid aorta valves are related to general failure of the aorta, resulting in aneurysms. when i saw him i asked for a repeat echo, explaining what i had heard. he seemed to be completely unaware of this, and was somewhat reluctant to do a repeat echo. -- joe

Anyone correct me if I'm wrong, but I would find another cardiologist who is attentive and shows that he cares. I'm surprised that you waited that long.

I’ve been seeing my cardiologist every six month since Jan 2004. My cardiologist told me last January that all is ok and he’ll see me in one year; that would have been next January. I said that I would rather come back in June/July 2006 just to have more data since the numbers were not consistent; then if all was ok, i'd come bace in a year. He was very agreeable and told me he’ll do what makes me comfortable. Went back last June/July 2006 and this is when they found my Aortic Valve Regurgitation. My Operation is Nov 21.

So my point is ...don’t wait and take matters in your own hand. Best wishes.

[Arlyss]

Generally speaking, when a problem is found with someone's own valve, there is a protocol for monitoring the valve until it needs to be repaired or replaced. This is what Farid is describing. When the aorta is not included in that process, people either have an enlarged/aneurysmal aorta left behind following surgery or it becomes a surprise that is "discovered" in surgery. I would not want either of those things to happen to me or to anyone else.

After the valve is replaced, I am sorry to say that I know of several bicuspids whose aortic aneurysms are missed, even when they have echos every year. Either the echo does not include views of the ascending aorta, or it is missed by whomever interprets it.

The 2006 Guidelines of the AHA/ACC are now including the risk of aortic aneurysm in those with BAV - bringing much needed awareness.

For my own aorta and BAV/prosthesis, an echo is a start, but then I would want a complete image of my aorta. It is not safe to guess, and there is no need to do so.

Best wishes,
Arlyss

[Susan BAV]

Hi Joe -

Wow! What a shock for you! Arlyss has quite a bit of first-hand experience with BAV disease. That point she wrote about the scar tissue being soft was a bit of good news but hopefully you're not even reading this right now but you're on the phone making your appointment with an aortic specialist or you're even in his office keeping an appointment with him right now. Find a good one ASAP. More Valvers will surely post here soon. Maybe they'll have more suggestions.

Please keep us posted. We all hope things go well for you. Try to keep your stress levels down and your bp down and don't lift, push or pull heavy things. Keep up on your rest.

[Mike C]

Joe,

Be very agressive in getting this fixed now, I recommend MGH or Brigham, both excellent hospitals, at top in coutnry and not far from you.


My cardio at MGH told me when mine was discovered at 5.2 that 5.6 or above, he would have recommended me not going home but start doign tests for surgery.

At MGH, Hilgenberg, great guy, great hands, he is director of throacic aortic surgery, or soemthing to effect. Also, Macgillivary is very highly recommend.

[jbrown413]

all of your posts have been very helpful, and so caring. thank you all so much. i am especially thankful for the links to the bicuspid foundation. that sure explains a lot, as i have a number of the other secondary symptoms. i am also very thankful for the info on a lower cut-off point for surgery for those with BAVD (bicuspid aortic valve disease) as this helped me decide to go to mass general (MGH) in boston, rather than back to my local surgeon, as he seemed to think 5.8 was not so big as to necessarily require immediate action. i have the earliest appt they had available, the tuesday after thanksgiving. i will be bringing a suitcase, so i can stay if they can do me soon. i figure i have been living with this threat unknowingly for probably the last year or two, at least. i am a psychologist who specializes in anxiety disorders, and i find this recurring threat to my life very interesting from the perspective that i can certainly empathize with the people i work with. up until getting the results of the ct, i felt nothing different than before. now i find myself noticing the slightest difference in how i am physically feeling -- am i feeling dizzy? nauseous? weak? i recognize what this is -- it is anxiety. so for me, while having to get cracked open again and endure the uncertainty of major surgery is certainly a bummer no one should have to do more than once, it is also a fascinating opportunity to explore the very thing i have spent my life trying to help people with -- anxiety. so thanks again -- and i'll keep you posted. -- joe

ps-- if anyone wants to talk more about anxiety, please visit my website -- www.drjosephbrown.com, and email me. i suspect that after surgery i'll have some time to kill.

[Phyllis]

Joe, so glad you got an appointment at MA General - you will be in great hands. Please keep us posted and you will be in our thoughts and prayers.

[Arlyss]

The higher the systolic blood pressure, the more strain is placed on the wall of the aorta. Those with BAVD generally have blood pressure that spikes high when stress kicks things like adrenalin in, and also with exercise (this is called labile hypertension). Just the events of normal living can peak their blood pressure higher than the average person's. Exercise can do it too. Medication to lower that pressure is so important. (The diagnosis of an aneurysm is in itself certainly enough to raise blood pressure!)

Taking medication, monitoring blood pressure at home, and keeping a record is so important to begin, if that is not already in place when the aneurysm is found, and should be a life-long home work assignment for those with BAVD!

The aorta can "feel" pain and cause a variety of symptoms. I would not hesitate to go to the ER at an aortic center, rather than wait for an appointment, if I had any indication at all of something not feeling right. It is hard to sort out what is happening, and it is best not to try - just get to a place with expertise. You can alert the physician that you are planning to see, or is currently caring for you, that you are enroute to the ER. Anxiety/stress raising blood pressure is very understandable, and no one should hesitate to seek help.

Best wishes,
Arlyss

[Mary]

I put your surgery date on the calendar Joe; please let us know if the date is changed.
I have read this thread with great interest; I have had my BAV replaced, and although the aortic root is monitored with echos, I think that's the only portion that is.
Best wishes for a successful surgery, and I will check out your website.
Mary

[MrP]

Joe,
I'm interested in knowing whether or not you were originally diagnosed with regurgitation (insufficiency) or stenosis of your bicuspid aortic valve (or both) prior to AVR 8 years ago. Also, is your aneurysm in the ascending aorta or aortic root? If in the ascending aorta, does your aneurysm also extend into the lesser curvature of the transverse aortic arch or even more of the arch? This last question may not be known until your operation is performed in which case more extensive surgery and DHCA are necessary by a skilled surgeon. As Arlyss points out and also as described towards the end of the Yale article regarding timing of surgery, if you have symptoms it is very important to have your aneurysm resected as soon as possible. Symptoms most common for the ascending aorta include chest pain at the anterior of the breast bone and indicates stretching of the aortic media. My experience was this pain was quite sharp. I do caution you, however, to insist on the most experienced thoracic surgeon available. If you have chest pain, do not compromise and continue to insist on your surgeon of choice. I mention this based upon regrets of a gentleman (also a doctor...neurologist) who I met post surgery. He suffered from a stroke during surgery for an ascending aorta that extended into the aortic arch....told me he wished that he'd waited one more day ('til Monday) for his surgeon of choice. His actual surgeon was highly regarded, but he still wished that he'd waited for the more experienced surgeon. In his case, he was asymptomatic and was encouraged to have his aneurysm resected without delay by his cardiologist. His aneurysm was resected the same day he learned it existed.
Looking forward to talking to you after your successful surgery.

All my best. MrP

[jbrown413]

hi mary -- that tues nov 28 date is not a firm surgery date, only my first appt at mgh, altho i will have my suitcase with me just in case. will let you know when surgery is if i can. and thanks for the concern.

hi mrP -- you asked

"Joe,
I'm interested in knowing whether or not you were originally diagnosed with regurgitation (insufficiency) or stenosis of your bicuspid aortic valve (or both) prior to AVR 8 years ago."

ever since i was a kid the diagnosis was bicuspid aorta valve with stenosis. then the fall before surgery, which was 1995 (so actually 11 years ago) there was significant regurgitation.

you also asked --
"Also, is your aneurysm in the ascending aorta or aortic root? If in the ascending aorta, does your aneurysm also extend into the lesser curvature of the transverse aortic arch or even more of the arch? This last question may not be known until your operation is performed in which case more extensive surgery and DHCA are necessary by a skilled surgeon."

i dont know if i can answer these questions, but maybe you can. the ct scan report says the admitting dx is aortic root aneurysm. it says "there is dilation and tortuosity of the proximal thoracic aorta. the aorta measures 5.8 x5.8 cm in ascending portion. the mid aortic arch measures 3.2 cm. the distal aortic arch measures 2.7 cm. the descending thoracic aorta at the level of the left atrium measures 2.4 cm."

i dont know how to interpret these findings. i was assuming it was the root that was 5.8 cm, but the report says the 5.8 measurement comes from the "ascending portion". also it sounds like maybe the mid aortic arch at 3.2 might be above normal limits? i have no idea what the normal limits are on any of these measurements. do you? or anyone else? and what exactly is DHCA? i just re-read the notes from my first sugery, where my blood was chilled to 28 degrees. that sounds hypothermic to me (atleast i know i would be wearing a hat and gloves), but what do i know. also, the doc i am seeing is Gus J. Vlahakes. anybody know him? he's chief of cardiac surgery there. i dont know how i got to him, just called the number on the cardiac surgery website, and spoke to a very nice betty ann. anyone know how they assign docs at mgh?

again, thank you everyone for your support. and i'm sure my wife jeanne would want me to thank you too for her. she has been reading all your posts, and has said that this is unlike any other forum she has ever read -- that the people sound so knowledgable and genuinely concerned. THANKS!

[Mb]

Dear Joe:

Are you in luck! Gus Vlahakes is my husband's surgeon. He performed an aortic and mitral valve replacement on him five years ago. You will need a cardio in Boston, so ask Gus to refer you to Dr. Charles Boucher, while you are in hospital. My husband continues to see him and our local cardio in Springfield. I had posted to you before on this link about both doctors, but I see that post has been lost in never never land.

Dr. Vlahakes is about 50 years old. You will find him to be have a world of difference in regards to intelligence, and the amount of time he will be willing to spend with you. You will walk out of that appt. with more knowledge than you might even want. Do not bring your bag. Dr. Vlahakes books his surgeries, particularly more difficult ones, on particular days of the week. My husband needs a pacemaker right now, but he has a severe leak in his tricuspid valve, which should be repaired first. It is not a common surgery, and Gus only does 5 or 6 a year,generally on the third week of the month. He will not schedule your surgery unless he knows he will be around in the days afterwards. My husband's surgery was at 5:00AM, and he was in the OR waiting for him. At 9:00PM post surgery, my husband had a problem, and Dr. Vlahakes was still in the hospital, and took care of the issue himself. You are going to be bowled over with the difference in care that you receive at Mass General, nurses, and the doctor's in particular.

I would love to know who your local cardiologist is. My husband has one here, as well as using Dr. Boucher. He uses the local cardio, just in case he has an emergency., I can assure you that Dr. Boucher no way would have let you off with not seeing him at least once a year. It takes an hour and a half to get to Mass General. Frnakly it is an easy drive....you almost cn;t get lost if you follow the directions they send. If you would like to know more, e-mail me, and I will call you! - Marybeth

[Mb]

Oh....Betty Ann is one sweetheart! She books the appointments, etc. so stay on her good side! (Although I've never seen her bad side)

Marybeth

[MrP]

Sounds like you'll be in great hands, Joe. Prior to meeting with your surgeon, it is always a good idea to prepare a written list of questions.

With respect to my earlier questions and your responses, I agree with you that it sounds like you have an ascending aortic aneurysm and not aortic root aneursymal dilation. Your ascending aortic aneursym may extend slightly into the beginning of the arch. This will be a good question to ask your surgeon. As we age, the diameter of our aortic arch naturally enlarges and more so with medial degenerative disease of the aorta (associated with BAV). You may want to ask your surgeon about the need for a hemi-arch resection of the transverse aortic arch in addition to resection and replacement of your ascending aorta. This may reduce the risk of another surgery in the future by removing as much of the diseased part of the aorta now.

DHCA refers to profound or deep hypothermia and circulatory arrest for cerebral protection during resection of your asneursym....to the point where EEG is isoelectric. This is especially important for an ascending aortic anerusym that extends into the arch.

Since your bicuspid aortic valve was replaced 11 years ago with a mechanical valve, you may want to ask your surgeon about his technique to secure the Dacron graft for your aorta. Does he first evaluate the existing mechanical valve and determine if it needs replacement? What criteria does he use in determing this? How does he determine if the aortic root needs to be resected? If it does, will he replace the existing mechanical valve? In my case, my BAV was replaced with composite mechanical valve with Dacron graft. I'm interested in learning about the procedure your surgeon will follow given you already have a mechanical aortic valve.

Hope this helps. Thanksgiving is the best time of year for dealing with anxiety...don't you think?
Best,
MrP

[jbrown413]

YES -- thanksgiving is a great time for anxiety!!!

i can actualy follow all that you wrote, having listend to dr Eric I's presentation in PA in may/06 at bicuspidfoundation.com. i agree, my ct scan says in the ascending aorta, so i dont think it is actually in the root, technically (which would be below the sinotubular juncture). i am hoping this means we can leave the st jude where it is, as i expect the longer it sits there undisturbed the less chance of eventual infection, and the less chance of clotting. (I have no idea if any of those presumptions are true, but they seem logical). one thing i didnt report in my quotations from the ct scan were the circling and underlying someone did on them. the 5.8 x 5.8 was circled twice, and the 3.2 cm measure for the mid aortic arch was circled. none of the other values was circled. so maybe the moid aortic arch is involved, which would send me to "lost in space" territory (as in being in suspended animation eg -- DHCA, as thats what it sounds like to me). as for your other questions -- i will try to remember to ask them.

[Rush20]

Joe,
Sorry you recently learned you indeed have an aortic aneurysm, and especially since you had AVR for a bicuspid valve 10 years ago. With respect to timing of surgery, the risk of surgery is weighed against the risk of rupture or dissection, unfortunately both of which result in death for most people. A recent study at Yale medical (see url link below) shows that 6.0cm is the "hinge point" after which risks of rupture or dissection incease considerably, and therefore, elective surgery is recommended before the aorta reaches this size. For someone without BAV, 5.5cm is the recommended size for surgery; due to weaker aortic tissue, 5.0cm is the recommended size for BAV patients. Although your BAV was replaced with mechanical valve earlier, your aortic tissue remains weaker as a result of BAV which is more than just a valve disease. Therefore, surgery is recommended earlier for BAV patients.


http://72.14.203.104/search?q=cache:PiVQ1Ldma34J:www.utmem.edu/cardiology/articles/thoracic%2520aneurysm.pdf+bicuspid+aortic+valve+an eurysm+yale&hl=en&gl=us&ct=clnk&cd=9

Your aneurysm size is already 5.8cm...you need surgery right away. Risks of rupture or dissection are signficant. In addition to the Yale study referenced above, please check the bicuspid foundation website at:

www.bicuspidfoundation.com

My recommendation is to find a thoracic surgeon with years of experience, and preferably, one who has performed thousands of these types of surgeries. Redo operations carry greater risk, but these risks can be managed by an experienced surgeon. You'll find some information regarding surgeons on the bicuspid website also. Yale Medical has an excellent surgeon, but I can't remember his name. Dr. Joseph Cosseli in Houston is one of the best also if you elect to travel for this surgery. Cleveland Clinic also is an excellent aortic center.
All my best,
MrP


Wow! The information shared at the bicuspidfoundation.com website was eye-opening! I'm not sure if I'm glad I read it or not. I thought after my AVR three years ago, I was out of the woods. At least that's what my cardio and surgeons told me before surgery. "One Surgery, Coumadin for life and I'll be fine".

Since I moved 1200 miles to Sarasota since my surgery, maybe I should get my medical records and make sure nothing was noted about my aorta, etc. after surgery. Yikes! :eek:

[jbrown413]

hi allen -- i am not an alarmist, as evidenced by the fact that i still havent see the surgeon despite all the above written about my dire straights. i would see them sooner, but they seem busy. but i would not recommend just reviewing your medical records. i think what is happening to me is specific to those who have had a bicuspid aortic valve replaced, so if that is not you, you should be safe from my fate, i think. but the cardio professional association says we (heart valve replacement reciecients) should be considered to have heart disease even after valve replacement, and should be followed as if we hadnt had replacement yet. so i would suggest, find a cardio guy, and run what he/she says past the well informed members of this forum, who, from my experience, know alot more than my cardio guy knew. -- joe

[jbrown413]

i keep seeing in peoples signatures at the end of their posts that they were treated for "false aneurysms". what is that??? does it mean maybe i dont really have an aneurysm??? i doubt it, but cant help but hope against hope that its all a big mistake. thanks -- joe

[jbrown413]

sorry, but i come up with more and more questions, especially at night when i am not working. i am worried about the cath. the one before my last surgery was actaully the worst part of the whole thing. the guy couldnt get the catheter in, and i needed narcotics to put up with the pain. so obviously i am a bit reticent to do it again. but also worry that my "tortous" (meaning twisted i assume), and bloated aorta could be damaged pre-op by a cath procedure. does anyone know if a 64 slice cardiac ct or mri would give the same info on coronary artery conditions??? thanks again -- joe

[Mike C]

not an epxert on differences btw cat or ct scan but i can tell you about my personal experience at mgh.

i had a ct scan prior to surgery at mgh to confirm measurements of aorta and look for coronary artery disesae, no cath for me.

[Rush20]

hi allen -- i am not an alarmist, as evidenced by the fact that i still havent see the surgeon despite all the above written about my dire straights. i would see them sooner, but they seem busy. but i would not recommend just reviewing your medical records. i think what is happening to me is specific to those who have had a bicuspid aortic valve replaced, so if that is not you, you should be safe from my fate, i think. but the cardio professional association says we (heart valve replacement reciecients) should be considered to have heart disease even after valve replacement, and should be followed as if we hadnt had replacement yet. so i would suggest, find a cardio guy, and run what he/she says past the well informed members of this forum, who, from my experience, know alot more than my cardio guy knew. -- joe

I did have a bicupsid aortic valve replaced with a St. Jude Mechanical in 2003. My post-op meeting with my surgeon and cardio was positive and both told me all other areas, aorta, other valves, chambers, coronaries, etc. looked good. They caught the leaking valve within 6 months of the endocarditis so there was no heart enlargement or permanent damage.

However after reading the information you linked, I want to make sure I stay on top of my current cardio. I had to ask for an echo this year as I never had one post-op and I wanted a starting point with my new cardiologist here in Florida.

[NitwitBoston]

I had my aortic valve replaced with a St. Jude 2/97, my Doc has been checking on it since it was replaced. Even after all the checkups, My Doc is of the opinion that the valve needs replacing, because of leaks were it is sewn into the top of the heart. just trying to get thru the holidays before we do this. I was told that the second time is a little more risky than the first, and need a cracker-jack of a surgeon to do the job. as far as any Doctor telling anyone that has had valve replacement in the past that they don't need to stay under the care OF A COMPETANT CARDIOLOGIST, LEAVES ME TO BELIEVE ITS TIME TO FIND ONE.

THIS SOUNDS LIKE AN INSURANCE COMPANY DICTATING PROTOCALLS TO THIS TYPE OF " MEDICAL PROFESSIONAL? "

It is your body, and your responsibility to seek out the best to keep you ticking. GOOD LUCK!

[Rush20]

I had my aortic valve replaced with a St. Jude 2/97, my Doc has been checking on it since it was replaced. Even after all the checkups, My Doc is of the opinion that the valve needs replacing, because of leaks were it is sewn into the top of the heart. just trying to get thru the holidays before we do this. I was told that the second time is a little more risky than the first, and need a cracker-jack of a surgeon to do the job. as far as any Doctor telling anyone that has had valve replacement in the past that they don't need to stay under the care OF A COMPETANT CARDIOLOGIST, LEAVES ME TO BELIEVE ITS TIME TO FIND ONE.

THIS SOUNDS LIKE AN INSURANCE COMPANY DICTATING PROTOCALLS TO THIS TYPE OF " MEDICAL PROFESSIONAL? "

It is your body, and your responsibility to seek out the best to keep you ticking. GOOD LUCK!

Sorry to hear about the leaking. How soon after the initial surgery in 1997 did they realize the valve was leaking?

[NitwitBoston]

Rush 20,

my leak was discovered about six weeks ago, after twice yearly stess echo's and plain echos, the biggest clue was with a big change in the clicking of the valve, which made me call for stress echo to check it out, the EKG was very abnormal. this was followed up with an echo the next week, which was followed by a TEE. I am not sure what comes next, just trying to get through the holidays.

[Rush20]

Rush 20,

my leak was discovered about six weeks ago, after twice yearly stess echo's and plain echos, the biggest clue was with a big change in the clicking of the valve, which made me call for stress echo to check it out, the EKG was very abnormal. this was followed up with an echo the next week, which was followed by a TEE. I am not sure what comes next, just trying to get through the holidays.

Sorry to hear you have to go through this again. Try to enjoy the holidays as we're here for support if you need us.

BTW - what "change in clicking" did you notice? Was it something you heard, felt or could only hear when using a stethascope (sp?).

[NitwitBoston]

Rush
My change in clicking started with an increase of noise that we get to a point that we don't notice, or ignore the everyday clicking. what I noticed on top of the increased noise was a skipping that started out about every 16 beats of the heart there was a stop for a few seconds, which steadily shortened to now every four to five beats. It has reaced the point that it keeps you awake at night while trying to fall asleep, which I usually can do within 30 seconds. I went out to get the loudest ticking alarm clock that I could find, which is capable of masking the noise and tendancy of counting clicks.

[Rush20]

Rush
My change in clicking started with an increase of noise that we get to a point that we don't notice, or ignore the everyday clicking. what I noticed on top of the increased noise was a skipping that started out about every 16 beats of the heart there was a stop for a few seconds, which steadily shortened to now every four to five beats. It has reaced the point that it keeps you awake at night while trying to fall asleep, which I usually can do within 30 seconds. I went out to get the loudest ticking alarm clock that I could find, which is capable of masking the noise and tendancy of counting clicks.

Thanks for the information. I have also had various PACs/PVCs during moments of high stress/BP as well. I have also struggled in the past over falling asleep. Mostly due to the BP meds, stress, etc. I've never corrolated the issue with a potentially leaking valve so it's something to also think (stress) about. :(

I had an annual echo done earlier this year and it showed no signs of leaking. Prior to the BP meds I've been on since March, the only time I had missed beats, etc. was during times of fatigue and lack of sleep (over several days averaging 4-6 hours). Now, I seem to get them more often especially at night and my cardio indicated they were results of the various BP medication cocktails. Something we're working on together until we get it right. (See my other post regarding my frustration with high BP). However since reading this post, I've really changed my view of long-term monitoring and heart disease. Even though my heart has been "fixed" with the new valve, the heart disease is still there and needs to be monitored for linked conditions.

Good luck - hope all works out well.

[jbrown413]

met with dr gus vhalakes at mgh today. great meeting. he really seems to know his stuff. i went in thinking i might have to stay, and instead he was talking at first about possibly monitoring, but once i said, ok -- lets monitor -- he was like -- 'oh no, we have "carnal" knowledge here' (i swear, he used that word. my wife and i discussed it later, and i suggested that maybe it was surgeon talk for "now that i know about it, i'm f***** if i dont something about it in time".) anyway, i had lots of questions, and he showed me my films, and showed how the aneurysm isnt up against the strenum, so he can get in. he said the ascending aorta had to be replaced, but not the arch (he said 3.2 cm was about right size). i thought that meant i didnt have to the dhca (hypothermia thing), but he said they do it on everyone. [on that he said, with just 15 minutes, theres nothing do it. about 20 mins and it takes an hour longer to wake up. up to 30 mins, and it make take the night to wake up, and after 40 minutes 'people just come out weird'.] he said he thought the st jude could stay in place, but wants to see a 64 slice ct scan first, and that if the imagines are good, i wont have to do a catherization to look at the coronary arteries (which was the worst part of the avr 11 years ago). he wants me to do a beta blockade to get my bp systolic down to the 110 area, and a resting pulse of 600ish. i see my pcp tomorrow for a long ago scheduled physical anyway, so i can get that started. i am scheduled for admission on tues jan 2, and surgery wed 1/3. this is perfect for me, as it lets me finish up my year with my practice, get my taxes done, enjoy the holidays, and then recover watching championship football, not have to shovel snow, and still be ready for golf season 4/1! life is good. thanks again for everyone's help, and i still have some of you to respond to personally when i get around to it, for as you might imagine, things have been hectic. -- joe