Question.

[ALLBETTERNOW!]

Hi everyone! Themalteser, I believe I sent you an email a few years ago and our measurements were about the same. I will be having my surgery in mid January of 2016.

When I learned that the surgeon thought it was time for the aneurysm repair, my immediate emotional response was intense relief. That feeling has not changed much over the past month or so. A round the same time, I learned a dear friend of mine was diagnosed with lung cancer. She is going through so much with the chemo and radiation and her chance of survival is pretty low -- 20%. After hearing about her situation, I am grateful that I have something that can be repaired.

I am get frightened as it approaches, the surgery, but for now, I am steady.

Amy

You will be fine and when you wake up all fixed the sense of relief will be great. It takes done of the pressure off the surgery worry and concerns.

 

[cldlhd]

Well in my opinion the medical and surgical fields are usually pretty conservative when it comes to new technologies. Here in the U.S. there is also a higher level of litigiousness . Also I believe the company funding PEARS is a private UK company so I'm sure that factors in with the earlier availability.
Regarding your aorta nobody can guarantee you it won't rupture at approx the 5cm mark they can only give statistics and tell you odds and if they're comparable to the surgery then only you can decide if it's time. Is the fear of the surgery greater than the fear of living with the aneurysm? Do the physical restrictions or being on the Irbesartan bother you ?

 

[themalteser]

Hi cldlhd - You're right. Fear of surgery is probably the same level of fear, as living with this condition, as it all comes down to the fear of death. The physical restrictions and being on a daily irbesartan does bother me psychologically, as I'm 32 years old and feel that I'm different compared to other 32 year old (statistically speaking). If I had to decide whether its time then I'd probably go for the surgery, but here in the UK the system is different for both private patients and also for NHS funded. I need a referral, and therefore that does not empower me with a decision, so I have to go with what my cardiologist has advised, which in a way is a relief that he doesn't think I need surgery, but on the other hand.... you know....

Guess I'm caught in a cycle !

 

[ALLBETTERNOW!]

Hi cldlhd - You're right. Fear of surgery is probably the same level of fear, as living with this condition, as it all comes down to the fear of death. The physical restrictions and being on a daily irbesartan does bother me psychologically, as I'm 32 years old and feel that I'm different compared to other 32 year old (statistically speaking). If I had to decide whether its time then I'd probably go for the surgery, but here in the UK the system is different for both private patients and also for NHS funded. I need a referral, and therefore that does not empower me with a decision, so I have to go with what my cardiologist has advised, which in a way is a relief that he doesn't think I don't need surgery, but on the other hand.... you know....

Guess I'm caught in a cycle !

No easy choice. With this condition, you are good until you are not. One of my big factors in pushing Is that I live and work about an hour from the surgeon and hospital. My local hospital could not handle me if it dissected, only get me a helicopter ride out which may or May not have been fast or good enough. Cleve Clinic and Yale Aortic center seem pretty confident with their calculations and protocols as to,size and timing. I was surprised my insurance company approved it without an argument as far as I know. I had a lot going on and I guess they didn't want to risk emergency surgery and helicopter expenses (Cynical,I know)

 

[themalteser]

When is your surgery going to be held allbetternow ? Your locations seems like mine, the only center specialised, that performs this surgery is by helicopter, which makes me nervous aswell. I have alot of reassurance, but on the other hand, none of them have a crystal ball to hand. On that same analogy, I could cross the road and get hit by a car, there is always a % chance of this happening, at any point in time. Probably, higher than the risk of surgery or risk of an untoward event on my aorta! There is also a risk of a nuclear strike and so it goes on.... its just not nice to have this.

 

[valdab]

I was told my bav was in great shape-no stenosis and only trace leakage-but once in there he gave it a few stitches and a decalcifying treatment. The echo I had a few days post surgery showed no leakage.

That's an interesting point. Like you, I have been told by my cardiologists - and the reports seem to bear this out, that my valve is functioning well. Trivial regurgitation is the only thing that is mentioned. I suppose what concerns me is when I met with the surgeon three years ago (after the Echo showed a 2mm growth which was subsequently contradicted by an MRI) and we spoke about surgery, I asked if he would just repair the aorta but he told me that he would replace the valve too. I asked why this would be as according to the cardiologist and the Echo reports the valve had no stenosis and he told me that it almost certainly did. At the time it was 4.6 and I was advised to defer surgery so although I came away very confused, I haven't laboured to long over why he would say that.

I am now in the same boat - a 2mm increase which this time has been confirmed by MRI (so now at 4.8) and will doubtless be summoned to meet once more with the surgeon. If he insists on replacing the valve, I guess I am entitled to look elsewhere for another opinion. I imagine he will be non-receptive to the PEARS proposal.

 

[valdab]

. On that same analogy, I could cross the road and get hit by a car, there is always a % chance of this happening, at any point in time. Probably, higher than the risk of surgery or risk of an untoward event on my aorta! There is also a risk of a nuclear strike and so it goes on.... its just not nice to have this.

I was told recently that there is a 1% chance of being killed in a road accident during our lives. It seemed high to me but thinking about it, last year alone I knew of three people who died this way. btw, would you mind explaining sinus effacement? It is mentioned on my report this time and I can't seem to find out much about it.

 

[themalteser]

Sinus effacement is when the sinuses sort of lose their shape, gets a bit flattened because they are being stretched. I don't think that this is much of an issue to be honest, but it just another prove thta mine is not normal and its doing some element of damage in a way.

 

[cldlhd]

I was told my bav was in great shape-no stenosis and only trace leakage-but once in there he gave it a few stitches and a decalcifying treatment. The echo I had a few days post surgery showed no leakage.

That's an interesting point. Like you, I have been told by my cardiologists - and the reports seem to bear this out, that my valve is functioning well. Trivial regurgitation is the only thing that is mentioned. I suppose what concerns me is when I met with the surgeon three years ago (after the Echo showed a 2mm growth which was subsequently contradicted by an MRI) and we spoke about surgery, I asked if he would just repair the aorta but he told me that he would replace the valve too. I asked why this would be as according to the cardiologist and the Echo reports the valve had no stenosis and he told me that it almost certainly did. At the time it was 4.6 and I was advised to defer surgery so although I came away very confused, I haven't laboured to long over why he would say that.

I am now in the same boat - a 2mm increase which this time has been confirmed by MRI (so now at 4.8) and will doubtless be summoned to meet once more with the surgeon. If he insists on replacing the valve, I guess I am entitled to look elsewhere for another opinion. I imagine he will be non-receptive to the PEARS proposal.

If the valve is in good shape it can be repaired but that would be something that a surgeon schooled in repair would have to decide it and seems that the number of surgeons that are experts at repair are a lot thinner on the ground than those who do replacement. Maybe it's like when my car needs an alternator I just pop in a new one as it's easier than rebuilding the old one. I'm sure that's a simplification that would offend some surgeons but hey....

 

[cldlhd]

Hi cldlhd - You're right. Fear of surgery is probably the same level of fear, as living with this condition, as it all comes down to the fear of death. The physical restrictions and being on a daily irbesartan does bother me psychologically, as I'm 32 years old and feel that I'm different compared to other 32 year old (statistically speaking). If I had to decide whether its time then I'd probably go for the surgery, but here in the UK the system is different for both private patients and also for NHS funded. I need a referral, and therefore that does not empower me with a decision, so I have to go with what my cardiologist has advised, which in a way is a relief that he doesn't think I need surgery, but on the other hand.... you know....

Guess I'm caught in a cycle !

Hey I get it as I'm sure a lot out here do also. My cardiologist told me I could probably wait 5 to 10 yrs before I would need surgery so when I decided to do it I had plenty of 2nd and 3rd thoughts. Not to be morbid but death is a morbid subject so. I thought "what if I die on the table and it could have been 8 yrs until I needed it done and I cheat myself out of 8 yrs of life and 8 yrs with my family". My son was 8 when I had it done so if I waited 8 he would have been 16 and if I died on the table he would have been older and more independent. I'd have had another 8 yrs to make memories with him that he'd be more likely to retain. The technology would be better etc... but the other side of the argument won out. I had a lot of faith in the skills of the surgeon and the facility and in the case of emergency,assuming I made it to the hospital , I probably would be at a different hospital, different surgeon , conditions and so on. Also I was 45 with no other health issues so recovery would be easier and I know how I am , sooner or later I would overdue physically either at work or working at home. I can still remember pre surgery when engaging in ....um....marital relations and on those occasions when I put forth proper effort afterwards my heart would be thumping away and I'd think of myself as similar to the male praying mantis and his unfortunate outcome post coitus.

 

[ALLBETTERNOW!]

When is your surgery going to be held allbetternow ? Your locations seems like mine, the only center specialised, that performs this surgery is by helicopter, which makes me nervous aswell. I have alot of reassurance, but on the other hand, none of them have a crystal ball to hand. On that same analogy, I could cross the road and get hit by a car, there is always a % chance of this happening, at any point in time. Probably, higher than the risk of surgery or risk of an untoward event on my aorta! There is also a risk of a nuclear strike and so it goes on.... its just not nice to have this.

I had it done Back in May at Baystate medical center in Springfield. MA. Life is full of risks no wonder we get up and go on each day!! Actually my cardiologist told me I faced a greater risk driving to her office that day than the aneurysm or surgery so you are not far off.

 

[AZ Don]

If there is not enough data etc, then how do they know that my aorta is not at risk? or on the other hand, how do they know whether my aorta is just that size, its slightly enlarged than the norm and this is my norm. There is also so many differences in the way they measure the aorta, in addition, machines produces different results etc. Which all adds to the confusion factor.
In my mind, if an aorta is enlarged, valve is slightly leaking, I have an element of sinus effacement, cannot participate in high endurance sports and suffer from extreme anxiety, to the point that I cannot really live happy, then surgery must, in a way, be an answer to this and PEARS should be a no brainer.

Well there is risk but I think not enough data to reliably estimate your specific risk. I've read that beyond 4.7cm, aortic aneurysms tend to progress. That implies that less than that number and it's possible yours will never progress and you will never need surgery. I've also read that there could be millions of people with aneurysms between 4 and 5cm, and operating on all of them would likely cause issues for some of them. I never really understood the idea of comparing the risk of surgery vs. the risk of living with the aneurysm for one year .... when many people live with the aneurysm for years and still face the risk of surgery afterward. Certain I would expect the risk of the PEARS procedure would be lower, since the heart is not stopped, and so it follows that the criteria for this surgery could be more aggressive ... but that may be offset by the fact that it's still very new so that may make Dr's tend to be less aggressive with it.

I only had to live knowing I had an aneurysm for a short while before surgery, so can't really imagine what it must be like living with one for years. All I can say is that if it is well below the criteria and not progressing then I think you will have a hard time finding a Dr. to operate - any procedure. If it does progress, I've read of Dr's that are more aggressive than the conventional guidelines. Sounds like you should look for one of these, though you may still have to wait a while.

Re. anxiety. If surgical intervention now is not recommended, then perhaps you should try to find ways to deal with the anxiety. Perhaps try therapy or meditation. For unrelated reasons I'm planning to read Man's Search for Meaning. It talks about how people dealt with the anxiety of living in concentration camps, and I understand a person's outlook was highly correlated with survival. Maybe something useful there.

 

[AmyBL]

AZ Don - Man's Search for Meaning is a wonderful book. Frankl was such an inspirational person. Hope you enjoy it.

Amy

 

[pellicle]

Guys

thanks for that book recommendation. I just had a look and found this point:

Between 1942 and 1945, Frankl labored in four different camps, including Auschwitz, while his parents, brother, and pregnant wife perished. ... Frankl's theory--known as logotherapy, from the Greek word logos ("meaning")--holds that our primary drive in life is not pleasure, as Freud maintained, but the discovery and pursuit of what we personally find meaningful

which means I will have to read it myself too. Since early childhood I've been driven by the pursuit of knowledge and self betterment. Sounds like my kind of thing...

 

[ALLBETTERNOW!]

It is tough lord knows the anxiety got to me so. Was basically begging for the surgery. As my wife said, whet kind of moron signs himself for open heart surgery?? Until you've been in our shoes it's hard to appreciate. I was already on xarelto for afib so an emergency procedure would have been extremely dicey Don't operate, I die. Operate, you die....

 

[AmyBL]

ALLBETTERNOW! I agree. Wanting open-heart surgery is hard for other people to understand; people who haven't lived with what we experience. Some of my co-workers look at me with concerned and confused expressions. The other day I heard one say, "I don't know Amy; it sounds really serious, but if you are happy, I am glad."

Pellicle - I would like to learn what you think of the book (if you care to say).

 

[pellicle]

Hi

Pellicle - I would like to learn what you think of the book (if you care to say).

well I'm a slow reader (meaning I dedicate less time to it than I once did) and my eyes are no longer comfortable for longer spells of close focus (even with glasses). But I will definitely post my thoughts on it. I'll probably post that in a different forum (such as Small Talk)

 

[themalteser]

I am going to download the book you recommended AZ Don, men search for a meaning. Its sounds really good and thank you for your recommendation.

I have been to my doctor on Monday. I've talked about my thoughts and concerns. My GP told me that he also has bicuspid aortic valve, so I sort of felt so much more comfortable talking to him and my feelings about all this. He told me that he needs to treat me from mental health point of view. So he prescribed me Mitrazapine to take one at night and propronalol. He told me to take my time before having my medication as he knows that I research all over before I start taking pill. He prescribed me Mitrazapine, because he thinks that I am a little bit flat, I have thoughts about my children or wife dying with a terrible illness, on a daily basis, that really upsets me. If I relax these thoughts, then I have thoughts about me not seeing my kids when they grow up or being with my wife. When I'm on holidays I get depressesd as I see the end before I even started my holiday... etc etc... The other medication is to take every now and then, when I feel I'm on edge, heart thumping etc.

He said, as primary care, I've exhausted all available options in terms of treatment and the next way forward is for me to take a different approach to this. Meditate, Exercise and accept that this is a condition that can be fixed and that I'm in good care.

I couldn't ask for a better GP, he was great in listening to my concerns and took his time to help me. I think its now up to me to make something out of this, maybe I need a hobby, write a book, something.

 

[cldlhd]

Glad to hear you seem to be working towards managing the situation and the stress. I'm usually not the type to throw out sayings that may be considered trite but maybe counting your blessings and looking at the bright side on a regular basis would help. The fact that you have a Dr that takes the time to listen, not everybody has that, you have your family there to support you and it is curable.
If it makes you feel any better I think a lot of people will sometimes engage in pessimistic 'what if ' scenarios about the future. I don't get really negative but I think a lot but I think a lot of parents think about their kids moving away when they get older . My son just turned 9 and I often find myself wishing I could slow down time but you cant so you try to make the most of what you have. We're both off for Veterans Day over here in the States so we're going to go out to lunch, do some new car shopping and maybe a little laser tag after. He loves that stuff, it's like 'Lord of the Flies' and I have to admit I find it fun as well.

 

[themalteser]

Thank you very much cldlhd, I now need to trust my GP and take this medication as I am too obsessed reading the side effects part!!..... What you said is very true and I;m exactly the same finding myself wishing to turn back time and spend more time with kids. I really appreciate your kind comments. What you're doing today sounds fun, I really like the idea of actually living the present rather than constantly worried about the future......