Is Risk of Surgery Greater than Risk of Aneurysm Rupture?

[harleygirl528]

Okay, my surgery is in 20 days and I will be leaving for California in just two weeks! I am so nervous and I have been spending a lot of time perusing the old posts for information on aneurysms and the criteria for surgery. There is a ton of information out there and I am a little conflicted. My aneurysm is somewhere between 4.8 - 5.0 cm depending on which test you are looking at, CT or MRI. At any rate, the information that I have read says that there is only a 2% risk of dissection with an aneurysm under 5 cm but the risk of surgery is far greater than that? Am I better off just waiting and having surgery after the risk of dissection or rupture of the aneurysm outweighs the risk of the surgery?

I also read that aneurysms that are stable sometimes only grow 0.1 cm per year…if mine is stable at 4.8 cm and my valve is sufficient,(which it is...I only have mild regurgitation) are we rushing into surgery a bit? Could it be possible that I could postpost this for years perhaps without any real danger? Would it be wiser to get a good 64 slice CT scan and a good measurement and just wait a few months and see if there is any growth? Particularly since I am now controlling my bp so well?

I know I am probably just getting really nervous since surgery is just around the corner but I have seen that there are many others on this site that have aneurysms and are in the "waiting room" for literally years and don't seem to have any issues of the anuerysm growing or causing problems, particularly with the blood pressure control. Am I jumping the gun and rushing into surgery? I don't know what the particular statistics are but I know that the risk or surgery is more than 2%.

Please help reassure me...I'm getting so nervous. I sometimes wish that I hadn't done quite so much research into the actual procedure. I think just knowing about the total circulatory arrest, and the fact that I will be laying there literally "dead" for that time period just freaks me out. I guess I don't really have a choice and I am just prolonging the inevitable but I would like to prolong my life as long as possible and if the odds are in my favor to just live with the aneurysm versus the risk of surgery, maybe I should consider that?

Help me decipher this please.....I am confused and nervous!!

Thanks everyone!!

 

[briansmom]

No, No, and No,
If your aneurysm ruptures you will die. If it dissects there is a 50% chance that you will die. If it dissects and you don't die you will probably have a lifetime of problems.

On the other hand, you can go to a wonderful hospital BEFORE you have irreparable heart problems and have a wonderful doctor perform a quite common surgery, recover and go on to live a normal life.

This is a no-brainer decision. You have a bad case of cold feet which is quite reasonable at this stage. The anticipation is worse than the surgery.

Please hang in there. IMHO you have made the right decision.

 

[Phyllis]

Lorie, you have spent a lot of time and effort researching your medical condition and getting the right surgeon and the right place to have surgery- this is the way it should be. You will be fine and this is the time to "just do it"!

 

[MikeHeim]

I don't know what the particular statistics are but I know that the risk or surgery is more than 2%.

Hopefully someone will come along with a published study, but I can tell you for certain that mortality risk for first-time surgeries is much lower than 2%. I was quoted less than 1% by my surgeon as an aggregate number, but he also said that he had never lost a first-time valve patient and had done over 700 mitral surgeries alone. Please keep in mind that almost all published mortality rates (that I have seen, at least) include ALL patients, and the vast majority of those that have issues are not the young, healthy patients, but rather those that are older and have other complicating factors (such as diabetes).

I think you know that getting fixed is the right thing to do. It is certainly OK to be nervous and absolutely natural to be. Over the next couple weeks you will go through periods where you will feel very nervous and scared and other periods where you will be comfortable with the idea and eager to get it over with. All of us have been through all of these emotions and can empathize with how you feel. Please try to look on the bright side - 20 days from now you will be fixed and on the road to recovery!

 

[geebee]

Lorie,

Hon, you are just freaking out and looking for any reason to back out - VERY normal. Please do not let this change your mind. You are in control and you will not be if your aneurysm ruptures or dissects. In fact, you might not even be alive to make decisions.

You know it's time to have this fixed. Just focus on that and everything will fall into place.

 

[tobagotwo]

I agree with Mike. The surgical risk for you is likely about 1% or less. The material they give you to read is based on a mixed bag of patients, with an average valve recipient in his/her late 60's, who would statistically often be carrying other ills as well as age.

You also have no way of knowing how recent the information is. The statistics become more positive with each passing year. A twenty-year old study is certainly recent, but is still not accurate to a current surgical prospect's risk level.

Best wishes,

 

[bbb]

Lorie,
I definitely had the same questions just weeks before my surgery. I had been waiting and watching for three years before my surgery, actually I knew about the 4.8cm anuerysm from 1999.

In any case, when the surgeon actually got in there, 4 weeks ago!!!, he said the aneurysm was more fragile and longer than he thought. It also measured larger, 5.5cm in Nov. than it did in Sept. at 5.3 cm. (different equipment??). Also, it the bicuspid valve was much more calcified than originally thought.

These surgeries seem to fall into place at the right time, and my surgeon said, "It's a good thing you got here when you did." Also, I got the 1-2% risk of surgery number, too.

So, the moral of my story is...the time is right. Try to find peace and go forward and you won't look back. Also, at some point, I had to stop thinking about the details (heart/lung machine, etc.) and just stop researching anymore and know it was time to relax and leave it up to the experts.

Good luck, Lorie, you will do just fine. Concentrate on your inner peace.

All the best,

Betsy

 

[thenewmarket]

My husband and I were just discussing this issue over dinner tonight. He is three months out from surgery, and today, he had an appointment with the internist who found his aneurysm. When found, his aneurysm was 5.1 and three respected cardios/surgeons MISSED his bicuspid aortic valve. They all kept telling us to wait, wait, wait on surgery. Needless to say, we got to Cleveland Clinic quickly where they advised us to proceed with surgery. When looking at statistics ,you have been told you only have a 2% chance of dissection within the year. SOMEONE has to be that 2% statistic each year for that statistic to exist. My husband and I were determined that HE wasn't going to be the person who kept that 2% number in existence. We wanted to be in the stat category of being aneurysm free......and LIVING!

I know all of this has happened quickly for you as it did for us but trust me, you will be a new person when you don't have to think about your aneurysm on a daily basis. Don't do further damage to your heart by waiting!

 

[harleygirl528]

Thanks for all your reassurance everyone! Of course I do know it is the time to deal with it, in a controlled environment with the surgeon and hospital of my choice. I guess my concern was I was reading through old posts and have noticed for quite some time a lot of folks who have anuerysms and "wait" to operate. Even Betsy says she knew about her 4.8 cm aneurysm since 1999....that's 8 years before she chose to operate. So my concern is that since I have a fairly high functioning valve (by echo it is reported to be only "mild" regurgitation and in fact Dr. Raissi feels that my native valve is most likely salvageable, am I one of those people who could go years before actually needing surgery?

I guess before I even started this thread I knew the response I would get....just wondering if any of you in the waiting room whose aneurysms are also just shy of 5.0 cm would like to comment. What makes you decide to continue to "watch and wait" even though surgical outcomes are so positive now and probably statistically outweight the chances or dissection or rupture?

By the way, since my aneurysm involves part of the "arch" and my surgeon will be using complete circulatory arrest, I believe the mortality statistics are somewhat higher that just a valve repalcement....not sure though.

Bottom line, I am having extremely cold feet for one and also just wondering what is the criteria that distinguishes those of us that are under 5.0 cm that are told to have surgery and those that are told to "watch and wait." Is it just simply a matter of procedure depending on your particular surgeon, personal preference or what?

I am really concerned about the recovery period as I have read on another thread to expect to have help for THREE weeks? That seems like such a long time to have someone doing your laundry, cleaning your house, cooking for your, driving you everywhere, etc. Is there anyone out there who was able to function independently before this timeframe? I know everyone is different and recovers differently but the prospect of being weak and totally dependent for a month (when you count the time in hospital) just is so dismal to me......

I know....dying is more dismal and I will deal with it. Just wanting to hear some super positive stories of recovery so that I can start to visualize my own positive recovery.

Betsy, I know you are fairly recently home after surgery...how is your day to day recovery coming along?
Thanks everyone for continuing to help me through this process....I don't know what I would do without you all!!

 

[ALCapshaw2]

Lorie,

I found the responses to your question COMPELLING in the affirmative to procede with your well researched plan.

You keep mentioning the 'magic' 5.0 cm.
You may want to ask someone who knows, WHERE did that number come from?

I would want to know is that number the same for Men and Women?
Is that number the same for Large and Small Men
and Large and Small Women?

MY guess is that it is an AVERAGE and NOT a Hard and Fast Number.
SOME won't 'blow' until over 5.0 and SOME 'blew' at LESS than 5.0
Our own Ross is one whose aneurism BLEW at 4.8 cm.

And don't forget those (we've had several reports from our own members) whose aneurisms were Larger than the pre-surgery measurements indicated.

You have a GOOD PLAN, an EXCELLENT SURGEON, and a GREAT HOSPITAL all lined up waiting for you to Show Up and GET FIXED.

DO IT !

'AL Capshaw'

 

[kfay]

Lorie, I can so relate to how you are feeling. Even though I have a different valve involved and different surgical needs, just 2 hours ago I said to my husband "why am I doing this now? Why don't we just wait? I feel perfectly fine." He then reminded me that I have now had the top surgeon's for Ebstein's from L.A. to Birmingham to the Mayo Clinic all look at my information and they have all made the same recommendation. It's like you just want your life to go on the way it has been and not have to deal with this now. We just told our kids last night that I would be having surgery for my heart next year and after a quick why from our daughter, they both said ok and that was that.

Go on and follow through with your plans. You'll be glad when it is over and you don't have to agonize over it any more. Best of luck to you.

Kim

 

[bbb]

Hi Lorie,

First of all, I will tell you I had many hours of wondering if it was the time to have surgery and then serious cold feet before the surgery. I also had absolutely no symptoms and felt fine my whole life.

My decision was sealed by the fact that I decided to trust my surgeon 100% and go with whatever he said. I poured over the numbers, statistics, percentages and had a good arguement in my mind for waiting even further past 5.3 cm. When I was 5.1 cm, Dr. Svennson said the time was not right yet. but I am sure it was very specific to me, all my tests and reports he reviewed. Then at 5.3cm, again combined with all my reports and tests, he said it was time. Since I had chosen him in 2005, and had been sending him my tests for review, this was how I made my ultimate decision to go when he said the time was right. All the fine people at VR.com were helpful in my decision, too, to realize that trusting in your surgeon is paramount.

So, maybe this is something to discuss with the surgeon you have chosen. This might put your mind at ease, because ultimately, you have to decide with your surgeon and feel good about it.

Also, my recovery has been going really well. I did plan to have a lot of help the first three weeks. I had lots of friends who brought meals for the first two weeks and this helpled. My kids are 7 and 8, so I had lots of playdates set up and support. This is the time to get support from friends, family, whoever you can. You will be amazed how quickly the time goes.

I am now week 4 after surgery and went out for lunch, browsed at a bookstore, and then did lots of resting. I really am starting to feel like myself again.

My advice would be to talk with the surgeon if you need to cement the surgery necessity and date, get all the support you can lined up for your recovery, think positive about the recovery and start to detach from all the worries you have. I went into a kind of hibernation for some days before the surgery date, sticking close to home, listening to relaxing music, taking walks in nature and not doing any more research on the specifics of surgery (my family banned me from the computer).

Again, I know you will be fine and make it through to the other side. It is very normal to get cold feet and worry alot now, just try to bend your knees and relax into it all and before you know it you will be on the other side.


All the best, Betsy

 

[Bina]

Lorie, you are just getting overly nervous and that is to be expected.
I stalled my surgery for 2 years (aortic stenosis) and in doing that I was damaging my heart more and more. You would be wise to get it done while you still have your choices available. Find yourself a good book and a glass of wine, curl up, and find peace with your decisions.

 

[ALCapshaw2]

My experience with recovery was that having help (and an observer) the first week was almost a necessity and quite reassuring.

Having help the second week was 'nice' but probably not absolutely necessary, especially if someone was available by telephone if needed.

By the Third week, I was ready for some alone time and could take care of myself during the day. My S.O. took care of preparing meals.

And I'm a lot older than you are...

'AL Capshaw'

 

[briansmom]

I really do feel for you. I know how hard it is - the devil you know versus the unknown. My son's first surgery was an emergency so I didn't have time to think about it, but his 2nd surgery was planned and was the first of its kind in the US. I was scared *!#%less.

You have a good plan. The fact that your arch is involved means that you need to get this fixed and move on with you life. You are already showing symptoms. You will feel so much better when it's over.

Keep posting and getting support. I know I could not have made it without these wonderful people. We look forward to seeing you on the other side of the mountain!!!

 

[Debbie]

surgery

surgery

Lorie, you can't back out now, if you do I'll tell Ross!!! Debbie

 

[harleygirl528]

I know you guys are absolutely right....and I agree wholeheartedly...I really didn't anticipate feeling this way because at first I was just so relieved to have found the right surgeon and have a date but as it gets closer these thoughts and fears just keep creeping in. I really do appreciate the reassurance and I feel better already....just knowing that how I am feeling is normal and that most of you felt the same way...well it just helps somehow.
Debbie: You are right...Ross probably hasn't read this thread yet of I would have heard the "wrath of Ross" by now...but he is right I know and I guess I just needed to hear it...again! Besides, you are going to come see me, right?
briansmom: You are right...it is scary but I just thank God every day it is me and not my child...you are the brave one and what I am going through can't even compare...thanks for your words of encouragement.
Al: Sounds like by week 3 you are much more independent. My mother, who is a total control freak, is coming to stay and I have to say this one time I think I will happily give up the reins...she loves to cook, clean, and run the show so she will be in her element....but when it is time for her to leave I need to let her know. I am a rather independent person who values my privacy a great deal so I am sure I will be ready.
Bina: Thanks for sharing your experience. It is nice to know that others have felt the same nervousness and "second thoughts" but you are right...no sense in risking further damage to my heart or death...just get on with it.
Rachel: As always, thanks for your never ending support and information....the references that you provide are invaluable and I always take the time to review them....thanks also for your persistence with Dr. Raissi...if nothing else I am confident that I have a wonderful and highly skilled aortic specialist!
Betsy: You are so right...I need to just stay off the computer (except this site, of course) and put my trust in God and my surgeon and just relax, meditate, read, take walks, and find some peace. Thanks so much for sharing your story and I take inspiration from your words....keep them coming!
MikeHeim: The reason that I believed that the risk of surgery was greater than 2% was because of the aneurysm extending into the arch and the circulatory arrest but maybe I was mistaken....if someone has stats on this type of procedure as 1st surgery let me know.

And to all the others who took the time to comment and to reassure....thanks so much. I really needed to hear from all of you!!

 

[Bionic Man]

Mine was 4.8 by MRI but really 5.4 when they cut me open

Mine was 4.8 by MRI but really 5.4 when they cut me open

My doc was upset because my MRI showed 4.8 but it wasn't correct. During surgery they measured my aorta it was really well over 5 and was disecting (starting to pull the outer layer away from the inner layer) My doc said if I'd waited another few days I would have likely died.

So I guess the cautionary part of all that is that the scans can be off by a little and don't always show what's happening between the layers of your aorta.

Survival rate for surgery is very high 98% if I'm not mistaken and that includes serious smokers and people with other major complications. Survival rates of aorta dissections or ruptures I understand depends entirely on how fast you can get to the nearest heart-certified surgical OR.

For me, surgery greatly improved my health. I had no idea how sick I was until I was fixed. I was dying but just thought I was tired and getting old... not realizing that it was an unnatural tiredness and that it was affecting all aspects of my quality of life.

I was TERRIFIED of surgery. I practically have a phobia for all things medical but when faced with the "day" I did a lot of soul searching and somehow found the strength to want to have a miraculous surgery and recovery. Thankfully that was the case, and with the help of a really nasty-tough nurse-from-hell who yelled at me in the ICU for feeling sorry for myself I think I sort of overcame my natural inclination to be a scaredy-cat and took my lumps with a little more courage than normal.
<< AND IF I CAN DO IT... ANYONE CAN!!!!>>

For me, I'd rather pick my surgeon (world-class hopefully), pick my time to have surgery and do it on my terms instead of taking the chance that some med-student or hack will be in the OR the day they wheel me in for a repair.

Just food for thought... not trying to tell you what to do.

Good luck and hope to hear of you being healty and happy one way or another.

BTW: I had a upper and lower aorta replacement in other words my whole arch had to be replaced. They do it all the time and for those skilled at it it's a piece of cake. I had to go on the heart-lung machine and haven't lost mental accuity.

Sincerely,
David Cross

 

[Ross]

There is nothing left for me to say other then you do not want to find out what a rupture is. Just don't go there.

Basically it's like this, do nothing and eventually you'll die. Probably alot sooner then later. Certainly not you given time. Roll the dice and move your mice. Stay on this earth to fulfull your alloted time.

Sorry, I just care, that's all.

 

[Debbie]

Surgery

Surgery

Hi again Lorie, remember I'll come on over to visit while your here and I'm sure I will find some other to come with me. Debbie