New Here and Surgery timing ?

[bbb]

Hello Everyone,

I am new to the list and would love to hear some advice from people who have gone through the surgery timing decision. I have BAV (mild stenosis) and an aortic aneurysm, now measuring 5.3cm. I have been sending my records to Cleveland Clinic, Dr. Svennson, to review. In 2005 my CT scan showed 5.1 cm and the latest one last month was read by Dr. Svennson himself to be 5.3 cm. Dr Svennson thinks it has grown and is advising surgery. I asked whether I could wait until it is 5.5 cm for surgery and he would not say one way or the other.

Then I went to my cardiologist here, who seems to think I am borderline needing surgery, and he has put me on a low dose of beta blockers, although my blood pressure is 110 over 80, not high. He suggested another echo and sending the echo and past two CT scans to Cleveland Clinic for further review by the actual radiology team. Then I would see him again in one month and also get the opinion of the local heart surgeon here.

I?m not sure if I?m hanging onto a thread of denial, wanting to get the definitive answer on whether the aneurysm is actually growing, as there seems to be an idea that there is a margin of error in the CT scans and the growth might be minimal. I also am thinking about whether the winter (cold, dark, not as easy to walk outside) would not be as ideal as the spring for the surgery and recovery. Not to mention I have two small children and have to work out all the logistics.

I feel a little confused about whether to just trust the opinion of the top surgeon at Cleveland Clinic, or to follow all the additional steps until I am totally convinced it is time.

Anyway, it is all overwhelming to say the least and any advice would be greatly appreciated.

Thanks, Betsy

 

[WayneGM]

Welcome to the VR community. Sorry for the circumstances, but glad you found us. It is overwhelming, but there's lots of information, advice, support, and inspiration here.

I had my surgery at the end of February and it was tough walking outside in March and early April. It was pretty boring walking around the house. If you can time it from a Spring recovery, it may be more comfortable. It doesn't sound like your Card is suggesting a long delay to have the additional review.

That said, how do you feel? If you're feeling alright then maybe you can wait and do the extra diligence. If you are feeling poorly, then maybe you need to press the issue with your Card, or get a third opinion right away to break the impass.

Best wishes and good luck.

 

[bbb]

thanks

thanks

Thanks, Wayne. I can tell this is a great place to be. I feel 100% fine, have never had a symptom. And thanks for the great idea of a third opinion. I have a family connection to a retired heart surgeon and will give him a call soon!

Betsy

 

[Marguerite53]

Hello, Betsy! Thank you for joining our wonderful community.

These are very tough decisions. I am 53 and had my AVR 18 months ago. My 3 children are in their 20's. I think, had I been younger, it would have been nearly impossible for me to accept that surgery of this magnitude was something I needed. It is a daunting thing to have hanging over your head.

I did not have an aortic aneurism. I do not know about the numbers, but your 5.1 seems high to me. I know others here with aneurism experience will chime in on that number.

What I think is important for you to realize is that waiting may not really accomplish anything. An internationally reknowned surgeon has recommended surgery quite soon. You have to hear him. He wants your surgery and recovery to be a success. He is choosing to time this so that you have the optimum chance for perfect success. Why would you second guess him???

Of course wintertime is not fun for walking. But it certainly can be done indoors or in a mall or at cardiac rehab. And by timing it the way your surgeon advises, you will have caught the one true threat you face now.....the threat of that aneurism bursting which would have dire consequences. You are lucky that your stenosis is not bad....that your heart has probably not been working too terribly hard to overcome the defects. Many of us have heart damage because for one reason or another the heart had to work too hard for too long to compensate.

I know this is very, very difficult and frightening. We are here to give you all kinds of support and ideas as you journey through this time. Please know that this is a totally manageable event. We will help you learn how to manage it all.

Hang in there.

Marguerite

 

[ALCapshaw2]

The USUAL recommendation for surgery for an aneurism is 5.0 cm. Our moderator, Ross, is one of a Very Few Survivors of a BURST Aneurism. His burst at 4.7 cm.

WHY are you gambling with your life?

YES, OHS is MAJOR surgery, BUT it has a High Rate of Success, especially for first timers under age 60.

WAITING only means allowing things to get WORSE before undergoing Life Saving Surgery. You NEED surgery to FIX your aneurism. I see NO BENEFIT to postponing the inevitable and High Risk in not proceeding.

My recommendation is to Get On With It and GET IT FIXED.

Sorry for being so blunt.

'AL Capshaw'

 

[Ross]

At 5.3, your a walking time bomb. There is no question about timing now, it's a matter of it getting done before it kills you. YES IT'S THAT SERIOUS.

I make it sound urgent because it is. This is nothing to fool with. Mine didn't make it to 5.0 much less 5.3. As far as the medical science goes, I should not be alive to warn you!

 

[briansmom]

I have no idea what size my son's aneurysm was before it dissected, but we almost lost him and his life and health will never be normal. I see so many people on this forum that have aneurysm and valve repairs and they recover rapidly and go on to live normal lives with normal life expectancies. If your aneurysm dissects you will most likely die; if it ruptures you will die. OHS is almost routine now. If you have gotten an opinion from Cleveland, I think that you should respect that opinion. That doesn't mean that you shouldn't get a 3rd opinion, but you are going to have to have this surgery sometime relatively soon. Why not just get it over with so you can move on.

Just my humble, paranoid opinion.

 

[Susan BAV]

Hi Betsy -

Welcome to the site; glad you found it. One thing that jumped out to me about your post was the size of your aneurysm, especially because you're a woman. Several male members here have had large aneurysms but I don't think I've read of many female members having aneurysms of that size. You have been told to not lift heavy things for the time being, haven't you?

May I also mention that some members post their probably well-intentioned opinions a little strongly, but please don't be scared off by that. Some who have posted here have nearly died or nearly lost loved ones due to dissected aneurysms and don't want anyone else to go through all of that and thus the passionate posts.

Another thing that I found interesting was that your cardiologist was recommending surgery. Most of us here have found that cardios tend to want to just continue treating bad valves and related issues whereas surgeons usually tend to want to get the problem corrected before there is a lot of residual and/or permanent damage.

You also may want to research more info on www.bicuspidfoundation.com

Please take care and post again.

 

[aussigal]

Hi Betsy and Welcome to the family...

I remember how much of a shock the whole idea of OHS seems at first...almost all of us get over this and never look back.

I wouldnt wait around too long with a 5.3 aneurysm...possibly just enough to get my head around it and then have it fixed ASAP.

I highly recommend a read of the bicuspidfoundation website which is written clearly and not in "Doctor-speak". I found it a great help in making my decision to go staright ahead and get fixed, (as well as the folk here who advised the same). My "annie" meaasured 4.8 but my surgeon says it was 5.0 when he got in there....I was very anxious until I had it fixed. Just keep that blood pressure well controlled and strive towards getting used to the fact that you need OHS soon. Its nowhere near as scary or painful as you think it may be.

We are here to help support you...anytime day or night...

 

[Mary]

The USUAL recommendation for surgery for an aneurism is 5.0 cm. Our moderator, Ross, is one a a Very Few Survivors of a BURST Aneurism. His burst at 4.7 cm.

WHY are you gambling with your life?

YES, OHS is MAJOR surgery, BUT it has a High Rate of Success, especially for first timers under age 60.

WAITING only means allowing things to get WORSE before undergoing Life Saving Surgery. You NEED surgery to FIX your aneurism. I see NO BENEFIT to postponing the inevitable and High Risk in not proceeding.

My recommendation is to Get On With It and GET IT FIXED.

Sorry for being so blunt.

'AL Capshaw'

I'm agreeing with Al's blunt advice. You are being told by one of the top surgeons in the country, that after personally reading your echo, his opinion is you need to have the surgery now. I don't think this is the time to weigh your surgery timing options on factors like weather or child care arrangements. Too long a wait might result in your never needing to consider those factors again.

 

[Cooker]

What I think is important for you to realize is that waiting may not really accomplish anything. An internationally reknowned surgeon has recommended surgery quite soon. You have to hear him. He wants your surgery and recovery to be a success. He is choosing to time this so that you have the optimum chance for perfect success. Why would you second guess him???


Marguerite

Betsy,
Welcome to VR.com. This is the place to be for information and support.

Well said Marguerite. You are getting the best advise from Cleveland. The time for surgery would seem to be now. It is tough to accept but as Ross said, you are a time bomb. Your children need you health and here. You are in great hands. It is hard to step through that door but it is not near as bad as you may think.

I wish you well..........Tom

 

[thenewmarket]

My husband is two weeks post surgery for a situation very similar to yours. His aneurysm was 5.1, he had a bicuspid aortic valve, and he had ABSOLUTELY no symptoms. The aneurysm was found through a routine chest x-ray. I understand your reluctance to have major surgery when you feel "great". The recommendation by three cardios/surgeons where we live was wait until the aneurysm reaches 5.5 or LARGER. Well, that might be easy to say with a straight face if the aneurysm isn't in your chest. We got a second opinion at Cleveland Clinic with Dr. Svensson and his recommendation was to go ahead with surgery. You better believe we followed his advice, and followed it quickly! We are so totally blessed that this aneurysm was found, and we are blessed that we got to Cleveland Clinic.

We are now aneurysm free, and his bicuspid aortic valve was repaired by Dr. Svensson. We fully expected to have a valve replacement but once surgery began, he assessed that my husband had enough tissue to do the repair. We went to the best and trusted him to do the best for us........

Post surgery is not a piece of cake but I cannot begin to tell you how liberating it is for my husband to NOT think about a 5.1 aneurysm lurking in his chest. It is also liberating for his wife to NOT think about a 5.1 aneurysm in his chest!

Be diligent in your quest to seek resolution for your situation.

 

[bvdr]

Welcome Betsy! Now is the time for surgery unless there is some other reason that any type of surgery poses an extraordinary risk for you. No one can fix it but a surgeon. Why walk around with that cloud hanging over your head? Get the thing done!

 

[MikeHeim]

The people above have already said it best. The only thing I want to add is that there is no GOOD time for surgery. At no point in your life will you have several months just open up without any obligations. When you get to Spring, you may not want to do it because you want to not have to deal with recovery as the weather is getting nice. With a 5.3 aneurysm that is growing you may not make it until Spring anyway. It really is best to get it done and in the rear-view mirror as quickly as possible and know that the time bomb in your chest is no longer counting down.

 

[sandyz]

Hi Betsy,
In October 2006 my husband Larry was diagnosed with an aortic anuerysm measuring 5.4cm & a leaking aortic valve. He had no symptoms & felt the tests were misread. We went for a 2nd opinion to Penn Presbyterian Hospital in Philadelphia & they confirmed the diagnosis. I asked if postponing the surgery for a few months would endanger his life.The surgeon felt that as long as there was no progression of the anuerysm it would be OK. For various reasons (one of which was recovery in nicer weather), surgery was done in July of 2007. We were lucky. I realize we may have been playing Russian Roulette, but it is a personal decision between you & the doctor that you have entrusted with your life. It has been a rough 3 months, but I am happy to say Larry is doing great.. He returned to work this week, is playing golf & life is good. He feels that the nice weather helped him to recover(who knows)
Whatever you decide, be assured that the wonderful people who contribute to this forum will help you through this journey. They certainly helped me & I cannot thank them enough. Good Luck to you & your family.
SandyZ

 

[Bina]

Hello Betsy and welcome to the group.
An aneurysm of 5.3 is to be taken very seriously. Please don't wait too long.

 

[ALCapshaw2]

Betsy,

One point that those of us who have responded to your questions may not have clarified is that while OHS is Major Surgery, it is NOT nearly as bad as any of us ever thought it would be.

Pain is Well Managed with the Vast Majority of us reporting only some 'discomfort'. Recovery varies with individuals, but for First Time Surgery with Younger Patients in otherwise Good Health, recovery usually progresses relatively quickly and smoothly.

Another thing you need to understand is that there are NO symptoms from an aneurism UNTIL it Ruptures. Then there is Intense Pain and you are at Great Risk of Not Surviving unless you can get into Emergency Surgery very quickly. You DO NOT want to go that route. Ask Ross about his experience!

YES, it takes a Leap of Faith to jump into Open Heart Surgery when you are feeling fine. You have to trust the numbers, and the numbers for a Large Aneurism are NOT Good. Remember, Aneurisms NEVER go away without surgery. (For your peace of mind, feel free to Verify with your Doctor/s).

After you weigh the Benefits (a Long useful lifetime after surgery) versus the Risks (Death due to a Ruptured Aneurism) I hope you will decide to proceed with this Life Saving Surgery.

'AL Capshaw'

 

[AJ Golf]

I can only echo what has already been said here. Though I had known for years I would need surgery someday, it never really hit me until a month prior, which is when we scheduled. I had no symptoms at all, no aneurysm, but a BAV with what was now severe regurge. My cardio and surgeon both said it best: "You may already have permanent heart damage due to the enlarged left chamber, but we won't know until we get in there, fix it, and check it again in about 3 months."

I won't have my echo until December, and I pray every day that I didn't do permanent damage. Truth be told, I should have had the surgery last year, but blew it off. It took me a year to wake up and realize that my family needs me and I want to stick around a while longer. Though the normal echo can only show so much, I had a TEE and that put the icing on the cake!

I'm now 6 weeks post-op, been back to work for 3 weeks, traveled by plane to D.C. and Phoenix, and feel GREAT

I didn't know how bad I felt, really!

Take care and our thoughts and prayers are with you.

-AJ

 

[bbb]

Thank you everyone, for all the experienced and dose of realism. I think I have let go of the thread I was hanging onto of numbers and CT scans and margins of error. I have called Cleveland Clinic and told them to go ahead with my insurance authorization, so I can then set up some appointments. They are offering that I either come out for a 1 day evaluation (echo and whatever other tests Svennson rec'ds) and a consult with him and then come back again for surgery. Or, that I just schedule the outpatient testing followed by the surgery. ??????

One day at a time, I'm still digesting this all. It has been very helpful to hear all the positive stories and inspiration and I will continue to come here to this great circle of support.

Betsy

 

[Ross]

Betsy I'm sorry if I scared you, but this is one time you need to be scared. I do not ever want to see what happened to me, happen to anyone else. For me, it's personal.