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Phoenix

This is my first time logging in. Not a place I ever wanted to find but really glad you are all here. I am 51 and have a St. Judes aortic that has been perfect since 1997. I had a bicuspid valve. About two weeks ago I had a sudden numbing on the left side of my face for about 10-15 mins. It would have been so easy to ignore it. Knowing it may have been a TIA I had a brain cat scan, and ultra sounds of my heart and carotid artery.A stroke had been ruled out but they did find a 4.4 aneurysm in the ascending aorta. Not too bad but worisome enough to do a further cat scan of my aorta. I did not hear back for three days and as my father who was a surgen said . "bad news travels fast". so I thought I was OK. Two days ago at 8 in the morning I was called by my doctor to inform me that according to the cat scan I had a fairly significant aneurysm of 5.1X5.3. You all know what I am talking about. Suddenly...life takes a sharp right turn. All things past and present will now be marked by that moment. Time..stops. As is my nature and how I got through the last surgery was by being proactive. And most importantly through sarcasm, humor, and old friends. The most valuable, potent medicines. I know. Well, A really cold beer does not hurt either. I feel lucky t that I am in good hands. My cardiologist is DR. Charles Blatt of the Lown group in Brookline Mass. I have an appointment with a DR. Ralph Bolman, cheif of surgery at Brigham and women who's specialty is aneurysms of the ascending aorta . He has published extensivly. and seems to be "the guy" I had my valve put in at the Brigham and had a very pleasant surgery. No discomfort, almost like a mini vacation . Great food, awesome after surgery dance parties with the Nurses. I am really looking forward to doing it all again.......
I feel like I have been hit in the face. My heart surgery was like a rebirth. You go through the fires of hell and SURVIVE!. I was Done. I had made it!!
This one has got me down. I know that after a few days I will rebound, I always do. and start getting all my ducks in a row for the pssibilty of shutting my life down again. And I will find strength in caring for all the people that will be caring for me. It is hard on the people around us. Some times I think it is even harder on them. I hope that in this forum I can offer some hope to the folks that are going through their first and hopefully last surgery. And get some help and advice from those of you who know so much more. Things have changed since my valve replacement. I have had a blast in the past 12 years. traveled all over the world. been from the Atacama desert in chile, Patagonia to the glaciers of green land. Way out there down the amazon with my bag of medicines and a roll of ducktape always with me in case I sprung a leak. calling in my INR levels over skype from the Andes mountians to my cardiologist. If you are worried about life on cumadin let me tell you that in my point of view it is a minor inconvenience compared to dying. You just have to adjust, always have a backup. I asked my cardioligist once to tell me how much asprin I should take if I am seperated from medications in another country way out with no pharmacy.Or what dose of commercial Rat poison ( cumadin)? The point is that all of this is worth it. Sorry, I have gone off a little. I want to wish all of you good luck strenth and long ,long lives . That being said. How ever good I think my doctors are or yours are .This is an imperfect world, Heart surgery is continually developing and everyone makes mistakes. So I intend to stay on top of everything that is about to happen to me. Does any one have any experiance with Dr Bolman, and or what your thoughts are on if they will move quickly on aneurysm of my size.
and Oh yea. My name is Paul. Some else already had it on this forum and I like the idea of being the pheonix rising from the ashes, but my name is Paul.
In Solidarity with you all.
 
Welcome Paul - great choice of user name.

I would think with your size aneurysm, surgery will be forthcoming. You probably do not want to wait very long. Sounds like there is something that is causing the TIA symptoms also - are they going to continue to try and figure that out?

In any case, having been through this before, you know what to expect and that can be good especially if it was not too bad for you.

This is just a road block to get past. Then you can continue your world travels which sound wonderful.
 
I am very concerned about the mild stroke you may have had. My husband was a BAV whose mechanical also worked perfectly for 11 years when his 5.2 aneurysm was found.

The mechanical looked good at surgery, so was left when the aneurysm was replaced. He had never had any indication of a stroke or problem with coumadin, ever.

Four years later, he had a massive right brain stroke - strands of tissue had formed on the mechanical. They are only detected with a TEE, and difficult to detect even with this test.

Another male BAV who had his mechanical about 10 years, had a slight stroke about 12 hours after his aneurysm surgery. The mechanical was left in place, as like my husband it was working well - the stroke was never explained. Much later TEE found strands that were the likely the cause of his stroke - he had to have yet another surgery to get the mechanical out. Fortunately he did not have any further strokes, but it is a risky situation.

Please be sure they take a very hard look at everything, especially that valve.
I know of 5 people, the first was my husband, who have had these strands cause strokes of varying degrees. They can be hard to see on TEE - reader has to know what they are looking for.

Of the 5, my husband's stroke was the most severe. One of the others died following the surgery to get the valve out - it was very high risk in his case, but they were trying to save him from further brain injury. The other 3 had no further complications once the valve was replaced.

Expert surgical hands can deal with the aneurysm, but you do not want to take any chances with injury to your brain. It is too easy to blame a slight stroke on INR out of range - but that was not the case with the 5 people I am speaking about.

I will attach a paper here that discusses all the possible complications with prosthetic valves and the use of TEE to find them. It includes strands. In our experience, this is still a relatively unappreciated problem because the strands are very very difficult to detect. Pannus formation seems to be more widely recognized as a problem with prosthetic valves. (My husband had developed both sometime between 2001 and 2005. In 2005, his mechanical had been in 15.5 years at the time of his stroke.)

http://bicuspidfoundation.com/Evaluation_of_Prosthetic_Heart_Valves_Van_den_Brink.pdf

You can come through aortic aneurysm surgery beautifully - it was my husband's second surgery and he left the hospital on the third post-op morning - it was an ideal surgery and recovery.

Just do everything to understand why you might be at risk for stroke, and don't stop until there are answers. Explore every angle, including the prosthetic valve. Brain injury is a place I do not want anyone to go.

Best wishes,
Arlyss
 
Welcome aboard. Your being dealt a crappy hand, though most of us are and fully understand where your coming from. No body should have to go through this more then once. NO BODY. Unfortunately, we aren't the masters in this decision. Get it taken care of before she blows.
 
thanks Gina, I am so gratefull to be able to talk with prople who know what I am talking about. My best wishes to you and yours
 
Ross, I love your photo. Is that you? I had the honor of photographing Abby Hoffman many times.Your head shot reminds me of him. Same smile.
 
Arlyss, Thank you Thank you Thank you!!! Something happened to me and they and I do not know what.I am seeing a nurologist on monday to rule out a pinched nerve etc. I do have jaw problems, but the information on the "strands is intreaging and very valuble. This is how we all will learn. We are the ginny pigs rising up and sharing notes. I love you people!
 
Welcome to the VR community, Paul. Glad you found us and decided to post. Sorry you are potentially faced with climbing the mountain again. At least you know what the journey is like so are prepared for it. While nobody wants to do the journey more than once, we have lots of members who have successful done it. Best wishes and good luck.
 
Welcome, Paul. Sorry you have to face surgery again, but as you know you are going to a great place. Dick had his AVR with Dr. Cohn at Brigham. They will take good care of you and you will rise again! Let us know when you have a date so we can add you to the calendar.
 
Welcome Paul. Happy you found us but sorry for the reason.

My second OHS, going on four months ago, was far easier on me than the first. Hopefully, yours will be the same.

Your travels sound fascinating and there are loads more roads you need to walk.

Welcome and Best Wishes.

 
Hi Phoenix, Welcome to the best place in town. You can get great support and information here. We all been through all sorts of heart related issues.
I've had a double vr and lung surgery and many others to boot.
So again welcome!!!
 
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