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Thanks so much again to Oak Tree and to Susan BAV. I tend to get myself all worked up, so just having additional information helps and of course your encouragement means a lot. Fortunately, or unfortunately, I work where I had my CT scan done yesterday, so I signed a release and got my report before my cardiologist did. I plan on calling him on Monday, if he doesn't call me, but knowing ahead of time probably waasn't the smartest idea in the world. I am going to take your advise OakTree and start looking for a surgeon, just to know exactly what I am dealing with. From my last visit to the electrophysiologist for my pacemaker check, the PA said she can definetly hear "leaking" now, which she says is related to the aneurysm. It is so frustrating because she acted like it was not that big of a deal, which maybe that part isn't. I just really am concerned (and confused) about having two aneurysms and what that means in regards to treatment and surgery. I am so, so, so grateful for this site and everyone who takes the time to respond. This is the first place I thought of after I got my results. Thank you again for everything. This has not been a good week.

Tiff
 
OakTree - You are such a great help and have given me so much valuable information and appreciated resources.....thank goodness you are on this site! I am having a few computer issues tonight, so I have not been able to open the link you provided, but I will keep trying. I also plan on looking for additional information on each and every surgeon you named. My sister works for a large healthcare system in Milwaukee and she is looking into some options for me too. I would just like to find a surgeon to talk to (at least to start with), so I can figure out exactly what I am dealing with and what I have to look forward to. This again has been a lot to digest. I hopefully will get at least a bit of insight on Monday when I talk to my cardiologist. Thanks for all your help and support. I will need it in the months to come for sure.
 
Well, I finally sat down with my cardiologist today. The surgeon I had informally talked to prior to today said that surgery could wait until the main aneurysm was 5.0. My cardiologist said today that we could wait until it is 6.0; however, he went on to say that many people with bicuspid valves had these types of aneurysms develop due to the turbulent blood flow caused by the stenotic valve prior to the valve replacement surgery. He thinks that since this now has been corrected, I will never need surgery to repair the aneurysm. Both the surgeon and the cardiologist also said the second aneurysm is really just an extension of the main aneurysm. The cardiologist recommend that I come back in one year for another CT scan, but we asked for a six-month followup instead. Does this sound right to anyone? I am hoping he is 100% correct, but I have my doubts. He also said that the TEE is far less accurate than the CT scan, which leads him to believe the aneurysm really did not grow at all. I am really confused now. The surgeon, who had only limited information regarding my history, felt that it should be followed and when it reached 5.0 cm surgery would be needed. Any advice?

Tiffany
 
Well, I finally sat down with my cardiologist today. The surgeon I had informally talked to prior to today said that surgery could wait until the main aneurysm was 5.0. My cardiologist said today that we could wait until it is 6.0; however, he went on to say that many people with bicuspid valves had these types of aneurysms develop due to the turbulent blood flow caused by the stenotic valve prior to the valve replacement surgery. He thinks that since this now has been corrected, I will never need surgery to repair the aneurysm. Both the surgeon and the cardiologist also said the second aneurysm is really just an extension of the main aneurysm. The cardiologist recommend that I come back in one year for another CT scan, but we asked for a six-month followup instead. Does this sound right to anyone? I am hoping he is 100% correct, but I have my doubts. He also said that the TEE is far less accurate than the CT scan, which leads him to believe the aneurysm really did not grow at all. I am really confused now. The surgeon, who had only limited information regarding my history, felt that it should be followed and when it reached 5.0 cm surgery would be needed. Any advice?

Tiffany
Advice, Tiffany?

Do they know for sure how large your two, or it may be one, aneurysms are? Have they for a certainty developed and/or enlarged since your valve replacement surgery?

There are evidently still so many unknown variables related to various degrees of bicuspid issues, including the possibility of development of connective tissue issues, and even the aorta experts have hopefully learned much more in the past few years and will continue to do so. There seem to be many shades of theories being developed and not yet necessarily proven. I'm no expert but this is my opinion from what I've read and from what I've experienced.

Also, although some of us have endured incorrect doctor's advice, most of us here are not experienced physicians and there may be other things in your records that need taken into consideration.

That said, however, since you have only "informally" consulted with one surgeon who did not have all of your records available, consulting with more excellent, experienced, and highly recommended surgeons, perhaps even near you, seems to be a good idea. That's what I would do. And I would make sure he/she/they had all of my records, pre-op and post-op, because it is important to know whether this has really developed post-op.

Also, have you discussed this with your valve replacement surgeon? Maybe this would be a good place to start.

I consulted with three surgeons. Surgeons know a great deal more than most cardios. My (former) cardio told me I didn't need my valve replaced and he was completely wrong. It's a good thing I didn't wait around on his advice.

If the aneurysms developed after the surgery and at the stitching site, what the cardio said would make me very uncomfortable.
 
This whole thing has gotten me so confused and discouraged. I love my cardiologist but am just so worried that he really does not know how to proceed in this case. He said that he has seen this type of aneurysm many times before and 80% of the people never need surgery. This may very well be true, but from what I have read and from all the wonderful advice I have received from this site, this could also very possibly be an issue that will need surgical intervention in the very near future. My plan at this point is to make an appointment to see the surgeon I informally talked to before and go over all of my history, etc. Since it sounds like I have a little time before anything needs to be done, in the meantime I am going to also contact those surgeons Oak Tree recommended. They really seem to be the experts in this field and that makes me feel much more comfortable and supported. Of course, I would love to just believe what my cardiologist has to say, but that does not sound like the most realistic and/or wise approach at this time. Again, I cannot thank Oak Tree and Susan enough for responding to my posting. I often feel like I am so misinformed and overreacting or underreacting and you both help me put things in perspective and come up with a plan. Thanks again and I will keep you posted.
 
Brachiocephalic artery

Brachiocephalic artery

Hi Tiffany, this is very interesting reading for I have a dilated ascending aorta of 4.6cm and dilated brachiocephalic artery of 3.0cm. This is the results from my CT aortogram in February, I have just had another CT scan this week and are awaiting the results of that. They are not rushing into surgery at this stage, but they did say it was a complex situation, and I think they are trying to avoid it. Basically they say the brachiocephalic is very rare to be dilated, so not many have had it repaired/replaced.
Good luck with shopping for a surgeon, you will learn so much more about it from different surgeons as well as this site. Keep in touch.
 
Another potential surgeon would be Ross's favorite, Dr. McCarthy at Northwestern University in Chicago. He was "stolen from Cleveland Clinic" in Ross's opinion. Ross credits him with saving his life from his aortic disection.
 
Sorry I haven't responded sooner, but I ended up in the ER a week or so ago with a pretty bad run of PVCs. Turns out the PVC are "bigeminy" so they are harmless, but I was still kind of freaked out that they came on so strong and fast. I went to the electrophysiologist and they said (from the reading on my pacemaker) that I went from having about 1000 PVCs in a six-month period to 190,000 in the last month. They started me on a beta blocker, but I didn't tolerate it well. So, they then started me on Lovaza, which is a prescription fish oil. I feel better than I did, but I still have very frequent PVCs. I am just trying to live with it, because I would prefer not to be on any additional medication. It is just taking some getting used to. Needless to say, I have not started my discussion with any surgeons yet, but I plan on getting in touch with a number of the surgeons everyone has mentioned. Thanks so much again for all your help. I will keep you all posted!

CAROLYNCOX: Sorry to hear you are going through this also. Have you met wiith a surgeon yet? I am just interested in hearing what a surgeon says in comparison to what a cardiologist says, especially regarding the brachiocephalic aneurysm. Hope you are feeling okay. If there are any questions I can answer for you, please let me know.

Thanks again and Happy Labor Day!
Tiffany
 
I'm so sorry for your recent troubles

I'm so sorry for your recent troubles

Tiffany, I wish you all the best with your newest challenge. I don't have any monumental words of wisdom, other than to give you some advice from a local perspective. My aortic valve/aorta replacement was performed by Dr. Husam (Sam) Balkhy at the Wisconsin Heart Hospital. Even though he's the director of cardiothoracic surgery at the WHH, he performs 5-7 surgeries per week. I would recommend a consultation with Dr. Balkhy - at the very least, he can lead to the appropriate person within reasonable distance of MKE. For my situation, I couldn't imagine a better choice than Dr. Balkhy. Obviously, however, every situation is different.

Stay strong and don't hesitate to ask any questions regarding my recent trials and tribulations. I hope you've had an opportunity to experience Harley Davidson's 105th anniversary this past week, the constant rumbling of thousands of bikes is one of my favorite sounds in life...

Take care,
Jason
 
Welcome Back!

Welcome Back!

Hi Jason!
It is so nice to see you are back and posting already!! Sounds like Dr. Balkhy did a great job and you are on the road to recovery quickly! I plan on setting up an appointment with Dr. Balkhy soon. How you are you feeling being home? That can be a bit of an adjustment. If you have any postop questions for me, please just let me know.

P.S. I went to the 100th, but didn't get to go to the 105th....though I did see and hear lots of bikes! Gotta love it!

Tiffany
 
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