Newbie with multiple problems

[DebbiN]

Hello, I am so glad I found this forum. I have a bicuspid aortic valve and 4.6 ascending aortic aneursym. Recently had a bout of amourosis fugax (temporary blindness) that resulted in finding a blood clot in my right internal carotid artery, which has now resolved with Coumadin 14 mg per night. Two years ago had 1st and 2nd degree AV block and had to get pacemaker. A recent TEE showed I also have a blood clot on one of my pacemaker leads. I have normal to sometimes low blood pressure and all beta blockers and calcium channel blockers have always made me feel so badly, sometimes with nightly episodes of passing out because my bp goes so low. So I was not on, until last Friday, any kind of heart meds, I am now on propanolol. Giving it a try, it is a beta blocker that i take at bedtime. Anyway, my cardiologist wants me to start thinking again of having the heart valve/aneursym surgery. I had been told about a year ago that within the next 5 years I would need the surgery. Now they want to do it way sooner. I have been having mild angina recently and horrible fatigue and dizziness. No energy at all, and bouts of depression.
I was wondering if anyone here has had that surgery. I am really scared of it for some reason, even though I have had major surgeries in my lifetime. I had breast cancer at the age of 23 and had to have a mastectomy then 3 months later, a total hysterectomy. I have also had partial thyroidectomy and 2 reconstructions.
I am glad to have found you all! I am trying to get a second opinion at the Cleveland Clinic for all this.

 

[jeffp]

Debbi,
Get your second opinion. From what you are saying, it looks like surgery is in your near future. Its best to go get these things before they break (don't wait until you wind up in ICU like I did because you thought you'll wait until its worse). It is scary major stuff, but statistically the odds are way in your favor. After the recovery period (its slow and uncomfortable, but not painful), you'll be much better off than you are describing now. Best wishes.

 

[Karlynn]

Welcome!
We have many post operative bi-cuspids here, so you've come to the right place for that. And you've really come to the best place for any kind of support related to heart valve issues.

I'm not an "aortic valver" (I had my mitral valve replaced), but from what I've read here, it sure sounds like you are ready for surgery. I will let the other aortic folks weigh in, but I'm guessing they're going to suggest now is better than later, particularly with your symptoms.

 

[Superbob]

Debbi,

I am not a medical professional but from what you describe, it sure sounds like surgery will be in order sooner rather than later. Second opinions are always good though. I'll bet you will feel much better after having this done.

Good luck and welcome to this site. I am sure plenty of folks will be along with relevant personal experiences.

Rob

 

[Bill Hall]

Hi Deb - I had my aortic valve and mitral valve surgery done at the Cleveland Clinic. I had a great surgeon (Cosgrove) who did the surgery with only a 3 inch incision. Recovery for me was comparatively easy and that was 4 years ago. Originally, I went to Cleveland for a second opinion, I was living in NJ at that time. Cleveland has a great reputation and a very low mortality rate. NC has some really good hspitals and surgeons, so if you would like to stay closer to home, you might try them. Good luck, it looks like you will need surgery soon, based on your description.
Bill

 

[Ross]

If that aneurysm is 4.6, your definately well on your way to surgery. Personally, I'd get that consult asap. My aneursym ruptured at around 4.7.

 

[ALCapshaw2]

Welcome Aboard Debbi !

Glad you found us.

While you do have a number of heart and health issues, the GOOD NEWS is that they are all FIXABLE with very high success rates when performed by skilled surgeons at hospitals that see your type of situations regularly.

The Cleveland Clinic is rated as the #1 Heart Hospital so you are going to the right place. If you want to stay closer to home, DUKE is another top heart hospital.

Hopefully your pacemaker is programmed to prevent your HR from getting too low!

Some of us have felt like we were dragging our '
'behinds' when on 'theraputic' levels of Beta Blockers. My cardiologist takes a more conservative approach and weaned me to the 'lowest dose' Beta Blocker that prevented my symptoms. Hopefully such an approach might work for you if needed.

ALL of your symptoms are indicative of the need for surgery so be sure to get a SURGICAL consultation at C.C. and make that ASAP. Surgeons typically like to operate BEFORE there is PERMANENT DAMAGE to the heart muscle and walls. My *guess* is that you are rapidly approaching the 'better to be safe than sorry' point so get that consult and be prepared to commit to surgery if that is the recommendation.

Note that all 1200 members here are either SURVIVORS or family members of survivors. If we can do it, so can you! Also note that first time surgeries for patients under age 60 have extremely high success rates, typically over 95% or better.

Most patients report that the WAITING was the WORST part and surgery / post surgery was much less troubling than first anticipated. Again, most patients report various degrees of 'discomfort' rather than pain. You WILL be very tired for the first few weeks but every day gets better and better.

If you have the time, please look over the Pre-surgery and Post-surgery Forums to read about others experiences and how we got through this LIFE SAVING experience.

'AL Capshaw'

 

[CCRN]

Something in common

Something in common

Hello, I am so glad I found this forum. I have a bicuspid aortic valve and 4.6 ascending aortic aneursym. Recently had a bout of amourosis fugax (temporary blindness) that resulted in finding a blood clot in my right internal carotid artery, which has now resolved with Coumadin 14 mg per night. Two years ago had 1st and 2nd degree AV block and had to get pacemaker. A recent TEE showed I also have a blood clot on one of my pacemaker leads. I have normal to sometimes low blood pressure and all beta blockers and calcium channel blockers have always made me feel so badly, sometimes with nightly episodes of passing out because my bp goes so low. So I was not on, until last Friday, any kind of heart meds, I am now on propanolol. Giving it a try, it is a beta blocker that i take at bedtime. Anyway, my cardiologist wants me to start thinking again of having the heart valve/aneursym surgery. I had been told about a year ago that within the next 5 years I would need the surgery. Now they want to do it way sooner. I have been having mild angina recently and horrible fatigue and dizziness. No energy at all, and bouts of depression.
I was wondering if anyone here has had that surgery. I am really scared of it for some reason, even though I have had major surgeries in my lifetime. I had breast cancer at the age of 23 and had to have a mastectomy then 3 months later, a total hysterectomy. I have also had partial thyroidectomy and 2 reconstructions.
I am glad to have found you all! I am trying to get a second opinion at the Cleveland Clinic for all this.

I just had the same surgery two weeks ago tues. I am a RN and I work in a 9 room OR that's used exclusively for open heart. I was a basket case to say the least. You need this surgery. Call your cardiologist asap and get him to refer you to a surgeon. Don't be afraid. There's a whole bunch of wild and crazy people on this web site who will pray for you and answer any questions we can. My aorta was 4.5 and my peak gradient was over 100. My surgeon replaced my valve and aorta with valve/dacron conduit. This is not a procedure that every CT Surgeon is an expert. The procedure is called a Bentall. Discuss this with your cardiologist and tell him you want a surgeon who does a fair amount of these procedures a year. I admire you for the courage you've had during your other illnesses. Your cardiologist seems like a good guy and is concerned for you. If you have any other questions you think I might be able to help with, please feel free to ask. I have a very good idea of what you're going through and I care.

 

[Laurz]

Yeah like Jeff said....

Yeah like Jeff said....

If the time is right, don't wait. While I had issues with the Mitral and not the Aortic, I can tell you that I am starting to feel better now then I have for quite some time. It really is very exciting and I am looking forward to much more improvement. So why wait to start feeling m-m-m-good. Laurie

 

[DebbiN]

Thanks for your warm welcomes

Thanks for your warm welcomes

I appreciate your advice, I know you are all right on this. I want to get more opinions on it though. I once almost had a serious operation done years ago that turned out to be unnecessary, so I am cautious.
Well, already off the beta blocker the cardiologist gave me and on to another one... now on Tenormin. The propanolol dipped my bp to 89/60 and I can barely function. Having a hard time thinking, and almost had car accident because my responses are slow. It is taking me forever to post this.
Gosh, I wish I would feel better!

 

[ALCapshaw2]

One of our recent surgical survivors (an RN I believe) made a very profound statement to another prospective patient after her (the RN's) surgery:

"If you have a condition that can ONLY be repaired by surgery, get a SURGICAL opinion" (emphasis added)

Valve problems and aneurism's are PLUMBING problems and can ONLY be fixed by a PLUMBER (Surgeon). NO medications and NO 'holistic' approaches will fix these problems. Hopefully you will see a surgeon while at Cleveland Clinic. It will be interesting to hear what they say.

Please don't wait for things to get worse and then hope they can reverse the damage. We've had some members report that their valves literally "fell apart" in the surgeon's hands. That's what you call "Just in Time"! If your 'numbers' say it's time for surgery, BELIEVE IT and procede.

'AL Capshaw'