Kevin Burton - Heart Valve Journal

My Journal

3205 days ago

All, I was born with a bicuspid valve that we have been watching since I was a child and we are discussing a surgery to replace. We also discovered an anuerisym ...Read more

All, I was born with a bicuspid valve that we have been watching since I was a child and we are discussing a surgery to replace. We also discovered an anuerisym on the aortic root a few yrs ago at 4.9 cm. My larger concern is that I was diagnosed with epilepsy about 12 years ago at the age of 36. Has anyone here gone through a aortic valve replacement with epilepsy? The nuerologist doesnt seem worried but I take a medication twice a day that is only available in a pill form. My sleep patterns seem to be the largest trigger for my siezures. My sleep pattern and the number of hours I sleep is going to be severely disrupted, I am a bit concerned.

Phyllis Petersen I only had seizures as a child, so can't advise you. I do know that a good heart center will take eve ... Read more

Phyllis Petersen I only had seizures as a child, so can't advise you. I do know that a good heart center will take every aspect of your current health into account and have the people necessary on call in case there's an emergency. Just keep reminding them off your issue and concerns. Have them tell you what precautions they'll be taking. You want to go into surgery feeling confident, so keep asking until you feel comfortable with the answers.

Roseline Rosario I'm with Phyllis...and a consult with anesthesia wouldn't hurt either

I have grand mal seizures that I take meds for every day to keep under control. I also have congenita ... Read more

I have grand mal seizures that I take meds for every day to keep under control. I also have congenital heart disease and will be going for mitral fix/replacement, ASD re-repair and two other minor fixes and I have minor cirrhosis. I've spoken extensively to four adult congenital heart disease cardiologist and two congenital heart disease surgeons and none of them have concerns operating on me. I'm going to Boston Children's Hospital in December for surgery, they have one of the best Adult congenital heart disease programs in the country. The one thing that I've learned going thru this is congenital heart patients should be treated by specialist in the disease.

Kevin Burton I appreciate all of you replying. I don't have a date set, but would like to do this sometime in Dec ... Read more

Kevin Burton I appreciate all of you replying. I don't have a date set, but would like to do this sometime in December of this year. I am hoping to get some recommendations on surgeons from my cardiologist next week. Then we will go from there. I am hoping that 6-7 weeks lead time is enough to get things lined up in terms of the hospital and surgeon. A bit concerned it is not. We will see. I am in Connecticut and the hospitals here are not really in the list that Adam has on this web site. The New York hospitals are a couple of hours away so it would be a long drive for wife, parents and kids to drive back and forth.

Corey Sines I don't have any advise about seizures, however for the heart facility, you can check out your local ... Read more

Corey Sines I don't have any advise about seizures, however for the heart facility, you can check out your local heart hospitals, just have your prospective surgeon give you his statistics on how many valve ops he does a year, mortality rate, etc.
The magic number is 100+ valve ops a year, or someone who has done this types of numbers previously in their career with good outcomes.

Kevin Burton Corey, Thx for the advise.

Phyllis Petersen With your situation Kevin, I would think less about about travel times and mostly about finding the t ... Read more

Phyllis Petersen With your situation Kevin, I would think less about about travel times and mostly about finding the top person to handle your surgery. I went from Tucson, AZ to Cleveland, OH for that reason, and paid for my sister to stay in a hotel on campus when she decided she wanted to be there with me. I had family an hour and a half away that I was able to stay with afterwards, so was lucky there. My attitude, though, was that having my heart fixed right means I'll have time to pay off any costs to go to the best place for me.

Got to agree with Phyllis, Kevin. My Hartford CT adult cardiologist sent me to Boston as there are no ... Read more

Got to agree with Phyllis, Kevin. My Hartford CT adult cardiologist sent me to Boston as there are no surgeons in CT that specialize in valve repair on congenital heart patients (mine was first repaired in 69 when I was 12). I tried Mass general, but they messed up to many things, then travel and insurance hassle's and I decided to try Yale. Their valve surgeon left and went to Hartford in June and I made a decision to go to Boston Children's even though my entire family would be 1 1/2 to 2 hours away. Yes, most of the time I'll be alone BUT after visiting three hospital, 4 cardiologist and two surgeon I felt this was the best place for me.

Phyllis Petersen Glad to hear David that you found someone who gives you the confidence to get this done. It matters!