Jun 4
tennis23
tennis23 , Posted on SUPPORT NETWORK Blog

Brian Tinsley

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Hi,

I am the www.aorticdissection.com guy and my name is Brian TInsley. I am presently 56 years old and on 8/22/19 it will be 16 years since my aortic dissection. I had to have my ascending aorta replaced. I have a bicuspid valve that was never replaced and has continued to leak over the years. I just had my stress echo and my latest CTI Angio.TVAR scan. But, my can appears to be fine and my CT Echo appeared to be fairly normal. I was not having any symtoms UNTIL this last weekend on Saturday during my tennis match I got really light headed and thought I was going to pass out. I had to take about a minute break and continued. So, I didn't play till Tuesday am (today) doulbes and I am feeling really dizzy still and was almost going to have to quit. I am wondering if I finally have pushed my aortic valve now far enough that granted it's a moderate leak, that I am to the point that I just need to get it replaced along with my aortic root? I am scared that there are now experts (Aortic Centers) in the state of Washington. Rather, I work closely with Dr. Liang at Stanford and he asked about my Bp today and to go get an EKG. 

Has anyone else felt light headed and dizzy with a leaky aortic valve? When do you ull the trigger?

 

Thanks,
Brian :)

5 Comments
  • AmbassadorB
    AmbassadorB,

    Hi Brian,

    Like you, I knew that all was not well, and my Cardiologist said that it was time to schedule surgery and take care of the bad aortic valve.   I said okay and that I would check with the Mrs. and get on with it.  Instead, I proceeded to leave on an already scheduled trip to Yellowstone Park.   After a fabulous Buffalo Steak dinner at the Yellowstone Lodge, and ready to open the door to our room, I passed out.  I was "light headed" (borderline dizzy), and thought maybe it was the higher altitude. Nope!

    Luckily, there was a Medical clinic still open, next to the hotel and I was transported there.   After a quick test, I was told that they were ready to fly me to Idaho Falls and "save my life".   I signed a document that said that I knew that I had to have surgery - now; otherwise I was finished.    Instead, we took a flight home to Traverse City, Mi. the next day and I proceeded with the proper medical treatment.   I had a TAVR procedure, and now all is well.   That was several years ago.   A quick sidenote:   When I was finishing up with the last test, prior to surgery, my Cardiologist introduced me to a surgeon who was walking by.   I told him my story and he began to laugh!   That stopped me.   It turned out that the surgeon that would have done my procedure in Idaho Falls was a good friend of this surgeon, who said: "The  Idaho Falls surgeon who would have done the operation, is a good friend, and is the best one in the whole country!"  (So where did that leave me?  Ha!)

    GIT 'ER DONE!   Don't wait for a sunny day.   Mother nature and your medical team are calling the shots!  You'll be fine!  So you miss a tennis match.  You'll be harder to beat next time!

    All the best!

    Ambassador B.   Bernie

     

     

     

  • AmbassadorC
    AmbassadorC,

    Hi Brian, 

    Good evening and welcome to the support network. While I cannot speak with specificity to the aortic valve, as I am a mitral valve patient, what I can relate to are the symptoms of lightheadnesss that are characteristic of valve disease in general regardless Of which valve is affected. While I cannot speak as to medical advice re your particular episode of lightheadness, I can tell you based on my experience from my journey, is that it is imperative to be in communication with your cardiac team. Even though your tests may have been inconclusive of degenerative valve disease, and holding steady at fairly normal, its best that you relay your episodes to your Dr. And follow his advice re the EKG. As heart patients, there are so many factors that can afffect our bodies post surgery. I have been told that it is essential to stay hydrated, if not, especially when exercising, it can cause periods of lighhtheadness. Even now post surgery, when I exercise by taking HIIT kick boxing classes, I am unable to go from standing to quick pushups or burpees as I will get very lightheaded. The takeaway of all this is that you need to be your own Advocate and relay as much information as possible surrounding your events to your team. The more information you can give them, the more robust your conversation will be.  If you have not already, I invite you to review the heart valve education center re resources. There is a great infographic to help you track your symptoms that you can then use to start your ci conversation with the medical team. 

    Like Ambassador B stated, don’t hesitate and wait, get going towards putting these two incidents on your Dr.’s radar. 

    Keep on fighting with heart, 

    Ambassador C 

  • AmbassadorC
    AmbassadorC,

    Heart valve symptom tracker

    Educational resources 

    HVD problems and diagnosis

    ❤️❤️❤️

  • dk21015
    dk21015,

    Hi Brian,

    I too HAD a bicuspid aortic valve with stenosis. I was diagnosed 12 years ago with the bicuspid aortic valve and told that in about 10 years I would probably need to have it replaced. I went 12 years. My doctors had been keeping an eye on it over the years. In the spring of 2019 I was lifting some heavy things and I passed out. My cardiologist sent me to a cardiac specialist wwho ordered a Cardiac catheterization which revealed that the stenosis was bad and recommended to have the valve replaced. I talked to the surgeon and he recommended open heart replacement. I'm 65 and he said that i was young enough to recover well from the surgery. They usually recommend the TAVR replacement for people who may have a hard time recovering from open heart, mostly older people. I was told that TAVR is new and they don't think it would last as long as the bovine tissue valve which I opted for. My surgery was July 8, 2019. I was in the hospital for a week and have been recovering at home for 5 weeks. Today is my first day back to work. I feel good, my only problem being back pain which can accompany open heart surgery from spreading the ribs open. I plan on looking into a cardiac rehab program to assist in my recovery. Good luck on which ever route you take.

  • Why9Aorta
    Why9Aorta,

    It with  Great  sadness  I  relay this ,  I met Brians  workin 2010  as I  began to recover an  seek answers  he  began  a  website all about  Aortic  Dissection ....

    "Brian suffered a Type A,  a couple of years before mine and His Web page www.Aortic Dissection.com was just beginning when I found itm in 2010 it was an informational and was literally years ahead of any of the facebook groups and on line (in general groups) on the subject Brian went in before christmas 2019  to have some "further" surgical issue as well as "warranty work"
    on his orginal repair being 13 or 14 year s old now,  when  sadly Brian Passed away ... Leaving behind His wife and to children. They have a Go fund me page set up an I am posting the url here should anyone decide to help the Family out He'd gone back to work at a differant job 3 or 4 years if not longer post repair ... you can read his daughters story of her dad here >. https://www.gofundme.com/f/brian-tinsley-memorial-fund?utm_source=customer&utm_medium=copy_link-tip&utm_campaign=p_cp%20share-sheet&fbclid=IwAR1QCyls9oo

    I hope an pray Not only for the family and Brian but I hope someone will be offered a chance to continue with the Web Page which is a Wealth OF Information not only with US doctors and Hospitals that are top of the game here But also Hundreds of survivors stories Broked into and BY Age groups gender, Type a or B 's or BOTH as well as secondary anuerysms in some cases,... Rest in Peace Brian Tinsley

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