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  • Lots of Questions

    Hello everyone! I?m Scott and I have been visiting this forum for the past 3 years or so. I am 45 yrs old and in late January 2006 I was starting to become a little dizzy at work and decided to visit my PCP for a check up. He found a very loud heart murmur and set me up with an appointment with a local cardiologist. I was found to have severe regurgitation and my valve was not closing due to calcification and I was on the fast track for valve replacement surgery. The surgeon found my valve to be a bicuspid.

    I really learned a lot from this forum and spent many nights reading your posts and researching my condition.

    After moving back to Austin from Maine, I found my new cardiologist and new test were completed to set a new base line for me. My cardio has been concerned about the size of my ascending aorta and set me up on 6-month check-ups and she told me they were watching for any signs of change. I was told my aorta is 5.1. I recently became a subject for Gentac and the University of Texas Genetic Research Center in Houston in their search for the mutations, which cause my condition. I met with the research doctor this last Thursday and was told to talk to a surgeon soon due to the 5.1 size. I was referred to Dr. Joseph Coselli and Dr. Hafez Safi both out of the Houston area.

    I contacted Dr. Coselli?s office on Friday and my records including my recent CT scan are on the way to his office for review.

    I?m extremely frightened about the possibility of surgery again. I broke down in the Research Center office when the doctor told me about the possibility of surgery soon. Anyway, I appreciate any advice you folks have regarding my situation.

    Thank you, Scott

  • #2
    Hi Scott,

    Sorry to read about the situation with your aorta. I can certainly understand that you are upset about the prospect of more surgery. Keep posting about your situation and I'm sure that some of the really knowledgeable people here will be able to add some perspectives to your situation.

    Best wishes,

    Jim
    BAV/0.8cm2AS/4.2cmAA - In the waiting room. "Don't worry about your heart, it will last you as long as you live." - W. C. Fields

    Comment


    • #3
      Your situation is why more surgeons are looking at Both the Valve(s) and Entire Aorta for BAV patients, so that they can address Both Issues during ONE surgery.

      Do a "Search" for "Coselli" and you should find several links to posts where his name is mentioned.

      Our Member "Oaktree" credits Dr. Coselli with 'Saving Her Life' following a Failed AVR by her 'local surgeon' and describes him as one of the Leading Aortic Surgeons in the country. You definitely want someone of that caliber doing a repeat surgery to repair your Aorta. I would expect you don't need to look any further, assuming you feel confident after meeting Dr. Coselli.

      'AL Capshaw'

      Comment


      • #4
        Welcome, Scott. I'm sorry that you are in this position now of facing surgery again, but from Al's post you are on the way to getting the best opinion you can get. Please keep posting and let us help you through this. Best Wishes.

        Comment


        • #5
          Originally posted by ScottinAustin View Post
          Hello everyone! I’m Scott and I have been visiting this forum for the past 3 years or so. I am 45 yrs old and in late January 2006 I was starting to become a little dizzy at work and decided to visit my PCP for a check up. He found a very loud heart murmur and set me up with an appointment with a local cardiologist. I was found to have severe regurgitation and my valve was not closing due to calcification and I was on the fast track for valve replacement surgery. The surgeon found my valve to be a bicuspid.

          I really learned a lot from this forum and spent many nights reading your posts and researching my condition.

          After moving back to Austin from Maine, I found my new cardiologist and new test were completed to set a new base line for me. My cardio has been concerned about the size of my ascending aorta and set me up on 6-month check-ups and she told me they were watching for any signs of change. I was told my aorta is 5.1. I recently became a subject for Gentac and the University of Texas Genetic Research Center in Houston in their search for the mutations, which cause my condition. I met with the research doctor this last Thursday and was told to talk to a surgeon soon due to the 5.1 size. I was referred to Dr. Joseph Coselli and Dr. Hafez Safi both out of the Houston area.

          I contacted Dr. Coselli’s office on Friday and my records including my recent CT scan are on the way to his office for review.

          I’m extremely frightened about the possibility of surgery again. I broke down in the Research Center office when the doctor told me about the possibility of surgery soon. Anyway, I appreciate any advice you folks have regarding my situation.

          Thank you, Scott
          Just wanted to let you know that I have heard wonderful things about Dr. Coselli in Houston! He is one top-notch surgeon so you're in good hands.

          Being frightened is the first & foremost feeling that all of us have had when faced w/OHS & there's some of us, me included, that have been through it multiple times & the feelings never change.

          But, we're all survivors & we're here to give you support & hopefully help disspell some of your fears & anxieties. Keep us posted once you meet w/Dr. Coselli & see what the plan is.

          Hang in there my friend.......the nightmare will be over soon enough!
          Best Regards,
          N Jean (New Mexico)

          May/1975: AVR & MVR Double-Valves (Cooley-Cutter Mechanicals)
          Dec/1975: MV Repair -- Re-suture Mitral Mech. Valve (Dr. Denton Cooley)
          Mar/2006: AVR -- Old Valve Replaced w/St. Jude Mechanical (Dr. Reul)


          "Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less."
          - Marie Curie

          Comment


          • #6
            Welcome to VR. Sorry to hear you are facing surgery, but glad you found us. This is the right place for information and support. Best wishes and good luck.
            Wayne
            02/28/06 Mitral Valve Repair & closure of atrial septal defect - Dr. Tirone David
            03/24/06 Pericardial Tamponade

            Comment


            • #7
              Scott, I am very sorry to read what has happened to you. It is possible that the first surgeon did not recognize the aneurysm or was not prepared to perform the surgery to deal with it. I am also very sorry to say that this continues to happen to those with BAVs. No one should have to have a repeat surgery in such a short time - they should have the right surgery for the valve and the aorta the first time.

              Your decision to participate in GenTAC was an important one, because it put you in touch with physicians who understand aortic disease in the chest. It has opened the door to aortic expertise, which is wonderful for you! You can avoid any unexpected emergency situations. Oaktree's experience is a wonderful example of Dr. Coselli's skill! While you wait to see Dr. Coselli, I hope you have help with blood pressure control and that someone has advised you not to do any heavy lifting.

              Best wishes,
              Arlyss
              My husband is the patient
              AVR for BAV, critical stenosis with heavy calcification, April 1990
              Ascending aortic aneurysm, complete resection under Total Circulatory Arrest, May 2001
              Stroke due to valvular strands, November 2005
              AVR - mechanical valve replaced with tissue, February 2006

              Comment


              • #8
                Hi everyone!

                Thank you for the notes of encouragement and advice. I have limited access to this website - for some reason my IP address is blocked from my home computer and I have to sneak a peak from work.
                My contact at UT Houston research center has been amazing. She e-mailed me this weekend and asked if it was ok for her to give another “subject” my info so we could talk. Last night I had a very long conversation with a person who has had ascending aorta surgery and is now being monitored for his bicuspid aortic valve. He answered so many of my questions and was very supportive.
                Yesterday I met w/my PCP to have a blood count done, (the research Doctor told me I looked a little anemic). I told my PCP I was enrolled in this research study and they had indicated I might need a 2nd surgery. He shook his head and said “wow”. Nothing else.
                I have an appointment w/my cardio next week and hopefully I will hear from Dr. Coselli’s office by then.
                Oaktree: Thank you for your note about Dr. Coselli and yes My aortic valve was replaced 2.5 yrs ago.
                Arlyss: Since my valve surgery I have been on beta-blockers and my Maine cardio told me not to lift anything over 30#s. I have talked to my current cardio about weight restrictions and she told me not to lift furniture. I have stuck to the 30# rule.
                I’m feeling much better about my situation and I am relieved that Dr. Coselli is “da man”. Thanks to all for your notes.
                Best Regards,
                Scott

                Comment


                • #9
                  Hi Scott and welcome. I'm just down I35 from you in New Braunfels. I tried to get into the Gentac study and didn't make it since there is no history of anyone in my family having a bi-cuspid aortic valve or an ascending aortic aneurysm.., but the gal sure did try to include me.

                  My opinion is that Dr. Coselli is the very best there is for your situation and if I ever need to have this St. Jude replaced, I'd sure beat a path to his front door. Several folks on here have had great results with Dr. Coselli..

                  Cheers and the best of luck..!

                  PS...and how 'bout that "Pickle Parkway"....used it yet?
                  Happy Trails,

                  BAV-1999 - St. Jude Silzone recalled valve still clickin'
                  CoaguChek testing since 1999
                  CoaguChek S testing since 2002
                  CoaguChek XS testing since 2009
                  "Gee, ain't it funny how time jus' slips away..."

                  Comment


                  • #10
                    Upcoming Surgery

                    Hi Scott,
                    I am also down the road from you in Belton, I will be having a valve replacement in the next few months. I had a commisseratomy 29 years ago when I was 18 and it lasted this long so I have been blessed so far. Now it is time to replace the valve, I have not talked with a surgeon yet, my appointment for my cardiologist is on the 17 of this month so I will see who he is suggesting. The Gentac study is interesting, I may check into that and see if it would work for me. I am very nervous about this as I have been reading up on the different types of valves and I just don't know which way to go. I am hoping after I talk with the surgeon he will have some insights for me.

                    I wish you good luck and a speedy recovery.
                    Cheryl

                    Comment


                    • #11
                      Update

                      Hi everyone. Here is an update on my situation:
                      Since my last note, my cardio has contacted my prior cardio in Maine and the surgeon who took care of my AVR. She has also talked to Dr. Coselli?s office and to the Texas Genetic Research Center in Houston. I had another CT two weeks ago and met with my cardio to discuss the findings. The new ct verified again my ascending aorta was 5.1 with an enlarged root. She told me to call Dr. Coselli?s office and a local surgeon to discuss their recommendations. I have an appointment with Dr. King in Austin on Wednesday.
                      I called Dr. Coselli?s office on Friday and the patient coordinator told me Dr. Coselli has determined surgery is necessary and she asked if I wanted to schedule surgery. I really want to know Dr. Coselli?s thoughts about my condition and his plan so I set up a consult for December 3rd.
                      So it looks like OHS round two to replace my ascending arota and root. I?m hoping this is the last time.
                      Thank you everyone for your notes. I will keep you updated.
                      Scott

                      Comment


                      • #12
                        Good Luck Scott!! I am 46 and had OHS Feb of 2007. It is hard to face these situations at an early age. Keep us posted.

                        Comment


                        • #13
                          All the best with everything Scott, let us know how your appointment goes..
                          [I]
                          St Jude MVR March 17th 2009

                          [/I]

                          "Whatever awaits you around the corner - God is already there."

                          Comment


                          • #14
                            Welcome and Good Luck........When I was diagnosed with a bicuspid Aortic valve with severe stenosis it was the day after my 50th back in April and was told OHS was the only option. Well.........lets just say I went on a binder for about 4 days........once the fog cleared and I decided to tackle this head-on and it got easier. I`m not the religious type but I had the support of my wife and many friends to help get me thru the coming months. I quit smoking cigarettes and dropped about 35 lbs. before the procedure. Anyway I hope for the best for you and keep in touch..........never get tired of happy ending when it comes to OHS`s.........
                            McGill University Health Center
                            Royal Victoria Hospital
                            AVR Procedure Sept.23,08
                            Dr. Cristo Tchevenkov-Surgeon
                            Aortic Valve by
                            Sorin Biomedica Cardio
                            Series R500
                            [url]www.chiprehab.com[/url]

                            Comment


                            • #15
                              Welcome!

                              It sounds like you are in good hands. I've heard Dr. Coselli is the master.

                              I am in Katy, so you probably pass within 3 miles of my house on your way to the Medical Center. There are several of us here from Texas, so glad to have another person in our "group".

                              Comment

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