Patient survey New patient education video Facebook Twitter www.onxlti.com
Results 1 to 25 of 25

Thread: Lots of Questions

  1. #1
    Join Date
    Aug 2008
    Location
    Austin, Texas
    Posts
    12

    Default 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. #2
    Join Date
    Aug 2008
    Location
    Philadelphia, PA and Cherry Grove, Fire Is. NY
    Posts
    2,731

    Default

    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


  3. #3
    Join Date
    Mar 2003
    Location
    North Alabama
    Posts
    6,910

    Default

    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'

  4. #4
    Phyllis Guest

    Default

    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.

  5. #5
    Join Date
    Jul 2007
    Location
    New Mexico
    Posts
    4,775

    Default

    Quote 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

    May/1975: AVR & MVR -- St. Luke's, Houston TX (Denton Cooley, Surgeon)
    Dec/1975: MV Repair -- St. Luke's (Dr. Cooley)
    Mar/2006: AVR -- St. Luke's, Houston TX (George Reul, Surgeon)


    "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

  6. #6
    Join Date
    Jun 2006
    Location
    Waterdown, Ontario Canada
    Posts
    4,618

    Default

    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

  7. #7
    Join Date
    Nov 2002
    Location
    southern California
    Posts
    447

    Default

    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

  8. #8
    Join Date
    Aug 2008
    Location
    Austin, Texas
    Posts
    12

    Default

    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

  9. #9
    Join Date
    Jun 2001
    Location
    Texas Hill Country
    Posts
    1,836

    Default

    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..."

  10. #10
    CherylBelton Guest

    Default 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

  11. #11
    Join Date
    Aug 2008
    Location
    Austin, Texas
    Posts
    12

    Default 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

  12. #12
    CathyK. Guest

    Default

    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.

  13. #13
    Join Date
    Feb 2006
    Location
    Melbourne Australia
    Posts
    999

    Default

    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."

  14. #14
    Join Date
    Nov 2008
    Location
    Montreal ,Canada
    Posts
    172

    Default

    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]

  15. #15
    Lisa in Katy Guest

    Default

    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".

  16. #16
    Join Date
    Aug 2008
    Location
    Foster City, CA.
    Posts
    3,836

    Default

    Good luck, Scott

    Things are clearing up for you and I wish all will go well. Keep us updated.
    Eva

    Aortic & Mitral valves replaced with St. Jude Mechanical valves @ age 57 on 9/2/08

    INR home tester/Coagucheck

    Forum Rules: " .... medical opinions expressed in this forum are the personal opinions of individuals. No person should at any time
    act on the information contained herein without the express consent of your own physician."

  17. #17
    Join Date
    Oct 2005
    Location
    Perth, Australia
    Posts
    2,354

    Default

    Good luck Scott...you are lucky to have such a great team avavilable to you...they are amongst the best around.
    [COLOR=Indigo]
    Ton....(44)
    Surgery...
    April 20, 2006.
    Bentalls' procedure
    & 1 emergency by-pass same day....
    10 hours surgery... 2 OHS in 1 day.
    25mm St Judes valve with attatched ascending aorta conduit.
    3 Cardiac Arrests after 1st surgery
    Mr John Alvarez, my hero...The Mount Hospital...Perth.

    Mum to 3 sons
    2 sons have BAVD 13 & 18yrs.


    [/COLOR]

  18. #18
    Join Date
    Aug 2008
    Location
    Can.
    Posts
    2,021

    Default

    Good luck with everything Scott. It sounds like you will be in good hands. Sending positive thoughts your way! Keep us posted...
    CE Perimount Aortic Bovine Valve

  19. #19
    Join Date
    Dec 2005
    Location
    California
    Posts
    304

    Default

    Hi Scott,
    Dr. Coselli performed my sugery in March 2004, replacing my BAV and resecting my ascending aortic aneurysm (5.1 cm in size...same as yours). I opted for the St. Jude mechanical with composite Dacron graft to avoid another valve replacement surgery later. My anuerysm extended into the transverse part of the arch, so Dr. Coselli also used the semi-bevel technique with additional graft extending along the base of the arch.

    As everyone will tell you, Dr. Coselli has the best track record of any surgeon in the world for aortic surgery. He's the best! His staff is also the best!

    Because my aneurysm extended into part of the arch, deep hypothermia circulatory arrest was needed, and as a result, I was on the heart pump machine for a longer time than those who don't require DHCA. Dr. Coselli's experience and skill were invaluable, as he resected my aneurysm and sewed the Dacron graft within a 14 minute window during which time the heart pump was stopped...this is extremely fast!

    Dr. Coselli also has a good sense of humor. In my first meeting with him, I had many questions. I also wanted to know how long before sex would be allowed after surgery. His reply, "We prefer you wait until you get out of the ICU."

    Prior to surgery, I had symptoms of sharp chest pain which was not a good sign and indicated surgery was needed right away. Dr. Coselli was able to schedule my surgery very soon after we met.
    Please feel free to contact me before or after your surgery.
    All my best,
    MrP

    Native Texan now stuck in California.
    BAV replaced with St. Jude mechanical valve and ascending aortic aneurysm resected in March 2004.
    Ob-bla-di ob-bla-da, Life goes on! La, la, la, la

  20. #20
    Phyllis Guest

    Default

    Good luck on the third, Scott and be sure to let us know the date when you have it.

  21. #21
    Join Date
    Feb 2008
    Location
    Canada
    Posts
    2,492

    Default

    Hello and welcome Scott,

    sounds that you are in good experienced surgeons and i wish you

    the best for wednesday's appt. waiting for my 2nd surgery on

    my mitral so 16 years between my aortic mech and now i need mech

    mitral i never had and it is normal as to be scared but the waitings

    worse than surgery itself ....you will be fine.

    Keep us posted on dates and your wed appt.........GOOD LUCK

    zipper2 (DEB)
    zipper2(DEB)



    AVR March24th 1992 (Carbomedic Valve)
    MVR January20th 2009 (St Jude)
    INR home testing with coagucheck xs:):)

  22. #22
    Join Date
    Aug 2008
    Location
    Austin, Texas
    Posts
    12

    Default

    Thanks everyone for the kind words and encouragement. MrP, Thanks for the comments on Dr. Coselli, I am feel less stress about working with a surgeon.
    My appointment with the Austin surgeon was moved to tomorrow at noon. I will update everyone when I return to work on Saturday, (my home computer is blocked from this site). I have just started telling my friends and family about my new situation and my spouse is in shock. My 18 yr old looked very serious and said “not again dad!” then hugged me. Wow! Usually he is so focused on video games, pizza and the computer – I rarely get his attention.

  23. #23
    Join Date
    Jun 2007
    Location
    Native New Englander living in Austin, Texas
    Posts
    383

    Default

    Best wishes for your appointment. It sounds like all the planning is coming along well with effective and caring providers.

    I'm sure the personal conversations won't be the easiest, but it sounds like you have a nice, supportive family. All the best and looking forward to hearing about a great outcome,
    --Brad
    Ross procedure, Oct 2007, by Dr. John Oswalt at the Austin Heart Hospital

  24. #24
    Join Date
    Sep 2008
    Location
    San Fernando, CA
    Posts
    1,757

    Default

    Quote Originally Posted by ScottinAustin View Post
    Thanks everyone for the kind words and encouragement. MrP, Thanks for the comments on Dr. Coselli, I am feel less stress about working with a surgeon.
    My appointment with the Austin surgeon was moved to tomorrow at noon. I will update everyone when I return to work on Saturday, (my home computer is blocked from this site). I have just started telling my friends and family about my new situation and my spouse is in shock. My 18 yr old looked very serious and said ?not again dad!? then hugged me. Wow! Usually he is so focused on video games, pizza and the computer ? I rarely get his attention.
    Good Luck to you Scott, it seems you have all your ducks in a row. I know your family will be there for you, yes even that 18yr old. Just when you think they aren't paying a bit of attention, they surprise you. Again, wishing you all the very best.
    Chris
    Livin' Life At A Snail's Pace
    AVR May 19, 2008
    Edwards LifeScience Bovine Pericardial

  25. #25
    Join Date
    Nov 2008
    Location
    Meridian Idaho
    Posts
    52

    Default Knew it was coming for 35 years

    Hi Scott

    I was diagnoses with a bicuspid valve during my junior high school football physcial..in 1975. I was always told I would have to have it replaced someday but I was essentially without symptoms. I led a pretty active life and was almost as shocked as you when the doctor said we need do to replace it now...very scary, even with a lifetime to prepare. It was 62 from the time my cardiologist told me we need to replace the valve within 30 days and the time they acutally did it. The waiting drove me, and my so, crazy.

    Anyway I am now 9 days out of surgery and feeling great, better than I should for my own safety.

    For me the waiting was definitely the hardest part. Good luck..so far.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •