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Thread: Aortic root dilatation after Ross

  1. #1
    Paula (from Finland) Guest

    Default Aortic root dilatation after Ross

    I think it has been at least five or six years since I wrote to this forum last time, then my username was Paula (in Finland).

    Little bit history first: I had a major heart surgery "Ross procedure" in December 17th, 2002 and was back home on Christmas Eve. Then my aortic valve and aortic root was replaced with my own pulmonary valve + root and to the pulmonary position I got homograft (as most of you may know of course). Now after almost 7 years of worry-free living I am facing a new open heart surgery again to replace a dilated section of my aortic root.

    What I?d like very much to know if there is somebody else in similar situation, somebody who have had ?Ross prodecure? done and do have or have had also aortic root dilatation? What kind of surgery those persons have had to get the dilated aortic root repared after Ross? I would like to know specially if there is any change of valve-sparing prosedure after Ross?

    The dilation is life threatening, because of the risk for aortic rupture! The aortic root wasn't dilated seven years ago when they did the Ross. When I was tested 6 months ago the dilation was 49 mm and I quite sure that it may have generated 1 mm more now and was 50 mm when I was tested last week. I have have understood that the 50 mm is the limit when they do the surgery in my case, because I had congenital aortic stenosis (of course there is different opinions what is the optimal time for surgery).

    It is somehow worse now to get ready for the new surgery, because I know what to expect! It is very difficult (as it was also before the first surgey) to motivate myself that I relally need this surgery, because I feel that there is nothing wrong with me and I am in a perfectly good condition. I don't ever have had anykind of heart attack or any pain. I learn it last time that after the surgery I needed to start all over again... for instance, I have to parctice breathing and I needed all my strenght to walk few meters and had some post surgery complications as bad arrythmias and my whole body was in some kind of drowse ... of course I feel lucky that God let me survive the surgery in a first place....

    Sorry to be so depressing this time, but the knowlege of a new surgery is number one in my life at the moment. I have had more tests now in March, magnetic imagine, ultrasonograbhy, angiography etc... and I will see my cardiologist next week on Tuesday, March 23, 2009.

    Otherwise I'm also very confident, because I know that the medical care, espesially heart (cardio)surgery, in Finland is very high-graded and it is also completely free to every Finnish citizen.

    All this once again reminds me how important the health is and make me to arrange the priorites in my life. Despite of all this I'm going to play tennis and badminton and try to live normally, but of couse I need to avoid extra stress, for instance lifting hevy objects is not recomended.

    In other parts the sun is shinig in my life. I got married last September and I'm very happy with my husband, he is really the man of my dreams...

    Please, remember to enjoy every minute of you life, you know life itself is the most threasured thing of all!

    Regards,
    Paula (from Finland)

  2. #2
    Join Date
    Jan 2008
    Location
    Limassol, Cyprus
    Posts
    71

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    Hello Paula.
    This is just to say that your message brought back all those bad memories and reminded me all those diffucult months that followed my OHS.
    Please continue to have faith in God and yourself and be certain that everything is going to be fine.
    Best Wishes
    Petros

  3. #3
    Bridgette Guest

    Default

    Good luck Paula. I don't have any advice but I wish you the best for your surgery.

    Bridgette

  4. #4
    Join Date
    Dec 2001
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    On The Hot Seat
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    25,981

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    I can't say that I know of anyone that has had the surgery as of yet, but Ben Smith is being watched, so perhaps he'll have something to add.

  5. #5
    Curtsmum Guest

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    Sending hugs and wishing you the very best.

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

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    Welcome Back Paula ! I remember your earlier posts.

    By "dilation" of the Aorta, I *assume* that is the same as an Aortic Aneurism and yes, 5 cm (50mm) is a common guideline for repair/replacement.

    I wonder if your original Aortic Valve was BiCuspid?

    The reason I ask is that Connective Tissue Disorder (which often results in Aortic Aneurisms) is often associated with a Bicuspid Aortic Valve.

    You may find reading through the extensive posts in the Bicuspid Aortic Valve and Connective Tissue Disorder Forum to be informative. Some of our members have posted CT Images of their dilated Aortas in that Forum which you may find of interest.

    And YES, you definitely want your 'dilated aorta' Fixed BEFORE it Ruptures! The survival rate for a Ruptured or Disected Aorta is VERY SMALL (on the order of 5%). Our Moderator, Ross, is a member of that exclusive group of survivors. Ask him, you DO NOT want to go there!

    The Good News is that your condition was diagnosed BEFORE it became Critical and in time for you to get it repaired.

    'AL Capshaw'

  7. #7
    Join Date
    Dec 2002
    Location
    Chicago, Illinois
    Posts
    508

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    Your first surgery was just before mine, which was December 20, 2002. We came home on the same day, Christmas Eve. My surgery was a David type valve sparring procedure during which my ascending aortic aneurysm was fixed, and I kept my valve. You present an interesting question, can the David type valve sparring procedure be done after the Ross where there is an ascending aortic aneurysm. I am not a doctor, but it seems to me that if the valve that is in the aortic position today is fine, then perhaps so. The valve sparring procedure is intended for those with aneurysms in the ascending position, but with a normal aortic valve. Have you discussed this with your surgeon? If and when you do please share the answer. I do not think anyone has asked that specific question before. Good luck to you as you go forward and face this.
    Tom F.

  8. #8
    Join Date
    Apr 2007
    Location
    oklahoma city
    Posts
    179

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    I cannot say that I have heard of anyone posing that question before. Like Tom F, I am assuming that your aortic valve is functional. If so, then one wonders why it couldnt be used again and positioned within the dacron graft. I have to wonder if scar tissue may play a role in harvesting the valve.
    Like you, I knew that I absolutely needed the surgery for my 6 cm ascending aortic aneursym but I had a strange dialogue in my head regarding having to have surgery and, in essence, becoming 'sick' when I really felt well in the first place. I wish you well. My father used to tell me when I was younger and going through some crappy things that I would just have to "get mean with it." Meaning, after you grieve a bit about what you having to endure, you gotta get focused, get ready, and get mean and tough with your recovery. And you will recover as you did the first time.
    Please let us know what you doctor says.
    aortic aneursym surgery and aortic valve sparing procedure (David procedure) with one vessel bypass 5/14/07

  9. #9
    Join Date
    Mar 2009
    Location
    Stockholm Sweden
    Posts
    63

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    I would assume that this depends on how the scar tissue looks after the Ross procedure. I know one other person in Sweden who had a graft after a Ross without replacing the aorta valve.

    In any case, as one of the few survivors of a dissection and beginning of a rupture (it went in the direction towards the heart, which was what saved me, just a small tear before they had opened) I really do not recommend anyone to postpone a surgery. Do it as soon as it is recommended by the doctors.

    I had myself absolutely no symptoms and ran a half marathon just a few weeks before the emergency surgery.

    ::gustaf

  10. #10
    Paula (from Finland) Guest

    Default Thanks for your tip

    Quote Originally Posted by Ross View Post
    I can't say that I know of anyone that has had the surgery as of yet, but Ben Smith is being watched, so perhaps he'll have something to add.
    I already read some posts from Ben Smith....

  11. #11
    Paula (from Finland) Guest

    Default Ascending Aortic Aneurism

    Quote Originally Posted by ALCapshaw2 View Post
    Welcome Back Paula ! I remember your earlier posts.

    By "dilation" of the Aorta, I *assume* that is the same as an Aortic Aneurism and yes, 5 cm (50mm) is a common guideline for repair/replacement.

    I wonder if your original Aortic Valve was BiCuspid?

    The reason I ask is that Connective Tissue Disorder (which often results in Aortic Aneurisms) is often associated with a Bicuspid Aortic Valve.

    You may find reading through the extensive posts in the Bicuspid Aortic Valve and Connective Tissue Disorder Forum to be informative. Some of our members have posted CT Images of their dilated Aortas in that Forum which you may find of interest.

    And YES, you definitely want your 'dilated aorta' Fixed BEFORE it Ruptures! The survival rate for a Ruptured or Disected Aorta is VERY SMALL (on the order of 5%). Our Moderator, Ross, is a member of that exclusive group of survivors. Ask him, you DO NOT want to go there!

    The Good News is that your condition was diagnosed BEFORE it became Critical and in time for you to get it repaired.

    'AL Capshaw'
    Yes, I have ascending aortic aneurism and my valve was originally Bicuspid. I don't have that Connective Tissue Disorder -disease, but thank you for the tip I will read those posts....

  12. #12
    Paula (from Finland) Guest

    Default

    Quote Originally Posted by tcopel View Post
    I cannot say that I have heard of anyone posing that question before. Like Tom F, I am assuming that your aortic valve is functional. If so, then one wonders why it couldnt be used again and positioned within the dacron graft. I have to wonder if scar tissue may play a role in harvesting the valve.
    Like you, I knew that I absolutely needed the surgery for my 6 cm ascending aortic aneursym but I had a strange dialogue in my head regarding having to have surgery and, in essence, becoming 'sick' when I really felt well in the first place. I wish you well. My father used to tell me when I was younger and going through some crappy things that I would just have to "get mean with it." Meaning, after you grieve a bit about what you having to endure, you gotta get focused, get ready, and get mean and tough with your recovery. And you will recover as you did the first time.
    Please let us know what you doctor says.
    Both my aortic valve and pulmonary valve are functional, the doctors said that I'm in optimal post surgery condition after Ross, except the aneurysm...

  13. #13
    Paula (from Finland) Guest

    Default

    Quote Originally Posted by Tom F. View Post
    Your first surgery was just before mine, which was December 20, 2002. We came home on the same day, Christmas Eve. My surgery was a David type valve sparring procedure during which my ascending aortic aneurysm was fixed, and I kept my valve. You present an interesting question, can the David type valve sparring procedure be done after the Ross where there is an ascending aortic aneurysm. I am not a doctor, but it seems to me that if the valve that is in the aortic position today is fine, then perhaps so. The valve sparring procedure is intended for those with aneurysms in the ascending position, but with a normal aortic valve. Have you discussed this with your surgeon? If and when you do please share the answer. I do not think anyone has asked that specific question before. Good luck to you as you go forward and face this.
    Both my aortic valve and pulmonary valve are functional, the doctors said that I'm in optimal post surgery condition after Ross, except the aneurysm...
    I will see my cardiologist tomorrow but hope that I'm able to speak with a surgeon quite soon and be able to ask is that David procedure, which you did mention, suitable for me too....

  14. #14
    Paula (from Finland) Guest

    Default Thank you for this important knowledge...

    Quote Originally Posted by gustaf View Post
    I would assume that this depends on how the scar tissue looks after the Ross procedure. I know one other person in Sweden who had a graft after a Ross without replacing the aorta valve.

    In any case, as one of the few survivors of a dissection and beginning of a rupture (it went in the direction towards the heart, which was what saved me, just a small tear before they had opened) I really do not recommend anyone to postpone a surgery. Do it as soon as it is recommended by the doctors.

    I had myself absolutely no symptoms and ran a half marathon just a few weeks before the emergency surgery.

    ::gustaf
    Thank you for that important knowledge that the valve sparring surgery is possible after Ross at least in some cases. Do you really know that person well to whom that surgery was done? Can he/she write to me? My emal address is paula.bollstrom@metso.com. I prefer writting in English but I can read also Swedish.

    You also engouraged me to have that surgery done rather that wait a little bit more... That was quite awful what happened to you. I need really consider that surgery soon also because I even have more weakened aortic tissue that normally because I had that concenital bicuspid valve...

  15. #15
    Paula (from Finland) Guest

    Default

    Thank for you all who wrote to me. I will write more after I have met my cardiologist tomorrow and know what they have decided....

  16. #16
    Join Date
    Jan 2004
    Location
    NC
    Posts
    1,842

    Default

    Boy how quickly people forget.

    Paula...I started a thread that is currently 3 spots under your thread called "5 year rossiversary".

    http://www.valvereplacement.com/foru...ad.php?t=29941

    I had mild aortic root dilation of 3.7cm 2 years ago. Last year the echo tech got a measurement of 4.0cm. My cardiologist sent me back to the echo lab to have his most senior tech do another pass on my aortic root and he got a 3.8cm reading. I had my annual appointment 2 weeks ago and the echo showed an aortic root dilation of 4.3cm. My cardio is sending me to have an MRI done a week from today (Tuesday) to get an exact measurement. If it comes back under 4cm I'm not going to worry about it. If it comes back over 4cm then I think I will call my surgeon and ask him his opinion on how long to wait and how viable it would be to go in and wrap some dacron around around the aortic root and save the aortic valve.

    Anyway I just wanted to let you know that there are fellow "rossers" out there that are experiencing this issue. I believe that most if not all RP's today include the dacron wrap around the aortic root to protect it from dilating. It's one of those things where surgeons learn how to improve the surgery the linger the surgery is
    VSD Repair & Ross Procedure 3/17/04 - Dr. James Jaggers
    Bentall Procedure 2/22/11 - Dr. G Chad Hughes
    Both performed at Duke University Medical Center

  17. #17
    Paula (from Finland) Guest

    Default

    Thanks for you post... it is harmfull that the surgeons did not add that dacron graft around our aortic roots, it's good though that they do it nowadays for new patients.

    Yes it is true that people do forget easily and here is so many new post comming everyday. I try to keep in my mind specially those people who took time and wrote an answer to my post and I will read your post "5 year rossiversary" now too. I didn't know that there even is such a words as that or "rossers" you are here so inventive!

    I'm a littebit worried what they say to me today...

  18. #18
    Join Date
    Aug 2008
    Location
    Calgary, Alberta, Canada
    Posts
    342

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    Hi Paula and everyone,

    I too have just recently discovered that I have an aortic aneurysm as well, following Ross Procedure in 2005.

    Had echo in Feb 2008, then another in May 2008 (pre-surgery visit for having sternal wires removed) where it was discovered quite by accident.
    In Feb 08 it was measured at 3.9 cm, and after CT scan in June 08 was confirmed to be 4.6 cm.
    I had to wait to hear from the anesthetist (!!) that something was actually wrong. My cardiologist wanted to talk to my surgeon first.

    We will be doing an MRI in June 09 to determine its current status, as it will have been a year since last scan at that time. Needless to say I'm a bit nervous, since 0.7 cm seems like a lot of growth in the span of 6 months!

    So Paula, I do share your anxiety a little bit, but like you, I am trying not to worry about it too much and live as normally as possible until we find out where it's at.

    I hope you'll let us all know how it went with the cardiologist!

    Take care
    Melissa
    Melissa L
    Congenital Aortic Stenosis w/ BAV - AV Repair ('85)
    AV Replacement - Ross Procedure ('05), Sternal Wire Removal ('08)

  19. #19
    Paula (from Finland) Guest

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    Quote Originally Posted by Sue View Post
    Dear Al

    That is most interesting because I've just found I have a bicuspid aortic valve and an aortic root aneurysm measuring 4.8/9 which is double dutch to me but may mean something to others out there. I need two valves replaced at the same time so it will be tricky I reckon.

    Hello Sue,

    I have understood that a biscuspid aortic valve and an aortic root aneurysm are easier to fix if those can be done in sametime and your tissues are in native condition (no previous surgeries). Good luck to your surgery.

    Paula (from Finland)

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