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Aortic Aneurysm Support Group

  • 1.  Aortic Aneurysm Support Group

    Posted 06-18-2017 10:54
    Mended Hearts Community,
    30 days ago, I had aortic arch surgery at NYP Weill Cornell Medical Center to repair a aneurysm of the aortic arch. Although over 500,000 bypass surgeries are performed each year, less than 15,000 are aneurysm surgeries. 

    If you've been diagnosed with an aortic aneurysm or are survivor of aortic aneurysm surgery, I'd like to connect with you by email.
    Please include your age, year of surgery and if you completed rehab.
    Thanks,
    Vic
    Victor Fabry
    --
    Vic Fabry
    MHoMC, President
    Greylock Group, CEO


  • 2.  RE: Aortic Aneurysm Support Group

    Posted 06-19-2017 05:39
    I had surgery for an aortic branch aneurysm and a bicuspid aorta in 2006. I am now 64 and wasn't prescribed rehab. I ended up getting a branch replacement (the surgeon's original plan was to repair) and a mechanical valve. BTW my mother had the same condition and died at 51.

    Karen Christian
    Kchristian@nctg.com

    ------------------------------
    Karen Christian
    San Marcos CA
    ------------------------------



  • 3.  RE: Aortic Aneurysm Support Group

    Posted 06-20-2017 11:33
    Hello Vic. I had aortic aneurysm branch repair and aortic valve replacement surgery due to Bicuspid Aortic Valve and stenosis in 2010. I was 45 at the time of my surgery. Three years later I had double bypass surgery due to blockage caused by the BAV/anuerysm surgery. I did not go through cardiac rehab for either surgery. However, in 2016 after I had gone through a year of cancer treatment my cardiologist felt it would be beneficial to go through rehab. I had 36 sessions. I now recommend rehab for anyone going through heart surgery. I thought I was doing well enough on my own after my surgeries but realize now I really needed lots of support and instruction from a licensed coach. I will be having another procedure soon to repair mitral valve regurgitation and I am hoping to be able to go through cardiac rehab once again.

    ------------------------------
    Brenda Williams
    Cabot AR
    (501) 843-4727
    ------------------------------



  • 4.  RE: Aortic Aneurysm Support Group

    Posted 06-20-2017 12:06

    I too had a bicuspid aorta valve and an aortic branch aneurysm.  My surgery was in December 2013.  They prepared me for a valve replacement, but the valve had not calcified so did not merit a valve replacement.  The aneurysm was repaired by the "David's Procedure", which ties into the aortic valve.  You can read more about it and watch a video by googling "David's Procedure".  I did attend cardiac rehab and contribute my recovery to that.  Was very active prior to the surgery so was not excited about going, but it was the best thing I ever did.  I had some "hiccups" along my initial recovery, because I was allergic to two of the medications they were giving me.  I did experience Post Surgery A Fib and got blood clots in my legs and behind my eye within the first 2 weeks after surgery.  After they got the water pulled off of me and had a cardio version to get me back in rhythm, I've been great.  In fact, I went cross-country skiing 5 weeks post-surgery.  Of course, I stayed on the easy trails and took it slow, but I was out there!  While in rehab an opportunity came my way to volunteer for a program that I needed to be able to walk a mile and run a mile.  I could walk the mile no problem, but I never had been a runner.  One of the nurses and cardiac rehab worked with me, and I met my goal of running the mile and being able to volunteer for the program the June following surgery.  I've never had any further problems, but I follow the cardiac diet closely and exercise is a priority for me.  After several weeks of cardiac rehab, it dawned on me, that I too was a "heart patient" and always would be.  It was up to me to do everything I could to protect that valve. 

     

    I was told at time of surgery that according to the size of the aneurysm, they estimated that it would have burst in about 6 weeks.  I'm one lucky lady, especially since my surgeon said that the murmur was so slight, that most cardiologist would have just watched it.  It was my primary doctor who had experienced the same thing a year earlier that detected the problem.  I will be eternally grateful.

     

    I live in Boise, Idaho and am part of Chapter 380.

     

    In Joy and Gratitude

     

    Elaine Grossaint

    (208) 375-2408 wk

    (208) 866-2469 cell

     






  • 5.  RE: Aortic Aneurysm Support Group

    Posted 06-20-2017 01:21
    Victor, my name is Steve Balashek, sbalashek@bresnan.net. I had an aeortic aneurysm caused in part, by having a bicuspid valve that also became stenotic. I received my new dacron aeortic arch and a tissue valve on 30 November 2015, 9 days before my 69th birthday. The operation was performed by Dr. Brett Reese and his team at the University of Colorado Hospital at the Anschutz medical campus  (formerly Fitzimmons Army Hospital) in Aurora, Colorado. I was released on Saturday, 5 Dec, primarily because we did not have transportation on Friday. On Thursday, Friday and Saturday I walked at least 1 mile around the halls of the ward, each day. On the following Monday I attended the Mended Hearts Christmas pot luck in Cheyenne, Wyoming where I live. After the 6 week no drive period my wife and I went down to Las Vegas to avoid the snow and prevent me from doing something stupid, like trying to shovel. After our return to Cheyenne in April, I was able to resume attending phase 3 rehab which I had been in since my double bypass in August 2009. I am now back up to doing rehab 3 days per week and walking 4 to 6 miles on the other days. A week and a half ago I walked about 16 miles as part of local Relay-for-life activities.
    I can not emphasize enough the importance of rehab. I tried the no rehab route about 6 months after my bypasses when I figured I could do it alone using the facilities on FE Warren AFB. It was too easy to not go, and there was no support. After I got my stent in November 2010, I went through phase 2 rehab again and then started going to phase 3 sessions regularly. I am pretty sure that doing that rehab helped me recover more rapidly after my aortic arch and valve surgery. I do not think cardiac rehab ever really ends, or at least it shouldn't.


    Sent from my Galaxy Tab® A





  • 6.  RE: Aortic Aneurysm Support Group

    Posted 07-08-2019 03:37
    Hi Vic
    my name is Laura.i live on Staten Island and I will be 69 years old tomorrow. On May 28 a 4.3 cm aneurysm of the aortic arch was found when having a routine chest X-ray. We were leaving for  cruise to the Bahamas 2 days later and I was panicked that I might explode. I actually got in to to see the cardiologist the next day. He did his own echo and found it to be slightly smaller. He recommended a recheck in 6 months. I have no symptoms. I never smoked, don't drink and do not have high cholesterol, hypertension or diabetes and no family history. Being a retired nurse I started my research and found an aortic aneurysm program at NYU and have an appointment tomorrow on my birthday. Most health care professionals I've talked to have all said to do the surgery now while it's manageable and I'm "younger"  Needless to say I'm terrified! Who does elective heart surgery? I have a 20 year old that I adopted when he was 6 and I need to see him thru 3 more years of college. I have a 2 year old granddaughter I need to see grow up.
    My questions for you are how large was your aneurysm. How do you feel now. How about you fill me in on your whole story from point if discovery to today. We're you ever told you could die during surgery. How long were you in hospital. Was it open chest surgery or endovascular.. Did you go to rehab. In other words if you choose to disclose all on a public forum, please do so for me.
    i hope your feeling better. You look very healthy in your hospital gown in bed.

    ------------------------------
    Laura Calamuci
    Teacher
    retired
    Staten Island NY
    ------------------------------



  • 7.  RE: Aortic Aneurysm Support Group

    Posted 21 days ago
    Hello,  My name is Jeff and I might be able to put your mind at ease. In 1989 they found an aortic aneurysm and in 1990 was medically discharged from Army. Then by May 1991 it had grown to 5.5 cm. It was time for surgery. I chose the Medtronic hall conduit valve vs pig valve and was told it would last a long time, perhaps the rest of my life without having to be changed out.  Well it's now 2019 and over 28 years post surgery. I still have the same valve. The only thing that has happen along the way is in November 2008 I started having Afib. Finally after many episodes of Afib, finally in May 2009 they put me on Flecainide. Haven't had Afib since.  I can't believe the valve has lasted this long. God is good. I do have annual echocardiograms and I like seeing the look on my Dr's face when they realize how long ago my surgery was.  In closing I would like to wish you well, and YES heart surgery can and is scary, but putting it off can be scary too. Only you can make the decision to have surgery.  Just a added note in 2011 I had a neck fusion surgery and had to wear a neck brace for 6 weeks. I  thought that was worst than my heart surgery.Also for you others that might see this . Yes I have been on warfarin since May of 1991.  Hope this helps, and God be with you.

    ------------------------------
    Jeffrey Dawson
    retired
    ------------------------------



  • 8.  RE: Aortic Aneurysm Support Group

    Posted 21 days ago

    Jeff,
    You are very fortunate indeed. If you've had the mechanical valve for 28 years, you were a relatively young man to have valve surgery.
    I had aortic aneurysm surgery in 2007, and at that time it was common to replace the aortic valve during the procedure.  Today, surgeons have developed techniques to "save" the heart valve during aneurysm repairs.  My Afib is managed with two meds and of course, I take Coumadin to reduce the chances of blood clots. We are both lucky men.
    all the best,
    Vic Fabry
    Short Hills, NJ 



    ------------------------------
    Victor Fabry
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------



  • 9.  RE: Aortic Aneurysm Support Group

    Posted 20 days ago
    Hi to all! I had AA surgery in January 2019. It was 5.0 but surgeon said it was bigger (6.0) once he opened me up. I have a friend who had one and didn’t know until it ruptured. She was so fortunate that she got to the hospital in time. Her story made a big impression on me, and I chose to get it done when the docs gave me the go ahead.
    I am doing great, and feeling stronger than ever due to the cardiac rehab. I continue doing the training at my local YMCA. I will send a pic from the Rehab center at Scripps Memorial. I feel so fortunate they found the AA when looking at something else.
    Prayers for peace of mind are sent your way.




  • 10.  RE: Aortic Aneurysm Support Group

    Posted 07-09-2019 10:58
    I had aortic root and aortic valve replacement surgery in 2015 at age 66.  What initially was thought to be a 4 cm aneurysm turned out to be 9 cm.  In my case, I was fortunate to be in very good health going into the surgery.  Over 19 months in 2012-13, I dropped 130 lbs,  At the time, I thought I was doing it in preparation for a 2013 anniversary trip to Hawaii, but it turned out to be a Godsend 2 years later.  All went well with my surgery, and I completed 13 weeks of Phase III cardiac rehab immediately after. Following Phase III rehab, I began Phase IV, which is an ongoing exercise program in the hospital rehab gym, two 2 times per week, in addition to my regular daily activity.  I've returned to a completely normal life since the surgery.  Because of elevated blood pressure at times, my doctor suggests that I not lift more than 10 lbs. per arm - as he puts it, those stitches will only stand so much pressure - but to be honest, that's not possible with my work and volunteer activities.  Thanks to all of you who have shared your experiences.

    ------------------------------
    Tom Hilgers
    Salem OR
    ------------------------------



  • 11.  RE: Aortic Aneurysm Support Group

    Posted 09-22-2019 16:50
    Dear Tom and everyone who went through the OHS. I need your help. I am 50 y.o. and a year ago was diagnosed with 4cm aortic root aneurysm. In one year it has progressed to 4.4cm. I am terrified that with this speed I will have to do an elective surgery very soon. Your stories can help me to prepare myself to what to expect. Please share. Step by step. What to ask, what to expect, how did you feel at one or another point. Who was your doctor.  I am so scared that is ready to give up a surgery.

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------



  • 12.  RE: Aortic Aneurysm Support Group

    Posted 09-23-2019 08:36
    Hi Elena-
    First of all, I'm sorry to hear about your situation.  I have been doing a lot of research on AA and I see your in Worcester.  I am scheduled for a second opinion at Mass General in Boston.  They are top of the field and very highly rated.  Setting up the 2nd opinion is really easy.  You can do it online.  They get back to you in 48hrs.  You send your cardio's notes and CT/MRI results and they schedule you with the appropriate physician.  I hope you don't need the surgery, but if you do, you can feel confident in that they do over 250 of these surgeries a year so they are very experienced.  They, like all the major hospitals, have a full team of drs, nurses, and all different types of therapists to support you through the process.

    It is such a wonderful thing to have this support group to talk with but you should also ask the professionals all of your questions and they can guide you based on your unique circumstances.  I know it is scary, but there is power in knowledge.  Ironically, and very sadly, my husband is at a funeral today for the paraprofessional in his classroom who just passed away from this.  We may be unlucky to have AA, but we are lucky to know about it and be able to be empowered to learn and make our own choices. 
    Best of luck to you!   Michelle  





  • 13.  RE: Aortic Aneurysm Support Group

    Posted 09-24-2019 19:39
    I'm sorry to hear about your situation. Bear in mind, that you are lucky to know about it. This gives you the upper hand, as scary as it is. Now you are in control.  It's better to know and plan an elective surgery than to have a rupture and a race against time and hope you are close to a facility that can handle it.   Keep the faith. You will do fine and you will be the next member to reassure a future patient.  Keep us posted. You have a lot of people cheering you on.
    Annette Smith.

    ------------------------------
    annette smith
    saxonburg PA
    ------------------------------



  • 14.  RE: Aortic Aneurysm Support Group

    Posted 09-23-2019 12:39
    Hello Elena,
    All of us that have had heart surgery have had different reactions at different times. I can only speak for myself and say no matter what the tests say, stay positive! Finding these things early is always better than finding them late. 
    Everyone I have ever talked to about their medical status that has had a positive attitude got thru it faster and easier than those folks that feared everything. Try and find the positive side of all the tests. Use those feelings to guide your healing process. 
    Some folks said it was their faith in God, others said it was their sense of humor, one lady even told me it was dumb luck that led to her having surgery and saving her life and all she could do was smile and be happy about that.
    If you use the information you receive from your doctors and other sources to learn more about your condition it will not seem so scary. 
    All of us on this forum are here for you as well. You are not alone and you can ask any question at any time. If we can help resolve concerns early they don't grow into major fears later. ☺
    Take care and keep us posted.

    Richard Short
    Chapter 395





  • 15.  RE: Aortic Aneurysm Support Group

    Posted 09-23-2019 20:10
    Dear Michelle and Richard. Thank you for your feedback! It really helps to know that I am not alone in this world with this issue. Last week I contacted Cleveland Clinic. I am sending them all my medical records and images now. Seems this clinic is the best in the field. I have a root aneurysm which is not easy to fix. Life is turned upside down in one day.  So sad... I was buttling severe pain for 2 long years previously and it took me years to get better. I dont know if I have  stamina to go though the pain again. You are right about positive thinking, but where can I get it from now? Everything is blick now. Do not know how to accept this diagnosis and move forward with it. It is funny, but I am afraid of pain and being crooked more that to be dead. Weird.

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------



  • 16.  RE: Aortic Aneurysm Support Group

    Posted 09-24-2019 10:01
    Hi Elena,
    My situation is a bit different, but I am facing OHS tomorrow for the second time in less than 6 years.  They will be replacing my St Jude aortic valve with another valve and fix my aortic root.  My "numbers" doubled from January to August, so this surgery came up pretty fast.  Second opinions are always a good idea for your ease of mind and decision to move ahead with surgery.  Fear does not allow you to move forward if you stay behind it.  Make the decision to Do it Scared anyway - move forward and look forward to your life when the pain subsides.  It will!  These things are temporary challenges in life for there are many great memories to be made with loved ones, friends and beautiful strangers you have not encountered yet!  Reach out to family and friends and ask for prayers and support.  Knowing others are rooting for you is incredibly uplifting!
    Cheers!






  • 17.  RE: Aortic Aneurysm Support Group

    Posted 09-24-2019 11:10
    Hi Rani,

    Thank you so much for your post! You are so brave and wise.  My thoughts and prayers are with you. I wish you a full and fast recovery.  It is too bad you have to have another OHS. I am wondering why though? Something was not done right during the first OHS?  Please let me know at what hospital you are and if you need any help. I am willing to help with whatever I can. My hugs and prayers. I hope all will go well tomorrow.

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------



  • 18.  RE: Aortic Aneurysm Support Group

    Posted 10-04-2019 12:18
    Hi Elena,
    Surgery went well for my aortic valve replacement round two.  Nothing was wrong with my previous surgery.  My body just attacked the valve and I had quite a build up of scar tissue.  I am pretty young with a great immune system so I guess my body beat up the new valve.  

    The second aortic valve became stenotic and had to be replaced.  I am in the 2% of this kind of thing.  Alas. Good news is the replacement surgery was successful.  I have a bigger valve this time which should help in the future and potential TAVR next round.  Pain is manageable with medication.  Not fun, but diminishing each day.  The lesson learned from last time is get a recliner.  I have one this time and it is incredibly helpful!  Walking also helps a great deal.  Movement is great medicine!   

    You are not alone in your situation.  This forum is a really good source of support as well as a local Mended Hearts group if you can find one.
    Best of luck!





  • 19.  RE: Aortic Aneurysm Support Group

    Posted 10-04-2019 16:14
    Hi Rani,

    Glad your surgery went well! Fast and full recovery!  I am looking for a recliner too. Everyone said it will be my best friend after the surgery. As well as the little pillow.

    I talked  with several people from Mended hearts over the phone. So helpful!  Thank you Rani  for your posts and positivity too.

    I know hugs hurt now so I am sending you my virtual hug. ❤

    Get better soon,
    Best,
    Elena

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------



  • 20.  RE: Aortic Aneurysm Support Group

    Posted 10-06-2019 12:04
    Dear Elena:  Just wanted to drop you a note of thanks for sharing your experience.  I have been followed for bicuspid aortic valve for almost 40 years, which I understand is very rare to know for so long..  Pretty much ignored it other than annual cardiology appointment and imaging.  Starting about 18m ago, my aneurysm started growing steadily - and my cardiologist referred me for surgery a couple months ago.  I am scheduled for valve replacement and aneurysm repair at Cleveland Clinic late this year.  I was shocked at how quickly this progressed, I have been pretty ignorant about this disease, and the surgery, until now.  All I know to do know is to press through it and try to make this process as easy on the family as possible.  I'm sure it won't be enjoyable.  My thoughts are with you!  Happy to trade experiences as we go down this road.  Regards,  Keith

    ------------------------------
    Keith Binka
    TX
    ------------------------------



  • 21.  RE: Aortic Aneurysm Support Group

    Posted 10-06-2019 12:30
    Hi Keith,

    Who is your surgeon at Cleveland Clinic? Mine is Dr. Svensson. I am also looking at a possibility of PEARS procedure in London as I do not have a valve issue (at least for now). Sent all my images to both places and awaiting for an appointments (or phone calls) from both doctors.
    The elective surgery is much better than an alternative so will keep our fingers crossed.
    Best,
    Elena

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------



  • 22.  RE: Aortic Aneurysm Support Group

    Posted 09-24-2019 16:41
    Dear Elena,
    You seem to be looking for something to be going wrong. Some of us have to have several surgeries because things are going right. Problems are being caught and fixed. The body is not a statue that just sits there. We catch colds and sometimes that leads to the flu and sometimes that leads to pneumonia. But mostly it is just a cold.
    You said you were looking for something to be positive about. I look ad my Granddaughter and I get happy. I choose to be happy and try to look for the positive outlook of every problem. 
    You can think about the next birthday for a child, you can think about the big giant lobster dinner you are going to spoil yourself with as soon as you can. Look for good things and you will find them. Look for bad things and they will find you. We are all looking forward to our futures. We have all been given second chances. Enjoy 

    Richard Short 
    Chapter 395





  • 23.  RE: Aortic Aneurysm Support Group

    Posted 09-24-2019 17:06
    Hi  Richard,

    It is hard to stay too positive with my past experience of an extreme and   excruciating pain for a long period of time (pretty much what cancer patient stage 4 have - this is what my doctor said).  With  unknown diagnosis. And when I just got better and start enjoying life - I am diagnosed with this.  I really admire your attitude. Hope to get there some how.

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------



  • 24.  RE: Aortic Aneurysm Support Group

    Posted 09-25-2019 09:35
    Hi Elena!
    i am seven months recovered from a thoracic aortic aneurysm. I feel much stronger physically and emotionally as a result of going through this experience. It can be scary when you think about the procedure and recovery.

    A friend gave me a cd called Guided Meditations for Successful Surgery by Belleruth Naparstek. I listened to it before and after surgery. I also asked for support and prayers from everyone I knew. I found love and support from my co workers and felt surrounded by love.

    You are strong and you can do this! You have a network of support, with Mended Hearts, who are living proof of recovery and full lives post surgery.Keep in touch!
    Andrea

    ------------------------------
    Andrea Broding
    School Psychologist Retired
    Santee CA
    ------------------------------



  • 25.  RE: Aortic Aneurysm Support Group

    Posted 09-12-2019 17:46
    Hi Vic-
    I'm 52 and in otherwise great health but was just diagnosed with thoracic aortic aneurysm at 4.2 cm.  I'm going to have another scan in 6 months to see if it is growing and how quickly.  Hopefully it isn't .  It's been really scary to learn about all of this on the internet.  The surgeon I met with was very upbeat and encouraging but it's so daunting to think about open chest surgery.  You look so awesome post surgery so you're definitely helping me feel better about that possibility!  I don't have any of the factors that are typical of causing this condition although I haven't had genetic testing yet.  No one in my family passed early but my uncle did have an aneurysm in his brain so I guess it's possible.  I'm definitely worried for my children and grandson so I'll have it done.  Sounds like you were at a great hospital and doing well.  I'm hoping to find a support group near me and it looks like there is a Mended Hearts close by so I've reached out to them.  Thanks so much for sharing your story!!  Best of health in recovery-  Michelle

    ------------------------------
    Michelle Pratt
    SOUTHWICK MA
    ------------------------------



  • 26.  RE: Aortic Aneurysm Support Group

    Posted 09-13-2019 06:22
    Michelle,
    It has been over two years since my open heart surgery to correct an aortic arch aneurysm at New York Presbyterian Medical Center. Here are a few observations from my experience and a recommendation about your medical condition.
    You are using the correct procedure by following up with your cardiologist for a echocardiogram and/or CT scan every six months.
    a. The first job of a cardiologist is to diagnose your condition and the second job is to identify the best cardiac surgeon for your condition. You must have complete confidence in his or his abilities.
    b. If and when aortic aneurysm surgery is necessary, your cardiology should identify the best surgeon available, at the best medical center.
    c. Research has found that a connective tissue disorder is a genetic link which increases a patients risk of an aneurysm.

    I'm heading to the Summit Y for exercise, so please excuse the short message. You can email me directly at fvfabry@gmail.com
    Best regards,
    Victor Fabry, President
    Mended Hearts of Morris County

    ------------------------------
    Victor Fabry, President
    Mended Hearts of Morris County
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------



  • 27.  RE: Aortic Aneurysm Support Group

    Posted 10-30-2019 14:02
    Michelle, I am sorry to hear about your aneurysm. I am 51 and mine was accidentally found after a CT scan I had because of an attack. I have a 5.4 ascending thoracic aortic aneurysm. I am at a loss on what I need to do. Surgeon said that it could be because of a bicuspid valve but I have No symptoms and no other health issues. Surgeon does not want to do surgery. He said he cant tell me what I should do, its up to me. If my valve is bicuspid then I am in the range for surgery and if its not we can wait until it reaches a 6.0. I asked if we can do a TEE to find out if my valve is bicuspid. His reaction was " If your goal is to get surgery sure'. I am so lost and don't know what I should do. I told him my goal is not to get surgery but to live... any advice is greatly appreciated.

    ------------------------------
    Ileen Cattani
    Education
    Roseville CA
    ------------------------------



  • 28.  RE: Aortic Aneurysm Support Group

    Posted 10-30-2019 14:42
    My experience with an ascending aortic aneurysm was that the condition was stable for a period but then expanded within a year. Schedule a regular consult with your cardiologist. They should recommend a periodic echocardiogram and CTA scan to watch the condition of your aneurysm.  If and when it's required, your cardiologist will be your advocate in recommending the best thoracic surgeon and Medical Center.

    ------------------------------
    Victor Fabry
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------



  • 29.  RE: Aortic Aneurysm Support Group

    Posted 10-04-2019 10:56
    Edited by Betsy Chervenak 10-04-2019 11:05
    Hello Vic and everybody-- I'm glad I found this site. My history: I had what they believe was a coronary artery spasm in 2012 (along with several ocular migraines). Cardiac cath was clean. Cardizem started and I haven't had another episode or spasm or ocular migraine. 2 weeks ago, I saw my cardiologist for my 6 month check up. While looking through my chart, he said, "Your aortic aneurysm is still small". I almost fell off the exam table and said "My aortic aneurysm????".  He said not to worry, it was small, and that we had discussed it before. I said this was the first I was hearing about it. I'm a retired nurse and I would know if a doctor said anything about my aorta. I was so stunned I couldn't question him more about it. He told me I would start having echos every 6 months instead of every year. He did not tell me any other things to do about it. He did encourage me to keep up with my exercise at the gym and work on losing weight.  I obtained my past echo reports and found the dilatation (I'm reading that's another term for aneurysm) of my aortic root and ascending aorta first mentioned in April 2018 with increase in size noted on April 2019 test. I have my next echo this month. I am so upset about this, that a change was noted 18+ months ago and I was not notified. Why wasn't another echo ordered for Oct 2018 if a change was noted in April 2018. I have history of anxiety and it is ramped up now.  My medical doctor looked at my reports and did have concern about one measurement and gave me the name of a thoracic surgeon to consult with. I'm going to attend a local cardiac support group next week to help me deal with this. Thanks for listening.

    ------------------------------
    Betsy C.
    N.Y.
    ------------------------------



  • 30.  RE: Aortic Aneurysm Support Group

    Posted 10-04-2019 11:51
    Betsy-  This is just staggering to hear that your Dr. knew and said nothing.  My dr. also referred me to a cardiac surgeon but didn't tell me about the aneurysm.  The para in my husband's classroom also had the same experience with her dr. not telling her and she had lost her mother to it!   I am so shocked that these are not discussed immediately.  FYI, depending on size of your AA, most medical professionals recommending not straining by lifting very heavy things (over 40 lbs)or shoveling snow due to the stress it could put on the AA.  Please keep up posted and take advantage of all that can be offered for your treatment, including counseling.  This could be very challenging for for people even without mental health concerns and we have to take are of ourselves in mind, body and spirit!  So glad you are a part of what I am learning is a fantastic support group!  - Michelle





  • 31.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2019 13:29
    Thanks Michelle for your support. I believe the past few days since being told of my problem have been of shock, denial, and anger. I am now ready to focus on the next steps on how to deal with this. Your helpful comments about snow shoveling and limit of pounds to lift are something I should have been told by the doctor. Thankfully, there wasn't enough snow last winter so I didn't jeopardize myself shoveling. Again, I'm glad I found this group.

    ------------------------------
    Betsy C.
    N.Y.
    ------------------------------



  • 32.  RE: Aortic Aneurysm Support Group

    Posted 10-04-2019 15:04
    Hi Betsy,

    I can relate. My aortic root was 4 cm last year and Dr. said that there is nothing to worry about as this is my "biology" and nothing needs to be dones. No CT scan, no siggestion to check my relatives. This year ECHO showed 4.4. I guess it is not my "biology" then. I transferred to another cardiologist. Just had  my CT today. My kids , sister and mom will be checked too. I learned that we will need to be our advocates. You cannot trust doctors blindly.

    Wish you the best , Betsy. Hope we all will be well.
    Sincerely,
    Elena

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------



  • 33.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2019 13:37
    Hi Elena- Thanks for your response. My doctor, after telling me that I had this problem, never said a word about what to do other than echos every 6 months. I was stunned, so I couldn't think of what to say. I've notified those family members that need to be checked. I'll make appointment to see cardiothoracic surgeon for a consult.  It's definitely a time to be in charge of ourselves and not depend on the doctors. Thanks.

    ------------------------------
    Betsy C.
    N.Y.
    ------------------------------



  • 34.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2019 16:53
    Hi Betsy,

    I understand you completely. Read my previous posts and you will see that I was in total shock myself  when I learned not only that  I have an aneurysm, but also that it is growing rapidly. Dr. told me nothing a year ago. This group is great. I talked to several people over the phone and it made a big difference.  My first CT is done yesterday, will see my new cardiologist in a week and already contacted two surgeons. We are aware about our issue and it gives us an advantage. I am not doing any heavy lifting and control my heart rate. Something I have never thought /done before. My family will get checked. I have time to prepare myself for the surgery physically and mentally. Please let me know if you want to talk. We are in the same boat.
    Best Regards,
    Elena

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------



  • 35.  RE: Aortic Aneurysm Support Group

    Posted 10-30-2019 14:13
    Elena, are they going to just watch it at a 4.4? I have a 5.4 and I was told they will monitor it yearly. I am freaking out

    ------------------------------
    Ileen Cattani
    Education
    Roseville CA
    ------------------------------



  • 36.  RE: Aortic Aneurysm Support Group

    Posted 10-30-2019 19:46
    Hi Ileen,

    Sorry you have to deal with this diagnosis as well.  You can see from my posts here that I was really upset when I learned about my aneurysm. It will get better, believe me.  My size is only 4.4cm so I am not a candidate for a surgery yet. However, I would be really concerned if I have 5.4cm and a bicuspid valve. I have done some online research and have to say I would not trust your cardiologist if he suggests to wait until 6cm when you have a bicuspid valve.  I would contact a reputable surgeon who operates on aneurysms and ask about his opinion. If you have a good insurance I would recommend Cleveland Clinic. I personally contacted Dr. Svensson and sent him my medical records and CT scan and ECHOs. Elective surgery is much better than dissection or rupture and we are lucky to find out about our aneurysms. With the surgery we have another chance. I know what you are going through right now and how difficult it is to accept. Feel free to contact me any time. I will share with you what  I learned. Hugs

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------



  • 37.  RE: Aortic Aneurysm Support Group

    Posted 11-05-2019 19:30
    I have a 4.3 aneurysm in the aortic arch. It was found during a routine chest X-ray. I went to a cardiologist the following day and brought him my Echo's that were done just as a matter of screening.,I have no symptoms and no co morbidities like high blood pressure, high cholesterol or diabetes. Dr told me this type is rare and there's usually family history.  Btw I am 69 years old. I immediately sent my parents 85 and 87 and my siblings and everyone has normal aortas. Duh! Why me? In 2005 my aortic arch measured 3.5. In 2009 it was 3.7. Growing slowly. From 2009-2019 it went from 3.7-4.1. Growing still but slow. I also have a tricuspid valve which he said Thank God to. He said he would see me in 6 mos which will be on Nov 18. Meanwhile I'm slowly freaking out. I spent weeks doing research and made an appointment at NYU's aneurysm dept. armed with all my info. They recommended the dr and when I got there he said I've done thousands of aneurysm repairs but I won't touch this one. If you came in as an emergency and I was the only one available that would be a diff story. I'm sending you to the expert here at NYU. All he does is ascending aortic arch aneurysms. I am seeing him in March and he will do a CT scan with contrast, unless of course the echo in 2 weeks shows something. He explained that he only does open chest procedure. They do not do fenestrated stents at NYU. His reason was better outcome. so I asked why I have to sit on a ticking time bomb. Why not do it now while I'm healthy with no symptoms. He said, he might be doing a surgery that may have never been necessary. He didn't want to do it because it's risky and I gave an active life and my quality of life would change dramatically. Ok, go home and research some more. Well back in Sept I got very sudden, excruciating pain in my ears and throat spasms and then just as suddenly the same pain between end of sternum and belly button. I thought I was dying. It took about 20 mins to go away. I know women's heart attacks present very differently from men and I was convinced this was cardiac related.  Back I went to cardiologist. He said those were very bizarre incidents but did an EKG just in case. He took the 5 EKGs I brought him and placed one on top of the other and the teachings were 100% identical. You did not have a heart attach he proclaimed. I don't know what you had. Then I told him about the cardio-thoracic surgeons approach to my aneurysm if I ever get to surgery. He took my hand and said, "this is your decision entirely about how to proceed. But please, if surgery is necessary I want you to go to either Mt Sinai or Lenox Hill. My colleague is an expert in fenestrated stents. His success rate is high. Please don't do an open procedure if you have a choice"  I so appreciated his honesty and his compassion. He is so concerned about my quality of life.
    'I try not to think about it but it consumes my every waking moment and disrupts my sleep. I still have a college student at home. My very brave young man who underwent elective bilateral above knee amputations because his legs didn't grow from the knees Disney and he was in excruciating pain. I adopted him when he was 6 from south Africa.  He still needs his mama. And I take care of my mama who lives with me and our 5 cats. I worry more about them than the people. And then there's my 2 1/2 year old granddaughter. I've still got a lot of living to do.
    i have a question. Has anyone had their aneurysm repaired using the fenestrated stent procedure? I'm sorry this was so long. I'm so overwhelmed. I'm anxious to hear from others. Thank you and be blessed

    ------------------------------
    Laura Calamuci
    Teacher
    retired
    Staten Island NY
    ------------------------------



  • 38.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2019 10:04

                  Hello. Betsy,

                  I understand your upset at not being told when the problem with your aorta was first noticed. My impression is you aren't seeking information so much as the opportunity to express your feelings. This is a good place for that and your support group should also be one.

                  I don't know if this will help but, as a former personal injury attorney, I couldn't help looking at your situation as one. Assuming that the doctors were negligent ("wrong") in not telling you, the question is did you suffer any damage. You may be personally upset by their conduct but did it cause you any other harm? Is your condition worse? Should any different action have been taken which would have improved your result? It doesn't seem so, since the course of treatment seems to be still to watch and wait. Maybe your next consultation will change this – but let's hope not. I hope these comments won't add to your frustration. Yes, you may have been treated shabbily, but if you can shift your focus to the fact you haven't been harmed, you may be able to move on more easily.

    Keep punching,

    Bob Levin

     

    Sent from Mail for Windows 10

     






  • 39.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2019 13:44
    Thank you Bob for writing to me. I am better now and able to focus on the future. My doctor put me into shock with the news and I thought it was all a big error, until I got the reports myself.  I will see a surgeon for a consult and hopefully everything is "small and not to worry" as my cardiologist said.  As a friend told me, she gets a copy of every test result to review herself. I'll do that going forward. Thanks.

    ------------------------------
    Betsy C.
    N.Y.
    ------------------------------



  • 40.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2019 11:01
    Ira and Betsy,

    I agree with Ira. We are all unique persons created with a mix of parental genes that is illustrated by each of us having our own DNA. Even in my 70's my doctor keeps telling me that for things like my hernia I can thank my mother, as I also can for still having hair.
    I use my background of teaching statistics at U. of Tennessee for my example. My theory is that at birth our genes provide for a natural life expectancy expressed in a range of years rather than a specific age. For example, assume mine was between 70-90 years. Where between these dates is influenced by my behavior. The primary behavior drivers are diet and exercise, with stress also playing a major role. 

    My 50 years of studying statistics supports this theory. For example, a study showed that when Japanese moved from Japan to San Francisco, their health profile changed to reflect the ones of San Francisco. All this assumes, of course, no interring actions, such as wars or smoking. 

    Betsy, my theory developed while practicing law for 30 years, is that professionals care and will, generally, try to accommodate the wishes of the clients/patients. May clients/patients only want to "worry" about something that has reached the crisis level. I am not one of them. I want to know about any potential problems so I can take preventive action. I repeatedly inform my physicians of my wishes by specifically, politely, stating them and studying and discussing my test results. Their reactions initially are surprise, followed by willing participation. I suggest you follow this approach and, if the physician is not cooperative, consider interviewing others until finding one that is. All too ofter the focus, by doctors patients and lawyers, is on treating crisis rather than preventing it.

    I learned many lessons the hard way as my cardiologist did not advise me of any blockages until after my heart stopped. The lessons I learned about taking responsibility for myself. My learning experiences are contained in my book "One Heart-Two Lives: Managing Your Rehabilitation Program WELL" and my background at http://www.OneHeartTwoLivescom.word press.com.

    Brent Zepke    





  • 41.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2019 13:51
    Thanks Brent for your thoughts. My doctor said we discussed the aneurysm before, so he was trying to cover himself when I said I didn't know what he was talking about. He messed up.  Going forward, I'll need to get my reports to review myself. I'll keep your book in mind to take a look at it at some point. Thanks.

    ------------------------------
    Betsy C.
    N.Y.
    ------------------------------



  • 42.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2019 15:36
    Hi Brent,

    Love your post! Cannot say better - "I want to know about any potential problems so I can take preventive action".
    If you are aware of your aneurysm, you are not just waiting and watching, you are doing a lot of things differently.
    Thank you for the link to your book!
    Best
    Elena



    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------



  • 43.  RE: Aortic Aneurysm Support Group

    Posted 11-05-2019 18:04
    I am 52 years old and just diagnosed today with an aortic aneurysm when I went to the hospital for chest pains.  They said it was small but that I needed to see a cardiologist tomorrow.  What should I be asking?

    ------------------------------
    Andrea Henderson
    Little Rock AR
    ------------------------------



  • 44.  RE: Aortic Aneurysm Support Group

    Posted 11-05-2019 19:26
    Andrea,
    The right cardiologist will diagnosis  your condition and if required, be your advocate to the best cardiac surgeon. 
    a. What is the condition of my heart?
    b. What are the alternatives to surgery?
    c. What surgeon do you recommend?
    d. What hospital do you recommend?
    e. How soon will I need surgery?
    f.  How long will my recovery be?
    ATB,
    Victor Fabry

    --
    Victor Fabry, CEO
    Greylock Advisors, LLC





  • 45.  RE: Aortic Aneurysm Support Group

    Posted 11-05-2019 20:07
    Hi Andrea,

    I would ask the following questions:
    1.  Location of my aneurysm ( root, arch, thorasic or abdominal)?
    2. What is the size of my aneurysm (if no CT, please ask dr. to order a CT with contrast)
    3. If dialiation is more than 4cm, start searching for the surgeon.
    4. Ask your cardiologist how often you will be checked for the aneurysm's status (depends on size - annually, every 6 months, etc.).
    5. If you have any family history of aneurysm, ask your dr. to refer you to genetic specialist. You can have a connective tissue disorder. In this case the surgery will be needed at a smaller size (4.5-5 cm vs. 5.5cm) and all family members will need to be checked.
    6. I would ask your cardiologist about his/her recommendations and see if you can trust him/her.

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------



  • 46.  RE: Aortic Aneurysm Support Group

    Posted 11-05-2019 21:15
    Hi Andrea-
    Try not to get ahead of yourself just yet.  See what they have to say tomorrow (bring a pad and a friend or relative if possible to take notes) and remember that most insurance plans allow for second opinions.  Vic has a great list, but first of all you want to know how large it is.  If this is your first test that has shown the AA, it's a "baseline" for you.  The dr. will then recommend how soon to check it again.  What caused it (hereditary, high blood pressure, bicuspid valve, etc) will play into the progression, or lack thereof if that can be determined.  Some people's are small and don't grow much and they never need surgery.  Others may grow more quickly and surgery will be indicated.  The formula the dr's use is one that shows that when the risk of dissection or rupture outweighs the risk of surgery, then surgery is recommended.  This is a situation where size does matter.  

    In the meantime, two important things to know are to avoid lifting or exerting doing anything you can't easily talk through  while doing.  Exercise is very good for you if your AA is small (power walk, jogging, light weight lifting)  but not straining (heavy snow shoveling, crossfit, etc).  Also, know the signs of what a dissection feels like (extreme sharp stabbing pain in chest, neck, shoulder) and call 911 immediately.  Tell responders you have AA ad need CT scan as soon as you get to med facility.  If that does happen, you have a very good chance of survival if you are treated in the first 4-5 hrs.  Make sure your family, co-workers, friends know your condition once you have the info and that you have support and people to talk to.  

    This is a great group and lots of experience and knowledge are here.  You should also look things up on very reputable sites yourself (Mayo Clinic, Cleveland Clinic, and of course, talk to your doctors.  

    Take care, good luck and try to remember.... you're lucky that this was found and you can do something about it.  

       





  • 47.  RE: Aortic Aneurysm Support Group

    Posted 11-06-2019 10:18
    I was surprised to read here that AA surgeries are not as common as The Open Heart Surgeries for
    valve replacements and the like

    I had no symptoms at all my whole life....Not a chest pain, not a quiver, Surgeon said he thinks
    I could have been born with the AA and told me that starting that day I was on Light Duty until
    he performed the surgery

    Had surgery in August of this year, had the surgery twice because my lungs filled with blood and
    they had to open me up again a day after the surgery...

    Have been home since September and there was never any pain associated with my Open Heart
    Surgery except for chest muscle pain once the tissues started waking up after leaving the
    hospital.

    Did 5 sessions of Cardiac Rehab but had to drop out because I fractured my Sternum
    while I was in the Hospital and only noticed it when I started lifting 20 pounds and am on
    light duty now until April or May because of Osteoporosis and the slow healing that goes along
    with that

    M

    ------------------------------
    mary hedtke
    ------------------------------



  • 48.  RE: Aortic Aneurysm Support Group

    Posted 11-06-2019 13:44
    Mary, Andrea and others,

    Your discussions raised a point I realized as I walked alone on a beach during my rehab from a quintuple bypass. 
    Carry your cell phone with your medical team easily accessible.
    It is important to carry with you easily accessible information about your situation just in case you are unable to communicate to medical professionals.
    Your various physicians names and telephone numbers, your medicines and any restrictions you are aware of. 
    You may want to carry a regular strength, un-coated aspirin or two.

    When I progressed to jogging, in only shorts and shirt, my daughter gave me a metal plate to put on my shoes with key info.

    I never needed to use the emergency stuff but the peace of mind was worth twenty times the effort.

    I should mention that my wife and I each carry the key data for both of us.

    Brent Zepke
       





  • 49.  RE: Aortic Aneurysm Support Group