Kittysmom59
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Kittysmom59, September 16,  2019  2:43pm EST

Adult Atrial Septal Defect Repair - How do I find the right CT surgeon?

I have recently been diagnosed with adult Atrial Septal Defect.  I have a 1.8 CM hole that is near one of my heart valves.  I've been told that I need open heart surgery to patch the hole.  Initially, I alternated between being terrified (of the surgery), angry (that my condition was never diagnosed before), and grateful that it has been diagnosed before I had a cardiac event.  My vascular arteries are fine.  My heart shows no signs of damage . . . yet.  Until recently, I thought that I was pretty healthy.

Now I am stymied by the task of finding the right CT surgeon.  My cardiologist referred me to a local CT surgeon who performs more than 250 CT surgeries a year.  He has a great track record.  However, when we met with him he advised that the last time he "patched" an ASD was four years ago.  (He has repaired many ASDs that could be fixed by sewing the existing tissue together.)  I asked him if he could refer me to a local surgeon who performs ASD repair surgery (with a patch) with greater frequency.  He gave me information for a CT surgeon in Spokane.  I live in the Seattle area. 

My cardiologist didn't have any other names to offer.  When I surf the internet, I can find lots of local CT surgeons, but very few who even list Adult Atrial Septal Defect Repair as one of the procedures they perform (regardless of frequency).  There are lots of listings for pediatric ASD repairs.  I don't know if I should try contacting a CT surgeon who normally treats children.  Or if I should trust that the CT surgeon we met with has the requisite skills even though he doesn't perform this particular procedure with much frequency.  How do I find the right surgeon?

  • AHAASAKatie
    AHAASAKatie, September 17,  2019  9:04am EST

    Good morning, I think your idea of contacting a CT surgeon who normally treats children for a referral is a great idea. It does sound like you may have to travel to have the procedure. Although that is not preferable, is it a possibility? I have experienced this with my daughter. We had to relocate to the St. Pete area from Jacksonville, Fl for her to have a specific surgery in 2017. I used a combination of assistance from the Ronald McDonald House and a rented home to provide accommodations for us during the time we were there. 

    Most cities (and some hospitals)  have foundations and nonprofits that can help adults manage these same types of situations.  For example, a google search for Accommodations Spokane Washington for a medical procedure provided this result  https://www.multicare.org/valley-visitors-local-accommodations/ . There might be some information here that can help you. 

    I am truly sorry you have to manage all of this and want you to know we are here for you now and after the procedure. 

    Best Katie

  • AmbassadorMR
    AmbassadorMR, September 17,  2019  12:03pm EST

    Hello and welcome to the AHA support site. While I do not have personal experience with adult atrial septal defect, I am a heart valve surgery patient and there are similarities in what we experience as heart patients and our pursuit of the best treatment options for our condition. I live in the Midwest but when it came time to have surgery to replace my congenitally defective aortic valve, I did my research and chose to go to Cleveland Clinic in Ohio for the procedure. There are a number of heart research institutions across the country (including of course the West coast) that have specialized diagnostic and surgery departments that see and treat complicated or unusual conditions in higher volume than any typical hospital. My point is if you have the ability and resources to travel, then I would research and choose a facility and surgeon who has a lot of experience with adult atrial septal defect and its treatment.

    Here is a link to information on your condition from the Cleveland Clinic site:

    https://my.clevelandclinic.org/health/diseases/11622-atrial-septal-defect-asd/diagnosis-and-tests

    I highly recommend that you work through this information and then see if there is a center of excellence (e.g. Cleveland Clinic) that you feel confident and comfortable in contacting and investigating treatment options. As you can see in the link material there are a number of catheter based treatment options that may or may not apply to your individual condition but would be well worth discussing with a diagnostic and surgical team.

    I hope this helps and please let us know what you decide to do and how we can be of support to you in this treatment journey.

    Yours In Heart Health,

    AmbassadorMR

     

  • JamesPL
    JamesPL, September 17,  2019  12:18pm EST

    I am very sorry to hear the struggles you’re dealing with. It’s important that you feel as comfortable as you can with what ever surgeon you have. Sometimes the anxiety of the procedure itself can cloud your judgment. When I was first told I needed open heart surgery, I had trouble dealing with it. Once I accepted that, I researched my surgeon’s background. I then met with him as you have done. This helped me deal with it emotionally. You don’t seem to have an issue with the surgeon. Only that he hasn’t performed the procedure in some time. Could you consult with other doctors about him? This might help you feel more comfortable. I think what you’re doing in researching other surgeons is the right thing to do. In the end, you’ll have to pick the one you feel the most comfortable with. The research and consultation process is the best way to get there.

     I wish you the best of luck.

    Jim

  • AmbassadorC
    AmbassadorC, September 17,  2019  1:42pm EST

    Good afternoon and welcome to the support network! You have definitely come to the right place as my fellow Ambassadors and Katie have provided some great perspectives and encouragement. I too am a heart valve patient and agree completely with the premise that you must feel 1001 % comfortable with your heart in the hands of the surgeon that has performed several of these procedures to put your mind at ease. I couldn’t agree more that this helps with the emotional and mental side of anxiety - pre surgery. I have also found that by asking other medical staff about a certain surgeons reputation or quality of work, is more common than you would think, so do not feel bashful or shy in that arena. (Ie contacting the pediatric surgeon to ask about adult referrals is worth the legwork) (the worse they can say is no but you’ve turned that stone over rather than letting it remain unturned). 

    I also agree with the possibility of travelling to a center of medical excellence If you are able. I have found that in my journey, often times centers such as Cleveland will arrange for second opinions via electronically upon sending your appropriate medical records. 

    While I am unable to provide additional resources in this arena, I do hope that you feel assured that my fellow Ambassadors provided you with some great insight and that from my exoereience, agree whole heartedly. 

    My veey best to you as you continue your journey to heart health. Know that we welcome you with heart. ❤️

    Ambassador C 

  • Kittysmom59
    Kittysmom59, September 17,  2019  5:49pm EST

    Thank you all very much for your support and insights.  It means a lot to me.

    I have had a series of tests that make me fairly confident that open heart surgery is the only method to close my septal defect.  I've had a couple of EKGs, an echocardiogram, a transesophogeal echocardiogram (TEE), and an angiogram (to check my plumbing/arteries).  My cardiologist requested the TEE to verify the size and location of the hole in my heart.  At that point, I was told that the prospect of catherization to "plug" the hole was not an option open to me.  I've seen an interventional cardiologist (who performed the angiogram) and one CT surgeon.  They have all agreed that open heart surgery is the route to take.  I would love it if they were wrong and there is a less invasive procedure that can correct my defect, but I am skeptical.  Yes, volume is the primary issue for me.

    So far, I have found a couple of websites that have also been helpful.  A general article from AARP on how to choose a surgeon:  https://www.aarp.org/health/conditions-treatments/info-2017/choose-a-surgeon-doctor-surgeries.html.  It also includes a link to a website I found independently that ranks surgeons and surgical outcomes:  https://www.checkbook.org/surgeonratings.   And less helpful, statistics on facilities from the Society of Thoracic Surgeons:  https://publicreporting.sts.org/chsd?title=&field_state_value=All&page=1.  

    We have the financial resources to be able to relocate for surgery and convalescence, if necessary.  We are lucky.  However, I am concerned that my recovery will be more stressful for both me and my husband if I have the surgery outside of the Puget Sound area.  Also, I am not sure if there would be additional red tape with my insurance company, but Aetna is nationwide.

    I wasn't aware that there is the possibility of getting a second opinion electronically.  It makes perfect sense.  I think that I will be on the phone tomorrow to gather more information.

    I am curious if anyone has advice on how to go about getting a second opinion approved/authorized.  I presume I need to call my insurance company.

    Thanks again!

    Judy

  • AmbassadorC
    AmbassadorC, September 17,  2019  8:16pm EST

    Hi Judy, 

    Here is that link for Cleveland Clinic second opinion, CC 2nd opinion. I would most definitely call your insurance company to ensure of coverage specific to your policy. For what it’s worth in terms of additional research on the back end of the process, it may be invaluable in terms of moving forward. Hope this is helpful. Please feel free to keep us posted and if we can continue to assist. Also know that this support network encompasses caregivers as well. We welcome your caregiver with heart❣️

  • Kittysmom59
    Kittysmom59, September 18,  2019  2:03pm EST

    AmbassadorC, thank you so much for the link to the Cleveland Clinic!  I called my insurance company this morning and they advised they will cover a second opinion if my doctor "deems it medically necessary."  Since the Cleveland Clinic posts their fee schedule, it's okay either way.  We can pay out-of-pocket, if we need to.  Thank you too for your offer of support to my spouse/caregiver.  As I move along this journey (and read the posts of fellow heart patients), it is clear that the surgery itself is only part of the process.  Recovery, getting to a point where I feel I can trust my heart muscle again, and the keeping my loved ones strong are also important.

  • AmbassadorC
    AmbassadorC, September 18,  2019  5:47pm EST

    You are most certainly welcome Judy. So happy you found the information helpful and made the call to you insurance company. 

    I couldn’t agree with you more in terms of the total recovery. Truly there is the acceptance stage, pre op preparation, surgery, and post op recovery. Regardless of what type of heart surgery one has, it truly is as equally emotional journey as well as physical. No “body” is the same in terms of recovery, as everyone heals diffferently. 

    Please keep us posted on how things are going as we are all heart warriors that can help you “kick out” your “fears of the unknown and what if’s”. Keep on fighting with heart, 

    Ambassador C

  • NewPacer73
    NewPacer73, December 7,  2019  9:12am EST

    I was browsing through the blog and found your questions from September. I wish I had seen it earlier. I had this operation at Mayo in Rochester in late 2011. I chose Mayo because they did the operation often and had great numbers for outcomes.  My Virginia cardiologists said if I was their wife, they would send me there. I would love to know the results of your search and how your surgery went. The advice given here by others is excellent. Let me know how you did or if you are still looking and I'll share what I went through to find the right place. 

  • Kittysmom59
    Kittysmom59, December 13,  2019  11:51am EST

    Dear NewPacer73, thanks for the information.

    I was informed by my cardiologist in July that I should have corrective surgery by the end of 2019.  I did a lot of research, mostly on the Internet.  In early September, my husband and I met with a highly regarded cardiothoracic surgeon in Seattle who was more than capable, but who did not perform the ASD closure procedure with much frequency.  (When I asked him how many times he had performed my procedure in the past year, he said that the last time he closed an ASD was four years ago.  Note that my cardiologist had recommended this CT surgeon.)  Also, he could only perform the ASD closure procedure via open heart surgery (full sternotomy).  We requested a second opinion and were directed to Sacred Heart Hospital in Spokane, Washington.  All of my records were sent there and my case was added to the schedule for their weekly review.  The upshot is that Sacred Heart specializes in congenital heart defects AND they were willing and able to close my ASD via robotic surgery.  This meant that I did not need to have a sternotomy; I just needed to have 5 ports (roughly half inch incisions) created on my right side as well as a groin incision for the heart-lung machine.  According to one of their doctors, Sacred Heart is a regional heart center with capabilities that eclipse both Seattle and San Francisco.  We were told that we would have to travel down to Los Angeles to find a West Coast hospital with similar expertise.

    I had surgery on November 12th.  In addition to patching the hole in my heart, they had to replace my tricuspid valve which had become damaged over the years as a byproduct of the Atrial Septal Defect.  An external pacemaker was attached to me, there to make sure that my heart rate never dropped below 45 bpm.  As the doctors were waiting for my heart to settle down after the disruption of the surgery, I was informed that I would need to have a pacemaker implanted if my heart did not settle into a normal sinus rhythm.  Thankfully, by day 5, they were able to remove the external pacemaker as my heart was pumping correctly without any intervention.  In my opinion, my doctors were truly outstanding.  My surgeon was Dr. Branden Reynolds.  I was the 9th or 10th patient he performed a robotic ASD closure procedure on in 2019.  The cardiologist who followed my case during my hospital stay was Dr. Jeremy Robert Nicolarsen.  (Since ASD's are typically diagnosed and corrected in adolescence, Dr. Nicolarsen is a pediatric cardiologist.)

    We considered the Cleveland Clinic and the Mayo Clinic.  The best doctor at the Cleveland Clinic, the guy who is apparently writing the textbooks on congenital heart defects, was not in network with my insurance.  The Mayo Clinic was a possibility, but it seemed like it was an easier road (for us) to travel to Spokane.  (I was born and raised in Minnesota, so I am familiar with the Mayo Clinic and their somewhat overwhelming bureaucracy.)    

    My advice?  Every patient needs to find the procedure and doctor that works for their particular situation.  I have no medical training, just a B.A. in Mathematics.  But there is a tremendous amount of information available if you're willing to search, call and ask questions.  In the end, I learned to trust my research and instincts.  If I had decided to just "go with the flow," I would have had open heart surgery (meaning a 10 inch scar on my chest) and a much longer recovery.  Thirty days out from surgery, I seem to be healing nicely, and I feel pretty good.  My follow-up care will be with my local (Puget Sound) cardiologist:  resting echocardiogram and EKG today, and cardiac rehab to start after Christmas. 

    I am very grateful to all of the folks who have supported me along this journey, including the people who posted on this thread.  Thank you!

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