Cydney's Posts

Depending on your insurance, you might need a referral. But if an office isn't calling you back after multiple attempts, I would just cross them off the list. Maybe Adam's intervention will help getting an appointment. But how are you going to be treated afterwards? Need to get Adam involved again? Maybe I would go to the appointment but put them low on my list. You should get second and third opinions anyways so add a couple more surgeons on your list. Go in with a list of questions based on what you learned here.

Robert, I completely understand where you’re coming from. I would potentially feel that way if I hadn’t received glowing reviews for Dr. El Hamamsy. I was having issues getting my records to their office. My local cardiologist would not send the referral so I had to independently do it. It’s been a little messy but definitely trying to give their office some grace with the messy receipt of records. After I made this post, I’ve been contacted and personally texted from their lead program manager. Hoping everything progresses well from here. As always, I’m so grateful for this community. ❤️

Wow, good job Adam you are truly an Angel to us all on here!!!! Good Luck Cydney!!! I wish someone here In Kelowna BC, Canada performed the Ross but I don’t think the docs are as specialized so I’m getting the OnX mechanical valve put in and going to push for at home INR blood monitoring. My hopes are to make the testing second hand and get my life back to as normal as possible after the procedure! Wishing you the Best!!!!

Rose, I know! It has been such a struggle. Without getting way into the weeds, I have not had the best support with the medical systems here. I did bounce from HCA health system to KU which complicated things a bit. My local surgeon at KU was supportive, but the University of Kansas Health System has policy's that would not allow him to send a referral. Anyways, I believe I am on the right track moving forward.

Cydney, yes about connections. Its a way of life in more than just medicine. Its who you know not what you know ? Talk about connections, or lack thereof, i spent 4 hours recently in a local city hospital emergency room in the middle of the night. Not heart related but scary. Never saw anyone, finally left. It worked out by itself thankfully. All i accomplished was filling out some paperwork. Some patients were there when i got there and there when i left. Staff seemed more concerned about what pronouns i identified with than what was bothering me. I swear there were people sleeping in there on the benches. If so, thats tragic. My issue happened to be blood in a newly inserted catheter bag early in the day at my doctors office. Then, the next day, they had the nerve to call me to ask how my recent emergency room experience went. Their ears may still be ringing. Will anything change ? Doubt it.

Hey Cydney, Yes, The Ross Procedure can indeed involve the use of a Dacron graft to address issues such as aneurysms. Here are some key points about this approach: - Purpose of Dacron Graft: The Dacron graft is used to reinforce the pulmonary autograft, which is transplanted to replace the aortic valve. This reinforcement helps prevent dilation of the autograft, which can lead to complications like aortic root aneurysms and aortic regurgitation. - Techniques: There are various techniques for using Dacron in the Ross Procedure. Some surgeons wrap the autograft with a Dacron graft to provide support and prevent dilation. This method can help ensure the long-term stability of the autograft. - Considerations: While using a Dacron graft can enhance durability, it also increases the technical complexity of the surgery. Surgeons must carefully consider the placement of coronary arteries and how the autograft leaflets will tolerate the graft over time. - Patient Suitability: The use of a Dacron graft can be particularly beneficial for patients with dilated aortic annuli, as it helps bring the annulus down to a normal size that fits the autograft. For more detailed information, you might want to consult with a cardiac surgeon who specializes in the Ross Procedure. They can provide insights tailored to your specific medical condition and anatomy. I'll drop some videos on this topic below. Fyi, I had a Ross Procedure 20 years. Thankfully, I'm doing great. No reinterventions and I have not needed to take any medications for my heart, afib, etc.

I have met with a surgeon here locally he was discussing mechanical valve. I didn’t even know about Ross at the time. I have a follow up with him this week and want to discuss his opinion on it and of course me traveling. I did a second opinion video consultation with a surgeon at Mount Sinai and he had my records and images available to him and he is thinking, I was a good Ross candidate. It all is a bit overwhelming and confusing because as of right now it at least feels like there’s slightly conflicting treatment plans, but that might be due to the fact that Ross isn’t done locally to me.

Hi Cydney, Welcome to the group. I traveled for a Ross procedure from the Cincinnati area to Mt Sinai in NYC in 2023. I would do it again no question. Dr El-Hamamsy was my surgeon and he and his team are truly amazing. If you have any questions I would be happy to share my experience.

Hey Cydney, I also had a very leaky bicuspid aortic valve and a slight aneurysm in my ascending aorta. I was 22 when I had surgery at Mt Sinai with Dr. El-Hamamsy in 2021. I was slated for a Ross procedure but they were able to do a valve-sparring root replacement instead. I have nothing but positive things to say about my experience there. I can't really speak to life after a full Ross procedure, but I do have a Hemashield graft with a Dacron ring, and I live a pretty normal and active life. I was also initially referred to a surgeon who specialized in mechanical replacement surgery. I think there are positives and negatives to both options, and it was definitely not an easy choice. For me, the Ross procedure won out because it allowed me to avoid taking blood thinners for the rest of my life. I know this can be a stressful time, and there will certainly be challenges ahead, but I'd take confidence in the fact that there are excellent surgeons out there and that you can still go on to live a full and active life.