Hello! I joined this forum today. I have a bicupsid aortic valve, severe aortic stenosis, and my ascending aorta is dilated to 5cm in one spot, returning to ...Read more
Hello! I joined this forum today. I have a bicupsid aortic valve, severe aortic stenosis, and my ascending aorta is dilated to 5cm in one spot, returning to normal size before the arch. I also have mild pulmonary hypertension, and am just beginning to develop symptoms of chest tightness on light exertion. (not always, just once in a while.) I have researched a lot online, bought and read Adam Pick's book, and am just now exploring this website.
I am struggling with the decision to go with the Ross Procedure, done by Dr. Stelzer at Mt. Sinai with possibly replacing the ascending aorta with Dacron, or choosing the On-X valve, with or without replacing the ascending aorta, done either by Dr. Stelzer or a surgeon at Clevelend Clinic or University of Michigan.
I am 46 and live in Ann Arbor, MI. My other health issues include pulmonary sarcoidosis and ulcerative colitis, both inflammatory diseases, both currently in remission but prone to recurring, and involving bleeding. I also have degenerative disc disease, arthritis, and many symptoms of EDS and and Sjogren's syndrome, including a skin rash that bleeds and a few other bleeding concerns (frequent dental work, extremely heavy periods, etc.) that give me pause when considering a mechanical valve and the Coumadin that comes with it.
I am well aware that a Ross Procedure, if not very successful, could leave me with two bad valves, and have researched what has gone wrong with patients in the past, and how to avoid it. Most issues that I am aware of involve one or both valves dilating, and in reading have found that Dr. Stelzer pioneered a lot of techniques to avoid these problems, including wrapping the valves and supporting (or replacing) the ascending aorta. He has the highest success rate of Ross patients not needing re-operation of all surgeons I have researched thus far.
SO. I am looking for any advice, stories, input, on other surgeons who are excellent with the Ross Procedure, people who have had problems with the Ross Procedure, and also people who have gotten a mechanical valve and taken Coumadin in spite of their bleeding problems, and whether they have had complications from any of the above.
That is a lot ot ask about!
Or, feel free to just introduce yourself and share what you know/what questions you have.
Thanks!
Deborah
p.s.- I have met with Dr. Stelzer at Mt. Sinai and was very impressed with his expertise, ability, and responsiveness. Conversely, I have made about four appointments at Cleveland Clinic, none of which resulted in me seeing a surgeon yet. I previously found great success at Cleveland Clinic in treating my pulmonary sarcoidosis, and have had no such similar luck with the adult cardio thoracic unit. They have changed their minds many times about which cardiothoracic surgeon I will be assigned to, rescheduled my appointment with cardiothoracic surgeon Dr. Roselli three times without warning, (still waiting for my reschudeled appointment, one month away) and in spite of having me meet with a cardiologist, the only advice they gave me was via a resident who told me I was too old to consider a Ross Procedure, because I was too young to be having severe aortic stenosis. (?!) Their performance thus far has made me wonder if I should have surgery there. Still deciding.
I live in Ann Arbor, so you might think University of Michigan is a natural choice, but my cardiologist there gave me little to no information on my surgical options, and in spite of recommending surgery by summer, did not even suggest meeting with a surgeon to discuss my options. For these reasons, I am grateful to sites like these, for pointing me in the direction of medical professionals who can be of assistance.
Darlene Smith I do not have your issues, but I had my surgery at Mount Sinai and I have heard nothing but constant ... Read more
Darlene Smith I do not have your issues, but I had my surgery at Mount Sinai and I have heard nothing but constant praise for Dr. Stelzer. I believe that patients need to find the right surgeon for them regardless of where in the country the patient is versus the surgeon. If you are having issues with Cleveland Clinic, go with your gut and come to NYC. I've heard he is one of the best.
Catie B Deborah, I had a successful AVR and aorta surgery at CC in Sept., in spite of having significant prel ... Read more
Catie B Deborah, I had a successful AVR and aorta surgery at CC in Sept., in spite of having significant preliminary hassles with them. But they are not pro-Ross, if that's the procedure you're seeking.
As for Warfarin/Coumadin, the three surgeons I consulted with wanted to keep me off of it, due to gastric bleeding risk (gastritis, esophagitis, erosions), though I have not had any bleeding incidents. If your history includes significant blood loss, I'd be very careful.
Paul Wells Sounds like you also have some inflammatory diseases. I had a Ross.the new pulmonic valve is foreign ... Read more
Paul Wells Sounds like you also have some inflammatory diseases. I had a Ross.the new pulmonic valve is foreign and my body recognized it. The valve is also treated to chemical sterilize it and preserved in gluteraldihide (spelling? ) . My C reactive protein jumped significantly . My imflamitoy precession was working evert me to rapidly stenose this foreign valve. I prematurely needed a second procedure and I'm stenosing the second pulmonic valve. But not as fast.
Deborah Travis Hobson I'm so sorry to hear that! Yes, inflammatory issues abound for me. Sarcoidosis, ulcerative colitis, a ... Read more
Deborah Travis Hobson I'm so sorry to hear that! Yes, inflammatory issues abound for me. Sarcoidosis, ulcerative colitis, arthritis possibly rheumatic, who knows where it all ends. I'm trying so hard to stay on top of all the information I can get, so I greatly appreciate any and all anecdotes you guys can give me, based on your own experiences, or those of your loved ones or friends. Thank you.
I hope you are healing and feeling better soon.
Deborah
Deborah Travis Hobson Paul Wells, I've been reading up on decullularized tissue valves vs. tissue valves treated with Glute ... Read more
Deborah Travis Hobson Paul Wells, I've been reading up on decullularized tissue valves vs. tissue valves treated with Gluteraldehyde. Gluteraldehyde is supposed to reduce the immune response to the foreign tissue, but in some cases causes faster calcification. I am so sorry you have had to deal with all this. There doesn't seem to be a failsafe method, and I am questioning the efficacy of decellularized human donor valves as well. Thanks for sharing your experience. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3339246/
Glutaraldehyde-stabilized bovine pericardium is used for clinical application since 1970s because of its desirable features such as less immunogenicity and acceptable durability. However, a propensity for calcification is reported on account of glutaraldehyde ...
As for Warfarin/Coumadin, the three surgeons I consulted with wanted to keep me off of it, due to gastric bleeding risk (gastritis, esophagitis, erosions), though I have not had any bleeding incidents. If your history includes significant blood loss, I'd be very careful.
I hope you are healing and feeling better soon.
Deborah