Thanks to everyone for your well wishes and your ongoing input into my situation has been of immense help! My journey here on this site has led me to ask the right questions and continue to seek out the best surgeons for my condition, not just the ones readily available of the ones that my insurance participated with. Just an update to the insurance issue?I was able to switch my plan to Tricare Standard, which basically allows me to go to any doctor. It does increase my financial responsibility but the maximum out of pocket expense for a fiscal year (which just started Oct 1) is $1000 out of pocket, after that they pay 100%. So, knowing that I would easily and quickly surpass the $1000 out of pocket limit I knew that this was a small price to pay to have the ability to see any physician. I did find, however, that some docs simply don?t choose to participate with Tricare at all, since it is sort of like Medicare in that it is a federally operated program and puts legal limits on the amount that they can charge you, etc. But, fortunately, Dr. Raissi and Cedars Sanai have indicated to me that they will work with Tricare and are, obviously, willing to accept their reimbursement.
I certainly didn?t mean to indicate that I was dissatisfied with Cleveland Clinic in terms of the care that they provide, since I really didn?t get that far into the process. I believe that I would have likely received excellent care, had I ever gotten there. My dissatisfaction was primarily with the follow up after they received my records and the length of time the process was taking. IMO, with my situation, they should have been able to just review the records and DVD?s of echos, CT?s, etc. and been able to see that my aneurysm already met the criteria for surgery and needed to be taken care of asap.
Ross, Dr. Raissi feels the same way you do?.these things much be taken care of much sooner than many surgeons had previously recommended, especially when you take into consideration those of us with connective tissue disorders and the fact that dissections can occur in fragile tissues much earlier than in others. Interestingly enough, many of us with bicuspid aortic valves and aneurysm do most likely have connective tissue disorders. (This encompasses not just Marfan syndrome both others like Ehlers-Danlos, etc.) So, my advice for others in this situation, if your surgeon tells you at 5 cm that you can come back in 6 months for a 64 slice CT scan, keep looking for another surgeon. You may not make it another 6 months and with today?s technology it just isn?t worth the risk.
So, with that very lengthy reply, let me suffice it to say that I am feeling am immense amount of relief in the knowledge that I am going to be in the hands of someone who really understands the complex nature of aortic surgery and seems to have an excellent bedside manner as well.
Anyway, I intend on having a wonderful, memorable Holiday season with my family all around me and I wish you all the same!
P.S. I am going in on Monday for the 64 slice CT scan so that it can be done ahead of time rather than waiting to get to California. They said I have to take extra meds to lower my pulse rate?they are going to take a careful look at coronary arteries and aortic arch. I?ll let you all know how that goes!
