harleygirl528
Well-known member
Hello Everyone!
Just an update...I finally chose a surgeon and have my surgery scheduled for January 16! It seems so strange to most to be "excited" about surgery but I can tell you than I am not only excited but relieved and looking forward to getting "on the other side of the mountain" as you who have been through it say.
I decided to go with Dr. Sharo Raissi at Cedars Sanai in Los Angeles. As many of you who have followed my story know, I did send my records out to Cleveland Clinic for review by Dr. Svensson and I know that he is one of "the best" but I was having a difficult time with getting anyone to follow up with me...I had to call and call just to get through to a secretary or nurse and never did speak with the doctor.
Anyway, thanks to the persistence of a few members here on the site, I sent my records to Dr. Raissi, via regular mail, and literally within a matter of days the doctor himself was calling my home phone and cell phone until he reached me. We spoke for well over and hour and just his manner of explaining things to me and speaking to me, without ever feeling like I was being rushed, was incredible! I think I knew within the first 10 minutes of speaking with this man that he was the one who was going to save my life! Don't get me wrong, I did my research ahead of time and I knew that Dr. Raissi was an aortic specialist and one of the most highly regarded surgeons in the country for aortic aneurysms so I wasn't just going by my "gut feeling" but I just felt that "peace that surpasses understanding" after speaking with him.
His secretary followed up with me today and I scheduled my surgery. I am so thankful that I will be able to get through the holidays with my family and have time to plan, unlike many others who weren't so fortunate. I will be meeting with Dr. Raissi on Monday, 1/14/08, do all my lab testing, blood work etc. on Tuesday, and surgery Wednesday morning.
After reviewing all my films, echos, ct scans, etc. here's what Dr. Raissi had to say (which is so exciting!~)
He says I have a "beautiful bicuspid valve" that actually functions quite well and he feels fairly confident that my native valve will be saved. He said that a "good valve" will last for many, many years. He says he has been doing this technique of saving otherwise well functioning bicuspid valves for over 10 years and only 1 patient, who is an extremely strenuous athlete, is getting close to needing a valve replacement. He did say that during my surgery they will do a TEE and they will raise my bp and see how my valve functions and if it still functions well then I will be able to keep my valve. If, however, it starts to leak worse then the valve will be replaced with a bovine tissue valve. He also felt, in his professional opinion, that if I go tissue and need another one in 15 years of so, that they will be done percutaneously, despite the fact that they are having problems with it now he felt confident that within 10 years they will have perfected the procedure. (This is based on his professional opinion, which of course I highly regard but of course I understand there are no guarantees)
He does believe that I have a connective tissue disorder as I present as the typical bicuspid patient where an aneurysm forms and goes up to the beginning of the arch. He says that many surgeons make the mistake of only replacing the ascending aorta and leaving the arch and therefore leave the patient vulnerable for future problems by not having that portion replaced as well.
He says that my aneurysm is already big enough for surgery for a male or female (4.8 cm) as he does not feel that waiting for it to get larger is a good idea, especially with someone who has fragile tissues (i.e. connective tissue disorder). He said that he doesn't need me to fly down there first and do more testing, he can see by my tests already done that surgery is recommended now. (Interesting, since Cleveland Clinic was going to have me pay to fly out there, hotel costs, etc. just to have additional testing and consult with doctor and then have to fly back out for surgery). Most important thing in the meantime he says is to keep my bp low. He says that bp control will be something that will remain of vital importance for the rest of my life, not just now.
I did talk to him about deep hypothermic circulatory arrest (DHCA)...as many of you may recall this was a big concern of mine. I did find out during my research that this is really necessary when operating on the aorta to protect cerebral functioning. Anyway, the two doctors I consulted with in Seattle both said that I wouldn't necessarily need this...which concerned me, of course. Dr. Raissi said that cerebral protection via DHCA is a hallmark of this surgery. He went on to say that it is a very delicate procedure and safety margins have to be well planned. He said that if a surgeon even suggested I wouldn't need DHCA, that should be a concern for me. He said he operates of judges, physicians, engineers, etc. and his results have been excellent in terms of cognitive functioning following surgery because of the safety margins that are carried out.
I have paraphrased much of what we spoke about but bottom line surgery is scheduled and I believe I have found a highly competent surgeon so just wanted to share my news!
Happy Holidays to you all!
Just an update...I finally chose a surgeon and have my surgery scheduled for January 16! It seems so strange to most to be "excited" about surgery but I can tell you than I am not only excited but relieved and looking forward to getting "on the other side of the mountain" as you who have been through it say.
I decided to go with Dr. Sharo Raissi at Cedars Sanai in Los Angeles. As many of you who have followed my story know, I did send my records out to Cleveland Clinic for review by Dr. Svensson and I know that he is one of "the best" but I was having a difficult time with getting anyone to follow up with me...I had to call and call just to get through to a secretary or nurse and never did speak with the doctor.
Anyway, thanks to the persistence of a few members here on the site, I sent my records to Dr. Raissi, via regular mail, and literally within a matter of days the doctor himself was calling my home phone and cell phone until he reached me. We spoke for well over and hour and just his manner of explaining things to me and speaking to me, without ever feeling like I was being rushed, was incredible! I think I knew within the first 10 minutes of speaking with this man that he was the one who was going to save my life! Don't get me wrong, I did my research ahead of time and I knew that Dr. Raissi was an aortic specialist and one of the most highly regarded surgeons in the country for aortic aneurysms so I wasn't just going by my "gut feeling" but I just felt that "peace that surpasses understanding" after speaking with him.
His secretary followed up with me today and I scheduled my surgery. I am so thankful that I will be able to get through the holidays with my family and have time to plan, unlike many others who weren't so fortunate. I will be meeting with Dr. Raissi on Monday, 1/14/08, do all my lab testing, blood work etc. on Tuesday, and surgery Wednesday morning.
After reviewing all my films, echos, ct scans, etc. here's what Dr. Raissi had to say (which is so exciting!~)
He says I have a "beautiful bicuspid valve" that actually functions quite well and he feels fairly confident that my native valve will be saved. He said that a "good valve" will last for many, many years. He says he has been doing this technique of saving otherwise well functioning bicuspid valves for over 10 years and only 1 patient, who is an extremely strenuous athlete, is getting close to needing a valve replacement. He did say that during my surgery they will do a TEE and they will raise my bp and see how my valve functions and if it still functions well then I will be able to keep my valve. If, however, it starts to leak worse then the valve will be replaced with a bovine tissue valve. He also felt, in his professional opinion, that if I go tissue and need another one in 15 years of so, that they will be done percutaneously, despite the fact that they are having problems with it now he felt confident that within 10 years they will have perfected the procedure. (This is based on his professional opinion, which of course I highly regard but of course I understand there are no guarantees)
He does believe that I have a connective tissue disorder as I present as the typical bicuspid patient where an aneurysm forms and goes up to the beginning of the arch. He says that many surgeons make the mistake of only replacing the ascending aorta and leaving the arch and therefore leave the patient vulnerable for future problems by not having that portion replaced as well.
He says that my aneurysm is already big enough for surgery for a male or female (4.8 cm) as he does not feel that waiting for it to get larger is a good idea, especially with someone who has fragile tissues (i.e. connective tissue disorder). He said that he doesn't need me to fly down there first and do more testing, he can see by my tests already done that surgery is recommended now. (Interesting, since Cleveland Clinic was going to have me pay to fly out there, hotel costs, etc. just to have additional testing and consult with doctor and then have to fly back out for surgery). Most important thing in the meantime he says is to keep my bp low. He says that bp control will be something that will remain of vital importance for the rest of my life, not just now.
I did talk to him about deep hypothermic circulatory arrest (DHCA)...as many of you may recall this was a big concern of mine. I did find out during my research that this is really necessary when operating on the aorta to protect cerebral functioning. Anyway, the two doctors I consulted with in Seattle both said that I wouldn't necessarily need this...which concerned me, of course. Dr. Raissi said that cerebral protection via DHCA is a hallmark of this surgery. He went on to say that it is a very delicate procedure and safety margins have to be well planned. He said that if a surgeon even suggested I wouldn't need DHCA, that should be a concern for me. He said he operates of judges, physicians, engineers, etc. and his results have been excellent in terms of cognitive functioning following surgery because of the safety margins that are carried out.
I have paraphrased much of what we spoke about but bottom line surgery is scheduled and I believe I have found a highly competent surgeon so just wanted to share my news!
Happy Holidays to you all!
