newbie...recently diagnosed aortic aneurysm

[Tom F.]

I am former navy, retired out of the reserves in 2000. So other than the annual physical (which missed all of this) I did not have to deal with the active duty medical limits. And that is an OLD picture!

I learned on the net about the Ross Procedure, and I saw that as a opton. So I looked for someone who could offer that, many docs cannot. I found a good one, he educated me about the valve sparing procedure as a better choice. I think if you go to Cleveland you will likely find a good one.

 

[harleygirl528]

Cleveland Clinic

Cleveland Clinic

I agree Tom, much better to spare the valve if possible. I am leaning toward the Cleveland Clinic even though it will involve a lot of logistics and issues with follow up care etc. but I know that they are the best. When you went for surgery, how long did you stay in the area following your discharge from the hospital? My cardiologist here locally said that he would only be comfortable doing my follow up care if I stayed in Cleveland for a couple of weeks following discharge so the doctors there could do my followup. When I contacted the Cleveland Clinic they required that I send all my records ahead of time via fed ex and they will have they docs review everything and get back with me within 2-4 weeks, did you have to go through a similar process and how long did they take to get back with you?

As always, thanks for your time Tom...I really appreciate it. The more information I have the better I feel about everything!

Take care!

 

[Tom F.]

First, feel free to E mail me directly at [email protected] for more info if you want.

My surgeon was local here in Chicago, so I went in on a friday, out on tuesday, and did not have to see anyone until 4 weeks later. I just had two meetings before the surgery along with a few tests.

Cleveland is great, but you also have Cedars in Los Angeles as a closer option. I bet if you hunted around you would find more docs offering the valve sparing procedure. In reality we are all different. Some get through this fine, others need follow up care, which is why your doc wanted you to stay put for a while. Its just in case. You will likely be fine, most are. But just in case he wants you near your surgeon.

 

[thenewmarket]

Your recent post concerning protocol at Cleveland Clinic is correct. My husband recently had surgery there for an ascending aortic aneurysm (5.1) and they REPAIRED his bicuspid aortic valve. Once we forwarded our information, we heard back from them within 2 1/2 weeks. It seemed like an eternity at the time but in retrospect it was not long. My husband age 51 had absolutely no symptoms and his bicuspid valve had never been detected. We certainly realize how blessed we are that the aneurysm was found.

I think you will find most people returning to their home for follow up care. We live eight hours away from Cleveland and we came home three days after my husband was released from the hospital. I'm sure they will do follow up care in Cleveland but you will certainly be ready to go home!

I admire you for being proactive about your surgery.......you want a surgeon who is an experienced aorta specialist and you will definitely find that at Cleveland Clinic.

 

[harleygirl528]

Yes, I agree, the time waiting for a reply can seem like an eternity...after you received your answer did they have you travel to Cleveland for an intial consultation or did they simply agree to do the procedure and you just showed up for surgery? I have to time everything with my insurance and change my address to the Cleveland area just prior to arriving...I will probably have to go out there a few days ahead of time just to make sure appropriate referrals are occuring etc. Seems like a lot of hassle and logistics but I only have this one life and it will be worth it just having the peace of mind knowing I am in the hands of "the best."

Thanks everyone for your ongoing support!

Lorie

 

[shellyb]

My husband's surgery was on a Wednesday. He was scheduled for pre-op tests Monday and Tuesday. They are experienced in working with out of towners.

shellyb

 

[harleygirl528]

Cleveland Clinic

Cleveland Clinic

I am so encouraged by the continued accolades that the Cleveland Clinic receives! I wasn't even aware that a bicuspid valve could be repaired instead of replaced! I am starting to feel more and more comfortable with traveling to Cleveland, even though the logistics will be difficult and I am realizing that I probably don't have to stay in Cleveland for any extended time beyond a few days post-op. I know I will be ready to back home to my children, my beautiful home and my beloved pets! I am going to go ahead and consult with the docs here at Swedish in Seattle, but at the same time my records will be forwarded to Cleveland Clinic tomorrow. They say they can't seem me any time soon at Swedish anyway because of their schedule so I may hear from CC first. I know that if I go to CC I will get the absolute best care possible and any and all decisions about replacements versus valve sparing will be made appropriately!
Thanks again to everyone...you guys have really transformed my existance from one of constant fear and anxiety to calm acceptance and understanding...and even gratitude since mine was discovered and gives me the opportunity to deal with it on a non-emergent basis!
Thanks again from the bottom of my heart (pardon the pun!)

 

[Ross]

Like I said before, if you can't make one of the big names, find someone that is a specialist in aortic surgery close to you and that has done many of these and go with that. It's more important that you get taken care of, then where you get taken care of.

 

[harleygirl528]

I totally agree Ross...only problem is my husband is active duty military and the ONLY place here locally that accepts our insurance is Swedish Medical Center in Seattle....and I am not sure that their docs are capable of performing the type of surgery I need or...more importantly...if they are experienced enough. I would gladly go to Univ of Wash which is in Seattle if I could with my insurance because I have researched the docs there and there is one in particular who specializes in aortic root/arch repair and actually teaches other docs how to do it.(Dr. Gabriel Aldea) ...but I can't see him....so my alternatives aren't as good as many others since my insurance is so very restrictive. I wish I had the freedom of choosing whomever I wanted based on my own assessments and research...but I cant...and I am here to tell you the stress of dealing with insurance on top of everything else has NOT been fun. I will get through it though....Swedish says they are booked up for quite a while and can't even see me soon so maybe Tricare will make an exception because of that....one can hope! I will know more tomorrow! Thanks for your input...appreciate it!

 

[Curtsmum]

Hi Lorie,
just wanted to say good luck with your surgery and hope you get things sorted out with your insurance, best of luck.

 

[harleygirl528]

Thanks for all the well wishes...I have finally compiled all my medical records including a multitude of recent tests and studies on CD and will be sending everything off to Cleveland Clinic in the morning. Pray for a speedy reply and a positive response....I would feel so much better about all this knowing that I had "the best" care....

I can't say enough how much everyone's input and support has meant to me..although my husband is feeling a little left out...I am spending an inordinate amount of time on the computer....you guys are my new best friends!! Thanks so much!!

 

[Plumber1]

Harleygirl,

You have what I believe to be an extremely fine surgeon at Swedish who came from the UW hospital after being in charge of cardiac surgery for a number of years. His name is Bill (William) Curtis. My family and I owe a debt of gratitude to Dr. Curtis as he saved my life in 1997. He has gentle and kind hands and a lot of experience under his belt.

I too have an aneurysm and will have a my aortic valve replaced with on-x and Dacron conduit on the morning of the 10/30/07. But will have the procedure done here in Olympia. I would have had Dr. Curtis do this surgery but there are complicated and unusual circumstance for me.

You seem to be a fighter, these surgery's are scary for sure but the odds are with you and I know you will pull through with flying colors.

MK

 

[harleygirl528]

Plumber1,
Thank you so much for the info on Swedish...I actually have a consult on Monday, Nov 5 with Dr. Teply....so I do appreciate your words! My prayers and positive thoughts are with you and your family for your surgery tomorrow! Praying for a successful surgery and speedy, uneventful recovery!

Can't wait to join you on the other side of the mountain!