I'm new ~ here's my story

[BDMc]

Just want to welcome you aboard Michele. I don't know what to recommend about the cardiologist, but would second MGH and the Brigham as good hospitals. By far my favorite Boston hospital, is the New England Baptist. But I don't think they do cardiology, or valve replacement. Brian

 

[Michele]

Thanks. I've been looking at their website tonight. I had a friend recommend the Clevland Clinic because their protocol for surgery is a bit different than elsewhere. But it's a drive of course. Boston is much more accessible for me. How would I go about finding the best doc that specializes in ascending aorta aneurysm?


Good luck with everything, I can imagine how confusing and over whelming it must be to be told you have something serious, but everyone gives you differnt answers about what is going on.
I agree with everyone you need a good cardiologist to manage your care. IF you do have an annuerysm but it is 4.2 (and not dissecting) chances are it would be a while before you would need surgery. One thing to consider if this is something they will be keeping and eye on for years, with yearly or every 6 month check ups, is you might want to have good doctors a closer than Cleveland, and Boston has some of the best in the world. Then when the time comes IF you need surgery you could decide where you think would be best to could go.

Lyn,

Thanks for your reply. Well, it has been confirmed that I do have an aneurysm, so knowing this has brought some peace, as I finally have two specialists agreeing that I do. The confusion for me came when one said it was dissected and another said it was not. Certainly that is something I don't want to happen or want to let be and wonder. So the second opinion would be just that, an opinion on what is going on now. It's not for care through the years. I agree that Boston is much closer for sure. I just know Cleveland Clinic uses a different protocol for a surgery starting point.

Thanks so much!

 

[Michele]

See a cardio doctor and until you have a cath done they don't know anything! Mine was different sizes every test until the cath. Good luck! then it was bigger than that during my OHS.

Sounds like a cardiologist is definitely the way to begin this process. I wonder why neither my PCP or the surgeon recommended one?

I wonder why you kept getting different sizes with each test. Wow.

 

[Michele]

Just want to welcome you aboard Michele. I don't know what to recommend about the cardiologist, but would second MGH and the Brigham as good hospitals. By far my favorite Boston hospital, is the New England Baptist. But I don't think they do cardiology, or valve replacement. Brian

Brian,

Thanks! Good to know about MGH and Brigham. I appreciate the welcome.

 

[ALCapshaw2]

Michele -

In my NON-professional opinion, you would be best served by a Cardiologist and CardioThoracic Surgeon who has considerable experience doing surgery of the Aorta.

Mass. General and Brigham and Women's Hospitals are probably the Best in New England and have several highly ranked surgeons. You could Call the Hospitals or go to their websites and look for "Find a Doctor", starting in Cardiothoracic Surgery and then narrow your search to those who do Surgery of the Aorta (or Aortic Aneurisms). I would expect that there is at least one and maybe more than one such specialist at each of those hospitals.

Several of our members have used those hospitals and some have expressed preference for one or the other for various reasons. You could do a Search for MGH or B&W (and the various full names) to see if you could find those posts.

My mind is drawing a blank on the name of the Aorta Specialist at Cleveland Clinic. He is from South Africa and World Famous. AH, Dr. Lars Svensson is the Director of the Aorta Center at CC. Do a Google Search to check out his background if you are still interested in CC.
http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=4359

Personally, I would recommend a thorough investigation of the Boston Hospitals first since they are so close and should have surgeons qualified to do what you need.

One more *opinion*. Once your heart valve / aneurism problem has been identified, there is not much that a Cardiologist can do for you other than to recommend a good Surgeon. IMO, Surgeons have a better 'feel' for timing based on their desire to "Fix the problem" Before there is any Permanent Damage to your Heart Muscles and walls.

FYI, the Gold Standard for measuring and monitoring Aneurism's is either a Chest CT or MRI.

'Al Capshaw'

 

[RobThatsMe]

Hi Michele,

I would not wait on getting to the bottom of this.

Dissections and aneuryms are both serious conditions that are also known as the silent killers. My aorta is torn from my aortic valve all the way down, and then on to my left knee cap area. When the "big" tear took place, I was fighting for my life. The doctors told my wife to say her goodbyes to me, and that I only had a 3 to 6% chance of surviving the emergency surgery.
Prior to this incident, I had not warning signs and my doctors all siad I was in great health. I was 49 when this occurred.

Fortunately for me, when the ascending aortia dissected, the internal flap did not cut off the blood flow to the arteries going to the brain. If the dissection covered those arteries, or tore from their wall of the aortia, I would not be here today.

That was almost 10 years ago. Please get a second opinion, and be diligent about finding out if you "do" or "do not" have a dissection. The statistics say that 80% of those that have an aneurysm or dissection rupture, never make it to the hospital, and of those that do, many do not survive the emergency surgery.

From what you mention, it does sound like your aneurysm is still in a managable state that is a "monitor and wait" situation. Personally, I would be more concerned, at the moment, of the dissection.

I mention all of this above perhaps because I personally went through this, and wanted to share my thoughts. I have also posted my story in the member-stories section of the site.

If you have any questions that I can help with, please feel free to contact me.

btw... My mother, who was 80 at the time, had one valve repaired and another repaired at Mass General. They did a great job, and she was treated real good there.


Rob

 

[Ross]

Michele, Rob and I, along with 2 or 3 others here, are survivors of dissections. Most people DO NOT SURVIVE.

 

[Michele]

I PM'd it to her.

Sent you a PM back..finally!

 

[Michele]

Michele -

In my NON-professional opinion, you would be best served by a Cardiologist and CardioThoracic Surgeon who has considerable experience doing surgery of the Aorta.

Mass. General and Brigham and Women's Hospitals are probably the Best in New England and have several highly ranked surgeons. You could Call the Hospitals or go to their websites and look for "Find a Doctor", starting in Cardiothoracic Surgery and then narrow your search to those who do Surgery of the Aorta (or Aortic Aneurisms). I would expect that there is at least one and maybe more than one such specialist at each of those hospitals.

Several of our members have used those hospitals and some have expressed preference for one or the other for various reasons. You could do a Search for MGH or B&W (and the various full names) to see if you could find those posts.

My mind is drawing a blank on the name of the Aorta Specialist at Cleveland Clinic. He is from South Africa and World Famous. AH, Dr. Lars Svensson is the Director of the Aorta Center at CC. Do a Google Search to check out his background if you are still interested in CC.
http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=4359

Personally, I would recommend a thorough investigation of the Boston Hospitals first since they are so close and should have surgeons qualified to do what you need.

One more *opinion*. Once your heart valve / aneurism problem has been identified, there is not much that a Cardiologist can do for you other than to recommend a good Surgeon. IMO, Surgeons have a better 'feel' for timing based on their desire to "Fix the problem" Before there is any Permanent Damage to your Heart Muscles and walls.

FYI, the Gold Standard for measuring and monitoring Aneurism's is either a Chest CT or MRI.

'Al Capshaw'

Hello there Al,

I think you must have been reading my mind because this is what I am up to this very day. Calling down to MGH! Thanks for the link on the doc at CC, isn't google a good thing?!

You've given me some good insight since this is all new to me. I appreciate it. While I know the cardiologist would really just be recommending me for and to a surgeon, I am thinking it'd be wise to get some more work ups for my shortness of breath and other symptoms. Having someone else who manages my care rather than just me. Food for thought. It definitely would seem a surgeon would certainly have a better feel for when surgery is the best time for me.

So far, all test's I've had are CT scans with contrast.

Thanks!

Michele

 

[Michele]

Hi Michele,

I would not wait on getting to the bottom of this.

Dissections and aneuryms are both serious conditions that are also known as the silent killers. My aorta is torn from my aortic valve all the way down, and then on to my left knee cap area. When the "big" tear took place, I was fighting for my life. The doctors told my wife to say her goodbyes to me, and that I only had a 3 to 6% chance of surviving the emergency surgery.
Prior to this incident, I had not warning signs and my doctors all siad I was in great health. I was 49 when this occurred.

Fortunately for me, when the ascending aortia dissected, the internal flap did not cut off the blood flow to the arteries going to the brain. If the dissection covered those arteries, or tore from their wall of the aortia, I would not be here today.

That was almost 10 years ago. Please get a second opinion, and be diligent about finding out if you "do" or "do not" have a dissection. The statistics say that 80% of those that have an aneurysm or dissection rupture, never make it to the hospital, and of those that do, many do not survive the emergency surgery.

From what you mention, it does sound like your aneurysm is still in a managable state that is a "monitor and wait" situation. Personally, I would be more concerned, at the moment, of the dissection.

I mention all of this above perhaps because I personally went through this, and wanted to share my thoughts. I have also posted my story in the member-stories section of the site.

If you have any questions that I can help with, please feel free to contact me.

btw... My mother, who was 80 at the time, had one valve repaired and another repaired at Mass General. They did a great job, and she was treated real good there.


Rob

Hi Rob,

Thanks so much for the reply. I appreciate so much you sharing your story.
I am not desiring to delay in getting to the bottom of this and I it's good to have people willing to discuss it with me. It's very helpful to me in this process. I didn't realize there was a member stories section of the site. Oops!

I am thankful that you were blessed to survive such an ordeal. I know dissection is serious business. My concern right now is of the dissection and whether it's truly one or not. I know I'd know, from what the doctor said and such. However, since one surgeon said it was and another said it wasn't, we'd like to be sure.

Well, I am off to try to schedule my appiontment.

Peace,
Michele

 

[Michele]

Michele, Rob and I, along with 2 or 3 others here, are survivors of dissections. Most people DO NOT SURVIVE.

I know Ross.

Thank you.

 

[Herburban1]

I would get into the Heart Center at MGH. I see Jonathan Passeri. He specializes in valve disease.The DRs. there are very specialized to direct you toward the answers you need.