Thoratic aneurysm advice please!

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R

ruthie

New member
Joined
Oct 1, 2010
Messages
3
Location
Georgetown, Tx
Hi Everyone,

I am a 43 female, 5'9, thin, bicuspid valve, moderate stenosis, regurgitation, aneurysm measured at 4.75 with echo three weeks ago via scan. The cardiologist (whom I love, but his staff is not quick to respond - took 2 weeks to get a return call) says I need another CT scan. My last CT scan showed me at 4.6. Previous CT showed 4.9.

I have had some severe chest pain which has caused me to wake from sleep. I have to breathe through it. I went to the doctor and they say it's "stress" and put me on stress medication. I'm now on five medications (including a beta blocker).

If I vacuum my house, I'm wiped for the day. I need a nap. This is not my normal activity level. I'm napping all the time. I'm just plain exhausted.

Doctors don't seem to be "TOO" concerned, but I have THAT GUT FEELING that I need to do something. The cardio told me that they've reduced the "required numbers" for a thoratic aneurysm to 5.0. At 4.75, doesn't it seem like I'm there? Skip the funnies and get this fixed?

I'm living in Austin,Texas. I recently saw the cardio in Houston. Would you have surgery in Houston (I have parents who are wonderful and would care for me) or in Austin, to be near my husband and kids?

Thank you for your advice! I truly treasure each bit!

Ruth
 
Ruth, I don't have your same condition, so don't have personal experience with it, but have read quiet a bit about it from members on here. I personally wouldn't be comfortable in your position. First of all, there is nothing magical about that 5.0 number, and you are experiencing symptoms. Have you been to see a surgeon yet or have you only seen your cardio at this point? More than one of us have experienced cardio's who like to wait until damage (or worse) have been done to send you off to see a surgeon vs. surgeons, who like to get in there and get things repaired before permanent damage occurs. So, if you haven't met with a surgeon, I would get on that THIS week. And I would not leave that in the hands of the office that took two weeks to get back to you. Trust me, you want to be able to chose your surgeon vs. have a surgeon chosen for your in an emergency.

Also, I just will add one more thing. I really believe that when we have THAT GUT FEELING, we need to act on it. There is a reason that we have it. You need to act on yours.

If you have more support in Houston, then by all means, head there to have your surgery. You'll get plenty of recommendations from here if you want them. We have had several members who have had their surgeries done there.

Best of luck to you.
 
Hi Ruth,
I'm just down IH35 from you, so I'm familiar with the area. I had my surgery in San Antonio back in 1999 -an AVR with no aneurysm.

I don't mean to alarm you, but I'd sure get a second opinion if your cardiologist is that slow getting back to you. My skin crawls when doctors try to push off a woman's symptoms to "stress" when you're having pain that wakes you in the night and you're exhausted during the daytime. That is not normal..!!!

Trust your "gut feeling" Ruth and get a second opinion. Austin has some good cardios and we have members here who live in Austin and have had their surgeries there.

Houston is a great place for heart valve/aneurysm surgery. The Texas Heart Institute is known worldwide for it's excellent care and top surgeons..! Use the search function on this website to search for "Ott" and "Coselli" who are top valve surgeons in Houston.

All the best to you Ruth and utilize that search function here and you'll be steered in the right direction.

Two Austin gals on here that I can think of right now are TXWILDFLOWER and LOUISE..
 
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With your numbers and symptoms, I concur that a Second Opinion is definitely worth pursuing, and recommend that you make it with a Surgeon. Once the problem is identified, there isn't much that a Cardio can do to FIX it. That is the domain of CardioThoracic Surgeons.

I have a Heart Nurse Friend in Austin who provided the following information for another member here.


The following names came from my friend in Austin:

Dr. Dewan or Dr. Kessler in Austin.

Dr. William Ryan in the DFW area is a well known surgeon with extensive experience doing Valve Procedures.

The Texas Heart Institute in the Denton A. Cooley Building next to St. Lukes Episcopal Hospital in Houston, TX is Top Rated Heart Hospital. Google "Texas Heart Institute" for contact and other info.

Dr. Joseph Coselli is Chief of Adult Cardiothoracic Surgery at THI.
Former member "Oaktree" credits Dr. Coselli with saving her life after a Botched AVR in another state for BAV and possible Connective Tissue Disorder. As she stated, he pulled her back "from death's door" when her valve had nearly come 'unstitched'. I don't remember their other Valve Surgeons but I know they have several highly regarded CardioThoracic Surgeons. For Complex (Aorta) Surgery. I would be inclined to recommend The Texas Heart Institute in Houston.

'AL Capshaw'
 
I have a 4.6 aneurysm with mild stenosis and they have me waiting also. I got a second opnion on the aneurysm from a surgeon and he stated that it needed to be watched but not fixed at this time. If my valve gets bad enough to get fixed, then they would do the aneurysm at that time. The pain and exhaustion could very well be from the stenotic valve. I agree with Al that a second opinion from a surgeon would be a good idea. Stay on top of your gut feeling and let us know if we can be of further help!!
 
ALCapshaw2 said:
The following names came from my friend in Austin:

Dr. Dewan or Dr. Kessler in Austin.

Dr. William Ryan in the DFW area is a well known surgeon with extensive experience doing Valve Procedures.

The Texas Heart Institute in the Denton A. Cooley Building next to St. Lukes Episcopal Hospital in Houston, TX is Top Rated Heart Hospital. Google "Texas Heart Institute" for contact and other info.

Dr. Joseph Coselli is Chief of Adult Cardiothoracic Surgery at THI.
Former member "Oaktree" credits Dr. Coselli with saving her life after a Botched AVR in another state for BAV and possible Connective Tissue Disorder. As she stated, he pulled her back "from death's door" when her valve had nearly come 'unstitched'. I don't remember their other Valve Surgeons but I know they have several highly regarded CardioThoracic Surgeons. For Complex (Aorta) Surgery. I would be inclined to recommend The Texas Heart Institute in Houston.

'AL Capshaw'
Click to expand...

Austin Heart for Cardiologists: Austin Heart

Cardiovascular Surgeons: Cardiothoracic and Vascular Surgeons

Both have excellent doctors and office staff.
 
ruthie said:
I have had some severe chest pain which has caused me to wake from sleep. I have to breathe through it.
Ruth
Click to expand...

Are you on any type of acid reflux medication? You may be having reflux during sleep. I had big reflux issues a while back and was on prescription meds for a long time. Occasionally have issues now and when it acts up, Prilosec OTC works well. Have to watch it with INR though as it can raise my INR.
 
I concur with the excellent advice you've been getting in this thread. I would definitely consider a second opinion. As others have said, 5.0 is not a magic number -- for someone of smaller frame, an aneurysm below 5.0 may have reached the stage for remedy. I don't mean to scare you, but it is of concern that you are experiencing symptoms. I would get that second opinion.
 
I am a 39 yr old male that was diagnosed in May with the following:

Bicuspid Aortic Valve
Aneurysm - descending aorta, aortic arch and left subclavian artery measuring 4.8cm

I was diagnosed in College Station where I reside, but they sent me immediately to the Texas Heart Institute @ St. Luke's in Houston. I chose Dr. Joseph Coselli as he specializes in aneurysms and his pedigree is incredible.

On June 24th, I had my first open heart surgery to replace the valve, b/c it was pretty much shot (I am an avid runner and it was worn out and actually prolapsed). Because of the position of the aneurysm (descending aorta/left subclavian), it could not be repaired in this surgery.

On August 31st, I had my second open heart surgery to repair the aneurysm (they went in from the back - shoulder blade area) and it was also successful. I highly recommend Dr. Coselli, his office staff, nurses, etc were incredible and really know what they are doing. Being located nearly 90 miles away, they were great after I went home from surgery in answering questions, following up, etc.

This is my opinion and my opinion only, but I would not wait as you have been advised, I would immediately go meet with Dr. Coselli if you are able, or someone at the Heart Institute and let them give you their prognosis. They see these every day and are experts at giving you all of your options in layman's terms.

If I can answer any questions or be of assistance, please let me know.

J
 
Ruth,

May I recommend St Lukes Heart Institute, located in the Houston Medical Center. If it were me and I lived in Austin, I would make that short trip to Houston. I live appox 1 hr away, so it was not a big deal really. You are having symptoms, and I definitely would not wait. Make that appt. now.

Please keep us updated.
 
I lived almost 20 years with an aneurysm about the size of yours in my ascending aorta. (It was first seen on a routine chest x-ray.) When the aneurysm was first discovered the cut-off for surgery was way up to 6 cm. That was because the risk of the surgery was considered greater than the aneurysm at that time. Then, as the surgery got safer, the cut-off was moved down to 5 cm. BUT, I was put on massive beta blockers and had my aneurysm xrayed often. The size went a little up and a little down, depending on the xray and reader of the xray. However, it never progressed to 5.0. I DID take extra care to not stress my heart--avoided aerobic exercise and heaving lifting. (This was controversial on this forum, I discovered.) After about 13 years my aortic valve was finally discovered to be bi-cuspid. In 2008 I was unable to walk more than 10 feet or so w/o stopping to catch my breath. Finally the cardiologist said "Time for surgery" but I had already figured that out!

Anyway, your aneurysm size alone may not be alarming, especially if you are on lots of beta blockers. On the other hand, however, you are already having OOB symptoms, so the aortic valve may be problematic. That chest pain at night is scary! A second opinion and, probably, some different tests might give you more accurate advice on what you should do.
 
i would like to throw in that before surgery the CT Scans and Echo's (multiple times before surgery) all showed my anuerysm to be 4.8cm.

after surgery I asked the surgeon how big it actually ended up being. it was only 4.2cm. I shouldn't say only, but if I would have known that it was 4.2cm I probably would have waited a lot longer before I got my surgery!
 
Ruth, a heart felt WELCOME to our OHS family glad you are getting some of the information that you are seeking and there is swealth of knowledge here for the future .....
a list of acronyms and short forms http://www.valvereplacement.org/forums/showthread.php?27413-List-of-Acronyms-and-Glossary

what to ask pre surgery http://www.valvereplacement.org/forums/showthread.php?26668-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/forums/showthread.php?19034-Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well
 
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