Another new Member

[MarkG87]

Although I bookmarked and lurked about 3 years ago when I was 1st diagnosed with a Bicuspic Aortic Valve. Was told then 5-10 years for surgery and was told last Thursday that the time is now, I've become symptomatic So, I meet with a surgeon next week, 11/2. Will probably be done in November. Symptoms started getting worse after we bought a house here and moved from our rental house. I just did too much. But, after researching this the last few days, I have been having some symptoms for a few months and just wasn't relating them to my BAV. At my July checkup, my pressure had increased from roughly 3.4 to 3.9 and this worried my cardiologist enough to schedule a 3 month cat scan. After that, with my symptoms, I was told the time is now.

I moved from Il to Tn a year ago and did some research on the city we chose, Cookeville, and the Hospital here. They do have a highly rated Heart Center and are doing Minimally invasive surgery with the Da Vinci Robot. We are 1 hour from Nashville and Vanderbilt as well. But, I feel very comfortable with the chioce to stay here.

Like all, my nerves are going a mile a minute at this time. Although I'm only 51, I am still leaning toward the Natural valve for replacement. I do have some other health issues, Asthma And GERD, and do not look forward to adding another medication with the possibilities of complications. Plus, if another surgery is needed, I think medical advancement will be so far along that it may even be done non-invasive.

So, for now, I just wait until Tuesday. I notice every little thing and am very tired. I work from home, but have only enough energy to work a few hours a day. He resticted my activity and I am following that very strongly. Feel like a lump, there's still a lot to do with our move, but it's not worth pushing it. I'll followup after my appt.


Mark

 

[Lynlw]

Hi Mark, Welcome. You've had a pretty busy year. I got tired just thinking of all you've had going on It sounds like you took the time since you found out you would need surgery in the next 5 or so years to research and think about what is best for you. I think it was pretty good thinking to look into hospitals when you were making the decision to move.
I'm sure you will have lots of questions as your getting ready for your appt next week. IF we don't have answers, I think this is a great place to think about good questions to ask when you meet with your doctors.

 

[Duffey]

Hi, Mark.

You'll know more after your Tuesday appointment, but if the surgeon recommends surgery, I would ask him how many replacements he's performed with the Da Vinci.

The waiting is the toughes part, I think, but we're here to keep you company on your journey.

Looking forward to your next post,

Mary

 

[Penny]

welcome to the forum Mark
Most of us have been where you are right now and know all to well the journey you are facing.. this site is full of information and wonderful caring people who will answers questions to the best of our ability. You mentioned your nerves are "going a mile a minute"... I know exactly where you are right now but not to worry it will be over before you know it...if you have any questions.. ask away.
Take care.. Penny

 

[Johan]

Welcome Mark. One of the pleasant side effects of my VR surgery is that ALL my GERD (or GORD as we call it) symptoms disappeared immediately after surgery and have not returned now more than a year later. I have suffered from reflux very badly for many, many years. It was so bad that I could only sleep on my back in a semi-upright position propped up with pillows. Over the years I have had many oesophagus examinations and a hiatus hernia was diagnosed. Medication didn't really help me.

Then came the OHS surgery and, pooof, gone are all the GORD symptoms. I can sleep in any way I want and have not had a single reflux episode since my OHS surgery. All my Dr's are mystified. It is highly unlikely that the GORD was a symptom of my stenotic valve as the former was present many years before my valve reached severe status.

It is so wonderful to be free of GORD that I wish you the same, along with a smooth and complications-free surgery.

 

[Marguerite53]

Hello Mark and welcome to our wonderful community. So glad you decided to join us. Sounds like you have made very thoughtful and wise decisions so far, so don't you worry about that valve choice dilemma. I was 52 (3.5 months into age 52) and chose tissue (I can PM you with some of my more private reasons for doing so -- just ask). My surgeon was my age and he said it was the valve he would use for himself or any other loved one. My gut instinct was to give tissue a try, even though some people with tissue valves still have to be on coumadin. You just never know what your own particular situation will demand. I only take a baby aspirin (which I would anyway at this age) and some very low blood pressure meds. I am very happy with my choice and VERY LUCKY that it all worked out in my favor. Everyone is different.

Talking with your surgeon is sure to get you the information you need to make a good choice. The right choice is getting the surgery done!! You have accomplished that part and that's not easy!

It is surprising how rundown this whole business can make you feel. I remember having the family home for the holidays; knowing I could schedule surgery any time (the numbers were there) but pushing it out to April for everyone's convenience. Anyway, for fun I was prompted to do a little ball room dance type moves to some music that was playing -- I did a few turns and then ducked behind a wall (pretending it to be a coy move) and thought, OMG, I can't keep this up! I'm going to collapse right here in front of them! Someone else jumped into the fray and I was rescued, but oh! I had had no idea that I had degraded to that point. And I know I'm not the only one who has experienced what you are feeling right now. It is normal. But of course, it is time to fix things! So try to enjoy this wonderful excuse to sit around like a couch potato! In a few months you'll be running circles around everyone! Really!!

Do come around and ask us anything you want. We are happy to help.

Best wishes.

Marguerite

 

[RobThatsMe]

Hi Mark,

Welcome to the the site!

I live just south of Nashville, and recently had my "re-do" aortic valve replacement. I had a mechanical St Judes, but due to Pannus growth under the valve, the valve had to be removed, replaced, and the pannus also removed. It was replaced with another mechanical valve, an On-X, as this valve is designed to also reduce pannus issues.

Selecting both the hospital and surgeon is truly a very personal process, and one that should be done carefully, weighing all options. At first, I was concerned about my family and friends being able to visit me as I went through the surgery and also post-op. A friend of mine said, "There is ony one you - so...if they don't get to see you right away, at least you selected the best option, and your family and friends can see you after you recover." Then, as I was trying to determine which hosipital was the best for me, another friend said... "if both hospitals are covered with your insruance, and there is no difference in hospital/doctor costs, why would you select the number 2 rated hospital if you can als go to the #1 rated hospital".

I weighed these comments very heavily as I went through my process. I am sure that each person has their own answers to those comments that my friends made to me, but thought I would share, not to muddy the waters, but more to insure that you really think/thought this through.

Have you looked at the USNEWS Best Rated Hospitals in America report? Vanderbilt Hospital in Nashville is rated at 24th best in the nation for Heart. St Thomas is not rated, and Cookeville is, but not in the higher ratings. The link below will bring you to the report, and the hospitals within the Cookeville area that are rated.
you may find this interesting information to consider. You can also drill-down report to find the top rated hospitals by specialty and ranking.

http://health.usnews.com/best-hospi...red=All&city=Cookeville&state=TN&zip=ZIP+Code

Good luck with your final selections and most importantly with your surgery. Wishing you a very successful surgery, and post-op recovery.

Rob

 

[Eva]

...........
............if another surgery is needed, I think medical advancement will be so far along that it may even be done non-invasive.

............ I am following that very strongly. Feel like a lump, there's still a lot to do with our move, but it's not worth pushing it. I'll followup after my appt.

Mark

Welcome Mark. One of the pleasant side effects of my VR surgery is that ALL my GERD (or GORD as we call it) symptoms disappeared

Welcome aboard, Mark, and good luck on 11/2. Make sure you write down every question you think of and make sure you do not forget the paper at home (as I did!)

I, too, needed surgery one year after we moved to our new house, but I am glad that the move had pushed things fast forward towards surgery; otherwise, I would have continued to suffer from symptoms I kept ignoring before as I related them to other issues (anxiety, stress, age , etc.)

The sooner and the stronger you and your heart muscle are the better for you.

I am glad you are playing it wise and are following your doctor's recommendations well...house, furniture, etc. all can wait without being affected, except health.

Making a choice and being happy with your decision is a BIG RELIEF :thumbup:

As recommended above, check with your surgeon about his experience in this procedure.

I also like to add that my GERD had much improved since my surgery too :cool2:

 

[ShezaGirlie]

Well, remind me not to move into a new house....j/k

Well, remind me not to move into a new house....j/k

Hi there Mark and welcome..!!

Sounds like you've certainly got your ducks in a row and set to go; however, I sure would take note of Robthatsme's comments about Vanderbilt..:thumbup:

And as fast as Johan's gord/gerd went *poof* so did my migraine headaches and that was a wonderful thing.

 

[MarkG87]

Rob,

Thanks. I have looked at that site. Cookeville Regional is getting a good rep as well. The surgeon I am to meet with just moved up here from Memphis and his partnet I know has been doing the DaVinci surgeries for awhile. They also seem to have a good rehab center. I am going to see if I can visit all of that when i have my appt.

Be sure I will be comfortable with my choice once I make it.

Mark


http://www.ucdailynews.com/news/hea...NARY-INTERVENTIONAL-PROCEDURES-105481828.html

 

[ALCapshaw2]

Mark -

You didn't give the measurement units for those numbers.

Pressure Gradients below 10 mmHg (millimeters of Mercury) are considered to be Very Low and NOT of concern so I'm thinking those numbers are actually the diameter of your Aorta or Aortic Root in cm. The usual recommendation for Aorta Surgery is 5.0 cm but the fact that your numbers were increasing is certainly something to be 'watched'. Connective Tissue Disorders and Aortic Aneurysms are often associated with BAV. Be sure to ask your surgeon about his experience doing Surgery of the Aorta which is another step up in Heart Surgery Complexity. As several of our BAV Members discovered, EXPERIENCE COUNTS. It would be preferable to treat both the Valve and Aorta in ONE Surgery than to have to come back for another because the aorta issues were overlooked or 'dismissed'.

You may want to browse through the Bicuspid Aortic Valve and Connective Tissue Disorder Forum if you have not yet done so.

'AL Capshaw'

 

[MarkG87]

Al,
Not sure, I really didn't get too many numbers. He told me pressure 3 months ago. Like putting your finger over the end of a hose. Valve opening down to about 1 cm. But major cause to do now is symptoms. Will get more from surgeon Tuesday.

 

[Mentu]

Hi, Mark, welcome aboard. You may want to look over the lists of questions that have been put together and select from those of interest to you. I, too, suggest you take your list with you as it is hard to remember all the questions in the face of the new information one is receiving. The sudden loss of energy is one of the symptoms that many of us have shared before surgery. Fortunately that is substantially corrected by the valve replacement. Johan mentioned that his GORD symptoms disappeared after surgery. My Doctor has no idea why it should have happened but I no longer have severe pollen allergies. I'm 60 now but since I was a teenager, I've dreaded September and October which always brought on the sneezing, stuffy sinuses, runny nose, and in later years bronchial infections. I didn't really pay attention after my September AVR until one day in November I realized that for the first time in memory I had passed through an autumn without needing any antihistamine. As this past spring advanced and now another autumn, I am still free of pollen allergy symptoms. So, yes, new medications can and probably will bring bothersome side effects but there are likely to be other very positive compensations. Take care, Mark, and let us know how we can be of help.

Larry

 

[Greg a]

HI MARK and

welcome

to this fantastic family it always amazes me that in under 5 hours you and others recieve so much positive feeback and you can quickly come to a realisation that you are not alone in this journey...keep the family posted

 

[MarkG87]

Mark -

You didn't give the measurement units for those numbers.

Pressure Gradients below 10 mmHg (millimeters of Mercury) are considered to be Very Low and NOT of concern so I'm thinking those numbers are actually the diameter of your Aorta or Aortic Root in cm. The usual recommendation for Aorta Surgery is 5.0 cm but the fact that your numbers were increasing is certainly something to be 'watched'. Connective Tissue Disorders and Aortic Aneurysms are often associated with BAV. Be sure to ask your surgeon about his experience doing Surgery of the Aorta which is another step up in Heart Surgery Complexity. As several of our BAV Members discovered, EXPERIENCE COUNTS. It would be preferable to treat both the Valve and Aorta in ONE Surgery than to have to come back for another because the aorta issues were overlooked or 'dismissed'.

You may want to browse through the Bicuspid Aortic Valve and Connective Tissue Disorder Forum if you have not yet done so.

'AL Capshaw'

Don't have the results of my current test, but I do have my 2008 test. The change from 3.4 to 3.9 was the AV Flow Velocity. My mean pressure gradient was 24mmHg, peak was 54 mmHg. From this test I was told that Aorta is in very good shape, including the Aortic Root. This is of great concern to me since both My father & uncle (brothers) dies of Aortic Dissection within 10 months of each other in 03/04.

The Aortic Valve has been diagnosed with Moderate-Serious Stenosis. But, that is all that they have seen that is wrong, so hopefully that will mean that this will be a procedure that only needs to replace the valve.

 

[Freddie]

Don't mind me, just wanted to say "Hi" and Welcome.

 

[bigsidster]

Good luck Mark----Looks like NOVEMBER is going to be a very busy month for the group here.

 

[ALCapshaw2]

Don't have the results of my current test, but I do have my 2008 test. The change from 3.4 to 3.9 was the AV Flow Velocity. My mean pressure gradient was 24mmHg, peak was 54 mmHg. From this test I was told that Aorta is in very good shape, including the Aortic Root. This is of great concern to me since both My father & uncle (brothers) dies of Aortic Dissection within 10 months of each other in 03/04.

The Aortic Valve has been diagnosed with Moderate-Serious Stenosis. But, that is all that they have seen that is wrong, so hopefully that will mean that this will be a procedure that only needs to replace the valve.

Aorta Disection is most likely a sign of a Connective Tissue Disorder (which I'm thinking can be a hereditary risk factor) that should be checked out by a Knowledgable Surgeon. "Even If" your Aorta has not enlarged to the trigger level for replacement, IF you are found to have a Connective Tissue Disorder, a knowledgable surgeon would likely want to place a 'sheeth' around it for support and to prevent rupture. The surgeon may not be able to determine whether your aorta has a Connective Tissue Disorder until he actually sees it which is why it is wise to select an experienced Aorta Surgeon (i.e. one who can recognize the 'signs' and knows what to do and how to do it). Dr. Svensson at The Cleveland Clinic is Head of the Department of Connective Tissue Disorders at CC.

I recommend that you obtain copies of ALL of your Test Reports and have copies of the Reports and actual Tapes / CD's sent to any/all Surgeons you interview.

'AL Capshaw'

 

[RobThatsMe]

Hi Mark,

I had an Aortic Dissection rupture. It tore from my heart valve all the way down to my left knee cap. I am one of the few to survive this, as I am sure you most likely already are aware of the odds of survival of a dissection that ruptures.

I agree with Al, that if you do have a weakening, or any other signs that you are in risk of a disection, then you most likely will require a new valve with graft.
Be sure get this throughly checked out. Disections and Aneurysms are nothing to mess with. They are the silent killers unless discovered early, or get extremely lucky.

Get the tests, especially if connective tissue disorders run in the family,and since you are going o have surgery, get everythings fixed while they are under the hood.

Echos are a start for testing for aneurysms and dissections, but the best tests are CT's, or MRA's. You'll need CT's anyway prior to your surgery. Most surgeons will require a CT, TEE and a CATH prior to open heart surgery.

There are a few of us on here that have had aneurysm and dissections that have ruptured. They used to have a place on here for members to post their stories, but I cannot seem to find it any longer on this "new" site layout.

Keep that research going, and stay positive.

Rob

 

[MarkG87]

Had the CT last Monday, before my visit to the Cardio. Showed no damage at all to the Aorta. Actually, because both Dad & Uncle had a descending Aortic Dissection, They took the CT way down. Found out that my prostate is enlarged, not a suprise though. Cardio has stated by looking at my results, both from here and from Illinois, that there is no evidence of any damage to the Aorta and only wants to keep an eye on it every 5 years. They already mentioned that they will schedule both the TEE and CATH. Had both 3 years ago and both were very good as well.

I am very aware of how the dissections are silent killers. My dad actually suffered his right after giving a eulogy for my uncle at a later memorial service. Walked back to his table, grabbed my cousins wife & dropped. Never knew he had it. Died at 73, way too young. So, I'm aware and all males in our generation in our family are having this checked every 5 years.