BAV w/Severe Stenosis - QUESTIONS

[the art den lady]

I'm still new to this site. My stenosis was just diagnosed as severe. So I'll be setting up the surgery on Monday. Hopefully around February 15th or so.

The surgeon thought that I should schedule surgery sooner than later. Has anyone out there had severe stenosis? And if so how soon did your surgery occur? I realize every case is different, but thought I could reassure my hubbie and 11 year old daughter.

Thanks so much. I've already got a great list of what to bring to the hospital. This is a fantastic site and it helps to have someone there who has gone through OHS or will go through OHS.

Jackie
-------------------------------------------------------

1995 - TIAs started, Aspirin started
2003 - PFO plugged, FVL diagnosed, Coumadin started
2/2007 - BAV w/severe stenosis, Mechanical Valve likely


Life's not all bad. Look into somebody's eyes, you'll
see that they're a person just like you, they also have
good and bad feelings, hopes and dreams.

I intend to live forever -- so far, so good.

 

[lynn]

Hi Jackie and welcome!

My BAV severe stenosis was dx'd about the middle of September, I met with my surgeon on 10/16 and he said that 6 months would be too long to wait. It was about 6 weeks till surgery was done and the waiting was terrible, I'd rather that it was done sooner but his father was very sick so we waited until after T-giving.

My valve was only open 0.8....do you have any idea how bad your's is? And, are you having symptoms??

 

[marciemarine]

Yes, I was also diagnosed with severe aortic stenosis (it was moderate) and moderate mitral stenosis (it was mild) in September. Since I work in a school system, I asked my cardiologist if I could postpone surgery until June. but he said he wouldn't wait six months if he were in my shoes. So, I went ahead and did the next step, which was to have Xrays, blood work and a catheterization which showed that my lungs, veins, and arteries were clear. I asked a nurse in the cath lab who she'd recommend for a surgean and she said that she couldn't recommend one but that Dr. _______ is the best valve man around, so I went with him. Then I had a meeting with the surgeon and my procedure was scheduled for Nov. 1st and all I had left to do was a dental screening and pre-op. I had a double valve replacement with mechanical valves and after two long months (I'm pretty patient, but not so much with my slow recovery), I'm feeling much better and I'm back to work. My youngest daughter turned 16 in December. I recommend that you mention your upcoming operation to your daughter's school right before you go in for the operation so that they can support your daughter if she needs it, or at least be understanding. Good Luck! Marcie

 

[StretchL]

Hi, Jackie.

I don't remember when/if my stenosis was classified as "severe," but, FWIW, my cardiologist told me in the Spring of 2006 that I would definitely need surgery, and we ended up doing it in December 2006.

My bicuspid valve was terribly calcified. There's a photograph of the valve, once it was removed, in the web gallery linked below, just fyi.

Best of luck!

 

[Mary]

Jackie,
Once your valve is classified as severe, you are going to want to have surgery in fairly short order.
There are many of us on VR that had a bicuspid aortic valve replaced, and I would guess that the majority were suffering from stenosis rather than regurgitation.
I see where you have suffered TIA's; in my case, mine were becoming more frequent due to the flecks of calcification becoming dislodged from the valve, and the surgeon was anxious to do the replacement before I suffered a major stroke.
I think you are probably making the right decision to schedule your surgery for February.

 

[RandyL]

I would say it all depends on the mesurements of your valve an the symptoms you are feeling. You could have one or the other or both. Those 2 items is what your Cardio will be looking for.

 

[tobagotwo]

If you don't mind sharing, do you know what your valve opening size is (sometimes listed onan echo as "AO")?

Sooner is better than later. The main issues are the symptoms and the Left Ventricuilar Hypertrophy (heart enlargement) that is caused by teh valve issue. The hypertrophy leads evnetually to other damage (which may be permanent) and congestive heart failure.

I believe this to be particularly true in women, as the formula is generally to allow a tinier valve opening on a woman before recommending surgery. This is partly due to a formula for valve heart stress that is related the patient's total skin area (generally smaller for females) and what seems to be a dogged determination by doctors to believe that women in general somehow need less bloodflow than men. My belief is that a woman's brain needs as much oxygen as a man's, and that leaving the surgery longer for them will eventually be determined to be an unsuccessful tactic.

There also seems to be a greater reluctance for cardiologists to turn women over to surgery (protective? hard to tell them the news? afraid they'll react badly? don't believe their symptoms?) and some kind of sense that women are more tolerant of having to be treated afterwards for permanent damage from the valve being left too long. This seems to go along with the old-fashioned and ludicrous notion that women have a less physically demanding existence than men, and are more tolerant of physical restrictions.

Where do I get this idea? From many postings here from women that indicate they are left with a much smaller effective annulus size before surgery, and that their symptoms are routinely treated as less serious (basically ignored or dismissed) than similar symptoms related to their doctors by men.

I see this slowly diminishing, but I still see too much of it to feel comfortable. Glad you're setting up your surgery soom. I believe it's a wise choice.

Best wishes,

 

[KAJ]

Jackie,

My stenosis was also diagnosed as "severe" on Jan 14, 2005. My surgery was scheduled to take place a month after the diagnosis. However, a stubborn sinus infection (in part due to a stubborn and now ex-PCP), delayed the surgery. It end up being performed two months after the diagnosis.
The surgeon confirmed the severe stenosis and calcification.

Karl

 

[the art den lady]

Wow!

Wow!

I couldn't believe it when I got on the website and had all this info. to respond to. Yippeee. It feels great to have a sounding board. I'll make this a blanket response and try and get all the answers in. Sorry this is long. I need to vent.

It sounds like it is a good idea I'm calling the surgeon tomorrow to set this up in February. I haven't received the cardiologist report yet (and of course, because of shock didn't think to ask) since we just got back from the Mayo on Friday. The number I received was a valve size of 37 on 6/05 and a 55 on 1/07 which my cardiologist said went from moderate stenosis to severe.

In 6/05 my other number was 1.0, I believe, but because I was feeling good they didn't do anything. Lately, I have SOB (when going up; stairs or a snowhill), fatigue and the top (or tip) of my tongue has been periodically numb the last 3 weeks. Odd . . .

Most of my symptoms started in '95 after I gave birth to my daughter. It started out a week after my daughter was born when I went temporarily blind in one eye. I put myself on daily aspirin. I knew something was amiss. I started having double vision. I actually felt a twisting behind my eyes and felt as though one would feel if you try and cross your eyes. But nothing outwardly was noticed by my hubbie.

After going to eye doctors and cardiologists, I was diagnosed w/BAV. So here goes my 8 year trip w/TIAs. In '96, I went numb on the left side of my body. Periodically, my left leg was heavy and painful, my tongue would be numb, odd back pain in one spot, shooting up my arm, left little finger and side of hand numb, chest pains, heart skips and palpitations, still had consistent double vision and SOB (misdiagnosed as asthma in which I was on an inhaler for 3 years!).

Looking back now as I write this, I still can't believe they waited this long. I'm not one of those 'hysterical' women and not so stressed out that these symptoms would happen.

We finally got insurance in which I was able to go to the Mayo! Thank you God. I wanted a second opinion (more like 8th opinion). Mayo diagnosed me w/the PFO (hole in my heart) and FVL (clotting disorder) and I had my PFO fixed 1/03 and started my coumadin regimen. After about 6 months, I hadn't felt so good. My only restriction was not to run a marathon. Oh, darn. Didn't have to worry about that.

I also had and still have dizziness and vertigo. Even the Mayo hasn't figured this one out. I've had this for as long as I can remember. I'll be walking along and all of a sudden I'll start veering to the right and seem to want to pass out, but don't. Another 'EPISODE' (how I've come to 'not like' that word) happens either sitting or standing. All of a sudden it feels like something just slammed into my head and throws me for a loop. But I never pass out. I know there's more odd symptoms-can't remember them all. I saw too many cardiologists who just wanted me to go on Coumadin. I'm so glad I didn't at that time because my other diagnoses probably wouldn't have happened.

Right now, my only concern is for my daughter. I'm going to wrap up some small gifts for her and have my husband give them to her each day when I have the surgery. Like an inspirational bookmark, cross/angel necklace, inspirational sayings. We're not worrying about this. I told her it's out of my control and why worry? Not saying we don't have our moments.

Well, that's about it (you asked!).

Thanks,
jackie

-------------------------------------------------------

1995 - TIAs started, Aspirin started
2003 - PFO (hole in heart) plugged
2003 - FVL (clotting disorder) diagnosed, Coumadin started
2/2007 - BAV w/severe stenosis, Mechanical Valve likely, Dr. Suri-Mayo Clinic

Expect the best. Prepare for the worse.

I intend to live forever -- so far, so good.

 

[ALCapshaw2]

I concur, SOONER is BETTER from the recovery standpoint. Waiting only guarantees more damage to the heart which makes recovery longer, more difficult, and possibly not a full recovery. Glad to hear that you are proceeding ASAP. Will you have your surgery at the Mayo Clinic? That is rated as the #2 Heart Hospital in the USA.

Regarding Valve Choice, I have researched the mechanical valves recently for an upcoming Mitral Valve Replacement and have selected the ON-X Valve. See www.onxvalves.com or contact them directly. The Education and Promotion Manager, Catheran Burnett, RN, sent me a GREAT packet of information on Valves, Valve Surgery, and DATA comparing valve 'issues'. The On-X valves appear to be the best on the market for Low Morbid Event Rates. There are 50,000 On-X valves in use around the world (10 years) and 5000 in the USA (5 years).

Catheran Burnett's contact information is 888 339 8000 ext 265

'AL Capshaw'

 

[temp69]

Good luck, Jackie, you've come to the right joint! Stenosis is a drag, but I went through it, was at times mesaured 1.1 or .9, around that area, it's a science not exact. I wasn't having terrible symptoms, just knew something was wrong. went to ucla and had an on-x mehcanical put in. working just fine.

here's your mantra...YOU WILL BE FINE. truly. don't worry, just go with the flow.

sending good vibes your way

 

[Marguerite53]

Hi Jackie. I really related when you said you had the twisting behind your eyes thing. I hate that one!!! I always attributed it to a migraine. We've had LOTS of discussions about visual disturbances here. Many of us have increased disturbances post surgery, but then they dissipate over time. I too have the double vision thing occur, usually after that twisting feeling. If I just close one eye (it's as if they are at war with each other) and tell myself to calm down (it freaks you out!) it will usually pass in a few minutes. No fun when you're driving!!

So, you said you had the hole in your heart fixed? So you've already had your sternum cracked open and gone through heart surgery?

As far as the severe diagnosis...everyone is different. Very. For me, I was at moderate for 2 years (1.0, .9, .8, etc.) and then things got worse. Right when I hit the magic .7 (when my particular cardiologist recommends surgery) I was suddenly faced with a little breast surgery. So my .7 was in December 2005, when I finally went for OHS in April, I was deemed "critical" at .53. Perhaps that has made my recovery slower, but there was no damage to the heart muscle at all. For some people, a measure that small would have possibley caused irreversible damage to the heart. It really is different for everyone.

You are definitely doing the right thing! If no one is telling you that they want to get you scurbbed tomorrow and start cutting, I would not feel horrendously rushed. You are getting a little extra time with your loved ones......use it!!! Try to relax and have some special moments with them. You can take that in with you to surgery....that love and promise.....it will be a good thing!

Happy to meet you! Take care!

Marguerite

P.S. Your website is wonderful! There are several of us here who love giraffes!!!! You have captured all of the animals beautifully!! And your "Impressionist" scenes are quite lovely. Thanks for sharing.

 

[Mary]

Jackie,
You wrote, "The number I received was a valve size of 37 on 6/05 and a 55 on 1/07 which my cardiologist said went from moderate stenosis to severe."
Those numbers don't make sense to me. Generally you would start out with perhaps a 1.something and then drop down to .6-.8 for severe stenosis.
I'm glad you're finding out some answers to your questions.
Mary

 

[the art den lady]

Thanks for the replies. I'm telling you this is a wonderful website.

Mary, you got me what those other #'s mean. I know 1 1/2 yrs. ago my valve size was 1.0 at moderate stenosis. Now I'm at severe, but I haven't received my cardiologists report yet.

Marguerite53, I didn't know anyone else who have had these odd sensations behind the eyes!! Is this normal for BAV or just heart patients in general? My PFO was fixed w/catheters up my legs.

Wow, you really had severe stenosis. I hope you're doing better now. My surgery is officially set for the Mayo Clinic on February 16th w/Dr. Suri. Does anyone have any info. about this doctor?

Thanks for the kind remarks about my website. I just started it 2 months ago and I absolutely love giraffes. I have a giraffe on my business card.

temp69, I agree with the not worrying. It's out of my hands and I'm not going to waste the next 2 weeks by worrying.

ALCapshaw2, thanks for the info. on the On-X Valve. My surgeon is out of town so I still haven't been able to ask him the list of questions I have. I will definitely be asking him about this On-X Valve.

I did find out that I won't have to stop my Coumadin until the 11th and then I will go in locally (thank God) to get heparin shots on the 13th and 14th if needed. I have to do a coronary angiogram on the 15th. (Don't have a clue what this is.) Then surgery on the 16th!

Thanks everyone!!!!! My hubbie and daughter are gone on a field trip for 3 days and it sure is nice to talk with y'all.

Jackie

-------------------------------------------------------

1995 - TIAs started, Aspirin started
2003 - PFO (hole in heart) plugged w/3 catheters up the legs
2003 - FVL (clotting disorder) diagnosed, Coumadin started
2/2007 - BAV w/severe stenosis, Mechanical Valve likely, Dr. Suri-Mayo Clinic

Expect the best. Prepare for the worse.

I intend to live forever -- so far, so good.

 

[Marguerite53]

Okay, Jackie. So while your hubbie and daughter are gone, let's get you organized!!

No matter what your measures are, you are preparing yourself for surgery. You are going to Mayo so you're really in some of the most excellent hands. This surgery is fairly common, but it isn't as simple as your PFO. Unless you are having a "minimally invasive" procedure, they are going to saw your sternum in half (sternotomy) to get to your heart. You will need to prepare to have someone around the house to "be you" for at least 2 weeks, and you will not be able to lift anything over 10 pounds for a month or more. That will allow your sternum to heal. The healing if uncomfortable, but totally manageable for most. The pain meds are wonderful and for some it just wasn't too difficult at all. You will be VERY tired and weak for a week or two.....as in....can't even open the refrigerator door. If there are people around you who want to help out, let them bring food. You will not feel like doing any cooking for a week or two. If anyone wants to help, PLEASE encourage them to!! This is a time when you will really appreciate other bodies to do the work that you just don't have the energy to. It's not like you'll feel like such an invalid. It's just that your bursts of energy will not last as long as the task you are attempting to do...and when your energy goes away -- you will actually laugh at yourself ---there is just no way of getting it back without seriously resting for awhile. Naps become your best friend!!

Some people have difficulty getting and out of bed and enjoy sleeping in a recliner for awhile. I actually slept in one for 2 months!! Others found their beds and a million squishy pillows to be the best. But if someone wants to loan you a recliner...take them up on it!

The angiogram is where they lightly sedate you and then run a cath from your inner thigh to your heart to check on the shape of your arteries. If they are clogged up then they will talk about doing some bypass work while they are in there replacing your aortic valve. Many, many of us stenotic aortic valvers have perfectly clean arteries.....it's a point of interest for us, actually, that so many of us do. No idea why. The angiogram also gives a much more accurate measure than the echo, of the shape, size, etc. of your valve. Depending on which type of clamp/plug they use, you might be lying around after the procedure for many hours. Take a good book, some knitting or something, and most of all an iPod or some kind of ear plugs to drone out any unpleasant noises from your compatriots who come and go behind the curtains around you (ie. other patients).

I'm abit puzzled about why you would go with a tissue valve if you are already on coumadin. That, of course is a great discussion to have with the surgeon. Valve choice is an important factor in all of this, so be sure that you feel adequately educated on your choices. Given your heart history, I'm sure that the surgeon at Mayo will help you choose the very best for you.....but most of us appreciate knowing as much as we can about what is going to be going inside of us.

There's a wealth of little tips in this website. If you have any trouble finding them...just ask!

Wishing you the best. When you have new questions, start a new thread.....that way more of us will see it and you may get a better range of answers.

Take care! Marguerite

 

[the art den lady]

Hi Marguerite53,

I didn't realize I would need someone around for 2 weeks after I get home. My hubbie was going to go back to work 3 days after we got back and so I'd be alone.

What kind of pain meds do they put you on? I hope not Vicodin, because I get sick from them.

I wasn't sure about a recliner or a wedge pillow for the bed. We'd have to borrow or buy a recliner so I'm leaning toward the wedge pillow. We do have a beat up old recliner that leans to the right downstairs. I think it would be very uncomfortable.

Great idea on bringing ear plugs and a good book for the angiogram--didn't think of that. I should know better now. My cardiologist and surgeon both said I will be having a mechanical valve put in since I'm already on the Coumadin.

Thanks again,
jackie

 

[Susan BAV]

Hi Jackie -

I think I was dx at mod/sev or something like that w/regurgitation several months before my surgery. My (former) cardio, who was a real bozo, told me to come back in a year after he had dismissed my echo and symptoms as "nothing." I've really avoided doctors as much as I could throughout my life and have never leaned toward hysteria regarding my heart defect even when I finally had to go back in for consult and I'll never understand why he was such a jerk. My husband was with me and he was flabbergasted as well.

I finally got brave enough or sense enough to look for surgeons on my own. After an angiogram, I was told that I had, "weeks, not months," for the repair. I had the bicuspid replaced less than two weeks later. I had been hoping to put it off a couple of months so I could meet my new insurance deductible at the beginning of the new year. That was nixed. (Sounds like someone too logical, not hysterical.)

Several years ago I had some "possible TIA" activity but it was apparently only brief facial numbness for me. But nothing as bad as you are describing and I'm sorry you have to deal with the clotting disorder also.

Also, have you been on heparin before? I don't understand all of the anti-coagulation stuff but you may want to research that forum here because I recall reading recently that not everyone can take that.

Regarding vicodin, I can't take that either; and they had me on morphine and oxy-whateveritiscalled in the hospital and sent me home with some other RX which I didn't need to take. I took extra-strength Tylenol for a week and that was it; by two weeks I took no pain meds. Some have more pain than others. I did have pain but I personally don't want to take any meds that I don't absolutely have to take.

You may have to deal with some sadness/depression post-op also so having your husband available as long as possible would be good. I was in the hospital for a week and then home for nearly a week and then a complication took me back to the hospital for a few more days. My husband runs his own business and happily had the freedom to spend whatever time he needed to with me early on.

One thing I focused on throughout my recovery, and because I tend to think out loud, was to not be a "whiner," because it would make things so much more difficult for my husband, as caretaker, if I repeatedly expressed/complained how I felt while I was recovering. That was an idea that I'd read here. And I think it helped me to keep my dignity and composure while I recovered.

Maybe you could find some nice books as gifts for your daughter to read to you; then she'll feel like she's helping mommy get better. A condensed "Anne of Green Gables," or something like that. Pollyanna is a really "happy" book for young girls too.

Best wishes to you and welcome to the site.

 

[the art den lady]

Hey Susan,

I agree about not being a whiner. That does no one any good. I haven't complained for 12 years (when the TIAs started) so why complain now. Recently though I was getting pretty tired of the fatigue. So it was nice to have an answer (severe stenosis) for why that was occuring!

I was on heparin when they fixed my PFO 4 years ago. I'm going off the coumadin on the 11th because my surgery is on the 16th. Then I go to the doctor on the 13th and 14th for my INR to be checked. If it's under 2.0 I'll have to get heparin shots. The coronary angiogram is scheduled for the 15th, so if needed, I suppose they'll do a heparin shot down there.

I haven't had my questions answered yet, but I would think I still couldn't take Tylenol (interacts w/Coumadin), so I want to ask if Advil (ibuprofin) would work instead.

I like the idea of having my daughter read to me and she likes Ann of Green Gables. I grabbed a book for me to read, but it sounds like most people just spend time recovering. Not enough concentration for a book.

Thanks for letting me vent. I still can't even imagine how 'normal' might feel. I don't like that word . . . how 'healthy' might feel. I just can't wait for that! After one is out of ICU and you're walking around can you tell the difference? Does anyone know if one is restricted in any activities after one is recovered completely? I want to go cross country skiing and I can't wait to go sliding without huffing and puffing up the hill. Or pick up my daughter? Or dog? Or run a marathon? Just wondering. The first cardiologist I saw said I should never pick up more than 30# even after the surgery.?? Puts too much strain on the heart.

Thanks again,
jackie

 

[Marguerite53]

Jackie. I can try to answer some of your latest questions. But. Each one of us is different. Since you have already had some work done on your heart, you may very well have more restrictions than those of us who only had a diseased valve replaced. Most of us are able to regain a full life post surgery. It takes 6 months to a year to really be recovered. Skiing may not be very pleasant for awhile, but you should be just fine in due time.

If they have your pain managed properly post surgery, it is definitely possible to feel better...to feel the difference. It's hard to know, though, if it is the glow of the pain meds and all the other things they've been dousing your system with. Basically, please understand. This is huge surgery. You will be very, very , very tired at first. Every day you will improve dramatically. But those first few days....you will be sore, stiff, uncertain, unsteady and weak. I only had someone with me for most of the day my first week home. After that I was fine....but I sure wasn't doing the laundry!! And I wasn't fixing too many meals. All I meant was, be sure to accept any offers of help....you'll really appreciate them!

You can almost certainly kiss that huffing and puffing good-bye!! You will notice that improvement very soon.

The thing I enjoyed most in the hospital was playing Solitaire with a deck of cards! Nice, repetitive, easy, time-consuming. That and listening to my music. You get quite a few interruptions and truly, your concentration level just won't be very satisfactory!

Marguerite