These are my symptoms, how long can I last before surgery is required?

[reddwarf]

I know, how long is a piece of string right?

Hi all,

I have recently been diagnosed with BAV after having started experiencing some symptoms of late. I am 37 years old. It's been quite a shock finding out that I have severe aortic regurgitation which the cardiologist first told me would require a valve replacement within 6 months. Total meltdown! After a 2nd scan this has now been revised to regular EKGs as apparently my heart is still in good shape (and size) and coping sufficiently with the problem. I don't suffer from any shortness of breath yet. It's been great finding a site with people that have the same or similar issues.

I'm still really nervous that I will need this op probably within a year and basically what I was told was that usually there are 2 reasons to operate - (1) imminent heart failure and (2) if the symptoms become too bad to cope with.

It is the symptoms issue that I want to discuss on this forum. I'm trying to work out if all the symptoms I'm feeling are definitely related to BAV and regurge based on others experiences or whether I'm just making these things up in my head. Also is it possible that I could have these symptoms for a few years before my heart starts failing and the op is required? I really don't want to have OHS just yet.

So here are my symptoms:

1. Hard forcefall heartbeat and bounding pulse. This is in fact what made me go to the doctor. Many times, mainly at rest I can feel my heart pulse through my body, particularly in my arms, knees and feet. In my knees it actually feels like a little shock. This symptom stopped me sleeping for 3 months and was a complete nightmare as could not stop worrying about it when trying to fall asleep. Funny thing is once I proved to myself that there was a problem (after 5 doctors and 2 cardiologists), my sleep has improved.

2. Sleep issues: I find that I sleep much more lightly now and generally wake up early, often after only 4 or 5 hours of sleep. Not sure if this is a direct symptom or caused by stress related to the news.

3. General tiredness and bad mood: This is the really annoying problem. Even when I feel like I've got in a good 7/8 hrs sleep I seldom feel refreshed and struggle to get through the day often in an awful mood. I have good days where I feel like all my symptoms have gone but they are very rare.

4. Restlessness: I really feel this when waking up in the morning. I find I'm constantly moving my legs to find a comfortable position and it's almost impossible to stay in bed too long. A good reason to get up I suppose!

5. Sore feet and sometimes arms: Sometimes it feels like my feet and bottom of legs are going to explode from pressure. I wouldn't say it’s painful but just annoying as I usually have to move my legs around a lot. I don't have swollen ankles at all.

6. Chest pain: I sometimes get a squeezing feeling in my chest. It only happens for a split second and never lasts. Also happens very seldom, sometimes 10 times in 1 day but sometimes never in 5 days. The doc reckons I shouldn't worry about this. In fact I may have had this symptom all my life and just more conscious about it now.

7. Pins and Needles / circulation: I find I tend to get pins and needles more often now. It’s pretty subtle but happens quite often. My arms also sometimes feel like the muscles are a bit sore even though I haven’t exercised.

I should probably mention what symptoms I don't have too. No shortness of breath, I run 5kms every 3 days and don't seem to be getting any less fit or more tired. No major or prolongued chest pains. No swollen ankles. No change in heart rhythm or skipping heart beats. In fact my heart rate is about 63 at rest, 150/160 when jogging and returns to 110 within 2 mins of stopping. No dizziness. I look pretty fit and heathy and correct weight for my age.

So there you have it. I guess what I'm trying to find out is if all these symptoms sound familiar for those that have a similar issues i.e. BAV and also whether there are people out there that have managed to live with BAV and symptoms for a few years before requiring an op? I'm really hoping that although I have what appear to be some nasty symptoms, the fact they’re not affecting my life too much just yet means that my heart still has a good few years of coping with the problem. I’m not ready to make a choice of pig or mech just yet and hoping to get through a few more years being able to enjoy a few beers on a night out. The trouble is since this was only all discovered quite recently, there was never a chance to baseline it and so I’ve no way of telling how quickly things are progressing.

If you've got through all of that, well done. Really appreciate you reading. Hope to hear from you soon....

 

[VegasBAV]

I'm not a doctor. I'm 41 with a lifelong history of aortic regurgitation. "Symptoms or imminent heart failure" is not my understanding of the protocol for surgery. I thought it was "symptoms or echocardiogram measurements that show your heart is significantly enlarged or starting to fail." If you wait until heart failure is "imminent," then surgery may help you but you may do enough damage to your heart in waiting that your heart never fully recovers.

The guidelines for surgery now are different than they were twenty years ago. The bar for surgery is lower because the surgery is a lot safer.

If you get a tissue valve you'll be able to drink as much as you want. That's one of the reasons I got mine.

 

[reddwarf]

Thanks for the response. Yes I agree with you, I probably could have worded a bit better. What I meant to say was that once the doc decides your measurements are exceeding the norm then heart failure is imminent unless you have the op. My measurements are all okay for now.

And I know one can still drink on the tissue valve but I've not made that choice yet and OHS is currently my biggest scare. Would also like to delay that if possible!

 

[Bean Counter]

Well, when it was time for me to have surgery, I did not have any of the symptoms that were listed out. Here are the symptoms I had:

1) Extreme fatigue-I come form a running background and would run up to 100 miles a week while peaking for a marathon. I never felt that fatigued. Once I was told I could not run marathons anymore (due to leak getting worse and enlarged aorta) I cut back on mileage to 50 miles a week of easy running. As time went on, I was getting more and more tired. I would fall asleep on the couch at 8:30 compared to a normal bed time of 10-10:30 (during those big training weeks)

2) Night sweats-I would wake up drenched...only later did I find out that was a symptom of BAV (it is also a symptom of many other things as well)

3) Going into PSVT while running-I would keep my HR between 140 and 145 when I ran. There were times that I my HR would shoot up to 200 (I could feel it) and the quickly back down once I stopped running. The cardiologist had me hear a Holter monitor during my runs and it confirmed it. It was because my leak got pretty bad.

Those were the main ones. Outside of those, everything else in my life seemed normal.

 

[Heart Of The Sunrise]

reddwarf: I was diagnosed in October. My valve is shot. Regurg and stenosis. The regurg has been spraying my mitral valve for years. A routine EKG revealed a left-bundle-branch-block.This means there is a timing issue between my left and right ventricles.This was the sign that something seriously was wrong. Fortunately my mitral valve will not need surgery. I am completely asymptomatic. Do you know the status of your ascending aorta?. Mine is dialated 4.9 cm. Generally, a surgeon will want to do surgery when it gets close to 5.0 cm. You are very symptomatic. Time is not your friend. I completely understand the reluctance and fear of surgery. In many cases and especially a situation like yours ...you are at far greater risk by not having surgery. What is your ejection fraction? Mine has diminished to 47. My surgeon says it will go up to 60 post-surgery. I also know that the moderate dilation of my left ventricle will return to normal.
I am blessed that I have no coronary artery disease. I will be 57... 3 weeks post-surgery. My doctors tell me I will have the heart of a 40 year-old once I am recovered from surgery. My advice...do all your tests. Learn as much you can about your condition and the remedies for it. Make educated decisions and go for it! Find the best surgeon and hospital near you and have the surgery done real soon! Delaying your surgery increases your risks. If you haven't already had them you need to have a heart catherization and a trans-espohgeal echocardiogram (TEE) done. This will really give a clear picture of what is going on. Don't sweat it. It was a piece of cake.:thumbup:

 

[Lucky]

Hi reddwarf,
I had my aortic valve replaced when I was 45 years old and I just remember an overwhelming feeling of tiredness and also poor concentration.
I use to get alot of ectopic beats but was told that this was due to anxiety. I love it when you are told that there is something wrong with your heart that you are expected to be totally calm and relaxed about it.
Early morning wakening and still feeling tired after sleep can be a sign of anxiety.
As for the surgery, they have it off to such a fine art that although it is not something you dream of having it is certainly bearable and that is from someone expecting to have OHS again this year.
Keep in touch-everyone is so supportive.

 

[Julian]

I didn't feel shortness of breath until the last year before surgery but I had all the other symptoms you had for years before surgery. Turns out after I had the surgery most of the preexisting symptoms were resolved. They resolved over a year and a half after surgery. It took that long for my body to get to "normal"

Now in hindsight I wish I would of done the surgery sooner because turns out I had symptoms 10 years prior.

I've learned not to wait for symptoms to get worse just do the surgery and get back to living. No use in splitting hairs trying to avoid the solution. Waiting won't make it go away and maybe dangerous.

 

[virginian777]

don,t wait do it

 

[T in YVR]

Hey there,
I was just diagnosed in Feb (they originally thought it was BAVD after the 1st ultrasound, but after the TEE this week discovered 2 of my 3 valves are calcified and stuck together). I have severe regurg and moderate dilation of my left ventricle. I have seen my cardiologist but have not seen a cardiac surgeon yet. I'm mostly asymptomatic but have sporadic chest aches, and my heart rate can speed up a bit more than I would expect with only modest exercise. Not really tired or short of breath though...I have not had many of the symptoms you have experienced, but I will say that stress is nasty thing and can play tricks on your body/mind, as has happened to me...you feel/sense everything once diagnosed - real or imagined...in fact stress causes alot of it.

Regarding surgery timing, its ultimately the surgeon that will answer that question for you. My cardiologist tells me that since my left ventricle has started dilating and the regurgitation is severe I will be "this year", but he said he defers to the surgeon on that final ruling. He said they will operate on me before I show significant symptoms. My thought is similar to what was mentioned already - I just want to get it done and get on with my life. I can't wait to see the surgeon...

Good luck with it.
Tony

 

[Heart Of The Sunrise]

"I just want to get it done and get on with my life. I can't wait to see the surgeon..." Great attitude,Tony!
Be positive and proactive and you will do and be just fine!:thumbup:

 

[Guyswell]

Reddwarf,

I'm not a doctor but some of your symptoms sound like they are probably related to your heart. Other symptoms sound to me like depression and anxiety. ALL of your symptoms should be discussed with your cardiologist AND your general practitioner. Your cardiologist and surgeon will follow well-documented criteria and guidelines when deciding its time for surgery. My advice is don't wait. Once your doctor tells you its time for surgery, get it done right away. There is no advantage in waiting. It's important to have the surgery before permanent damage is done to your heart (and before your aorta goes all John Ritter on you - Google it). In my experience, If you eventually end up with a mechanical valve and are taking Coumadin, you'll still be able to have a pint or two with your friends sometimes. You should not go out and have 5 or 6 pints when you're taking Coumadin. That will throw your INR off too much.

 

[yotphix]

I had a diagnosis similar to yours when I was about 30, and didn't need surgery until I was 39. Every case is different. The tipping point for me was the onset of new and worsening symptoms plus a marked decrease in ejection fraction, and most importantly from the surgeon's perspective, an enlarging Left Ventricle. His promise to me was that if we did the surgery once that started, we had a good chance of reversing it, if we waited, there was likely no chance.
Today I happily take warfarin with my mechanical valve, my ventricle is normal size, (Surgery was expensive for me, since I couldn't work at my very physical job for several months - I hope to never do it again), and my VO2 max is 110% of my age predicted max.
Don't fear it. It will definitely be the best thing that could happen under the circumstances!

 

[reddwarf]

Thanks so much to everyone for responding. I guess what’s been confirmed is what I probably knew already, every case is different and one can be asymptomatic and require an op or have symptoms for years before surgery is required. What that means for me is that I might be lucky and not require OHS for a while or there could be a change in my measurements at the next EKG and an op could be around the corner. What is also clear is that everyone agrees – don’t wait. I thought I would put a few things into context and try answer some questions that were asked.

Firstly I have had a 2nd opinion and both cardiologists independently verified that my measurements were within the norms. One EKG was done at London Hammersmith Hospital which is supposed to be world renown and I must say I got a much better feeling from the cardiologist there than at Charring Cross. The downside was that I saw the same Cardiologist that originally misdiagnosed me with mild regurge at Charring Cross, walking around at Hammersmith Hospital. LOL. I made sure I avoided him.

I just want to make it absolutely clear that I’m not intending on putting the op off once the doctors agree it’s time, but at the same time I’m not exactly gonna book the next available slot just to get it out the way. Unfortunately it’s not that simple for me. I’m about to emigrate back to Cape Town and once there will need to get on a medical aid. They will not cover any pre-existing conditions for the first year which is why I’m hoping my measurements stay in check for at least a year. I also need to find a job when I get back and really hoping this doesn’t impact on work either for the short term. The bottom line is that if I require this op within a year I will have to come back to the UK to have it on the NHS which will massively disrupt my life. Staying in Cape Town will allow me to have the op done by Susan Fosloo, a world renowned cardiac surgeon. I’ve no doubt London has some great surgeons too but my family is in CPT and I imagine having a good support base after the op will be necessary.

Back onto the symptoms. Thanks to those that commented on their own symptoms in comparison to mine. It does sound like a lot of my symptoms may be stress / anxiety related and I’m quite certain my brain is causing more headaches than my heart at the moment. That said I am seeing a cardiologist as soon as I get back to CPT in 4 weeks so I can have a 3rd assessment in small space of time. I now have the EKG report on disk so can make some comparisons.

My cardiologist did not tell me what my ejection fraction was or the size of my left ventricle. He simply told me that all my measurements were fine. I guess I was asking so many other questions that he didn’t get a chance. I will write him to ask.

In signing off and having read everyone’s comments I reckon there is a good chance that I could survive a year without requiring surgery and before my heart starts showing warning signs but I will keep up the regular checks, EKG every 4 months I reckon.
Thanks again everyone. I’m sure I will be checking in again soon!

PS: Secretly hoping that ValveExchange becomes a reality and I can get an exchangeable tissue valve and only ever require one OHS. Realistically, probably not but who knows!

 

[dwhist]

I wanted to add my 2 cents in. I did not have a BAV, just a leaking valve and my ascending aorta was showing 5.0. Was discovered after doc heard a murmur. He said I would need surgery within 5 years. One year later echo showed leakage was worse and it was time. I had no syptoms and was biking my usual 20 to 30 miles a day. Including 20 miles night before surgery without problem. I was having issues when trying to lift anything heavy. I had been told not to lift anything over 50 pounds. The tests had showed the left ventricle was enlarged, and it was enlarged to the point the surgeon had to do a full cut as opposed to the minimal he was planning. So, things can change quickly. Left ventricle did go back to its original size very quickly.

Now as to drinking with coumadin, everybody is different. I do the weekly monitoring and have not seen any changes after having a few too many. So, not sure I would make that as determing factor for valve type. But valve type is a very personal decision.

 

[Pat J]

I was first diagnosed when I was 50 with a stenotic bicuspid aortic valve and just had the surgery a month ago at age 58. Quarterly echos. In Sept I was told it's critical - surgery now and I still waited until Feb with very few symptoms. Docs were surprised.

 

[reddwarf]

So it's been a couple weeks since I first posted this thread. I have a few things to update on. Firstly I managed to get a copy of my last EKG report. My ejection fraction is normal - between 65 and 70%. As for the size of my left ventrical, not sure how to tell that from the report. Anyone know what this is called on a standard EKG report? As mentioned the doc said it was also normal and the report summary actually confirms this. This is all despite severe AR.

I also discovered that my daily tiredness seems to have something to do with my eyesight. I was given glasses for astigmatism over 2 years ago but since I was still able to see relatively okay, I've just never bothered to wear them. However things must have got worse and I decided to put them on the other day - instant relief. What an idiot!

However I am still having some pretty bad symptoms from the regurge and it's got me worried about whether I should go see the doc again. Basically I have water hammer pulse which means my entire body moves with my heart beat. This really affects my sleeping. I can also feel my heart beating pretty hard. Last night it seemed to beat even harder than normal but not sure if that was because I had 2 glasses of wine and perhaps my BP went up.

My cardiologist told me there are no meds that can reduce these symptoms. They are really annoying me. Given 2 EKG reports have come back with normal LVEF and LV function the docs have not recommended the op just yet. I really need to try reduce the pulsing though. Has anybody else had this and managed to reduce the symptoms without AVR? Can beta blockers help?

Thanks!

 

[T in YVR]

Yeah, I have the pronounced/hard heart beat and a water hammer pulse. Its drives me nuts...mostly when going to bed and trying to sleep. It kind of feels like a caffeine high where I'm very alert and restless when going to bed. I actually get a bit anxious every time I go to sleep wondering "what's in store for me tonight"...difficult to find the right sleep position that minimizes it etc...Unlike you, I also have some dilation of my left ventricle (about 65mm/6.5cm), which is moderately dilated. I believe that at > 70mm/7 cm it becomes 'severe' in its dilation state. I avoid food for a couple hours before bed, esp. any carbs or sugars (lost 10 lbs in the last 1.5 months so far!) and I also have cut any alcohol consumption down - especially wine, and especially as sleep time gets close. I have found that red wine will absolutely make the situation worse at bed time (sugars and alcohol in it), so drink early and in moderation. I don't drink coffee, but I have gone so far as to only drink decaf tea as well. I have AVR and am waiting (CT Scan in a couple weeks). My Cardiologist told me Beta Blockers would not be suitable for my condition; more suited to a Marfan's type of condition. In the end, I have not found a way to completely control it, but I can avoid making it worse through improved/controlled diet and moderate exercise.
Tony

 

[iheart]

This is kinda funny, because I thought it was only me, but I have a pretty strong heartbeat, too, and a pretty big aortic valve leak. When looking in a mirror, I can actually see my the bottom of my neck throbbing each time my heart beats. If I lay on my left side at night usually the throbbing bothers me so much I have to roll over. And yes, it beats faster and harder when drinking--which I am only doing in moderation now. My ejection fraction is normal, but I have a leaking bicuspid valve and 6.2 left ventricle. I also have a 5.2 aortic root. I will be having surgery to repair all in mid-April.

Funny how "symptoms" seem to come out of nowhere, once you find out a little about your condition. All-in-all, I feel great. But just knowing about the aneurysm I have freaks me out a quite a bit and I've become a little bit anxious. Talk about understanding your own mortality!

As far as the "hammer-pulse" you mention, red, I suppose it's pretty common with aortic valve regurgitation cases like us. I seem to remember noticing the strong heartbeat years ago, and I'm not sure there's anything you can do about it. I also think your paying attention to it as much as you have probably makes it seem worse than it is? I would say ask your doc about it again, and/or get a 2nd opinion. Then, if they say it's a normal result of a leaky valve (which mine is) just try to ignore it as there's nothing you can do about it.

 

[reddwarf]

@Tony: I think my left ventricle is 5.9cm which if I'm reading this report right, is at the maximum for normal (4.2 - 5.9cm). Guess I'm borderline. Regardless, sounds like we have the same sleeping issues. My symptoms are basically compounded whenever I need to keep my body still, whether it be sitting down to watch TV or lying down to fall asleep. My entire body moves with my heart beat, especially legs. I manage to get by in the day by constantly moving a part of my body, usually my feet. But obviously that's not practical when trying to get to sleep - man it drives me nuts and feels like I'm on a boat when trying to fall asleep. I have a complete fear of sleeping and have to take sleeping tablets regularly which I desperately don't want to be taking. I also almost always wake up earlier than I should.

I've noticed my heartbeat also seems to cause muscle cramps and aches around my chest area. They are definitely muscular, around the bottom of my ribs as I can feel the pain when I push the muscles with my fingers. The same as after doing sit ups. If it was under the ribs or in the centre of my chest I'd be quite scared but it's still strange that a forceful heartbeat causes outer muscle pains. My heartbeat is definitely harder the next day if I've had a bit too much to drink the night before so I have also pretty much cut out drinking. Exercise definitely makes me feel better in that it helps me relax easier, doesn't necessarily reduce the force of the heartbeat which is pretty scary at times. I often think it's beating way to hard to be able to continue for much longer or that it is just gonna cramp up! Wish there was a way to reduce the force just a little bit. Was thinking since my ejection fraction was normal, I could reduce my blood pressure with beta blockers and still get sufficient oxygen around my body. But I'm no doctor, that's just my technical brain trying to solve a technical problem which I don't fully understand. It's driving me nuts!

 

[reddwarf]

I would say ask your doc about it again, and/or get a 2nd opinion. Then, if they say it's a normal result of a leaky valve (which mine is) just try to ignore it as there's nothing you can do about it.

Yep, it's apparently caused by a leaky valve alright. Severe AR, just don't have the left ventricle dilation or LVEF issues yet. AVR is on the cards. Funny, now that I've discovered what's causing all this, I also kinda think I've had a forceful heartbeat for years and somehow managed to ignore it. It's pretty scary finding all this out now considering the amount of crazy stuff I used to get up to in my 20's. I really wonder if it sped up the whole BAV deterioration process. I guess I'll never know.