OPINIONS NEEDED: Mitral Valve Prolapse with Regurgitation

[beespin]

Hello everyone- I'm new to this website because I was diagnosed with MR about a month ago. I'm 22 and was apparently born with MR...I had no idea. Starting in grade school, P.E. was really difficult for me, getting extremely exerted and short of breath while the other kids tuckered on. By 13 years old, I was experiencing debilitating migraines. All through high school I still had fatigue and migraines but for me, nothing out of the ordinary. At 21, I was pregnant with my son and at my 7 month mark started experiencing extreme fatigue/exertion just walking at a snails pace for a few feet. My OBGYN sent me to have an EKG which came back normal so an echo was never done. Then a couple months ago I was on a mission to find out why I have never been able to get past 92 lbs at 5 foot 1 inch tall. At the same time started noticing palpitations and chest pain/shortness of breath while laying in bed at night. My now doctor saw I never had an echo during my pregnancy and sent for one to rule out any heart issues. Mid March was when the cardiologist found my MR. Since then I've undergone a stress test and a TEE/bubble test. Supposedly I have a mild case, no sign of clots or enlargement. However, I STILL have a lot of fatigue, chest pain and shortness of breath on a daily basis, and migraines at least a couple times a month. What on earth should I do??? Please help!

 

[Duff Man]

get a second opinion, maybe from a surgeon. bring the echo reports and disks with you to the second/third doc. Get the opinion from a doctor that has a keen interest in mitral valves.

 

[beespin]

Thats what I'm thinking I'll do. I've done a lot of research and everything says that having symptoms is obviously not a good thing. What are the disks you are talking about?

 

[Greg a]

beespin, a heart felt WELCOME to our OHS family Duff man speaks the truth YES THE WAITING IS THE WORST PART, there is a wealth of knowledge here for the future .....


-Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

-what to ask pre surgery http://www.valvereplacement.org/for...68-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/for...Getting-Comfortable-Around-the-House&p=218802

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


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

 

[beespin]

Thanks a lot Greg. I really appreciate it. =)

 

[Duff Man]

Thats what I'm thinking I'll do. I've done a lot of research and everything says that having symptoms is obviously not a good thing. What are the disks you are talking about?

In fairness to the current docs opinion, inability to gain weight and fatigue can be caused by a seriously vast amount of etiologies and the causation could be something as weird and random as a brain tumor like a pituitary adenoma (i know cause I have one) and that might even be a place to search since you've had bad headaches... BUT, since you have diagnosed MR I would be suspicious too. I go with my gut, and my gut always errs on the side of caution... which has saved my cookies quite a few times. I don't stop searching for answers until I feel satisfied that I've done the very best I can do for my situation. You would not believe the hell I went through to find out why I was fatigued. Getting an MRI of my brain was like pulling teeth, and no doctor ever took me seriously to begin with.

What I mean by disks is the actual copies of the echo film/video where they record the actual exam. They'll usually give you a cd rom that any doc can just pop in their computer to view. Usually I have to go to the entity that performed the test to get the disk itself, but this will allow the second/third opinion docs to adequately asses the way your mitral valve works. Otherwise they'll need to order a new echo/tee, which might be ok too if you're ok with that.

 

[beespin]

I see what you're saying, and thinking back on all the dr's I've seen, my weight issues have been brushed off and concluded as just a fast metabolism. In all honesty, I'm not a big eater (just normal 3 meals and a couple snacks a day), but I've even tried drinking 3-5 of those nutritional shakes for months that are 365 calories each daily in addition to my normal meals and snacks, and have barely gained 2 lbs if it was a good week. So, adding 900+ calories daily changed near to nothing which is extremely frustrating. So yeah, I feel like none of the dr's I've seen have really taken me seriously. I once saw an endocrinologist who literally told me, 'eat more. drink 7, 8, 9, 10 shakes a day. And if you think that isnt enough, eat more, and drink more shakes.' Seriously? I was so angry I was in tears leaving his office that day.

In regards to what you said about a possible brain tumor, do you mean that having been diagnosed with MR could mean a bigger possibility of having a brain tumor as well?? No one has mentioned that possibility to me and I've never had an MRI of my brain, so I really wouldnt know if anything is wrong up there.

What isnt to my advantage is I dont have the best health insurance, so when you say trying to get an MRI was like pulling teeth, I know exactly what you mean. I think I'm going to have a hard enough time getting discs and paperwork from my cardiologist to my regular dr. and then sent off to a new cardiologist for a second opinion. But thanks to you, I'm that much more determined to find answers. I dont think I can live with so many symptoms and only get an annual TEE for them to say something like, 'you're fine, we'll see you next year'. It's my HEART and I have other unexplained issues I cant just brush off. I have a one year old son, and I need to take care of me so I can take care of him. Thank you so much for taking the time to explain your experiences to me. I have a follow up with my dr. on Monday and I'm going to keep pushing for more tests and a second opinion. Once again, thank you.

 

[kfay]

I see what you're saying, and thinking back on all the dr's I've seen, my weight issues have been brushed off and concluded as just a fast metabolism. In all honesty, I'm not a big eater (just normal 3 meals and a couple snacks a day), but I've even tried drinking 3-5 of those nutritional shakes for months that are 365 calories each daily in addition to my normal meals and snacks, and have barely gained 2 lbs if it was a good week. So, adding 900+ calories daily changed near to nothing which is extremely frustrating. So yeah, I feel like none of the dr's I've seen have really taken me seriously. I once saw an endocrinologist who literally told me, 'eat more. drink 7, 8, 9, 10 shakes a day. And if you think that isnt enough, eat more, and drink more shakes.' Seriously? I was so angry I was in tears leaving his office that day.

In regards to what you said about a possible brain tumor, do you mean that having been diagnosed with MR could mean a bigger possibility of having a brain tumor as well?? No one has mentioned that possibility to me and I've never had an MRI of my brain, so I really wouldnt know if anything is wrong up there.

What isnt to my advantage is I dont have the best health insurance, so when you say trying to get an MRI was like pulling teeth, I know exactly what you mean. I think I'm going to have a hard enough time getting discs and paperwork from my cardiologist to my regular dr. and then sent off to a new cardiologist for a second opinion. But thanks to you, I'm that much more determined to find answers. I dont think I can live with so many symptoms and only get an annual TEE for them to say something like, 'you're fine, we'll see you next year'. It's my HEART and I have other unexplained issues I cant just brush off. I have a one year old son, and I need to take care of me so I can take care of him. Thank you so much for taking the time to explain your experiences to me. I have a follow up with my dr. on Monday and I'm going to keep pushing for more tests and a second opinion. Once again, thank you.

Beespin, Sorry you are not feeling well and not getting the answers you are looking for. I would definitely start with a second opinion from a different cardio and then I would probably have a consult with a surgeon. I would let them perform their own tests because you don't know the skill of the tech who performed the last echo.

As for your migraines, there have been some studies that have shown that people who have a pfo, which is a type of hole in the upper chambers of their hearts, can have more troublesome migraines. The bubble study they performed should have shown whether you have a pfo or asd (another type of hole). However, as a longtime sufferer of migraines, it may have nothing to do with anything else, you just may have bad migraines and there are medications you can take on a daily basis to help prevent them. I know because I take three different ones everyday! And no, having a problem with your heart does not increase your risk of having a brain tumor, I think Duff was just giving you an example of his own personal experience.

Kim

 

[Duff Man]

I see what you're saying, and thinking back on all the dr's I've seen, my weight issues have been brushed off and concluded as just a fast metabolism. In all honesty, I'm not a big eater (just normal 3 meals and a couple snacks a day), but I've even tried drinking 3-5 of those nutritional shakes for months that are 365 calories each daily in addition to my normal meals and snacks, and have barely gained 2 lbs if it was a good week. So, adding 900+ calories daily changed near to nothing which is extremely frustrating. So yeah, I feel like none of the dr's I've seen have really taken me seriously. I once saw an endocrinologist who literally told me, 'eat more. drink 7, 8, 9, 10 shakes a day. And if you think that isnt enough, eat more, and drink more shakes.' Seriously? I was so angry I was in tears leaving his office that day.

In regards to what you said about a possible brain tumor, do you mean that having been diagnosed with MR could mean a bigger possibility of having a brain tumor as well?? No one has mentioned that possibility to me and I've never had an MRI of my brain, so I really wouldnt know if anything is wrong up there.

What isnt to my advantage is I dont have the best health insurance, so when you say trying to get an MRI was like pulling teeth, I know exactly what you mean. I think I'm going to have a hard enough time getting discs and paperwork from my cardiologist to my regular dr. and then sent off to a new cardiologist for a second opinion. But thanks to you, I'm that much more determined to find answers. I dont think I can live with so many symptoms and only get an annual TEE for them to say something like, 'you're fine, we'll see you next year'. It's my HEART and I have other unexplained issues I cant just brush off. I have a one year old son, and I need to take care of me so I can take care of him. Thank you so much for taking the time to explain your experiences to me. I have a follow up with my dr. on Monday and I'm going to keep pushing for more tests and a second opinion. Once again, thank you.

I don't have kind words for your endo. I think he's lazy or apathetic about patient care, like most of the docs. Maybe he's just not that smart and/or he thinks everyone lies like House MD... I don't know.

Since money is an issue, another option is literally send a copy of your echo "film" and some of your most relevant medical records to a surgeon and ask them for their recommendation. This isn't as thorough, but it's a very affordable way to get another opinion.

I'm not suggesting that mitral regurgitation has anything to do with a tumor, no. But I am saying it may be another place to look for reasons as to why you feel bad. You could have a pheochromocytoma, adenoma, or something pretty esoteric like that. All I'm saying is keep your eyes open and don't lose perspective of the entire problem.

One last caveat, many hospitals have a charity program that will pay for some or all of your bill if you can't afford to pay for it. You have to apply for it, but it's out there.

 

[cherylchapa]

Sounds to me like you need new doctors. I don't have any better advice for you but I do know the inability to gain weight can sometimes be associated with the heart issues. My son has always been small for his age. He was born with a heart defect but at normal weight (7 lbs). It took him till 5 months to reach 10 lbs (just barely) so that they could repair his heart. He lost 2 lbs while recovering and was a year old before he reached 10 lbs again. Then at 10 years old when he was ready for his pulmonary valve replacement, he was only 68 lbs. His classmates were mostly 80-100lbs. Now after his valve replacement, he has topped 80 lbs. Yes, that is 12 lbs in less than 2 years! He's also grown about 6 inches in that time. What I'm trying to say is, don't let them tell you it isn't related if you think it is. Be persistent and get your answers. Good luck and keep us posted!

 

[Marcia58]

Beespin,

I was diagnosed with MVP at about your age, and told it shouldn't ever become a problem. WRONG!! Two years ago, I suddenly became symptomatic, and within about a month had OHS to repair the valve.

I agree with everyone else--get a second opinion (and maybe a third!) I'd talk to a cardio and a cardiac surgeon. Find them, set the initial appointment, and authorize the new doc to get copies of everything from the old doc. The old doc is REQUIRED to give it to the new one at NO CHARGE. I wouldn't ask your old doc for a referral...he'll likely choose someone who thinks like him. A good way to start looking is at a doctor rating website: www.healthscore.com, www.ratemds.com, www.vitals.com are all good. I like to go to teaching docs at med school hospitals. Teaching seems to keep them on their toes, and remind them they're part of a team. TALK TO A SURGEON WHO DOES A LOT OF MITRAL VALVE REPAIRS!

REMEMBER, you (or the insurance you pay into) are paying the doctor. That makes him/her the employee and YOU the BOSS! If your body's telling you something's wrong and the doc says "There's nothing wrong with you," what they're really saying is "We can't figure out what's wrong with you." Look at it this way-- Say you were sure there was something wrong with the electrical system in your house (lights flickering, circuits popping) and you hired an electrician who said there was nothing wrong. Would you just apologize for wasting his time? NO, you'd fire him and find another electrician who really knew his stuff and kept looking 'til he found the problem!

Good luck,

Marcia

 

[beespin]

Thank you everyone SO much. I'm relieved to find that I'm no looney, and that like you Cheryl, I need to nip this in the butt before it becomes a REAL issue. Since I started seeing dr's for all my symptoms its turned into this game of me wanting them to tell me something's wrong rather than that I'm okay as most people would hope. I dont know if that makes me sound crazy, but seriously, it would just help me understand why on earth I'm feeling tired, having chest pain, migraines, and fatigue...not to mention having such a low BMI my whole life. You are all so right though, I definitely need new dr's and I'm going to work on getting seen at a better hospital with a new team of doctors. I have Medi-Cal (medi-caid) if any of you are familiar with it. It's government funded for low-income so everything is covered thats necessary luckily, but on the down side I dont get the best care sometimes. Although, I know if I'm persistent, I could probably be seen at Stanford Hospital. Thats now my goal.

I have a few questions though, and I'm so happy I'm able to ask those of you with experience, whereas a lot of dr's have never gone through the experience of having MVP or MR so they go by the book only which can be frustrating for us actually living it. But I'm wondering what the chest pain for you all felt like?? For me its like a sharp and sometimes dull pain only on my left side where my heart is. I started noticing it at night when I'd lay down for bed, but recently sometimes it comes when it wants to regardless of what I'm doing. Its not a horrible pain, but its constant for a few minutes til it finally fades away. I also find myself sighing a lot, like all of the sudden I need to take a deep breath in and exhale. And at night, yeah, the palpitations where my heart just gives a few really strong beats. Not so much fast, just really hard where it feels like the beating is in my throat. And apart from migraines, I get really quick pressure headaches usually when I go from sitting to standing or I bend down to pick up my son. I dont know if any of this you guys have experienced, but I'm just wondering. As you can probably tell, I'm a little desperate to see if anyone else has had these symptoms.

I will definitely take all of your information, opinions and personal experiences to "heart" and make sure to tell my dr. tomorrow at my appointment. If I get brushed off, I'm definitely calling my insurance and getting another dr. Thank you so much for taking the time to real my novels, you have no idea how much this means to me. Thank you, Kim, Duff, Cheryl, and Marcia.

 

[Lynlw]

Hi, I'm sorry you are having problems and Know how frusrating it can be whn you know things aren't "right" and can't get answers. It certainly couldn't hurt to get another opinion from a Cardiologist, but since he did do an echo, stress test and Tee/bubble test it looks to me like he was listening to you and did the right tests to see IF your symptons could be caused by your heart. Were the results from the stress test normal? Since the echo and TEE showed that beside the mild regurge, everything was normal, no enlargement etc, MAYBE something not related to your heart could be causing all your symptons. Or it could be a combo of a couple things. How is your blood pressure?

Have you had a good check up and blood work recently? Besides getting a second opinion about your heart, I probably would be pushing my regular doctors(GP, family doc whoever does your routine things like colds, etc) to look for answers. So many things could cause fatigue (and taking care of a baby so probably not getting much sleep doesn't help), but have you had blood work to check your thyroid? it would probably be good to have complete blood work done, to make sure you aren't anemic or your thyroid isn't a problem or even Chronic fatigue syndrome or any of the things tha can cause fatigue, low weight . Even if all the blood work turns out great, at least you can rule all those things out as the cause of your symptons.

As for the trouble gaining weight, I know how frustrating that can be too, my Mom couldn't gain weight either, no matter how much she ate, she was 5 ft 3 and the ONLY time she hit 100 pounds was the 3 times she was pregnant. How is the rest of your family as far as size and weight? Does either side have other people who are smaller, or are you the only one?

Hopefully you can ge some answers, as other said, keep going until you do.

 

[Duff Man]

Something is definitely not right, and it's not all in your head... unless it really is in your head. The headaches etc make me think you need an MRI. The MRI should be done at a higher volume facility and interpreted by a radiologist doctor. I think Lyn is going in the right direction. Perhaps even see a rheumatologist too. No stone should be unturned until you find the answer and any doctor that says anything to the contrary is a quack. It sounds like your quality of life is bad enough that it's beginning to demand an answer. That's where I was pretty recently when I found my answer.

I can't really speak to pain from mitral valve problems. I do think your pain sounds similar to some that I've had though, and I have mild to moderate aortic stenosis.

Good luck. Please let us know what you find out.

 

[Herb_Webb]

Beespin...Do you drink diet soda? Aspartame, the sweetener in many diet drinks has been linked to migraines. Its also a sweetener in many other products. I have a co-worker who said she suffered with migraines all through her youth into her teen years until she quit diet drinks. Ten plus years of migraines ended in two days once she quit "diet" drinks. One chiropractor I know had good luck with patients and food allergies. He said corn was a trigger for several of his patients.

Also I've been reading on Magnesium supplements for the heart. I've started taken in and it has calmed my arrhythmia quite a bit. I got the brand called Natural Calm. Mixes with water.

I was diagnosed with MVP, very mild....for years anyway....... and eventually ended up in surgery and now have a mechanical valve. I know others with MVP and one friend its not an issue until she sees a DR. she gets so nervous that all the symptoms you describe hit her the day before, then a couple days later she's fine. So anxiety, stress, nerves etc apparently play a role in her MVP. So I realize that with all that's going on its hard to calm down, meditate, or do some deep breathing. If you can just take the time to do at least 3 slow deep breaths, sometimes that can make a huge difference. Up to ten is better and if you can, think about something pleasant that makes you smile while doing the breathing. Refocuses your attention.

Best of luck in your journey.
Herb

 

[beespin]

Hello Lyn- Yes, my blood pressure has always been normal, and I've had complete blood work done as far as I know. They've tested for anemia, for thyroid, and other vitamin deficiencies and they tell me everything is normal. They have not mentioned the possibility of Chronic Fatigue Syndrome, and thats actually kind of bizarre to me. I will definitely ask about that. As far as my weight gain, I can relate to your mother. I hit 107 during my pregnancy and lost all 17 lbs and a few extra the minute my son came out. So frustrating. Although I'm a couple inches shorter than your mother, I've always felt extremely skinny and I hate receiving comments on my weight. My dr.'s all say, 'but why would you want to gain weight? youre a lucky girl'. Ugh, to me its like obese and someone saying that youre crazy for wanting to lose weight. Its awful. Did your mother ever find a way to gain weight or what was the cause?? Everyone in my family is perfectly normal of not on the larger side. My sister is 25 and is 5'4'' at about 220 lbs. so she's over weight. My mom is thin, but can easily gain weight, she's 5'3'' and stays around 120 lbs. So yes, out of my entire family, I'm the only one with the weight issues.

Hello Duff- Thank you for all your info and your personal experiences. Like I said before, I'm going to be seeing my dr. tomorrow morning at 10 am and I'm insisting on multiple tests and pushing for her to consider other possibilities than just my heart. And yes, my quality of life isn't to the point where its depressing really, but I dont want to find myself at that point which is why I need answers now. I just cant settle for the cardiologist saying that I'm okay for now and an annual TEE/bubble test is all I'll need for the next 8-10 years. I cant live with what I'm feeling for that long. Thanks again. =)

Hello Herb- Actually, because I'm so so thin, I stay clear from anything that reads 'diet', '___% less fat', 'fat free', etc. I cant stand the taste of diet soda or sweeteners like splenda. I've always used regular sugar to sweeten things. Corn I've never thought of, but in all honesty, I'm not a big fan of corn either, and I dont think I eat enough corn regularly to experience the migraines I get. But I wont hesitate to ask if the migraines could be linked to a food allergy. I'm sure I can be tested. And thank you for the advice on meditation and relaxing. I think everyone needs to do that often with or without MVP/MR. In all honestly, I'm trying not to stress, and although its difficult, I feel as though my symptoms have maintained the same throughout my life and the ones that have come on over time, have definitely not shown up because I was about to see a dr. Before I got pregnant, I hadnt seen a dr. in about 4-5 years and throughout that time, was having symptoms. You mentioned that your MVP was very mild, but then had a complete MVR?? Wow, what determined the surgery? I'm wondering if it would be in my best interested to just request to get it fixed sooner than later. Meaning, before it becomes a real problem. Either way, I'll be seeing new dr.'s soon.

I'll be keeping you all updated. Thanks a million!

 

[paige]

I'm sorry you are feeling unwell and anxious. That's understandable. If your MVP is truly mild, then I don't think it's your prolapsed valve that's causing you problems. However, I would probably take the CD and the written report for another cardiologist to interpret, and to explain in detail for you. Then, perhaps if there are no answers, I'd go back to my general physician (or a new) and talk about what you've been experiencing. I had mild regurgitation diagnosed when I was 13 years old and I didn't have repair until I was 45, when it was considered severe and I had enlargement of my atrium (even though I remained asymptomatic). I do think it's interesting if you have mild regurgitation that they didn't want you back in for another echo for 8-10 years. I usually had one every 2-3 years when my regurgitation was still mild. I would ask why that is as well.

 

[beespin]

Well, I had my doctor's visit this morning and she went over the report the cardiologist sent her. And now I'm confused. The report stated my MVP is moderate, which is what the cardiologist told me after my initial echo, but then she said 'mild' after the TEE/bubble test. I'm guessing it really IS moderate?? The leakage I have is at 55% which the cardio never told me, and that I have thickening...somewhere...I dont remember/know the terms which is also frustrating. We talked about my symptoms and she mentioned the possibility of suffering from anxiety, but the only anxiety I've ever had in my life is dealing with these evil doctors. She herself was slightly confused as to why the cardio didnt prescribe any meds, or explain to me more thoroughly about my conidition...she said the report wasnt very clear either. The only conclusion she could come up with is that the cardio doesnt want to operate for a few more years because she's anticipating having to replace my valve with a mechanical one, and in that case I would need subsequent surgeries to replace the valve hence its 15 year life span. They'd rather wait so the total surgeries I have in my life are less. But that being said, it makes me wonder why wait especially if I'm having symptoms to completely replace the valve? Why not just have a repair sooner than later so there is no subsequent surgeries? Like I said, I'm confuzzled and I could tell my doctor was as well. She didnt have an answer for me when I asked about the cardio considering an earlier repair than a later replacement. Weird.

Paige- In your case, what made doctors conclude repair vs. replacement? I'm confused as to why the cardio would rather wait until I needed an entire replacement of the valve rather than just repair. They said they'd be performing a TEE/bubble test on me annually for 8-10 years (or until I was 30) to monitor my heart UNLESS I started suffering from swollen feet/ankles or if they discover enlargement or clotting.

On the bright side I am going for a second opinion to Stanford Hospital to see a new cardiologist. Its only a matter of time until I get my first appointment, and let me tell you, I'm super excited. In the meantime, this Thursday, I have a follow up with my original cardiologist to ask some unanswered questions, I guess just to see what else she has to say, then I'll be politely thanking her and going on my way. Fingers crossed for some better info and findings at Stanford. Thanks everyone!!

 

[Michelle D]

I'm glad you are getting a second opinion. I had severe mitral regurg, and the first cardiologist I saw wanted to replace it with a mechanical, if you really don't want a replacement call up to the Cleveland clinic in Ohio and talk to their heart surgeons, you can send in all of your records and they could give you their opinion on it. At the Cleveland Clinic from my experience they do everything possible to repair your valve, that was a huge concern of mine and why I went to them. I'm glad I had it repaired, it's holding up great and my surgeon and cardiologist say I'll probably never have to have any mitral valve surgery in my future.

 

[beespin]

Michelle- I'm glad I'm getting a second opinion too. I dont feel like the cardiologist I saw was taking my situation seriously. She was very wishy washy when explaining things, and almost seemed in a hurry to leave the room every appointment I had. Then when I saw my doctor, and she stated the report was unclear, that made up my mind about seeking another cardio. What determined your surgery? In my case, I'm confused as to why they'd jump to the conclusion of completely replacing the valve later in life rather than repairing it earlier. I'll definitely take into consideration the Cleveland Clinic you mentioned. Hopefully Stanford helps me out and I have clearer/better answers. Thanks for replying.