Stress to heart

I am new to this site and have never added or even participated in a discussion but I figured I would try. So here goes....I am a 26 year old female. I was diagnosed with an AVM when I was 10 years old. I have had several procedures, one major life threatening and life altering bleed, and a few reconstructive surgeries. I see a specialist regularly and have some problems from the AVM. I have several different types of pain I get in the AVM daily as well as pain and weakness in my right leg. I am often very tired and I have heart flutters and weird feelings and sensations that are very difficult to describe. I've started this discussion because as I'm sure you all know there are a lot of questions surrounding AVMs and not always a lot of answers or precedents. My doctor has recently become concerned about my heart and how the AVM is affecting my heart. He wants me to see a cardiologist to study my situation further, but I just wondered if anyone else has any information or experience about how an AVM can affect the heart. I know my heart "works harder" than it would have to if I didn't have the AVM, but I don't know how it will affect me in the future.

Hi Elizabeth. Since an AVM is a vascular malformation it would stand to reason that it could affect the heart. I have seen several members on here talking about blood pressure problems. If you go to a cardiologist they will probably do an EKG along with an echocardiogram plus probably some sort of stress test. All of this will give you a pretty good idea of what is going on with your heart. I hope this info helps!

Welcome to this great group dear Elizabeth ... welcome my friend. Reading your message I felt you so much as I have the same worries about my heart ... my heart beating so hard and fast ... espesially when I am anxious that I think it will explode.
Dear Elizabeth visit a doctor ... I visit every six months a cardiologist who always advice me to think positive .... my doctor always says ''you are a young girl with a young bussy heart and dont worry'' and I belive him .. so visit a cardiologist an send me message and dont worry .. keep your faith strong
Kind Regards

Thank you both for the advice

Hi Elizabeth, I get weird heart flutterings too, it feels like a small surge, a small feeling of lightheadedness then goes away. I've been scared to see a heart doctor about it, ignorance is bliss, right! But I always wonder if that and the AVM are related too.

When I feel that way, i often wonder if it is a seizure? This is not intended to add to your anxiety! But it may be a consideration?

It's funny that you say that because I was looking up some things on google and trying to describe my symptoms and I get a kind of tickling flutter, and then it feels like someone is shooting electricity through me, and then I get I feeling like I'm going to have a seizure, but I've never had a seizure before. It just feels like a lot of energy shoots through me and I'm going to jump or shake. I don't know it's weird but I've recently started to wonder about seizures too.

Welcome...if you dont mind me asking has any Doctor advised you of what treatment the AVM is subject to if any...example can it be removed with surgery or is it in a very delicate location that it cant be touched at all. God bless and keep us posted cause your not alone

I have had two embolizations and a few resections. They were able to take over a pound of the AVM out but I still have it and some is in parts that cannot be touched such as my muscles in my right thigh and aligning some of my organs.

Its hard for me to comment as im not a Doctor but maybe second opinion may help ?? God bless

I just wanted to update anyone who was following this discussion that I did go see a heart specialist and he told me that right now my heart is very healthy and that the AVM does add stress to the heart and it's possible that in the future I could possibly develop what's called cardiac output failure, but that's for the future and I have no signs of that yet.

That's excellent news, Elizabeth! Eating and living healthy and keeping your blood pressure low will help. Meditation couldn't hurt, either.

Hi, Elizabeth,

I have AVMs in my right leg and buttock, too. The nidus is now gone because it was behind my knee and I had my leg amputated above the knee three years ago. I am 60 years of age.

Here is what I know based on my actual health experiences: I have an enlarged heart because of the heavy load my heart manages due to the AVMs' high flow. Enlarged hearts lead to congestive heart failure (CHF). I have also been diagnosed as having Pulmonary Hypertension (which is high blood pressure in the lungs). The pulmonary hypertension was diagnosed based upon a certain reading which is given during an echocardiogram. To my understanding, the reading is a measure of "back pressure" off a blood vessel coming from the lungs into the heart. Pulmonary hypertension can be quite serious. I briefly saw specialists at the University of Michigan Medical Center, but they decided the pulmonary hypertension was caused, just like the CHF, by my AVMs' high flow and they could not offer me any treatment because of that.

All of my non-AVM specialists, including my cardiologists and pulmonary (lung) doctors, have wanted to treat symptoms without consideration for my AVMs. They wanted to give me the usual "cookie cutter" treatment that they would give most everyone else. They always fail--initially--to understand these issues are all related to my unusual circulatory system. To counteract this "cookie cutter" mentality, I research online extensively always looking for possible, yet not necessarily common issues that could relate to my AVMs before visiting a new doctor. During a doctor's visit, I regularly bring up my AVMs and always ask about potential relationships and issues related to them.

TREATMENT for CHF and Pulmonary Hypertension: Prior to the amputation of the nidus, I experienced shortness of breath, but do not have this problem currently. Shortness of breath COULD have been a symptom of congestive heart failure as is also fatigue and swollen feet. I don't have those symptoms, so my congestive heart failure (if I have it) is currently symptom free. I take a blood pressure medication for the high blood pressure in my lungs.

ANOTHER CARDIAC ISSUE: I also experience Atrial Fibrillation (a-fib) which is irregular heartbeats (and, as in my case, it can also be racing heartbeats). A-fib can cause strokes because it can cause blood clots that go to the brain. The usual treatment is to go on a medication that will regulate your heart and also to go on a blood thinner to prevent blood clots. I refused to go on the usual blood thinners because of the possibility of a bleed or the risk of bleeding out if I cut my leg. I would only agree to take an aspirin. Also, I could not handle any of the medications available to regulate heart beats due to having asthma. (These meds may not be workable for folks with asthma because they can make the person very short of breath which they did.) NO PROBLEM! Why? Because a very easy procedure is available to deal with a-fib. It is called an "ablation". I had that done, but still experience occasional a-fib for which I take a low dose of digoxin instead of one of those other meds.

A CONNECTION BETWEEN A-FIB AND PULMONARY HYPERTENSION? Yes! It is "Sleep Apnea". You see, "Sleep Apnea" can cause a-fib and there is also a proven relationship between sleep apnea and pulmonary hypertension. If you snore, if you are having irregular heartbeats or if you are diagnosed with pulmonary hypertension, get a "sleep test" to check for sleep apnea. I did and I have it, but it is easy to treat.

Possible cause of the FLUTTERS you mention: PVCs (Premature Ventricular Contractions) which are generally not a problem, but need to be checked out (possibly by wearing a Holter Monitor).

WHAT I BELIEVE, BUT DO NOT "KNOW" FOR SURE: I was told when I was about 20 that I would die from CHF because of my enlarged heart. I'm 60 and I am not experiencing any CHF symptoms. What if, according to my marvelously unique circulatory system, my heart ISN'T enlarged? What if it is JUST RIGHT for my body? What if, according to my marvelously unique circulatory system, the blood vessels in my lungs are accustomed to ALWAYS handling a higher than typical blood pressure? What if it is JUST RIGHT for me? I'm beginning to think this is the case, but who knows? At any rate, I always weigh my quality of life against any treatments offered especially since some might not make any difference or some could make things worse due to my AVMS. That being said, I do take cardiac meds and I see my cardiologist annually. I take tests to monitor my cardiac and pulmonary health and I also watch my diet. I partner with my doctors to weigh the risks and benefits of any potential treatment and then we proceed.

MY RECOMMENDATIONS especially for YOU: Visit a cardiologist and check him/her out while you are checked out. If he/she is not willing to listen to you and take the time to appreciate your marvelously unique circulatory system, then he/she is not for you. A tip: If you have a bruit or nidus that you can have the cardiologist listen to and touch, gently insist he/she does so. Your words cannot convey "high flow" in a way they can comprehend nearly as well as letting them experience it for themselves. Do not copy any treatments/behaviors that I may or may not be doing for my unique health circumstances. You are also unique. Research your health issues. Partner with your doctors to make the best decisions for you. Above all, trust your gut.

Good luck! Please keep me posted if you do not mind.

Beth

EDIT: Elizabeth, excuse me. I now see you posted an update stating you since seen a cardiologist. I will leave my post though because it still might have benefit. Thanks!

You need to see another cardio doc! CHF is a real possibility. It’s not fun but keep going til you find correct answers. Most docs wiil NOT take heart issues in young women seriously. It took me 10 years to find one. Between AV block,a-fib throwing around 10,000 PVCs a day, and the added stress from dealing with my David and his med issues, my health sucks.

Thank you for your reply, Beth! I haven't been on this site for a long time. I am currently having more problems with the AVM and my heart and increased pain that is really affecting my daily life. I am seeing another cardiologist soon and a new specialist for a further embolization. I guess I will wait and see what this new dr thinks about my heart and the AVM.

AVMs cause shunting, which means that blood speeds from an artery straight into a vein without intervening pathways and straight back to the heart, over and over. Extensive AVMs like yours with significant shunting may result in high cardiac output; over time, high cardiac output may lead to high output cardiac failure. Partial resections may sometimes be helpful to slow down this effect, and this may be why partial resections were recommended to you in the past.

Please let us know what your cardiologist recommends, as I would like to know more about treatments or medications that may be helpful to those with high cardiac output.

Elizabeth, which specialist has been recommended for your next embolization?

I have Avm in my right arm and I have lately been suffering from spasms and on a night I am woken by my heart racing.
I have seen a cardiologist who merely says well I can see you have a racing heart from my 24hr heart trace but because it is regular its fine.
But since having two ops to embolise the avm I’ve had a reaction in recovery, my heart went tachycardic but was fobbed off.
I’m on beta blockers but its not helping now.
Has anyone else faced obstructive docs if so what did you do