Should I change doctors?

[brandygirl79]

I am a 30 year old female who had a stroke when I was 28. After the stroke the docs sent me to a cardiologist to check my heart and found that I had a PFO. They also found that I have a blood disorder that makes my blood clot very fast. They put me on Plavix, asprin, and Arixtra. They closed the PFO, but I still had and have alot of chest pains. I have a heart murmur and 2 leaky valves (very small leakage). I have perioditis twice in 3 months. Things now have gone down hill. I am very tired all the time, it's painful to lay on my left side, the palpatations take my breath away. i am short of breath and have the shakes alot. I went to the doc and he said that the murmur has gotten worse. My bp is usually 115/90 and my heart rate is usually 90 or above. My doctor doesn't seem concerned but I am feeling so bad and am becoming worried with my chest hurting all the time. Any advice?

[ibbrave7]

What exactly is a PFO? And how do you know if you have this? What tests are done?

[Ness_is_a_mess]

Hi. Just wondering why y'all had strokes at such a very young age?  Did either of you have a history of heart disease? My friend is a med student and we have yet to discuss this topic. I always thought that strokes were more common to older folks.

[Wisconsin2007]

Sounds like you're disappointed; I'm not sure if having a small hole is good news or bad news.  I guess the good news might be that this may not be causing the problem. The bad news of course being that if that's the case, you're back to square one in figuring out what the problem is.

Hope you're able to find out.

[anomale]

I had my TEE done today. I have a small but clinically "insignificant" hole. Did any of you have small holes that still caused your problems. I don't know where I stand now. I don't know what to do or who to see next. I am feeling quite disgusted with medical community today. THAT STUFF YOU DRINK I NAAAASSSSTTTYYY!  Why didn't you guess mention that?? Whew! Tasted like the exhaust pipe of a Dump truck. :(

[anomale]

I go in tomorrow at 10:00 for the TEE test. The doctors feel there is a hole and so do I but we have to be sure. If I do in fact have a hole (which the bubble study pretty much showed) then I will be looking up your doc! Thanks again! I'll keep ya posted.

[MaryMaryO]

You are so welcome!!  I can't tell you how much seeing him and having the surgery has changed my life.  Please keep me informed on how you're doing!
Mary

[anomale]

You are a Godsend! I am so going to look him up! I live in Winchester and I have no problem traveling to see this man> ( he invented one of my most favorite games in the worldl! You are the bestest!!!! I like my cardiologist and but I feel like he thinks I am chasing after a migraine cure. That is how I started this but I now I feel like poopy! and I that I have had a few TIA's and a possible stroke and so now I need to get on the ball! You really have made my day MaryMaryO :)

[anomale]

HI, I see my cardiologist in at WMC (Winchester Medical Center) they are supposed to be in the top 100 in the US for Cardiology but I am not sure who gave those stats or if they are even correct. I do know that my Doc is working with me to figure it out but at the same time doesn't want me to feel that there is a connection between migraine and PFO (even though I feel that it is). I do realize that some people do not get relief of migraines after closure but I think that these people have other heart issues like dealing with their valves or other things. I believe Brandygirl79 said that she still suffers migraines even after closure so it does happen. As far as devices go, I am not sure if the Amplatzer is similar to anything because I haven't done enough research on it. The foreign object thing stems from me having my tubes tied after my second child. They asked me if I wanted to be burned or clamped and I knew that a clamp was "not of my body" so I chose to cut and sever. Wish I hadn't now but...what can you do. I heard about this device in the UK called the BIOSTAR where they place this dissolvable "thing" in place of your hole and eventually your own heart tissue replaces the hole. This sounds pricey and many people probably don't have access to it so I doubt I will either. I will gladly take a foreign object at this point.!!! MaryMaryO said that her doctor used her own heart tissue to cover her hole and thought that was just awesome. So how do you feel after closure? Are you glad that you did it? I go Tuesday the 13th for my TEE to see if and how large or small the hole is. I wish you the best health and that positive things come your way.

[MaryMaryO]

Anomale...

I believe things happen for a reason...  I live in (sort of) northern Virginia as well (Fredericksburg).  The opinions I got were from a doctor in Richmond, one in Washington Hospital,  and finally (the doctor I went to) in Johns Hopkins in Baltimore.  His name is Dr.David Yuh.. and he is wonderful!! Google him.  Please try to get an opinion from him if your insurance company covers it.  He was so wonderful and knowledgeable (and a bit of trivia.. he invented the old video game Asteroids!).  Ironic that you live in the same area.  If you have any other questions at all, please let me know, I'm  more than happy to help.
All the best,
Mary

[nervouslady]

My problems have been dismissed as well due to my young age.   In fact, for the past 4 years I've been experiencing crazy arrhtyhmia runs, but all docs didn't even put a stethescope to my chest because I'm young - the told me not to worry and sent me on my way.  Last week I find out they are potentially deadly arrhythmias, and that the right side of my heart is messed up.  
If you feel something is wrong, I'd try another doctor, and another if you have to, until you find one who will look into things and take your complaints seriously.  

Anomole: I used to live in Northern VA - in Clarendon (Arlington).  Does GWU have a good hospital?  I was in good health when I lived there so never looked into good cardiologists but I'd check them out.

Gee, I have some foreign object thingie (dont' even know what it is) in place of my PFO.  Hope that's not a big problem or anything...?  Is the amplatzer device the same thing as the 'butterfly' that they pop into place in the PFO?

[anomale]

Let me say that you are quite a trooper. Here I am trying not to cry sometimes because "I don't FEEL good", and you have gone through the trenches!!! WOW! I really appreciate your words of encouragement. When the times are bad and I look at my kids and think "I will see you two get married and I will see you grow up to be men," it is these times that I feel the strongest. I have to stay here! There is no other option! Thanks again for your positive words!!

[anomale]

First, I would like to thank you so much for sharing. It helps me better understand what I may be getting into and options that I may have. THANK YOU! I am so glad to hear that you feel great. I feel so...blah ...all the time. I used to have so much energy as a kid and teenager and now I struggle to stay awake 5 hours after getting up from sleep. HA! I know that I have to keep on going and pursuing my good health. I have dreams where I feel so good and I am doing this like flipping and things that I just can't do (and probably couldn't do even after surgery) but the dream feels so good and keeps me going. I would love to know what hospital you went and what doctor you chose but I don't want to step on any toes. I live in Northern VA so I may not even be close to where you are. I am only curious because you said your doc used your own heart tissue. I don't really want any foreign objects in my body either. I heard that in the UK they have a device called BIOSTAR that is like disolvable stitches and it leaves only your heart tissue in place of the hole. Sounds nice,,,and expensive! Anyway..if you feel like sharing your facility and doctor that would be great and if not I appreciate you all the same and am glad to have crossed your path on the great web. :)

[Bubbles062]

I had my first stroke at 21.  Since then I have had 2 more and numerous TIA strokes.  For over 50 years I have been a cardiac patient and refer to myself as a Bionic Woman.  I have had 4 cardiac arrests and I'm here to tell.  For many years I had Mitral Stenosis until I received a St Judes replacement Valve.  Four years ago I had an AV Ablasion and I suffer from Constrictive Pericardius.  

Without going into a lot of complex medical diagnosis information I just want to bring words of encouragement.  Medicine has come a long way over 50 years and by rights I shouldn't be here.  Just keep the faith, don't panic and try not to become too anxious over your diagnosis or waiting times of test results.

I have been told to get my papers in order a few times and say my goodbyes.  But through sheer determination and willpower I am still kicking.

A Positive attitude will help every time!

[MaryMaryO]

Hi anomale..

Yes, I did have this corrected.  As I said yesterday, I was not a candidate for the Amplatzer Occluder device (the clamshell device that is inserted through a catheter through the leg) as the FDA's guidelines require two documented strokes before approval.  In my research, many are happy with this device (including my neighbor), but I have also read about complications with the device that would have me hesitate even if I had been accepted.  What my doctor did (in Johns Hopkins) was use my own pericardium (a slice of the bottom of my heart) to create a patch to fix the defect (and the associated aneurysm).  I actually liked the idea of using my own heart as opposed to having a foreign body in my heart anyway.  This was done minimally invasively through two small portals in my side. I did not have any ribs broken or the "zipper" down my chest.  The surgery took a couple of hours and I was out of the hospital in five days.  As opposed to a total sternotomy where I would have lifting restrictions, I was able to lift whatever I felt I could.  I would say that I felt fully recovered within six weeks. The best part is that I was having migraines (with visual loss) at least once a months.. as often as 5-6 times a month before my surgery.  My surgery was 11/13/07 and I have not had a single migraine since! I feel wonderful and only wish I had done it sooner.  The surgery I had was similar to Robotics, only a robot was not used.  My doctor was one of the pioneers of robotics and felt that with my surgery, as with many others, he could use the tiny portals rather than the full sternotomy, but did not need the robot as it could be cumbersome.  I am feel so much more energetic and am not debilitated by migraines or loss of vision any longer (especially now that I am told that they were strokes all along).  I wish you all the best.  Get as many opinions as you can. I went to three cardiac surgeons and each wanted their own TEE.  My insurance company said to get as many as I wanted as it was major surgery.  Good luck!

[anomale]

I am sorry. You said you had an ASD which is larger than a PFO? Did you have this corrected?

[anomale]

Hello there! Brandygirl79 and I have spoken briefly about her PFO and what her experiences were like. I hope she finds the help she needs! I am due for a TEE test on the 13th (this coming up Tuesday) and I am pretty sure I have a hole as the bubbles in my study showed up late which frequently suggest a PFO. Anyway,,, I was reading that you have also stroked and I feel that I have before but it isn't documented. What device did you use to close your PFO and did you feel better or worse afterwards? I have read that some feel like they have never felt before while others say not much changed and they still feel sick and weak and suffer migraines. Thanks for any information that you share. :)

[MaryMaryO]

Hi Brandy.. I would certainly get another opinion. For most of my life I suffered from what I was told were "ophthalmic migraines" (I would lose much of my vision for approx. an hour sometimes accompanied by difficulty expressing myself verbally). This would happen anywhere from 1-5 times a  month. In 2007 I had an episode that lasted 5 days. I saw a new doctor (not like I had a choice, i had previously moved out of state). It was discovered that I suffered a minor stroke. Workup showed I had an atrial septal defect (virtually a larger PFO) along with an atrail septal aneurysm. I sought advice from cardiac surgeons. First surgeon wanted to do a full sternotomy open heart, second said I would be ok on aspirin daily (didn't do any good) and the third (at Johns Hopkins) suggested (and did) minimally invasive open heart through small portals in my side. I was out of the hospital in five days, recovered within a month or so, and have never had a "migraine" (stroke as I am now told they were) since! I have more energy, am no longer cold, and my heart rate is lower.  I saw my cardiologist for my one year postop surgery and he says my heart is stronger than most (I did have some enlargement at the time of surgery on one side due to the weakened state the defects caused which all went away!) and he no longer needs to see me. Ever.  I would definitely seek another opinion... had I continued the path I had been taking (just aspirin), I could have suffered a major stroke with permanent effects.  Also.. I was told the Amplatzer occluder clamshell device was not an option for me as two documented strokes are required by FDA and I had one (documented.. all the others were undocumented as I did not seek medical help as I was told they were migraines and I had to live with it).  Good luck!

[brandygirl79]

Thanks for your response!! I thought too that it might be some kind of anxiety, but they have ruled that out. They still have  me on some meds that are for anxiety but all they do is make me sleepy. On my last echo the tech said there was a dark spot on the right upper part of my heart. Still don't know what that is!! At one time my heart rate jumped from 77 to 127 in just a couple of minutes while I was at the docs office. They keep telling me that I am to young to have something wrong, but I find that hard to believe since I had a stroke at 28. The only residual effects from the stroke is some memory problems, some right sided weakness, and I can't hardly do math anymore. I also suffer from awful migraines since the stroke. The pains are very sharp and there's alot of pressure. Makes it hard to breathe.  I think my age plays a big part in how the docs treat me as far as listening to me and actually doing something. I always hear that i am too young. Makes it very hard.

[nervouslady]

Hi Brandygirl,
I'm so sorry to hear about your situation.  :-(  I had a stoke at 24, and it was the same situation for me - PFO closure.  It has been nearly 10 years since the closure (which had to be done via open heart surgery because the butterfly technique was 6 months away from FDA approval at that time.  *****?  Yeah)  After the surgery, because it was sooo invasive, I had lots of problems.  Paracardial effusion - really bad one that required emergency surgery, during that they punctured a lung AND my breast implant.  Thanks guys.  Needless to say, it was one thing after another for some time until things settled down.  
I, too, had really rapid heart rate - 120 at rest - and yet very low bp - 86/61 or thereabouts.  I also had a LOT of anxiety.  That kind of stuff, at such a young age, is terrifying and I think can cause post traumatic stress issues.  For many years after that I had acute anxiety, which caused tachycardia and PVCs.  I, too, have some chest pains.  Do they feel like pinching or sharp kinds of pain?  Mine are due to scar tissue.  Nothing to worry about but a bad deal.

It *****.  There's no way around that.  I did get better after a couple years and was working out and having a good time and felt great.  In recent years, I've developed VT but they do NOT think it is linked to the PFO closure, as it involves my ventricles and my surgery was north of that.  Needless to say, I'm now nervous again about the ventricular prob and am eager to get this fixed/helped.

Anyway, you are not alone.  I wonder if your shaking, fatigue and even shortness of breath are due to anxiety or panic attacks?  They are very common after going through what you've been through.   Your bp looks great, your heart rate is within normal limits, too (60-100 is normal).   Did you have any residual effects from the stroke that might be causing the fatigue or pain?