PFO Closure - Open Heart or Transcatherer 3

Hello everyone and welcome to all the new people to the forum!

Jeannamarie - I am so happy your procedure went well!  It was better to have it done now, rather than to wait until your body deteriorated further, I think. And you are back to work already... that is awesome!  Please keep us posted on your continuing successful recovery.  We all love to hear the good stories!

Dejaboo - I am sorry to hear you are still having so much trouble blood clots and hemorraghing.  I have to say, now that I am off Plavix, that my periods are back to normal.  When I was taking Plavix, I had TERRIBLE cramps combined with constipation first and then diarrhea.  Now that I am off the medicine, my period are back to normal which means almost no PMS for me thankfully! I hope you enjoy your Summer - you deserve it!

PFOMOM - welcome to our wonderful forum!  I think most interventional cardiologists can perform a PFO closure, although some have more experience than others.  I "lucked out" with my Int. Cardio bec. a friend recommended her dad's doctor.  It turns out he has done many of these procedures... he may be considered to be one of the top in this region but I am not sure.  I agonized for a few days over mentioning names here, but I decided if it helps our community why not.  My amazing cardio who performed the procedure is Ramon Quesada at Baptist Hospital in Miami.  He has a younger, up and coming doctor, who is "my doctor in the office."  Let me tell you, all this medical terminology and terms I've learned in the past year or so, it's incredible...  This awesome "doctor in the office" is one of the doctors who finally took the time to listen to my symptoms and take me seriously.  He is the one who sat with me to help me decide what we should do and who showed us the 3 month echo that the PFO was closed and who took such great care of my emotional and mental health during this incredibly difficult period in my life.  I truly feel that it is because of his listening ear, great ability to deal with patients, knowledge of his craft and superior reasoning skills that I am still alive today, because my body could not go much longer.  He is the doctor in the office, because he is still young and is just now building his practice and experience, but boy, does he have a great future ahead of him!!! His name is Marcus St. John and he cares and he LISTENS!  As far as your neurologist goes, since it seems we are in the same region, I would get a second opinion regardless of what he tells you.  My first neurologist was a doctor I picked "out of a hat" so to speak, just from my insurance book after my TIA and the ER doctor suggested I go see a neuro.  This first neuro seemed brilliant but ignored my symptoms... I later learned he was running a PFO closure study to prove the migraine-PFO connection.  I did not have a history of migraines so I was not good for his study and therefore "dispensable."  Although he is regarded as a brilliant neurologist (I later found out), he is not a "brilliant" doctor when it comes to caring for his patients.  So, if this is the neuro I think you have (Forteza), please get a second opinion.  I stopped seeing him because he dismissed my symptoms even though I kept telling him I felt exhausted and out of breath all the time.  He gave me migraine medication when I don't suffer from migraines!!!  Sorry... this is why I agonized over names, because in this recent life- changing experience, I got to see many dimensions of the medical profession and doctors, both wonderful and terrible!  I hope this helps you, but please feel free to e-mail me at [email protected] should you need more information.  If your neuro does not recommend closure, please seek a second opinion.

Beezy 84 - Life is like a box of chocolates, isn't it, you never know what you are going to get!  The whole idea of a hole in my heart let alone an IMPLANT in my heart were so alien to me and yet, here I am 6 months after my implant and thanking all my lucky stars that I did it!  It is so difficult to make this decision and life has no guarantees... all I can tell you is that my life post surgery is incredibly better than my life almost two years before surgery when my health deteriorated rapidly.  I hope you follow your heart and your gut instincts and once you have made your decision, don't look back!  Life is too short to live with regrets.  I hope you will keep us posted.  By the way, I have the Cardio Seal implant.  No complications and after 3 months, the hole was closed!!!

withnail1969 - Welcome to the forum!  I did not get any specific advice on flying, but I think each doctor has their own set of recommendations.  I was not to see a dentist or get any type of MRI for 6 months.  I think the cardio is the best doc to give you advice post PFO procedure, not the neuro.

I wish everyone much luck and wisdom in making their decisions.  These are difficult times, but you can do it!!!  I am living proof of this... my life is almost back to normal and I am enjoying every minute of it like you can't imagine!

Greenhope

withnail, I'm sorry your symptoms seem to be increasing. I hope the procedure helps clear them all up. I actually had very few symptoms. I had always had migraines with auras and I had always been super cold especially in my hands and feet but never really gave either a second thought. I was perfectly healthy, on no medications or anything when one day out of the blue I had a TIA. That's when they found my PFO and ASA. Since my closure my migraines are gone and I am noticeably warmer.

Well, I'm scheduled to have my PFO closure procedure next Tuesday.  I guess there's no looking back now!  Wish me luck!

Good luck breezy! My news may not be so good. Since my post year bubble study still showed leakage my cardiologist wants me to have another TEE. I'm going in for that next week and then he will decide if it is small enough that I can live with it without too high of a chance for another stroke or if I have to have another device placed next to the old one. I so hope that I don't have to go through this again!

Hey everyone.

So, I had my closure this past Tuesday- three days ago. My story is the same as most of yours. I am 27/f. I had never had a migraine and was perfectly healthy and extremely active, when I was about 22, I had been wakeboarding with some friends all day... on the way home, I began feeling strange, my vision started changing and suddenly, I couldn't speak normally, my words were coming out wrong, my sentences were not making sense, and my speech was slurred. It scared the crap out of me, but I figured that it was probably from having some good falls while wakeboarding. I went home and went to bed and thought nothing else of it. Then, about 2 years later, while I was working out @ the gym with my husband, out of no where, I suddenly couldn't see correctly, I couldn't construct sentences, my words were all coming out wrong. We left the gym and went to the ER. They ran tests... all of which came back normal. The ER doc told me it was a migraine with aura and sent me home. SO... over the past four years... I had this episodes repeatedly and each time, I assume it's a "MIGRAINE", I take some excedrin and go to sleep for the rest of the day. about 2 mos. ago, I had one of these episodes and I woke up the next morning with a permaneant black spot that I see out of my left eye. I then decided that I was NOT going to believe that these were simply migraines. I have never met anyone else who has migraines like mine! First, I went to an eye dr. to make sure that nothing had happened to my retina to cause the visual disturbance, he said my eyes were fine and recommened that I see a Nuerologist. I made an appt. with one, but couldn't get in to see her for 3 weeks. I was going CRAZY with this black spot in my eye and I was feeling like I had taken too much cold medicine-- kind of cloudy in the head, dizzy, etc. So, I decided to go see my Gen. Practice Dr. He listened to my WHOLE story with SO much compassion and understanding and he said that he wanted me to see his friend, a cardiologist in our area to see if I may have a hole in my heart and to also have an MRI with contrast ASAP. I had no clue what he was talking about and no clue how my brain problems would be coming from heart... but I trusted him and went ahead with the testing. I saw an AMAZING cardiologist! He does HUNDREDS of closures (and had a stroke himself leading to his own PFO closure) and is the "GUY" to see in my area! After my CDT and my Echo w/ bubbles, he sat down with me and told me that what has been happening to me is NOT "JUST MIGRAINES" and that I am having mini-strokes. He showed me my test results which showed that I had a "GIANT" (as he called it" ASD and an ASA. The shunting to my brain was a 5+ and he recommended that I be closed ASAP. I went ahead and scheduled it and then saw a neurologist just to get her opinion. She kept telling me how lucky I am that nothing more serious happened during one of my episodes and also recommened that i have the closure ASAP. ... I can NOT tell you how grateful I am to have a Gen. Practice Doc. who listened to me, who believed that MORE was going on that CLASSIC MIGRAINES, and who took the time and effort to look a little harder for what was happening!! He is AWESOME!!! I praise him more than any other doctor I have ever seen!!

So... now, 3 days post closure. The procedure itself went perfectly. I woke up the day after with aching pain in my chest... which, I have been told is normal. I have had this pain ever since. Yesterday, I woke up, feeling good... and then, I started seeing weird things in my right eye... like silver, flashign lights... it lasted for appox. 30 min and then I got a migraine!! WHAT?? ALREADY!?? I couldn't believe this! I called my doc. office and talked to a staff there, who said that this is actually common, that many people experience visual auras and migraines in the first little while after their closures. I haven't read about ANYONE on this forum who has had anything like this, this recent to their closures! Anyone ever heard of this!?? So, I took excedrin and the headache went away... All was fine the rest of the day. Then... last night, @ 2 am, I woke up to my heart beating so hard and so fast that i thought it was going to beat right out of my chest... I was also having horrible stabbing pains in my heart. It lasted about an hour-- maybe 2-- and I finally fell back asleep and woke up this morning and things are fine again! GEEZ. I thought this recovery would be a walk in the park and that I'd be back to normal by now... I thought I was having a heart attack last night! It freaked the hell out of me!! I, again, called my doc's office and spoke to a nurse who told me that if this happens again, I need to come in and have a EKG done and wear a holter for 24 hrs. to find out if I have an arythmia problem!?? I don't even know what that is... She said a little bit of heart beating hard and racing is fine, but that it shouldn't be lasting that long or causing that much pain. HMMM?? I feel bad for my heart.. I feel like it is completely traumatized by this invader and that it is trying to get it out! It seems that many of you have had these same problems... but it seems like yours came on several weeks after closure... mine is only days after. I wonder if this is weird?? Yes, it is freaking me out that i have a foreign device in my heart and it's freaking me out even more that my heart seems to hate that it's in there!!! I am becoming a nuisance to my cardio's office, but I don't care! It's my heart we're talking about and I don't know what's normal and what's not, so I will call as many times as I want!! :) Luckily, his staff members are AWESOME and so helpful! My husband's good friend works for my cardiologist and has also had the procedure done, so we are calling him daily with questions as well!! Although the procedure itself is simple, the aftermath is a bit scary and the fact that someone is messing around with your HEART is abit un-nerving as well!!

Reading this forum has helped me A LOT! I stayed up reading the night before my procedure and I am so glad that I did so that I knew that there could be some complicated symptoms as part of recovery. I am staying patient and taking it VERY easy while my heart learns that this new intruder is there to stay!!

Other than these things, I am feeling okay. The dull ache in my chest, is nothing unbearable and nothing that I need to take pain reliever for. I can handle that, I just can't handle the crazy pouding/shooting pains in the middle of night!! (wouldn't be bad if the migraines with aura never came again either!!)

One thing I keep reminding people, is that closure is NOT for the relief of headaches/migraines. Many people keep telling me that they hope I never get another headache again after this procedure! Headaches/migraines are no fun, but that is NOT why I went through this procedure. The ONLY reason I did it was for the PREVENTION of future MAJOR STROKEs or TIA's! I don't care if I get an occasional headache here and there, what I care about is that they aren't going to cause disability or death!!!

It has been so good to read all of your experiences-- the good and the bad!

Sending best wishes for quick healing to everyone!! :)

Climbing4life - how are you feeling now? Do hope things have settled down for you.

Beezy84 - hope you are doing ok, I look forward to hearing how it was for you!

Catmom5 - you haven't had much luck have you? Hope that changes for you soon, let us know how you got on at the hospital.

Greenhope - thanks for your kind words. I already get palps when I bend forward, hoping the closure will make that better not worse!

I'm seeing the dr who will perform the procedure on Monday, what questions did you all ask? I know he does this procedure a lot but what else should I quiz him on - I don't want to forget anything!

Thanks everyone

Jeannamarie - so glad your procedure went well. Did you have the TOE/TEE whilst having the closure? I hated that test so much I'm hoping I don't need it again.

Thanks for sharing your positive news!

To anyone who was wondering: My procedure was actually postponed from the original date (this past Tuesday) and rescheduled for tomorrow.  I'll let everyone know how I am once I return.  Thanks for your concern!

JeannaMarie - I hope it's the same for me, that camera experience was vile! The stitches bit sounds grim.... hope you are getting used to the Coumadin, I've been on warfarin for 10 months now and getting a bit fed up with crazy INRs!

Beezy84 - do hope all went well and you are doing ok. Look forward to hearing all about it!

Catmom - what a pain! Do hope your healing has just been a bit sluggish and future TEEs show an improvement. Will keep my fingers crossed!

Hey everyone! Thanks for your responses!!! I haven't had any additional problems @ all... no weird heart beats, no chest pain, no headaches... I am feeling great! It's only 2 weeks post procedure... but, I am to the point now where I have to remind myself to be careful with lifting and with being too active because I feel so normal! This is a great thing!! The first week for me was rough... but I am doing much better!! KNOCK ON WOOD that this continues!!

I haven't noticed any difference when I bend over... I was trying it, but don't notice anything!!

Good luck to everyone who is recovering or who is about to have the procedure done!!!

 

Great to hear Beezy84 and climbing4life are doing so well!

I've just met the Consultant who will do my procedure, he was great, he has done hundreds of closures and was very calming. I'm gonna have a GA which I'm fairly happy about as I hated the TOE so much. So I've just got to wait now, he said the maximum wait is 3 months but as I can go in at short notice I'm hoping for a lot sooner than that!

Stay well everyone.

I have just been diagnosed with a PFO this past Thursday with the bubble test but am scheduled for the TEE on 5/18/09. My cardiologist couldn't believe that I had not been diagnosed before this. I had my TIA (it did show up on the MRI) a year ago at the age of 56, left sided weakness, couldn't talk clearly but all this went away in about an hour in E.R. but the doctor couldn't explain why I got it. I didn't have HTN, and was active. Didn't have any predisposing conditions for a "stroke".

This year I had to find a new PCP as my other one retired. My new PCP wanted a complete physical because of my history and the fact I told him that sometimes it feels like my heart quivers or goes into a spasm that it takes my breath away and I had decided to start walking a couple miles a day as I was putting on weight since losing my job. I told him that by the time I was done walking the 2 miles I was dizzy and could hardly breath to the point of feeling like I was going to pass out.  I did have periods of shortness of breath with some chest pain but this was like something I had never experienced before.  So he ordered a stress test, I repeated my symptoms to my cardiologist, he ordered the "bubble test" and bingo! There it was! I don't know the size as yet but they immediately sent me to see my neurologist who wants me to have the repair. I also have a history of migraines plus I had viral meningitis 2 years ago (for the 4th time in my life) so my neurologist thinks I should have it done ASAP.

I have already booked a trip to Ireland and am leaving July 16th with my 80 year old mother (who is in better health than me!!  ) So I told the Dr's that this would have to wait until I got back because I have been promising this trip to my Mom for 3 years. They told me not to worry because everything would be done in a matter of 3 weeks and I could still go to Ireland as the repair would be done thru a catheter. I was shocked but pleased.   I was really frightened by the possible risks involved with the procedure but reading everyone else's experience has alleviated some of my apprehension even though it IS still heart surgery.
Thanks Everyone!!!!!

Post Edited (irish4200) : 5/12/2009 5:37:40 PM (GMT-6)