PFO Closure - Open Heart or Transcatherer 3

climbing4life
Thank you for your feedback...I should find out more this week as to the size of the hole and what my cardiologist thinks is my best bet from here. I totallyl undertand the anxiety part of it. i haven't had a good nights sleep in weeks. I am afraid to get my heart rate up and it feels like my heart races during the night and I get trembles all night. I think it's my subconscious that kicks in with the fears I don't deal with during the day if I'm busy.
I haven't had anything show up on CT or MRI to suggest MS or stroke anything else...I did blood work up and that was all fine. This PFO is the only thing they can point their finger at . My doctor said the mini strokes going across the heart wouldn't show up but could be happening. I am wondering why at 43 is it happening now? If I was born with it? Did you ever get any info as to why it happens later in life? You are still young. A lot of people have been having problems since their teens with migraine etc...
I think you did the right thing, and I'm not sure about insurance etc, but that is secondary to just feeling good again. thanks for sharing.
ps
can you tell me your vision disturbance history again? Was it off and on or continual...was it getting worse...was it different in different lighting?

Hi Greenhope, thank you for your kind words. To be honest I haven't been well for a while and it looks like I had a TIA in march. Good news is though and that is that they have found the clot and fingers crossed it will soon be gone. The bad news is that I am on warafin for life, and the big one for me not supposed to ride! but after talking this over with my doctor and she has explained the risks (internal bleeding if I should fall) I have decided that I will carry on riding but justing bimbling (walking) around the countryside.......... no more HI HO Silver Away lol! 

How are you?  Have you got your life back? remeber how we used to say we want our lives back? It's so good to hear from you. I wonder how the others are doing from our old forum days 

 I have been reading past threads it is good to see everyone still helping everyone. That is what I have always loved about thsis forum

Hi Rocky'smom-

Did you go to Doctor yet?? If so, how did it go? Did you find out any more info???

As for my vision history... I never had any problems @ all until I was about 23.... I would have visual disturbances (silver spinning things, blindness in my peripheral vision, blurred vision, etc...) along with an inability to speak normally once or twice a month...that would last for about an hour or so and would be followed by a terrible migraine. I never had the visual problems other than in these strange incidents. about four months ago, this happenend, where I couldn't see or talk and had numbness on one side of my face... I thought it was a migraine and went to sleep... when I woke up, I had a permeneant blind spot in my left eye.... I still have it to date. Since that time, I have weird vision, nothing like I described above, but just like my vision is different. It's not all the time, it comes and goes and I can't really describe how it's different, it just is. It seems like it's like I am looking through water or something and is usually when I am feeling dizzy. I have really bad allergies and my ears constantly feel plugged... so, I wonder if the dizziness/weird vision could be caused by this?? I feel like a nutcase going back to my doctor about it... so, I am just waiting it out and hoping that it's allergies and that it'll go away when the season ends!!!

I have wondered the same thing as you, why, if I was born with this, did it not cause any problems until I was in my 20s??? I asked my Cardiologist that question, and he said that he still doesn't know the answer to it. Some people live their entire lives with ASD/PFO and are just fine... and others present life threatening symptoms. I read somewhere that ASD/PFO can get worse with time/age... but I don't know if this is true or not. It sounds like they are still researching what makes it suddenly act up and why it's different person to person.

Let me know what your doctor said!! Glad to hear your MRI was clear too! That is definitely a GOOD sign for you, but yes, TIA's don't always show up on MRIs. My Cardiologist had a major, disabling stroke and it didn't show up on an MRI... so, I guess that also varies.

Dingy... Good luck!! Hope all goes well with your treatments. Do you have a blood disorder that causes clotting? I am wondering why/how this happened to you!!

Hi....

I am not certain, but I think I remember reading through these posts about someone who was first denied by CIGNA and who later was covered.... It may have been somewhere else, but I am pretty sure it was this forum. Read back through ALL of the prior entries, not just on this forum, but on the other prior to this one... this is the third forum started on this same subject because the others were too full... I hope you don't waste your time and find nothing, but it really seems like there was a similiar story. I'll start looking too to see I can find it! How absurd you have to go through this!!! I am so SORRY! I will try to find some info for you!!!

Hello CatMom5 how are you doing?........ I haven't been told why it has happend only that it is in my heart chamber and that it is a large blood clot. You know I think it happend because I was only on Plavix for a month after the procedure and asprin for 3 months after procedure. about a month after Ithe asprin being stopped I started with headaches then began to get funny vision, then as you may have read in march my balance went. This was on a Saturday I thought it was just another bad do so I left it until the monday and went to my doctors she refered me to the stroke specialist and said I should be seen within a week. On the Tuesday I had a follow up appointment with my heart specialist and told him what had happend and he said he would like to do another TOE. This was all about March 20th. It was nearly 3 weeks before I finally got to see the stroke specialist I had a CAT scan that day and it showed up nothing unusual  he said he wanted to do an MRI scan. about 2 weeks later the MRI people wrote to me and said that they were waiting to hear if my device was MRI safe as they would not do an MRI without official confermation. I think it was another 2 or 3 weeks before that was confirmed that it was safe but they must have decided to forget the MRI because I finally had the TOE 6th June and that is when they found the large clot! I knew I was ill, my blood pressure was all over the place my it would go up and down, I just felt and still do feel so ill.

The warafin should disolve the clot I have no idea how long it takes to go. I know it is still there because of how I feel. I have been told I shouldn't get any more clots because I am on warafin for life now....... whoopppeee!!!!!

The saddest thing for me is all of you that know me is my horse riding, because of the warafin I have been advised against riding because if I fall I could have a internal bleed. But I have found a way I can still ride and that is by only walking and riding when there is always someone else with me.     

Hi Dinby, I am so sorry to hear about the warfarin and not being able to ride horses...  I think it would be the equivalent of someone telling me I can't run anymore.  Any chance that one day you can be off warfarin and maybe just take a daily aspirin?

I have about 75% of my life back, and I hope to get the other 25% back soon!  I am running again, not as fast or as long as I used to of course, but I am just building my endurance again and this takes time and patience... trying times remind us of the great value of patience.  This past week I started out with a run on the hot, Miami beach on Sunday and then I continued on with my life as if it was back to normal, but by Thursday afternoon I was feeling a little tired, as if maybe I overdid it a bit.  Of course, my "normal" is really super high energy, so I think I still need to take it down a notch for now.  But, soon, I know I'll be out running long distances again. 

It is so great that so many of us still help each other.  This is also what I love most about this forum.

Luvadog, I also remember seeing some posts on CIGNA on either thread #1 or #2.  Follow the link from climbing4life and see where that takes you.  Sorry I don't have time to look for you.  I remember reading all those threads as I was recovering.  Good luck in finding someone who has had CIGNA approve their procedure and I'm glad you have joined the Facebook group.

Climbing4life, Plavix used to make me feel tired and foggy brained (this could have also been from recovering from the procedure).  After 3 1/2 months, the day I had my echo which confirmed the hole had closed, the cardio said I could stop taking Plavix right away.  So, I just stopped cold turkey and had no problems.  I felt better after I stopped taking it, so I think it did have a lot to do with making me feel tired while I was on it.  I do have to  take a baby aspirin for the rest of my life to prevent any clotting and you may want to ask your cardio about doing this.

I wish everyone a speedy, successful recovery and a wonderful life!

Greenhope

Hi dinby,

Yes, once the clot has gone I would definitely ask if there is a less limiting option than warfarin, especially because you lead an active lifestyle.  I remember when my awesome cardio was discussing possibilities with me, one of the things we immediately ruled out was being placed on warfarin or coumadin because they are very limiting and I mentioned to him that I was very physically active.

I actually had not gotten on a treadmill since June of last year when I was just too tired to do any type of exercise.  I finally got on one again at the end of May of this year and it felt wonderful!  My long term goal is to be able to run marathons again, but if that does not work out, at least to be able to run regularly again without feeling exhausted.  I have been running regularly for 25 years so for me not being able to run at all for a year was devastating... but I survived!  I do feel my energy and stamina coming back, but I am still not pushing myself hard at all.  I was at the beginning stages of heart failure by the time they performed the procedure on me (thanks to my inter-atrial shunt which means the blood was flowing in both directions through the PFO), so the recovery for me was much slower.  But, I already feel my heart getting stronger again, handling longer distances and the heat much better! 

Please keep us posted on your status regarding your blood clot and warfarin. 

My best to you and everyone on this forum,

Greenhope

Im so glad I found this site. I also am in Utah. Here is my story. 10 yrs ago I was having problems numbness in arms and legs, sometimes I would get up and have no feeling from waist down. Went through alot of test for MS and they found that my body didnt do the B-12 process and that I had almost depleted mine to the point that it had created damage on the coating around my nerves, this also caused me to have pernicious anemia, shortness of breath. So I started taking shots every two weeks for that. Well since then I have had several attacks of numbness, I am in a perpetual state of shortness of breath. They treat me for asthma but it never helps. Well May 16th was my birthday, super busy had a big party. The next day I woke up was very tired but about half ways through the day I lost the use of my right leg. I could only drag it around. I thought these were just symptoms of my past history. I forgot to mention I have also had Bells Palsy which paralyzed half my face a few years ago, have recovered from that. So for about three days I drug my leg around, on the 4th I started having sharp pains in my upper inner thigh I all of a sudden thought what if this was a blood clot. So I drug myself to the hospital after hearing my history (my mom has MS) they just took an ultrasound of my leg and told me to see a neurologist. I went to the same one I had seen before. He ordered several test. One being the echo w/bubble. While doing the echo I saw my heart chamber fill up with lots of bubbles so they sent me right away to have the other test I think it was a transcranial ultrasound did the bubble test and heard lots of bubbles...does that make me a technical air head..lol... The heart doctor that did the test started telling me about the procedure to close it. So now I am thinking that maybe all these problems werent ms one but little strokes. I just know that am so tired all the time. Lately I had been having trouble spelling, I would look back at something I wrote and the letters would also be all confused...I had been blaming all on getting older but Im only 44...still waiting for the results from my MRI's.
so just wondering what others think. Thanks for the input.

I live up North in Clinton. The Doctor that gave me the test reccomended a Doctor in SLC for the procedure if I had it. Im thinking that was the name. It will be interesting to see what they say. I dont go to Neurologist until July 12

Dinby -
I have arabians and have been riding for 20 yrs now. I do everything from western, to hunt seat, and saddle seat. Right now I have a western and country english horse. The western was much easier for me since it didn't involve posting. I had some blood clots in my lungs in addition to my pfo so I think that caused my breathing to be worse. about a month after the surgery I went to a show w/ my english horse and still got pretty out of breath in the class but it was much better than the month pre surgery. I think the blood thinners have really help with the blood clots which was causing my shortness of breath. I'm going to show this weekend and hopefully my breathing will be better still. I don't notice it as bad just riding at home but the shows seem to be more taxing on me b/c I'm riding for longer periods. I talked to my dr about riding and he basically just said to be careful. I'm not sure how long I'll be on the blood thinners - originally said 3-6 months and my 3 month check up is in August. Luckily my husband is a horse trainer so he understands my "passion".

I am so glad to have found this site. I am finding there are others with the same symptoms as I have had. That helps me so much. I really appreciate being able to learn how this effects others and how they are dealing with it.

I too, had a closure April 30, 2009, by Sherman Sorensen in Utah. I am regaining strength again but I still have horrible headaches and blurred vision a lot. I was taking Zonisimide, prescribed by a neurologist to help with migraines, but I quit taking it to see if it that was effecting my vision, but I am still having problems. I am just wondering if anyone else has had these problems after a closure.

Oh, I read where someone mentioned they would spell words and the letters would be mixed up. I do the same thing! I also SAY words with the letters mixed up. I had a very difficult time with concentrating too. I find it difficult to function some days. I is so frustrating and I hope it changes with time.

Hi Dinby,

I'm so sorry that your on warfarin for life! I really hope that once your clot has dissolved that maybe they can find something else that will help and still allow you to ride the way you want.

Thanks for asking about how I'm feeling. I was feeling great even though I still have the leak. Once I went off of the Plavix I gained all of my energy back and have been stripping wallpaper and painting like a mad man. Right now though, not so good. I got a bad migraine today, the first one in 14 months since my closure. I'm really worried as to what that means. Is my leak getting larger? I'm scared to death that I might have another stroke.

CatMom5 I would not take any chances and mention it to your doctor because you still have a leak it I would air on caution It more than likely is a one off but just to be sure. ...... do you still have palpitations?  I was just wondering because of you still having a small leak. Good to hear from you again 

I have been reading the ASD closure and i had a 33mm ASD I have also noticed since closure that my eye sight is not so good and also that I cannot remember things but maybe this could be the TIA?