HealingWell
Search Close Search
☰

PFO Closure - Open Heart or Transcatheter

Support Forums
>
Heart & Cardiovascular Disease
✚ New Topic locked
1 2 3 4 5 67
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/11/2008 7:40 PM (GMT 0)
Hello Everyone,

I've been reading your discussions ever since I had my stroke on Dec 18. I didn't know what happened or what caused it at that point and was pretty sure I was dying soon. Thank God for medical advancement. After being in the hospital for a couple days, I regained my left arm and my mouth and couldn't be happier. Until they did the TEE, we weren't sure what caused the stroke and in a way was relieved to find that there was a cause for the stroke and it didn't just happen. Anyways, so they found the PFO and I went in and got it closed on Jan 29. Suddenly on Feb 5, I had a terrible heartburn where it felt like someone is trying to light a fire from within and every time I tried to belch it hurt me more. I tried calling the doc and the nurse asked me to take some Tums or Mylanta and said I'd feel better. I took it to find out it was making me belch more which would make me hurt more. Finally, went to sleep with alot of pain - due to the heartburn which made me feel like I was going to have a heart attack. The next day, I woke up all fatigued and rashed and my bones were aching within my hand and feet... it was a terrible feeling. The pain continued for a couple days and moved around my body, didn't stay in one place. One day I couldnt bend my thumb and the next day I couldn't move my fingers and finally Friday night I couldn't lift my arms. I went in to see the Cardio on Thursday who said this could be a reaction to the Plavix. I've been off of Plavix since Friday and felt much better since Sunday. I'm not sure what caused all that discomfort but if it was the Plavix - I think others out there might be interested in knowing. I walked quite a bit yesterday and did feel the chest pain. I do feel it even when I'm leaning forward for an extended period so I try to relax myself whenever the pain rises. I don't feel a 100% and am wondering if it gets better after the 3-month mark like most people are saying?? It's just so uncomfortable and I want to feel 100% again.

On a positive note, I'm so happy to have found this place to talk about what we're experiencing and to learn from eachother coz' it seems like the docs do this so quickly that they don't realise the pain we go thru after the procedure. It's not as simple as they think it is.

I look forward to reading more from all of you.

 

Posted 2/12/2008 6:22 PM (GMT 0)
Hi Everyone,

I didn't have a stroke ( I don't think!) but I did have Lyme Disease and and rather large Artial Septal Defect. 18 mm big. Both took FOREVER
to Diagnose. I had/have all sorts of neurological issues... I had CT scans, MRI, Echo, EEG, TEE...

When I was finally diagnosed with the ASD I was given the choice of the implant closure device or the open heart surgery.
This might sound insane but I actually chose the surgery. This is because the device has only been around for 5 years in the US and 10 in Europe.
They really can't say for certain what the outcome will be in 20 30, or 50 years.Will they need to replace them? Will they cause different problems? The risks for both are extremely low, as my surgeon put it, " it is more dangerous for you to walk across Broadway than for me to operate on your heart." My doctor explained that any complications with open heart surgery will occur right there in the operating room, so basically they can fix whatever the problem. The device has a tiny tiny chance of rupturing the tissue around it which would cause instant death. Now, saying that, this just about never happens. I am a complete paranoid freak and I couldn't stand the thought of having something foreign in my heart ( especially something that big!) and that minute possibility of rupture freaked me out even more. But that was my choice and I understand others not wanting their chest cracked open. It hurts! All in all, the lyme disease has proved to be WAYYYYY worse than the open heart surgery. The doctors are pretty good at this stuff now.

I will highly recommend NY Presbyterian hospital congenital heart disease center ( Dr. Marlon Rosenbaum). He is the most amazing doc I have ever had.

Hope this helps!
Posted 2/12/2008 6:40 PM (GMT 0)
I don't know if it's the size of your patch as much as how it rubs on your heart muscles, ya' know? My hole was 1"- so I have a pretty big one, too. Still, to this day- if I don't take my medicine, I am feeling it. I agree with GreenT603a7, these things are fairly new. But I am sooo thankful for them! I am sure we'll all be writing on here 10 years from now comparing who set off a metal detector at the airport and who didn't!!! HA HA HA!!!
Hey- Happy HeartDay everyone!!!!
Posted 2/12/2008 6:46 PM (GMT 0)
VIN2000- I have met VERY FEW people that have felt 100% (like all the docs claim) at the three month mark. The hope you have is that YOU ARE NOT ALONE! Most of us- from reviewing the posts- are dealing with close to the same thing. Half the part of healing for me was knowing I wasn't going crazy!!
Ekk, about the Plavix! I hope that was the answer.
There is much to be thankful for!!! Have you recovered from your stroke?
Keep us updated!! Many prayers are going out to you all!!!
Posted 2/13/2008 8:37 PM (GMT 0)
Oh yeah, my reaction to the Plavix was very bad - I was bleeding internally under the skin. Not a good site.

I'm glad I'm over it. I'm very happy to say that I have recovered from the stroke too and it's all thanks to my well wishers and my husband being by my side at all times!

So those of you who've done the PFO closure... do you still feel like a sharp pang every now and again?

I've noticed I feel it more when I'm working on my desk for a little while and leaning forward. Or, sometimes when I'm doing something.

Have you felt any discomfort when drinking sodas? Do you think the eating habits might have something to do with the discomfort?

Any feedback is appreciated and helpful.

 

Posted 2/14/2008 2:16 PM (GMT 0)
Yep. I am on beta-blockers for those pains. My doc explained to me that it's the patch rubbing on your heart wall. The medicine helps a ton!!!

Supportive hubbies are WONDERFUL aren't they?!?!
Posted 2/19/2008 12:58 AM (GMT 0)
Hello, everyone!

I am doing better.  I actually got on the treadmill for the first time, today.  30 minutes!!!  And, the best news is, I didn't die.  To be honest, I seriously thought I would.  What a phobia I have had.  One of my five children kept harassing me to get on it.  She is 11 and quite bossy.  So, I did it.  And, here I am writing to you.

I am on the beta-blockers and haven't had near as many problems.  The chest pains were horrible.  The leaning forward thing still gets me.  I did think my heart would beat out of my chest before the beta-blockers.  I am on Toprol XL.

Welcome to all the new members.  Isn't it amazing that we don't have to do this by ourselves.  What a blessing this has been!

I go back to the hospital the first of March for my follow-up TEE.  I am not looking forward to it.  My husband is taking me to London for my birthday in May.  So, he is encouraging me to get well so that I can enjoy it.

I have days that I pretend I am not sick with this device in my heart and other days when I know things aren't right.  I can't wait to find out how the little guy is doing but I wish they could see it without doing the TEE.

The fact that Ted Bruschi can play in the Super Bowl (even though he lost :( ) with one is encouraging!  My kids thought that was pretty cool!

Did any of you get your snow?  We have had more than our fair share here in Chicago! 

Thinking of you all and wishing wellness your way, Patched.

 

Posted 2/19/2008 3:27 AM (GMT 0)

Patched-

OOOHHHHH!!! You go!! London!?!? How fabu! You have to get feeling better now so that you can live it up with your hubby for your birthday and celebrate it in style- ALIVE!!

Good to hear from you! Isn't the Toperal XL just wonderful?!! Whatta huge difference it made with me as well!

Take care and keep up the great work-

Many Blessings!!!
Mamanuss

Posted 2/20/2008 11:00 PM (GMT 0)
Hi folks,

Well, here goes nuttin...this is my first post. I am a 51-year old female in otherwise excellent health and have just been diagnosed with a PFO after months of dizzyness, fatigue and (most recently) chest pain. Despite my symptoms, I am not a candidate yet for PFO closure because I have not (yet) had a stroke/TIA. I feel very strongly that given my symptoms, I am well on my way to getting one. I have extreme shortness of breath and my quality of life has been severely compromised. I do suffer from migraines with aura, but in order to qualify for the clinical trial at Washington Hospital Center involving PFO closure and migraines I need to have failed two migraine preventative medications.

So...I have just been placed on a Beta-blocker, Lipitor and 325 mg aspirin/day. Sound familiar? I sure appreciate what you guys have all been through and have been saddened but strangely comforted by your shared stories.

I have two questions: first, can anyone explain to me what an aneurysm is, which was found along with the PFO during the TEE? And what relationship/significance does that have to the PFO? Second, what do you do about the chest pain? It is very strong upon exertion, sometimes excruciating just when I get up and walk around. My cardios have tended to minimize it, since it is not constant and I passed the EKG, stress tests and chest CAT scans fine. It gets better when I rest/stay quiet/seated.

Before this happened, I was a very serious amateur competitor in equestrian events...have won 2 national and 1 international championship. Now, I don't know whether I can make it to the mailbox on any given day..,.can you relate?

Any and all assistance and sharing of experiences is most appreciated. God Bless you all,

Skaredycat
Posted 2/21/2008 12:59 AM (GMT 0)
Skaredycat-
Were you diagnosed with an aneurysm with your TEE? Since I have had a stroke, I never understand why they don't close those things up as soon as they see 'em. What beta-blocker are you on? I had to try a couple different ones before I found one that really worked for me. I am a mother of four between the ages of 8 and 1 and needed to stay quick on my feet. Extended release medicines seem to make the biggest difference.

I am assuming that your doc knows all the trouble you are having- thus the beta-blockers. I am all about trusting my doc- but maybe a second opinion is necessary. That is NO way to live.

Hang in there... your story will encourage and lift up others. God is pretty good about doing that kind of stuff, ya' know?!?
Posted 2/21/2008 1:25 AM (GMT 0)
HI Mamanuss,

Thanks for your reply. Yes, aneurysm diagnosed with the TEE last week. I don't understand if the aneurysm is part of the PFO, or something different (?) Basically my understanding is that they don't close PFOs unless a stroke has been documented because 1/insurance companies won't pay for it since 2/the closure device has only received experimental approval from the FDA. As always, it is all about money.

The Beta Blocker I am on is propanolol or Indural...not sure if I am spelling it correctly but it is often used to treat migraines. I have only been on it a week. No real changes noted except for extreme fatigue, which I had before the PFO diagnosis.

How long ago was your PFO closure done? Did the Beta Blockers you tried make you tired? Which one works for you?

Thank you again for your courtesy in replying.
Posted 2/21/2008 12:47 PM (GMT 0)
Sorry for the delay in posting. Welcome to all the new people! Thank you to the person who posted about her ASD closure and Lyme.

Mark's surgery went really well. They ended up going through the sternum but with a smaller opening to minimize the scar. The other less invasive procedures were not really an option due to his age and size. The surgeon said that the size of the hole was such that he would not have been a successful candidate for the cath and devise. That was kind of good to hear that we did not put Mark through the surgery vs the cath for nothing.

Unfortunately, his recovery for the past few weeks has been a bumpy. He developed a pericardial effusion in the hospital. They said it was
a moderate amount of fluid. He was discharged on day 5 anyway. He was ready to get out of there! His follow up appointment with a local cardiologist five days later showed that the fluid had increased. He had twice weekly echos for a while. They were talking of possibly tapping the fluid off of his heart if the heart showed any distress from the accumulating fluid. He was to stay on Naprosyn twice a day for the inflammation. His last echo showed that the fluid has started to decrease. He is to have another echo next Tuesday.

He was running a fever ever since the surgery but not high enough for any one to put him on a antibiotic. His appetite was still fairly poor the second week post op, but once he started eating full pieces of toast I restarted his digestive enzyme that he had been using for year. Within 10 minutes he was informing me that his lips were swelling. I gave him 50mg of Benadryl and took him to the ER. Thankfully the Benadryl was working although the physician said his uvula was hanging down to his belly button. He ended up on an antihistamine for a week to keep the reaction down. He was not thrilled because he was already feeling tired.

Lastly, while he was napping on the couch I noticed a odd breathing pattern. He would take 5 breaths and then stop breathing for 8-15 seconds then take 5 more breaths and stop breathing again. He was like this the whole 30 minutes that he was napping. I spoke with the cardiologist and he said this is not heart related but that it could affect his heart. So we are in the process of getting him into our new PCP to get a referral to a pulmonologist.

He is now 25 days post op and he is very tired. I believe it is because of the sleep apnea. Because he is so tired he is moving very little. And his appetite is still really poor. The fever has stopped but he is experiencing sweats, especially on his back and then chills from his shirt getting wet.
I believe that what we are seeing is a chemical sensitivity to the anesthesia. His body is trying to get rid of the toxin. I have a friend that has MCS and she experienced chills and sweats after her hip surgery. She also reported that her allergies were more sensitive for a year after her surgery.

The good news is that his headaches have stopped. He was having at least three a week prior to closure. And he is reporting clearer thinking, so his cognitive abilities have improved. But he has a long way to go. And he is getting impatient and grumpy with this process.

That is my report. I look forward to the day I can update and have good news. But for him right now, the bumpy road continues. We are glad the ASD was found. And glad that the surgery is behind him. Boston Children's was pretty good except for the "pain team" was a joke. It will be interesting to see in time what Lyme symptoms he has left that were actually from his ASD.

Thanks to all for praying. If you could continue to I would be grateful.

Best,
Karen
Posted 2/21/2008 10:52 PM (GMT 0)
I will keep Mark in my prayers, Karen. God Bless and may he have a complete recovery.
Posted 2/21/2008 11:32 PM (GMT 0)
Thank you, Skaredycat. I read your first post. I strongly feel that if this was me or my loved one, I would be seeking a second opinion. Your quality of life warrants it. I had a friend have an ASD closed and she did not have a stroke or TIA first. If you do not have the energy to be a squeaky wheel about this, then do you have a friend or relative that could be your advocate?

An aneurysm is a weakness or ballooning in an artery wall. This is not something you would want to wait on. I don't want to panic you. But I also don't want you to be satisfied with what you have been told so far. I would encourage you to seek a second opinion to get this taken care of.

Please keep us posted on how you are doing.

Best,
Karen
Posted 2/22/2008 10:21 PM (GMT 0)
Thank you Karen! I will do that.
Posted 2/22/2008 10:29 PM (GMT 0)
BTW Karen,where did your friend have her procedure done and how old is she (if you don't mind my asking)...

Thanks!
Posted 2/23/2008 1:54 AM (GMT 0)
She is approximately 50-55 yrs. old. And she had it done in Scottsdale, Arizona.

Hope that helps.

Best,
Kaern
Posted 2/23/2008 3:09 PM (GMT 0)
Thank you Karen. Yes this is very helpful!

As you are probably aware, the FDA withdrew its experimental approval of the Amplatzer Occluder device, as well as the other devices used to close PFOs, last year. As a result, those who would potentially benefit from the device can now only get it implanted if they are participating in an ongoing clinical trial.

I am trying to qualify for one of two clinical trials currently underway at a Washington D.C. hospital. One is only for those who have suffered a stroke; the other is for migraine patients. As I have long suffered from migraines, this is the one I hope to participate in. The protocol requires patients to suffer from 4 to 14 migraines per month and to have failed two migraine-preventive medications. I have just been started on my first medication, a beta-blocker called Indurol. Next they will probably try Topamax.

So this is my goal. I hope you and your family are doing well. I cannot tell you how grateful I am to be able to communicate with others online about this health issue...it is very scary to think I could drop dead at any time of a stroke!

BTW, are you the horsewoman who I saw posted earlier? I am a longtime equestrian who owns 4 equines...rode H/J and dressage for many years and have now switched to Paso Finos. Love those quick-stepping, fiery little horses! I am even thinking about a quick ride today because I am feeling a little better...we'll see how it goes!

All best, Skaredycat
Posted 2/24/2008 2:05 AM (GMT 0)
Skaredycat & Karen-
So... what is the deal with your first sentence above? I have the Amplatzer implanted November of '06. Why the change in protocol for all of this- should I be concerned?

On a side note- I am on Topamax for the side effects from my stroke. The side effects from the Topamax are weird- but hang with it- it really pays off in the long run!!
To answer your question about my beta-blocker... I am on Toperal XL. It has helped tremendously!! Keep us posted!!

Thanks, guys!!!
Many Blessings!!!!
Mamanuss
Posted 2/25/2008 9:12 PM (GMT 0)
HI Mamanuss,

Rest assured there is no reason for concern. Quite the reverse, in fact-- you are one of the lucky ones who was able to get the Amplatzer device implanted before the FDA yanked its approval.

The FDA withdrew approval of these devices because doctors were implanting them in too many patients, thus exceeding the 4,000 patient-per-year limit that is allowed for any Humanitarian-approved drug or device. Such experimental devices are approved for use under the category of "orphan drugs," meaning that they are expected to benefit a small number of patients who have the condition the drug or device is designed to repair or heal. There was a sudden spike in the number of stroke-victims who were being implanted with the device -- I believe I read that it was 50-fold -- so the FDA had to pull its approval. More info can be found on this on the FDA's website at http://www.fda.gov/cdrh/ode/h000007-h990011withdraw.html

It sounds crazy and like bureaucracy out of control, but the standards are different for Humanitarian drug exemptions, which must only be shown to be safe, and regular drug or device approvals, which must be shown to be both safe AND effective. Hence, additional studies must be done in order for the devices to now gain approval for use in the general population. Doctors have to prove that the devices prevent future strokes from occurring, and they don't have enough data to show that yet but probably will sooner or later.

I am hoping to qualify for one of the clinical trials, as I stated previously, because I am a walking candidate for a stroke: I have both a PFO with right to left shunting AND an atrial septal aneurysm, which spell S-T-R-O-K-E waiting to happen. I am just praying I get a shot at getting the problem fixed before the stroke hits.

Blessings back to you,

Skaredycat
Posted 2/25/2008 10:06 PM (GMT 0)

Thank you so much for educating me on that. How weird. I will certainly be praying that you will enter into this trial. When will you know? Is there one close to where you live?

Thank you, again, for your insight and what an encouragement you are to stay the course!

Keep up the great work!!

Many Blessings!

Mamanuss

Posted 2/26/2008 6:01 PM (GMT 0)
Thanks for posting, thisoldman!

Hope you are feeling better. Please let us know how you are feeling post-procedure. Also, would you be willing to share your doc's name and phone number? Philadelphia is only an hour away from here so if I could get the treatment there I would go in a "heartbeat" (sorry...couldn't help myself).

Thank you again for sharing your experience with us. Let us hear from you again please!
Posted 2/27/2008 10:07 PM (GMT 0)
Thanks Thisoldman....please do the same! Yes I have found that the importance of getting lots of rest can't be overstated. And thanks for the number for your doc. I will hang on to it for now for possible future use. It sounds like he did the right thing for you in the long term.

Yesterday my cardiologist referred me to a pediatric cardiologist who he maintains is the top PFO-closure guy in the D.C. area. It makes sense that pediatric cards would be very experienced at this since they have to operate on little kids and babies who are both lucky and unlucky enough to have their PFOs discovered early in life. My cardiologist said this guy may be able to make a case for closing my PFO because it is, after all, a congenital heart defect, regardless of my age (51)! So I will have fun playing with the foam blocks and puppets in his waiting room prior to my appointment next month (smile)

Because I am a person who is driven by a thirst for knowledge, I asked my cardiologist why some docs are continuing to implant the device after the FDA has withdrawn its approval. He looked at me hard and said, "If you find a PFO that is large, you have to close it. You have no choice."

I liked his answer and found it reassuring that some docs are just going ahead and having the courage to do the right thing.

Keep doing well with your recovery and try not to push yourself too hard. You will get where you need to be if you have patience.

Bless your heart and those of everyone on this forum...

Skaredycat
Posted 3/1/2008 12:11 AM (GMT 0)
GreenT603a7,
I don't know if you are still reading the boards, but I too am following the surgical route to close the hole. We know I have a very patent foramen ovale that swings wildly with high degrees of right to left shunting. I've had 2 small TIA's (I'm 41). runner and cyclist in otherwise good health. I may also have an ASD too. I did a lot of research, talked to various doctors and have decided I don't like how the devices have been introduced, how the manufacturers are now protected against lawsuits, nor do i like the idea of a metal/polyester device inside my heart. we were not sure if it would even work in my case, so i decided to just do the hard thing first and not have to worry about someone going in there in 20 years to dig the thing out. NOT saying it's the wrong approach, to have the device. everyone is different and i decided to go the more traditional route.
Have you had your surgery yet GreenT603a7? I am wondering how you are doing?
Posted 3/3/2008 6:04 PM (GMT 0)
Hi Skaredycat. I am still waiting for closure, i have not had TIAs i have a ASD that is facing my lung and that is where the concern is. As far as i know in England they are not stopping closures. Although i haven't had strokes i am high risk for my lungs decompressing and my heart enlarging. I like you have horses, although i do not ride as often or ride on my own due to palpitations that become so strong i get light headed
By the way can someone tell me what a TEE is? Is it an Angiogram? I was going to ask that ages ago, but i assumed it ws an angiogram
Thanks x
✚ New Topic locked
1234567