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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

Complications After PFO Device Closure Surgery?

Hi everyone! My name is Katherine. I'm 33 years old and live in Sacramento, CA. Last spring I had a 15mm PFO closed (in March 2014) with the transcatheter procedure using the Gore Helex 25mm device. I'm looking to hear others experiences after PFO closure because I am having post surgical complications that did not occur prior to surgery that are very distressing and I'm curious how common this is?

Prior to surgery I got extremely short of breath and tachycardia during exercise/exertion only, never during rest. Post surgery I have constant shortness of breath even at rest, intermittent chest pressure/pain like a chicken bone stuck (never occurred before surgery) and almost daily migraine auras that blind me for approx. 20 mins when they happen with no pain just visual disturbances (never had visual auras before surgery). All these symptoms started 2 days after the surgery and has been consistent every day for 11 months straight thus far. It's been awful and I'm at my wits end dealing with this. I'm curious if anyone else has had a similar experience of feeling like crap with weird symptoms directly after having their PFO closed via transcatheter surgery using a device?

I've seen my interventional cardiologist who did my surgery along with a second cardiologist for a second opinion and both have no answers as to why I'm having symptoms. Echos show nothing, bubble studies show nothing. Neither has sent me for a TEE since surgery 11 months so I don't know if that would yield answers. Both say they've never seen my constant shortness of breath, chest pains and migraine auras after device placement. I've seen a great pulmonologist who has sent me for every pulmonology test under the sun to rule out lung issues and it shows my lungs are structurally clear and working great, that my oxygen saturation is great and I should not feel short of breath, and yet I do. All my docs are stumped.

I've done tons of research online about complications after PFO device closure and found some interesting stuff. Currently I'm pushing to be evaluated to see if my previously known nickel allergy is to blame. I cannot wear cheap earrings because they make my ears itch, swell, burn, hurt, etc. and cheap non-gold rings leave sores on my fingers. I get bad inflammation from cheap nickel jewelry. There's a lot of research out there talking about the complications of nickel allergy presentations after PFO closure with a percutaneous transcatheter device because most are made with Nitinol (55% Nickel and 45% Titanium mixture) which include chest pains/"chicken bone feeling", constant shortness of breath/dyspnea, migraines with auras that never occurred before surgery, along with a host of other problems. Seems to fit my situation but because I have the Gore Helex device my cardiologist is adamant he's never heard of it being an issue with that specific device since it has some kind of Teflon coating on the metal on the device to hide the metal from my immune system so there should be no allergic reaction.

All I know is It's been 11 months since the PFO surgery and I am not getting better -- I'm still having constant shortness of breath, still have constant chest pressure/pains, still have daily migraine auras. I'm at the point where enough is enough. I'm trying to stay patient between doctor appointments but I feel like I just want to yell at my doctors to hurry up and figure it out! I was told I was supposed to feel better after surgery, but that didn't happen for me. I actually feel worse.

If you've had post surgical complications after your PFO device placement, please tell me your experience. I feel alone in this because everything I've read in patient forums is about how great people feel afterwards, and it would really help to know I'm not alone. Thanks for reading!

~ Katherine

Just read your post again. The surgeon who put mine in said just say the word and I'll take it out and close it by heart surgery. Have you discussed this with your doctor? I know no one wants heart surgery but it was given to me as an option. My mother had hers closed this way and did great! The adult closures are relatively new. I believe less than ten years or so. Also, I can relate to the young child issue. Mine was closed in 2012 and my son was four. I could not even get off the couch. I did nothing extra at all and barely kept up with my job. I hope that you will find some answers because I completely understand the guilty mom feeling. Your mind wants to do what your body won't let you! I'm here if you need me.

I had my surgery 9/2013 - since then I have had sore chest, shortness of breath and fatigue. I have seen 5 cardiologists and had mri, X-ray , ekg,
And more. I keep getting reports that my tests are clear and perhaps I am depressed?
Like you I am almost worse now this I was before surgery. I had my ASD FIXED at age 41.
I spent a few months looking at the nickel allergy but my docs dismissed that as well.

Stace which doc offered to replace your device? I am starting to wish I had a traditional surgery instead of my amplatzer ocvluder.

So nice to know I am not the only one still miserable!! Would love some advice if you have it!!
Hope we get the right help soon,
Jennifer

Hi Jennifer,

It seems I'm in a similar boat as you with doctor skepticism leading to continued suffering. And I too now wish I would have looked into minimally invasive robotically assisted open heart surgery for ASD repair instead of having this device placed in my heart. I unfortunately didn't know of other options and my cardiologist didn't tell me there was minimally invasive heart surgery as an option. My interventional cardiologist who did my surgery was great up through my surgery, even fought my insurance company when they denied my surgery coverage. He was super supportive, until I had complications after surgery. Then he literally blew me off. I complained about my increasing difficulty breathing, pain, etc. after surgery and he dismissed me saying I was an abnormal case and he couldn't help me since all of his other patients did well after surgery and he had no answers. He never offered to remove the device, to look into the possibility of a complication from surgery, nothing. April 2014 was the last time I spoke to him via telephone explaining that I couldn't breathe as well as I could before surgery and that I actually felt worse, that I had chest pains that were new and these constant visual auras. I asked him if it could be due to the Nitinol (nickel & titanium) in the device and he said no that no one has a nickel/titanium complication from an ASD/PFO device; he said he couldn't help me further, actually said "good luck" and hung up on me! Well aside from him being a cruel and dismissive asshole, his information regarding nickel/titanium allergy complications with occluder devices is absolutely wrong according to MANY studies I've found online from the National Institutes of Health and abroad about nickel allergy, occluders and symptom presentation.

So now after all these months of suffering I'm basically hell bent on getting tested for a nickel/titanium allergy to see if I feel like crap from the Nitinol in the device. I switched cardiologists and the new guy I'm seeing also poo-pooed my complaint. He wasn't a jerk about it, but he said he had done some huge number of these transcatheter closure surgeries and had never come across a nickel/titanium allergy, so I'm fairly certain he is going to be of no help to track down the possible nickel allergy.

Luckily though I discovered I don't need my cardiologist to do the nickel testing. I'm looking to have the newer more comprehensive blood test done called the "MELISA" test to assess nickel allergy rather than having a skin patch test or having the device taped to my skin. . "MELISA" stands for: Memory Lymphocyte Immunostimulation Assay.The MELISA blood test is a hypersensitivity test that looks at your blood to see if there's a hypersensitivity to nickel when your blood is exposed to it; plus it also shows if you're currently having an immune reaction to the nickel via your white blood cells. The test basically shows whether your body treats nickel as a foreign pathogen when exposed to it, causing it to become inflamed and attack it.

If you're interested in getting a blood test to check for nickel hypersensitivity to diagnose/rule out a nickel allergy to your occluder device I found a really easy way to have it done that doesn't require your cardiologist to be involved if you don't want them to be due to difficulty convincing them. I'm excited! I can get tested without some doctor saying he thinks it's unnecessary -- it's my body and damnit I think it's necessary to get tested so I'm gonna make it happen!

The MELISA metal hypersensitivity test was invented by the MELISA organization, an international non-profit organization that's affiliated with tons of labs all over the US. They specialize in metal hypersensitivity testing and talk about the difference between an allergic reaction and a toxic reaction to certain metals on their website. If you want to check it out it's really interesting: http://www.melisa.org/about-us/history-of-the-melisa-test/.

Anywho, if you're interested in getting a MELISA Metal Hypersensitivity test done, all you have to do is schedule an appointment with a doctor in your area who does the MELISA testing. At first I thought it would be difficult to find one, but actually it turned out to be really easy to find one! The MELISA organization has their US hub in Wisconsin (no idea why it's there) and is run by NeuroScience, a big lab testing organization in the US that tests for all kinds of things and has locations everywhere.

So I went onto the NeuroScience website and there is a link for patients to click on and request a list of doctors in their city who do the MELISA metal hypersensitivity testing. Here's the doctor referral request page if you wish to find a doctor in your area who does the MELISA metal hypersensitivity testing: https://www.neurorelief.com/index.php?p=find_physician

I used the online doctor request form and requested all doctors in Sacramento that do MELISA testing. I filled out the online form late last week and it took them about two days to get back to me by email with a list of doctors in my area that do the testing. It was impressive how quick they responded. So I'm picking a doctor off the list this week and making an appointment to get this MELISA metal hypersensitivity test done. Then once and for all I can know if I'm having a bad reaction to the nickel/titanium in the device. If I am allergic, I'm taking that test to my cardiologist and saying "SEE I TOLD YOU SO!" and then I'm going to find a surgeon to take the damn thing out of my heart. And if it turns out not to be a nickel allergy then at least I'll know and can stop wondering.

I just want to feel better and I'm so over feeling this way. And I'm tired of doctors dismissing me and my questions about hunting down the cause -- having a nickel allergy test done is simple and I don't know why my doctors have been so unwilling to do it? It's not like it costs them anything or is a burden on them to have it done. I don't get it? But either way, I'm over it and am getting this damn test done on my own. I think it's a couple hundred bucks, but frankly I think it's worth the expense. I'd rather be broke for a bit or charge up my credit card and have this test done than to continue feeling crappy without answers.

I think I'll repost this on the main discussion board in case anyone else is looking for info on how to get tested for nickel allergy after their surgery because their doctor won't do it for them.

Onward and upward!

Hi Katherine- thanks for the nickel test information I will get that test too!
I saw an allergist and had a patch test but that was negative . My docs say that since my surgery was over 12 months ago the nickel would be a non-issue. But I agree that if it shows up in your blood work it prove your body is still reacting to it!
Also my chest pain is very like the chicken bone feeling! I have hard time describing it.
That’s why I laugh when my docs say it is a panic attack. Do panic attacks feel like you swallowed some razor blades?

My next stop is the UCLA HEART CLINIC - I will see if anyone there will help me. I can’t seem to find anyone in SanDiego who will take me seriously because I have a “perfect” closure.

Let me know how your nickel test ends up!
Jennifer

Hi Jennifer,

I actually had my closure in San Diego too! I lived in North Park for 8 years and moved back up to Sacramento May 2014 for school, only two months after surgery. I saw an interventional cardiologist from the La Mesa Cardiac Center who did my surgery. Since then all my follow ups have been with doctors here in Sacramento. UCLA Heart Clinic is a great place to get checked out! It's one of the leading hospitals who have removed numerous PFO/ASD occluder devices due to complications after placement (I read about it in a cardiac journal). If I test hypersensitive to nickel, UCLA Medical Center is on my short list (along with the Cleveland Clinic) for calling to find out about discussing the possibility of removing the device via minimally invasive robotically assisted surgery through the right side ribs in my chest -- no midline sternum scars for me thank you very much! ;)

I see my primary care physician this Thursday to order the MELISA test... I imagine it will take a few days for them to get the testing kit, and then two weeks to get the results, but as soon as I know I'll post an update!

I hope all goes well for you at UCLA Heart Clinic. After your visit, please update and post how it went I would love to hear! I'm so sorry you're not feeling well either. It's a crummy thing, but there's definitely a way to get to the bottom of it, you just have to find the right doctor who will finally listen. Until then, must soldier on! :)

~ Katherine

Anyone if you have not had a Gore Helex or Amplatzer occluder put in your heart, please do not. I feel so bad. I have had what I called heartache most all the time. Now thinking about it it does feel like I have swallowed a bone or something that is stuck in my upper chest. I have extra heart beats and my doctor says he does not know why. I am on amiodarone for the extra beats which is a devil drug. (Works for the heart, but destroys other organs.) I would not wish this on anyone. I feel like the doctors want these devices to work but they do not.

Hi Katherine,

Let us know the results of your nickel test. I am anxious to hear how it goes.

I just scheduled my second nickel test for two weeks from today. I have been taking antihistamine for my hayfever but I have been warned to stop. So I am stopping all my meds for two weeks this time. I really want to be sure I don't have nickel allergy.

Let us know what they find. good luck!

Jennifer

Ok so I went in for my 72 hour check-up after my TRUE patch test was placed on my back and my nickel test showed no reaction. I kind of expected that since I read a couple doctor opinions online who remarked that the TRUE skin patch test wasn't very reliable, including a blog from a Mayo Clinic dermatologist who stated in all his years of doing skin patch testing, his opinion of the TRUE test was that it consistently returned false negative results (that it would say a patient wasn't allergic to something when it was 100% known they definitely were).

So I'm scheduled for the MELISA nickel and titanium hypersensitivity test in late April (testing for both nickel and titanium since the implants use Nitinol which is a 55% nickel/45% titanium blend). Hopefully I get more answers with that. In the interim, I'm gathering all my records together so I can seek a second opinion outside Sacramento in the near future since the best hospital here is UC Davis and they are completely clueless as to what's going on.

Thanks so much for asking for my progress; it really helps because knowing I'm not alone and that others are experiencing the same things I am really validates what I'm going through.

The scavenger hunt continues! Onward and upward!

~ Katherine

I read your post again. When I did I read the visual aura thing again and realized I had this too. I have a diagnosis now. You can read my posts if you'd like but I don't want to scare you my case may be much different than yours. I am doing well with medicine and a very understanding young go-getter doctor. I would push for a double heart cath. My doctor was flabbergasted at what mine found, in fact, he tried to talk me out of it when my tilt test right before the cath test went fine. Then, he was at my side with four cardiologists in the room 20 minutes later. You are awake during this test so it's expensive but not a big deal really. Best of luck finding your cure...Stick up for yourself no one else will if you don't kindly ask. I use the line "If I was your wife what would you recommend?" It makes the doctor slow down and "Think" we are human and not just their next appointment. Worked on SEVERAL occasions for me!

Also, ask him if he would try lisinopril. I felt better in three days and then when I worsened we doubled it. It is an old heart failure med. I have afib too.

Thanks for the advice I am going to ask my doc about that med!

-Jennifer

Hello Katherine,

In summer 2014 I was diagnosed to have an ASD. I was told that I should seek for help as soon as possible and close the defect, otherwise I would have pulmonary hypertenstion and so on…

Anyway the closure was performed with Amplatzer. Everything went very well, but about 5 weeks after the closure I started to have chest pain and shortness of breath, which I never experienced before the closure. All possible cardiologic tests have been done and nothing was found. The IgE levels againgst nickel were also in normal range. Unfortunately I have these symptoms permanently and I tried to seek help in different centers, but nobody can help me. I can say, I am kind of handicaped, because every day starts with this challange, how would I feel today?!

I read your story and would be thankful if you could share your experiences, if any changes have occured. Thanks

I had many complications after surgery. I now am pretty stable. I have more good days than bad and hardly any bad. I found out I had a degree of heart failure and it is being treated with lisinopril 20 mg daily. I am so thankful for a heart doctor who stuck with me. I have to know my limits now. When I am tired it means shut it down and go to bed without delay. Otherwise, I get heart palpitations and it can last for days or weeks. I have learned to read my body. But, I am as healthy as I have been in a few years and working as a teacher in second grade. If I can do chase little peple around all day and still go at night thats a great sign. I hope that you can find a doctor who is willing to stick with you. He didn't think he would find what he found during the heart cath during my test I could tell by his face! So I think he learned a valuable lesson to listen to his patients that day too which he was glad he had! Read my posts if you'd like. I wish you the best and I understand because I truly thought I was going to die. Now, I have a one year appointment then will be set free for five years before my next appointment. Although, he did say listen to your body because there are no long term studies with the closure devices on adults and he had a ten year person who just had complications. Are you close to Omaha, Ne? I went to UNMC and love it!

Thanks for your reply. I would like to know, if any of the people who discussed their complications after closure in this forum found a permanent solution or at least a proper diagnosis? Many discussed their issues here. That would be a great help, those got rid of the complications somehow, just come back and report about their experiences and therapies.

Hi Shayna,

My apologies for the delay in response, my account had a glitch and wouldn't let me reply to this thread for weeks!

Let me first say I absolutely understand what you're going through. I couldn't rest until I got answers because my condition too has disabled me and changed my life in a way that affects me so negatively. But there is hope!! I know because I've found answers!!

Thanks to this group I made a dear friend who had the exact same symptoms as me and was able to find resolution! She found fabulous success at UCLA and a complete resolution of all her symptoms having her device removed even though her tests showed she wasn't allergic to nickel because the doctors at UCLA recognized the symptoms as a nickel allergy and said her blood tests may not be accurate. So as far as the nickel testing goes, just because your tests show you're not allergic to nickel, that may not be the case.

Can I ask where are you located? The reason I ask is Dr. Jamil Aboulhosn, the Director of the Ahmanson Adult Congenital Heart Disease Center at UCLA is an expert with this condition, so if you are able to get to UCLA, you MUST go to see Dr. Jamil Aboulhosn. After I heard about my friend who had the same symptoms after her device was put in and her success getting a resolution of her symptoms at UCLA with Dr. Aboulhosn, I made an appointment to see Dr. Aboulhosn and drove 400 miles to see him at UCLA, where he told me that the symptoms I was describing post surgery were most related to a nickel allergy. I told him that my tests showed I wasn't allergic to nickel, but Dr. Aboulhosn said the tests weren't always accurate and in fact he had several patients who had tested negative for all nickel allergy tests, then had their devices removed and their devices and tissue samples sent to the laboratory after surgery and tested positive for nickel allergy and inflammation -- but for whatever reason their blood wasn't showing the allergy, only the tissue where the device had contact showed the allergy.

One test Dr. Aboulhosn recommended that you can do at home that can be far more accurate that an nickel allergy blood test is find a nickel (any modern day nickel from the 1940s - now), clean it very well with rubbing alcohol, then wash the alcohol off with soap and water and dry it off; wash the inside of your forearm and dry it well. Then tape the very clean dry nickel to the inside of your forearm using bandaids and leave it there for 4 days. Do NOT get it wet when you shower, do NOT remove the bandaids, make sure the nickel remains completely stuck to your arm for 4 days, then remove the nickel and see if a reaction has occurred on your arm. The reason a nickel from modern day is used is because they are made up of more that 25% nickel, so if you are allergic you may have some sort of reaction -- I had a small reaction, and my friend who had her device removed did this large test and had a large reaction, and both of us tested negative on all nickel allergy blood testing.

After seeing Dr. Aboulhosn and explaining to him my symptoms, he recommended I have my device removed to cure my post surgical shortness of breath, chest pressure & pain, etc. because he felt they were most likely caused by a reaction to the device. He said it may not necessarily just be a reaction to the nickel because there are other things in my device that I could be reacting to as well, but that clearly I have not been well since the device was implanted in my heart. Dr. Aboulhosn referred me to Dr. Richard Shemin at UCLA, who is a minimally invasive cardio-thoracic surgeon, to remove my device. I made an pre-surgical appointment and met with Dr. Richard Shemin and he spoke to me and my mother for an hour where he explained his expertise (he's been doing open heart surgeries to repair ASD & PFO holes for over 30 years)! Dr. Shemin explained how he's removed MANY ASD/PFO occluder devices since they were approved to be used in 2002 due to patients' allergy to nickel. AND he's been doing his open heart surgeries MINIMALLY INVASIVELY since 1995, where he cuts you under your right breast and goes in between your ribs using the Da Vinci robotic device, and does NOT cut your chest open by sawing open your chest bone. I was so excited because the recovery is shorter and the scars are hidden!

I haven't had my device removed yet because I have some inflammation in my stomach and they're ruling out whether it's a bacterial infection first (you can't have any active infections before going into open heart surgery or it leads to scary complications), but as soon as my stomach issue is treated and healed I'm making an appointment with Dr. Shemin to have him remove my device minimally invasively!

Don't lose hope Shayna I know it's hard! Waking up feeling like crap, going through your entire day feeling like crap, going to bed feeling like crap, only to wake up and do it all over again every day for two years straight sucks so bad I know! But don't forget that this can be resolved you just have to get in front of the doctors who recognize the issue and know how to resolve it. Shockingly enough, only 3 hospitals in the USA know about this issue and remove devices because of it. It was absolutely shocking to me that UCLA are experts on this issue and have removed hundreds of these devices due to nickel allergy but that cardiologists in Sacramento where I live know absolutely nothing about it and are completely worthless -- and they're in the same state, but are completely clueless!! Atrocious.

So if you can get to UCLA, I absolutely recommend you contact the Ahmanson Adult Congenital Heart Disease Center at UCLA to see Dr. Jamil Aboulhosn (pronounced Ahh-bool-hose-in) - here is their website where they explain what new patients need to send to them in order to get an appointment: http://heart.ucla.edu/site.cfm?id=186

UCLA has a patient's hotel on their campus right next to the hospital for patients coming from out of town called Tiverton House Hotel, so there are places to stay geared specifically for patients coming from far away. I hope this information helps you on your journey of recovery.

Please let me know how it goes! I hope you are able to find help! :)

~ Katherine

Hi Katherine, I am realy greatful for your response. I live in Europe, but what you wrote is really helpful for my condition. Now I can discuss all these details with my cardiologist. He is very understanding, but he does not have any diagnosis for my suffering. I am now 100% percent convinced, that I have to get rid of this device asap. I hopefully find some experts here to get the device out of my body. That’s more than great, that you shared your experience with me. I am finally sure, that all these sufferings come from the device and the only cure will be getting it out of the body! Happy holidays and become well soon. I will update you in the coming year, when the doctors are back from holidays. Regatds

Hello Shyna and Katherine,

I was wondering if you ladies have any updates on if you got your devices removed or not, and are you feeling better? I’m going through the same thing, having issues after getting the Amplatzer, and I’m doing my research on possibly getting it removed. As you know, not many doctors are aware of the problem, so I’m being my own health advocate and doing something about it. Thank you so much for sharing your experiences.

Cathryn :slight_smile:

HI Stace,

Thank you so much for posting about your experience!! I was curious why did you have the ASD closure to begin with? How did you physicians miss the heart failure? How are you feeling now?

Hi Katherine,

Firstly, thank you so much for posting about your experience. I actually reached out to Dr Jamil Aboulhosn from your post. He is EXTREMELY KNOWLEDGEABLE and really KIND! I have a crazy case of dyspnea and chest pain that has had me completely incapacitated for the last 2 years. I went from running 6 marathons to being unable to breath normally at rest. It all started with 3 bilateral pulmonary embolisms that were missed for 6 weeks. But anyways now we believe that my PFO with aneurysm is what is continuing to cause my symptoms. So, I have decided to close the hole :slight_smile: I contacted him and spoke in detail about the procedure he said that most people do fine transcatheter with a device. However, there are a few who have the allergy and do terrible afterwards. He did recommend the nickel test. However, he said 24 hours was sufficient. How are you feeling now? AND AGAIN THANK YOU FOR YOUR VERY INFORMATIVE POST!!