Gore-Helix and Nickel allergy ? for Amy and anyone else with info please

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50+
New Member


Date Joined Mar 2009
Total Posts : 1
   Posted 3/1/2009 1:52 PM (GMT -6)   
Hi, I am a 51 year old female with a PFO that was discovered about 4 and 1/2 years ago after I temporarily lost half of my vision and was unable to get thoughts and words together. I just went to bed that night and fortunately awoke ok. A cardiologist discovered a small PFO and warned me to make wise choices about how I live the remainder of my life. Another cardiologist who wanted to cut open my chest to fix it said that it is not if, but when I have a stroke. Have had declining cognitive issues over the last 6 months, but seem ok, now. I too, Amy, am allergic to nickel and cannot wear earings, jewelry, a watch, or any thing else with nickel. Have had headaches all of my life, including migraines but am terrified of this procedure. Is the Gore-Helix FDA approved? My insurance will only cover FDA approved devices. And what did your doctor say if you have an allergic reaction? The chicken bone and other side effects really concern me. I just don't know what to do ... Help!

butterfly0000000
Regular Member


Date Joined Apr 2009
Total Posts : 20
   Posted 5/23/2009 1:55 PM (GMT -6)   
I had an asd closure on april 22.
If you are given the choice for surgery and not an implant i would go for it. Surgery may leave you with a scar and longer recovery at the time. With an implant you still face that if it doesnt close or if you get a blood clot.
I also can not wear any kind of cheap jewelry.Has to be nickel free or gold. Was told it didnt have any nickel in it and believed my Dr. There is nickel in them. Mine is an amplatzer septal occluder which is the highest in nickel. It has been a month and still having cronic hives and became dermatographic.(skin writing)Which i didnt have before implant .All the allergist around me when they find out why i want tested either wont see me or say i need to be seen at the cleveland clinic.(which is a long ways from where i live )It is a whole lot easier getting them put in than it is to get them out.
This is not to meation all the chest pain and tachy that is going along with it. chest pain is anywhere from what i can imagine bengay rubbed in heart ,bunch of stick pin ,ice pick, electricity or charlie horse in my heart would feel like.also my blood pressure rises then all of a sudden falls.when it falls i become very weak, start stumbling and get a very bad headache. Then it will rise really fast and i can feel the pressure in both veins in my neck and then pressure in my head feels like someone needs to pop the cork.
They are now trying to tell me my adrenal glands are causing all my problems.Having a very hard time believing them but waiting on test results.
I know there is success stories but i wish i had followed my first gut reaction.Not let the Dr scare me over having open heart surgery and with his this is sooo much easier story . My Dr isnt the one stuck wearing this i am.
Right now i am considering the Melisa test . They can test your blood to see what metals you are allergic to but is costly

angielov
Regular Member


Date Joined Feb 2007
Total Posts : 58
   Posted 6/1/2009 7:14 PM (GMT -6)   
I also have metal allergies. My surgeon said that this would not be a problem. To be honest I don't know how allergic specifically to nickel I am. I can only wear sterling silver and at least 18k gold. Other than that it's not pretty. I was given the Gore-Helex device on friday the 29th of May. So far so good. I know the Helex has the least amount of metal.

hopetoday
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/2/2009 4:46 PM (GMT -6)   
does anyone know of a good doctor--anywhere--that does these closures with the least amount of problems?
Such as Cleveland Clinic? or Johns Hopkins, etc.

I am also concerned of allergy..I am being tested for nickel and titatinum allergies..but doctor wants to use the Helex.

I also have been diagnosed with Platypnea Orthodeoxia...anybody else?

angielov
Regular Member


Date Joined Feb 2007
Total Posts : 58
   Posted 6/2/2009 10:37 PM (GMT -6)   
Cedars-Sinai in Los Angeles is very good. They teach this procedure.

Post Edited (angielov) : 6/3/2009 5:42:49 PM (GMT-6)


hopetoday
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/3/2009 9:09 AM (GMT -6)   
Are there any doctors in the midwest that anyone would recommend for PFO closures?
Also, what devices have the least amount of symptoms?
Amplatzer? Helix? etc.?

M & M
New Member


Date Joined Sep 2011
Total Posts : 1
   Posted 9/3/2011 8:10 PM (GMT -6)   
I received the gore helix implant for my PFO four weeks ago. After the first week I began itching. The doc. assured me that my itching was because of the Plavix which I was taking as a blood thinner. He has taken me off of the Plavix and I am using only aspirin as blood thinner now, just as I was prior to receiving the implant (when I incurred no itching). Nevertheless I ontinued itching after the doctor took me off the Plavix. Thus, he prescribed prednisone. I have taken this for five days and I am still itching. He assures me that NO REPUTABLE RESEARCH has ever shown people to have allergic reactions to the gore helix implant. I am taking no other meds, using no new soaps, etc. that could be the culprit. The only thing different is the helix implant. My legs and arms are breaking out in hives and my head itches. If anyone is considering this implant who has known allergies to any of the metals I would definitely advise you to seek an alternative.

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 9/4/2011 10:04 AM (GMT -6)   

Percutaneous Closure Devices for PFO Repair :

Link:  http://my.clevelandclinic.org/heart/disorders/congenital/pfo.aspx


~~Kitt~~
Moderator: GERD/Heartburn and Heart/Cardiovascular Disease.
www.healingwell.com

"If you can't change the world, change your world"

mypfo
New Member


Date Joined Oct 2011
Total Posts : 3
   Posted 10/22/2011 1:38 PM (GMT -6)   
I had a stroke in May and was found to have a pfo with shunting from right to left. I am still trying to make a decision about how to close this hole. All of the medical journals and patient testimonies are making me strongly consider the surgical option. I don't want a run on the bypass pump, but want to look back in the future and consider this whole event over. I am not confident I will get that with a device. If I do decide on a device, it will be the helex as my research indicates it may be superior to the amplatzer as it has less metal and NO incidences of device erosion.
That said, I do not have a metal allergy and if I did, I would go straight to surgery. Still deciding... and hoping to remain stroke-free in the process.

Mistle30
New Member


Date Joined Nov 2011
Total Posts : 1
   Posted 11/1/2011 7:15 PM (GMT -6)   
MyPFO - I had my ASD repair in August, 2011. I have had very few problems. I had a 12mm hole which had gone undetected on all my studies. My initial heart problems began with runs of SVT. I had an ablation three years ago which has been successful. I began coughing last February, followed by a cardiology appointment in July. We knew I had about 7 small pinholes (from echo and MRI). I called the surgeon and he said lets fix it. Interestingly enough, once the MD was in (via the groin), he found my 12 mm hole. I now have a Gore Helix implant covering the 12mm hole as well as a few of the pin holes. I will have more tests in January to determine another implant to cover the remaining holes.

I think the questions you need to ask yourself are how big is the hole? Are their other smaller holes around on the septal wall. I signed a consent to do cardiac cath but allow the MD to open my chest if he needed to. We had an OR ready and waiting. I am soooo thankful at 44 that I chose the route I did. I have an amazing surgeon who listens to me. The initial cardiologist (for my rhythm disturbance) came into the cath lab when they visualized the larger hole. She was astounded and when I finally was coherent she said, no wonder you felt so crappy. I am blessed that she listened to me and was willing to order the "million dollar" workup.

I am still tired but each day gets better. I have had to come off the plavix as well, my blood was getting way too thin. I looked like the human bruise.
Not sure if this helps but I am a success story!

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 11/2/2011 9:05 AM (GMT -6)   
Welcome to HealingWell and thanks you for sharing your story with the members and others who read our forum.  I am also very happy to know that you have such great Drs. as that helps making your decisions re your health.
 
Keep us posted on how you are doing as reading a success story is so very helpful to others going through the same health problems.
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.

www.healingwell.com

"only as high as I reach can I grow, only as far as I seek can I go, only as deep as I look can I see, only as much as I dream can I be"

mypfo
New Member


Date Joined Oct 2011
Total Posts : 3
   Posted 12/13/2011 5:33 AM (GMT -6)   
I just had my pfo/asd closed last week using the gore helex device. So far, everything looks good but I have not yet had a follow up echo. My one piece of advice would be to NOT go home the day of the procedure. My procedure was done at 1:00 pm and I went home after and this was a mistake. Had a scary episode of palpitations, extreme nausea, hot and sweaty, couldn't sit up. My husband almost loaded me in the car to go straight back to the hospital, but the symptoms thankfully subsided.
Otherwise, now 6 days post-op, I am feeling pretty well with the exception of the thickness in my chest and ringing in my left ear. I have a call into neurology about that one.
Otherwise I feel great and am wondering if I can begin to work out. I agree with other posts to this site indicating that post-op direction with this procedure is quite vague.
Thanks to Mistle30 for earlier reply. I hope you are still doing well!

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 12/13/2011 9:25 AM (GMT -6)   
Good Morning to all and a huge welcome to newcomers.  I look forward to getting to know you better.
 
Here is a link to a thread from the past however it has a lot of member information re this topic so you may want to take a look.
 
 
I think to return to work you need permission from your Dr. unless your self employed and I suspect it depends upon what type of work you do.  Keep us posted as we are here for you.
 
Kindly,
 
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.

www.healingwell.com

"only as high as I reach can I grow, only as far as I seek can I go, only as deep as I look can I see, only as much as I dream can I be"
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