PacemakerS removed

[kathie659]

Afib seemed "cured" with ablation. Then sick sinus syndrome 5 yrs later.

1st pacemaker implanted.For 12 months I pleaded with 4 doctors to check it as site swelled to size of tennis ball.

Surgeon removed it.Surrounded by necrotic tissue, implanted one other side. 3 weeks later (after appearing nicely healed) I woke to find incision open and weeping. 2nd pacemaker removed. Total of 9 days in hospital. Blood tests and cultures 4 times a day showed no infection from either site. No fevers nothing.

I asked for allergy test, surgeon insisted there is no allergy to pacemakers. I cannot eear most jewelry as i break out in blisters.

My options? wireless Pacemaker in heart or nothing.

I opted for nothing as i feared allergic reaction inside heart.

My heart rate fluctuates from 40s to 120 whether sleeping, sitting, walking.

In US it seems there are no reliable metal allergy tests.

Are there any in UK?

the Melita test must arrive in Germany within 48 hours of draw..no delivery service will guarantee that from US

any suggestions?

[DawnTX]

That does not make sense that they will ignore your questions on allergy. I thought most of them are made of titanium, which is a metal. Most people can tolerate, but that being said does not mean everyone. I don’t know why the wireless would make a difference if it’s the body of the pacemaker you are allergic to. I have trouble with jewelry as well. Even stainless steel. That has been a problem with my medical ID jewelry. I am sorry you have gone through such hell. I had trouble with my loop recorder not so far as infection, but the outside area itched from the day I got it. They just removed it when I had my p.m. fitted and the edge is now gone. I thought I was going to have trouble with the PM however, they itch they are I think it’s just the healing thank heavens. The thought of needing them removed and replaced is frightening especially if you have your AV node ablated as I did. It is not reversible. Have you reached out to a different maker of PMs right now there has to be a way to get you relief together, I would hope 🙏🏻

[kathie659 in reply to DawnTX]

I am looking into Cleveland clinic...coincidentally they have recent podcasts about pacemaker allergies. I am determined to find an answer before I need another pacemaker . Meanwhile? I am trying not to obsess over slow HR or sinus pause. I find it difficult to understand why these doctors dont hear me or insist pacemaker allergies arent real...

[DawnTX in reply to kathie659]

Cleveland clinic is one of the best. I had one near me in Florida and know many people who use it. Houston has massive city blocks of every hospital that you can name. I went to Houston Methodist DeBakey Cardiology. You may be familiar with the wolf mini maze. Mummy Luv had it done last April I think it was, and from what I can tell she is still doing incredible. Dr. Wolf is part of the team at DeBakey. My own doctor is also a pioneer unfortunately what he did failed, and I spiraled down after that. Things happen, and not all procedures are not for everyone. I have pierced ears and even gold earrings bother me. I never really checked it out but I have a feeling that the That goes on the earring may have nickel in it. I don’t think I would trust a doctor that cannot open his mind when it comes to any type of allergy. What else does he not consider possible? Perhaps he is stuck in his Ways. That is not good for you. Best of luck please let me know how you are doing and what you are considering next. Do not give up.

[MummyLuv in reply to DawnTX]

I am doing brilliantly thanks, nearly a year, eeek. I did indeed have a mini maze but in the UK rather than with Dr Wolf in Houston. I would have travelled to Houston had I not found Mr Hunter in the UK. Dr wolf is one of the pioneers on mini maze and very experienced.

I’m really surprised at this post to be honest, the doctors should be listening to your concerns about allergies Kathie. You know your body better than anyone else! Time for a second opinion maybe x

[DawnTX in reply to MummyLuv]

I didn’t know you did not have it here but for some reason I thought he had done yours. I’m just so happy that you’re still doing well. I just got home from my EP. He is over the moon with the way that I am doing, including my EKG this morning. He told me he shared my case in Dallas with a large group of other EPs. He said they were amazed, and they want to learn the procedure and have invited him to teach a group of them there. I do not know if it is another Baylor, St. Luke’s hospital or where but he said they are fascinated with everything. Earlier the person from Medtronic’s was talking about the uniqueness of my case and how everyone is interested in learning from me lol I. Evidently there are few people that need what they were able to do for me. I know it has something to do with the leads of the pacemaker among other things. All I can say is how grateful I am that they have this available for me. Next month they will do another echo to check on what is going on with my heart failure. I am not 100% and part of that is I am still healing, but it could also be my heart failure continuing. There are medication‘s to treat that. Today he lowered my heart rate to 70 the plan will be to get it to 60 in the near future. Considering I was living with it in the 150s until a month ago I’d say that’s quite a bit of progress. Ideally they want to see the heart rate around 60 at night he said it should help me sleep better also which is an ongoing problem. Isn’t it amazing what they are doing out there to help us? Again I’m so happy that you have moved forward this past year. I am happy that I found my new AP and cardiologists. I can’t say enough about them. Please stay safe and healthy and happy my friend.

[MummyLuv in reply to DawnTX]

so delighted to read this Dawn, you deserve it after such a difficult journey, stay well too my love 💕

[JOY2THEWORLD49 in reply to DawnTX]

Hi

Dawn it is the NICKEL under stainless steel. I have Medical Alert but do not

wear the necklace which is STAINLESS STEEL on NICKEL. I have the tag which fits over my watch strap. This year another cover to stop scratching. CCB was a new med.

Cheri JOY

[DawnTX in reply to JOY2THEWORLD49]

I get it. Yes Nickle gives me welts. I did get the necklace. I cannot wear it. Thank you for sharing that. I am looking at a new one now it has a rubber wristband, so no metal touches your skin. I don’t wear a watch or I would get something like you

[opal11uk]

You have had an awful experience which must have horrific to say the least. I had a PC fitted 7 years ago and I in fact have a metal allergy, discovered some years ago when I was in hospital and made to wear a key on a chair around my neck, this was the key to my drug cupboard! I think you have taken the right course of action. I am due to have the battery replaced in approx. 2 years and I am dreading it and may well decide to tell them not to bother until it actually runs out lol.... Good luck

[Quilter43 in reply to opal11uk]

Reading all this scares me.May need PM

[opal11uk in reply to Quilter43]

Don't be scared, its been life changing for me, ive been A/F freefor the past 7 years, I still take drugs but I am slowly weaning myself off of them, I am glad I had it fitted.

[DawnTX in reply to opal11uk]

I agree with Opal. I’ve only had mine in about six weeks, but feeling the difference already and feel almost normal again. So many of us have allergies to so many different things. My first major one was amiodarone, which they put me on in the hospital, and even though I was covered with a rash by the time I left, they kept me on it in pill form. I have learned now to make a lot of noise because not making it sound bad enough I was ignored until my doctor saw the rash. It wasn’t just the rash. I was horribly sick and curled up in the fetal position. Most of the time I couldn’t even describe the way I felt sick. It was just all over inside and out. I say talk to the doctors first let them give you a test. It may turn out different inside of you, but if you had a horrible reaction right away, it would show them what might come to be and they would find a way around it. I mentioned to someone else how my tech for my pacemaker told me they make a gold pacemaker for people with allergies, I would hope that it is not so expensive that they would turn people down when they need one to live. There must be a way to work around these things.

[kathie659 in reply to Quilter43]

My mum and grandmum had PM. Never a problem with them. I am "that" person where doctors, mechanics, tradesmen say "Ive been doing this 30 years, never saw this before".

[irene75359]

A few months ago we met up with an old friend whose daughter has a severe arrhythmia (not AF). She is on her third pacemaker, she kept on developing infections and has had open heart surgery several times. It transpires (after her parents suggested it several times) that she is allergic to the metal in the wires/pacemaker. She is waiting for yet another pacemaker that is being made that apparently is totally hypoallergenic. She is under the care of Barts in London, so it may be worth Googling to find out if this has come to fruition.

I am allergic to many things, but it hasn't seriously affected me as yet. You have my sympathy.

[kathie659 in reply to irene75359]

Thank you. Although rare, implant allegies occur...I know PM can be made of a plastic type material or gold....I would likely pay for gold as i am allergic to some synthetic products...

[DawnTX in reply to kathie659]

you are right if it’s synthetic there a good odds of being allergic

[JOY2THEWORLD49]

Hi

Always note on your allergies of metal interactions.

Poor gal.

As a child a gold plated bangle was cut off. Rash.

Stainless Steel OK without NICKEL. Nickel seems to be problem but later my wedding ring was attached to engagement. I forgot to tell them about my allergy.

Now separated.

You may be the first to have a different pacemaker!!!! Made in time for me!

You 'managed your own health". and that's what we should all do.

cheri JOY. 74 (NZ)

[opal11uk]

I too am allergic to metal, in particular Nickel. I believe my P/M is Titanium but I don't know the material used in my total hip replacement nuts and bolts but after a year so far so good