Fail, Fail. Next?

Well, it's the weekend, and time for medical emergencies to happen.

Got a pacer June 3, and it healed perfectly for 3 months. Paper thin scar, and fit was pretty good. One day, some clear blisters appeared near the scar. One blister became bean sized, and burst. My cardio freaked, and ripped out my pacer. Implanted another one Sep 8th on the right side. It was miserable having a wound on each shoulder, and still is.

Now,,, you guessed it, the new wound is acting up. When the staples were removed 4 days ago, it looked red but OK. Now it looks redder and as though it's going to burst open. If that happens, my cardio will yank everything out again.

I'm beginning to suspect rejection due to allergy, because the cultures were negative. Still no sign of infection, just tense and inflamed.

Are there special hypoallergenic pacers that don't have to be hand wrapped in PTFE?

How many holes can the heart take without danger? I have 2 leads, so that's 4 holes now, with 2 more to possibly follow.

Where will the next pacer go? In the abdominal area?

Many thanks,,,

21 Comments

what a mess!

by Tracey_E - 2008-09-19 09:09:23

Yes, they can put them in the abdominal area but if it's healed I'd ask to try the left side again. They can also put it lower on the chest, closer to your underarm. But hopefully it won't come to that!

They don't make holes in your heart. The leads are threaded through the arteries and I've heard of as many as 8 without problems. If they have to replace the unit, they should be able to keep the same leads and still use them, as long as that's not what you're reacting to.

If you dig through the archives, there was a post a few weeks ago about testing a bag that they put the unit in before implant that will reduce the chance of infection.

closing with staples????

by gamma - 2008-09-19 09:09:27

Why did they use staples??? Maybe your reacted to the staples. My incision was closed with sterile strips that holds the wound together until the wound has sealed in about week. The pace may be placed in the abdominal area. The device is sealed in a titantium case.

Staples?

by boatman50 - 2008-09-19 11:09:03

What is this, the Middle Ages? Who are we, Frankenstein? The surgeon that put mine in also used staples the night he put mine in as an emergency surgery. Unfortunately he also made a mistake and I had to get new leads put in 2 days later. Fortunately I had to go into NYC to get it done as my local hospital could not fix the problem. When the cardio/surgeon saw the staples his jaw dropped. needless to say he did a great job stitching me up after the operation. Say no to sta[ples!

Yes, it's a mess

by bobad - 2008-09-19 11:09:12


Gamma,

Yes, closed with staples. They worked wonderfully on the first pacer. Beautiful scar, little pain, no inflammation. The 2nd one is a real mess, however.

Tracey,

The abdominal area sounds way more painful than the chest area. Too bad my left chest site is not yet healed. Looks like it will need 4-5 more weeks to be completely healed.

Yes, the leads do make holes in the heart. They actually screw them into the inside walls of the heart.

I suppose the lead points are about 1mm or a little larger, so maybe the heart can tolerate several punctures without harm. (I hope!)

The site has still not broken open, but I'm expecting it to at any time. Just wondering whether I should see the doc tomorrow or wait until it actually pops. I suppose there is a slim chance it will never pop. If I see the doc, he will be very aggressive and yank everything out again. If I wait, it may never pop, and I'll be OK. Dilemma! Thoughts?

blame

by Tracey_E - 2008-09-20 01:09:13

I didn't really think he was at fault. I just think he acted hastily, not getting to the root of the problem before popping in a new pm. I'm glad to hear it's better this morning! Are you icing it?

no staple here

by gamma - 2008-09-20 07:09:53

Forgot to mentlion that I have had four ICD implantations and none had staples used for closing the wound(s). Stitches were used for closing my incision from open heart surgery. Maybe you need to have antibiotics before surgery and after. I'm drug sensitive and allergic to some tapes thank goodness it isn't with the sterile strips for closing wounds.

second opinion

by Tracey_E - 2008-09-20 08:09:18

I wouldn't go back to that doctor again before getting another opinion. And no, don't wait until it pops! Go now. But no way would I let the same doctor have a third try doing the same thing in a different place when it didn't work the first two times. The answer isn't to keep trying new places, it's to find out what caused the problem and do something different next time.

I've never heard of screws in the heart. I thought the leads just lie there, that's why we have to be so careful the first few weeks that we don't yank them out before they grow in place. Interesting.

I just had tape the last time- no stitches or staples. Who did your surgery- surgeon, EP, cardiologist? Unlike most people here, I have a regular cardiologist instead of an EP. He sends me to a cardiac surgeon when it's time for a replacement. I like having someone who does nothing but surgery, my scars are nearly invisible and I've never had any kind of problem healing.

Hanging in there, Staples, Surgeon

by bobad - 2008-09-20 10:09:25

Well, (fingers crossed) the inflammation around my wound seems to have lessened slightly this morning. If I can prevent it from bursting for another day or 2, I think the inflammation will decrease and I will be OK. That is, unless I'm sensitive to titanium, polyurethane, or silastic.

Boatman, I don't see what's so bad about staples. I thought they were the best for strength, less scarring, and good comfort. I would be afraid to wear tape for several days, because tape adhesive always causes skin irritation. I still have healing sores from the tape on my wound dressings.

My surgeon is a cardio, not an EP. He does many, many pacers, caths, and stints. I call him a "lab rat", because he stays in the cath lab about 8h per day. When you do a few procedures repeatedly, you become very good at them.

I don't know if my problem is his fault. If he introduced infection into my first and/or second pacer site, then yes, he is to blame. However, the cultures have all shown negative. Now,,, if I end up rejecting this pacer, I will expect him to do allergy or sensitivity tests so the problem is not repeated.

The only thing I question is that he acted maybe a little too aggressively to replace the 1st pacer. I think the problem was inflammation, he said he had to assume infection. Turned out I was right, but in light of the serious consequences, I understand his aggressiveness.

Nice weekend, cheers!

Screws/Infections

by ElectricFrank - 2008-09-21 01:09:38

First off there are two common types of lead terminations in the heart. On is the infamous screw tip which is attached to the heart wall by rotating it. The other is a barbed tip similar to a fish hook which is attached by pressing it into the heart wall. The barbs keep it from coming out.
Just keep in mind that the heart is a moving muscle and there has to be some way to secure the electrode to it. It takes a lot of skill on the surgeons part to know how far to insert the electrode. That's why it is important to have a competent doc do the procedure.
As for allergic reactions to the pacemaker body it would seem to be prudent to run some tests before re implanting it in another location. If there is a true allergy to the material of the pacemaker then there will be a reaction no matter where in the body it is located. It would be a real disaster if it were implanted more deeply in the body.

frank

screws in heart

by dstills - 2008-09-21 12:09:05

Hi all, I am fairly new to the site.....but had to comment on this one. I had an ICD placed on Aug. 29. By day 4 I was feeling "shocks" around the diaphragm and under the left breast. Finally returned on Sept. 9 and found out I had a lead perforation. The doc said there are tiny screws on the end of the lead that embed in the heart. Mine just happened to be in a "thin" part of the ventricle and went completely through it. It did not pierce the pericardium, and they backed it out and moved it to a different spot. Guess I was lucky as the hole closed up on its own and I did not have to have surgical repair to the heart. Anyway, it certainly seems better now. Just wondering how long it will take for all of the feeling to return where it was popping me.

Deannie

In Hospital

by bobad - 2008-09-22 05:09:06

Here I am in hospital again. I'm waiting on cultures. Since there is no sign of infection, I assume the problem is inflammation. If cultures come back negative, I will try to talk the doc into anti inflammatory drugs until everything heals. Last time, he yanked the PM even though the cultures were negative.

Just found out I'm suddenly sensitive to Vancomycin. It made me feel like all my bones were breaking last night.

Turning Into a Nightmare!

by bobad - 2008-09-22 08:09:52


Well, the doc now says he will likely have to pull my 2nd PM in 2 months. They will have to implant the PM in my abdomen, and the leads are more complicated.

I asked my doc if no1 and no2 became inflamed, why does he assume No3 will not become inflamed? He couldn't give me a good answer, saying only that it most likely had to come out.

I asked him about treating inflammation, and he said that wouldn't work. He is so uptight about infection that he doesn't want to entertain trying to cool down the inflammation before riping out the PM.

Right now, I'm teetering on refusing the 3rd PM. I have brady with occasional fainting, and maybe should just live with it instead of risking another (worse) surgery.

I really do need your advice, as my situation is spinning out of control. If it wasn't so serious, it would be funny the way 1 problem leads to another.

Thanks, and please give me some advice!

Get a Second Opinion

by ElectricFrank - 2008-09-23 01:09:32

As you mentioned your current doc is uptight about infection, but can't answer why he thinks a 3rd location would be any less likely to do the same thing. He doesn't seem to be willing to answer your questions which for me would end my trust in him.
It seems like time to get another doc to handle things. I suggest being pleasant and understanding with the current doc. Tell him you are concerned about asking him to take an approach that he is uncomfortable with. Maybe he can suggest a cardiologist or call St Jude and ask for a list of cardiologists that implant their pacers in your area. Then contact one or more of them and ask what they would do and why.
If you are having even occasional fainting you certainly need a pacer. It may not seem like much, but you could fall and injure yourself or if you drive it could be much worse than that.
Unfortunately, in the current medical environment we are up against taking care of ourselves. It isn't easy when we don't feel well and are concerned to make well thought out decisions, but the alternative is worse.

best of luck,

frank

ew

by Tracey_E - 2008-09-23 02:09:01

Well, being stuck in the hospital will make it a bit tough to shop around! Have you considered refusing the procedure today? Come right out and tell him you want another opinion before they do anything else. Can you ask the nurses how to go about getting a second opinion before the procedure?

Ask your doctor to call St Judes today, before they do anything else to see if they have other similar cases. Or you call the number on your id card yourself.

I'm sorry, I don't know anything about abdominal implant. Mine is in an alternate location but it's submammary, not really an option for you guys!

Good luck!

ditto what Frank said

by Tracey_E - 2008-09-23 07:09:34

Go get another opinion! Maybe two more. Not having a pm isn't a good option when you need it but doing the same thing a third time doesn't make sense when you have no idea why it didn't work the first two times.

Check with St Judes to see if they have any other cases like yours. If they don't, they may want to make you a case study. They are extremely responsive as a company to new problems that crop up. I know this because I had some issues last spring that the local dudes couldn't fix, a combination of symptoms they had never seen before. They faxed everything to the engineers at St Judes who made me a case study. They had a powwow and came back with a solution for me.

As Frank said, St Judes can give you a list of doctors they work with. Can you call your St Judes rep directly? If you can do that, ask them for a recommendation. That's what I did when my original doc stopped accepting my insurance, asked my rep who he'd go to if he or his wife were suddenly a pm patient.

Second Opinion

by bobad - 2008-09-23 10:09:09


Frank and Tracey, you are right. But I'm stuck here in hospital, and it isn't easy to get in touch with cardio or EP docs on such short notice.

My doc wants to take me to the cath lab at 5pm today and cut open and examine the pocket. If it looks good, he will rinse it out and attempt to keep the same pacemaker. If it looks the slightest bit suspicious (despite negative cultures) he will remove everything and close the pocket.

Now,,, scenario 2 leaves me without a PM until I decide whether to allow a new cardiovascular surgeon to do an abdominal implant. I will not allow another implant until and unless they can find out why I rejected the first 2 implants, and take measures to prevent future rejection.

2 questions:

The inflammation/rejection seems very minimal. If the PM is left in the current site, what are the chances that my body will eventually accept it? (with maybe anti inflammatory meds and corticosteroids)

What are the pros and cons of an abdominal implant site, and the surgery itself?

Sorry for the long post guys and gals, but I'm in dire straits!

Thanks in advance for the help!

Bob A.

Or???

by bobad - 2008-09-24 11:09:10

Frank,

That's an excellenbt question. It could be as simple as leaking leads.

My first and 2nd implant site both appeared and felt extremely tight at the incision line. Could that have caused local inflammation and redness that mimic infection?

Sometimes we panic and overlook the simple things!

Anyone had leaking leads or a tight PM fit causing inflammation and redness?

Still in hospital, had surgery yesterday to "clean out pocket". Doc said it looked "fair".

Rejection/infection/ or??

by ElectricFrank - 2008-09-24 12:09:02

Another possibility is that the leads are not properly installed in the pacemaker. This can let body fluids leak into the connector and conduct pacing current into the surrounding tissue causing irritation. With the same surgeon doing both implants he could have repeated the mistake.
In the Instructions for Implant section of my Medtronic Manual there are 4 pages of detailed instructions on properly connecting the leads with multiple warnings about the effects of various errors. Even between different models of the same manufacturer the procedures vary.
Something about the whole thing doesn't make sense.

frank

Thanks for the info

by bobad - 2008-09-25 01:09:02

60bpm,

Thanks for the info and the nice phone conversation.

Although our problems are different, they are similar in that the materials are probably the culprit.

Since my 2nd PM became inflamed and skin erosion began much earlier than the first PM (3 weeks vs 3 months), I do suspect metal sensitivity. As you said, the body is slow to react to metal, depending on how much mechanical rubbing is going on. I am guessing that the body grows more sensitive to the metal as time passes, so maybe that's why I reacted to the 2nd PM quicker than the 1st PM.

Diane, that dacron bag sounds like it would be a very good solution to metal sensitivity. It probably will not block all the metal from communicating with your body, but at least it will not rub hard against the tissue.

Best of luck, and keep us posted on your progress!

Tight pocket

by ElectricFrank - 2008-09-25 01:09:38

A too tight pocket is also a real possibility. As you move your arm/shoulder the pacer could be tearing tissue and causing the inflammation. The swelling from inflammation would only make the pocket tighter and make the problem worse.
I know it is difficult when you aren't feeling well, but sometimes the only way to get any where is to aggressively take control of the situation.

frank

PM Complications - suggestions

by 60bpm - 2008-09-25 09:09:44

I hope you are feeling better today! I had sent you my cell phone number and hoped that you could call. I also have a St. Jude PM. First one was implanted on 7-31-08 and second on 9-16-08. My chest became inflammed and the inflamation spread to my arm pit, collarbone, left side of my neck and across to the right collarbone. I also had severe pain.
When dr. removed entire unit my pm leads were corroded. Prior to 2nd surgery I did have an allergy test conducted as I have a history of nickel allergy and titanium sensitivity. Unfortunately, that isn't one of the questions they asked before operating the first time - it should be. Although extremely rare, PM allergy is well documented. If you have a patch test done - make sure it is rechecked 7-10 days afterward. According to the archives of Dermatology, metal reactions are often delayed (Reuters 9-10-08 "Allergy tests useful before implanting devices") Other metal testing is done by Melisa Diagnostics - check out their website.
The head of Cardiology at May Clinic Rochester, MN Dr. David Hayes has published an article describing a special coating procedure for leads - perhaps that could be useful in your case. Finally, I had my 2nd PM enveloped in a DACRON pouch. This helps to keep it secure in your chest and can also prevent reactions between PM and your tissue.
I'd be curious to compare your lead type with mine. My original model numbers were 1888TC/52 & 46. I will keep you in my prayers Bobad! So far, I am 9 days post-op from 2nd surgery and feeling a little better each day. Godspeed! Diane

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