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Too much Pain with my ICD
I recently had a ICD implant put in on Sept. 20th it was a month ago yesterday. In the last 2 weeks i have made 5 ER visits , 3 office visits, Catscan, Echo, x-rays, and the makers of my implant check my ICD 3 times. I am hurting under my left brest. I have felt them calabrate my ICD i know what it feels like. And now im feeling like they are calabrating constantly it never goes away. My heart is beating fast staying around 100-105 . But this morning I called my dr. and got we have done everything we know to do and dont think we can help any farther at this point. Im eating percocet 7.5-325's like candy to stay out of pain. I do nothing but change postions lay down and most of all cry. Can anyone tell me if they are feeling the same thing or like it ? In put would be helpful. I have Biotronik. Everything in my blood work, home montoring , catscan, echo , x-rays are showing normal but somethings wrong. I can feel how bad this is . Please anyone with help words I so thank you in advance..
chelet027
10 Comments
Try another doc
by ElectricFrank - 2011-10-22 02:10:19
Before just accepting the pain as unavoidable at least check it out with someone else.
Having all the tests come back fine is what I call the FHFL "Very Healthy Feel Lousy" diagnosis.
frank
hang in there
by fogbrain - 2011-10-22 12:10:49
I am having a problem with mine. also. making me feel worse then before implant.
I contacted the company that made it, giving them the info on card.
Response was immediate. See if they can help.
Definitely would see another Dr.
My 6th Hopsital Visit last nite
by chelet027 - 2011-10-23 06:10:28
Hello thank you everyone for all the imput... I can't walk if i do when i stand up the pain is so bad it knocks me to my knees or whatever I can hold onto. I can't even move from my couch to go to the bathroom without pain so bad all I do is scream. My mom called my Cardo. dr. and he had me come back in last nite and had the people who make my ICD come in and check my implant. Nothing. It says my ICD is not pasing me . But I promise every one of you that I can feel it I can feel my heart beating harder when this happens. The pain hurts me so much that cring and screaming is all that i can do. I've told them a number of times it only happens that hard when im on my feet. And continues when I lay down but will ease off after laying down for a few mins. I at this point am going to demand it be removed. I know the risk is very high for me of having this done but I can't live like this another day longer ..... I cant get into see my dr. till Wed. and they seem to think this is no big deal. They have now added valum with my perks. I'm not addicted to them nor will I ever be.....I have back problems too and have never abused my meds. Actually my drs. get mad at me for not taking them enuff... I have 2 children whom I have to be aware of to take care of them. They are my life and the reason I wake up each day. So Please dont take me as a pill head I'm not. But at this point the only way for me to get out of pain is to take them. I just wanted to update everyone on what is still going on with me. My parents are even going as far as to going to by me a hospital bed tonight at 6p.m so that I can get more comfortable. I have prayed about this put myself in gods healing hands of mercy. Only you lord I know can guide the fate of what lies ahead for me. And lord I know you can heal me take this pain away . And lord I trust in you and have the faith to know you won't put on me more than I can bare. And I think you Jesus for all you have done for me now and I thank you for what your going to do for me over this situation with my heart. Again Thank you everyone for you imput but I would not advise any one to have one of these put in . I never thought it would be this hard to get a dr. any dr. to listen to me.
Another thought
by ElectricFrank - 2011-10-24 01:10:44
Your description of the the pain and how it happens doesn't fit the effects of the operation of an ICD. IF it were shocking you the effects would stop immediately when you lay down, not slowly. Adjustments aren't going to help.
My guess is that it is just the way the device was physically implanted in your body. It is likely pressing against a nerve or bone which can cause intense pain. You mention having it removed, but how about having it moved. Have you figured out what sort of movement brings on the pain? Where is it implanted?
I don't like to say this, but I doubt the doctor or God will be of much help as long as you are hysterical.
I really do understand. There is just times when reality is more important than understanding.
best wishes,
frank
Tired
by chelet027 - 2011-10-24 11:10:39
It's pacing me I dont care what the dr. says its pacing me. I know what it felt like when they came and tested it and made it pace me heart thats exactly what its doing now. Any movement causes it if im on my feet , laying down. Its all the same now and its getting worse each day they let it go longer. My family can now place their hand under my left breast and feel it as well. Hysterical isnt even a word i would describe me as right now... With me tring now for a week to get someone to listen to me in cluding my DR. I'm beyond hysterical im ENRAGED. If it was in their body and they were having to live threw the pain im living in they would want some thing done as well. Im tired, emotionally, physically, and mentally stressed. And noone that has ever went threw what im going threw has no idea how badly this pain is. I've begged , pleaded, with the dr.s to listen to me. No one wants to live like this. And at his point of no one wanting to help me I want it out. Reality or not this has been going on since its been put in a month ago. So imagian how much i've went threw, the tears i cry each day the from pain. The screaming from hurting so bad, It's not just hurting me but my children are having to watch this. They want to know mommy are u ok ... Mommy can I help you, Mommy can we stay home from school today we will help u. When in REALITY as u call it someone other than my family and children should be the willing ones to help me.
Ice?
by judy13 - 2011-10-26 06:10:31
What happens if you ice the area. My concept is numb the heck out of pain. If it is inflammation causing pressing on a nerve or something, it would help.
Judy
Done YaY
by chelet027 - 2011-10-27 12:10:00
Well seen the cardo dr today he scheduled me to surgery on Tues. It's coming out. They however didnt find the source of the pain or why im having it. So he said the best thing to do is get it out. Then he will monitor me and try to keep my heart as strong as he can with meds. If for some reason my heart would start to weakin then he said he will go back in at that time and put it back. But for now it's coming OUT !..... He said he has never seen this type of reaction before but with my pain level as high as it is right now and i cant do anything but scream and cry when it hits me he says it should def. be removed. So 6 more days of pain till surgery on Tues. And I can't wait. best news i've heard in 2 weeks. But thought I'd drop a line and tell everyone what he came up with...
Chelet027
a bit late
by polrbear - 2011-11-03 01:11:57
OK, I did not comment before your surgery was scheduled. Sorry for the late reply.
My first device was problematic as well. It doesn't sound like I had quite the issue you did, but enough.
I had pain from the get-go, but it was managed with over-the-counter analgesics while I was ordered to limited exercise (commuter bicycling, walking, and modest hiking). Within a few days of being cleared to run again by my new electrophysiologist (my incident was not quite at home), I was in agony. Also, since it was placed on my left side and I prefer to sleep on that side, my sleep was lousy, too. [A medication issue also affected my sleep, so I was doing horribly for a few months.]
We tried physical therapy, massage therapy, acupuncture, medications. Things only got worse. Halfway through this, my doc changed the medication that was bothering my sleep (helped overall, but did nothing for my pain). My intermittent pain conveniently developed during that appointment; he could see that I wasn't able to focus on our conversation and finally knew how intense it could get. We scheduled a date for surgery--not yet knowing what needed to be done.
It was clearly tissue-related pain, so it was no comfort that we couldn't do an MRI.
The date of surgery crept close. I worked on a telemetry floor at the same hospital as my new EP, so I felt guilty chasing him and his NP down in the hallway to discuss medications and dosing. It was unpleasant, but I was fortunate that it made my point more strongly. I thankfully did not need to advance to using oxycodone, but hydrocodone was given, with other things that could be taken before work.
My interrogation a month before the surgery date finally showed something--not enough to treat my problem, but it did tell us that the wrong type of ICD was implanted. OK, we now knew that it was going to be a removal or a complete replacement. There was some strange comfort to that, even if I was still very nervous.
The morning of surgery, I gave him my guidelines about how to handle things based on what was found. I was in tears trying to explain all of this, but he is thankfully a physician I dearly trust. I woke up from anesthesia with two scars, immeediately realizing he had put the new device in me on the other side (as discussed and preferred, despite the significant scarring).
I didn't speak with him until that evening. Very quickly into our conversation, he blurts out, "I'm so sorry--we should have done this months ago." It seems the previous EP placed my device in a way that's a poor choice for someone young and athletic, but a manner perfectly acceptable once someone reaches an age where muscle loss becomes obvious. I.e., I was treated like someone at least twice my age at the previous hospital. As he took out the old device, there was a marked impression left in my pectoral muscle from the first device that took days to clear up.
My old side still hurts occasionally, but it's far more tolerable now. My new device can get uncomfortable once in a while, but that's about it.
A few tips I've learned from this:
-do try a few ways to manage the pain (I might have lost significant range of motion on my left shoulder if I hadn't done physical therapy)
-don't be afraid to get a second opinion
-try to keep one physician prescribing all of the pain medications so they can gauge its progression and avoid undesirable medicartion combinations
-be polite yet vocal about what's going on.
I hope Tuesday went well.
Dustin
You know you're wired when...
Your ICD has a better memory than you.
Member Quotes
I consider my device to be so reliable, that I never think about a failure.
chelet027
by Rebecca - 2011-10-21 03:10:07
So sorry to hear about your pain. I too had painful implants. I've had 3 now and the first was when I turned 30 and it was done cosmetic behind the pec. I still have ocassional neromas (little electronic sensations on the skin) around the incision line. The severity of the pain was never so bad that I had to take pain meds though. I think I must be fortunate to have a high pain tolerance. I still feel my interogations and have found a great arrhythmia nurse who respects my phobia during my check ups and only runs them 2-3 beats. She say's that is all that is necessary. If xrays have proven to show that your leads are intact, then I wonder if there is nerve entrapment in scar tissue. It sounds like you have exhausted many avenues but it may warrant a second opionion by another electrocardiologist from another facility. My only other thought is the possibility of CRPS (complex regional pain syndrome, also know as RSD). This is far fetched as there is not enough research to support CRPS after pm placement. It usually occures in extremities (hands/arms/feet), but maybe. Keep us posted. I hope you get relief soon.