Still in pain, still not sleeping.

Hi.  I haven’t written lately because I am so bummed about feeling lousy that I didn’t have the heart to even talk about the whole mess. I am still in the same pain I wrote about earlier. It has been since 27 September and the pain I get from my shoulder and pacemaker colliding if I move wrong in my sleep or while I am working is not getting any better. It is still bad enough to make me throw up.

Who do I need to talk to about this? The EP people, cardio guy, my general doctor? I am just getting so tired I haven’t slept though a whole night since this thing was implanted. My pain is hard to control because I can’t take aspirin or Nsaids because of coumadin and no Tylenol because of Hep C. Everyone is acting like I am drug seeking when all of these conditions are fully documented in my record. I just want to rest enough to heal; or if I need more surgery to move the pacemaker - who do I talk to about that?  I have to work, the mortgage doesn’t pay itself and I need to be healthy and rested enough to do so.

Sorry to sound like a whiney brat, but I am so tired of hurting.

Kathy

8 Comments

Dear Kathy......

by Pookie - 2011-01-05 10:01:18

I am SO sorry to hear that you are still in pain.

My opinion is this: go back to whoever put your pacemaker in and ask that it be repositioned as soon as possible. That's the only option I can see that will work.

I had to have my pacemaker repositioned after it decided to take up house in my armpit!!!!! The surgery was no where near what the first one was like, the repositioning surgery was a heck of a lot easier and the recoup time was faster too....and SO worth it.

You cannot continue like this because 1) you're in pain 2) you're bummed out and probably stressed and/or depressed about your situation and 3) you NEED you sleep.

Kathy - dear dear Kathy - please, do not think for even one millisecond that you are "whining" - we do not think that at all, we are all here to support you!!!!!!

Again, it's only my opinion, but if I were you - I'd demand that your pacemaker be repositioned. I've been where you are and it's not going to get any better by doing nothing, right?

And don't concern yourself for a moment about medical staff or whoever is thinking that you are "drug seeking" - those people don't have a freaken clue what you are going through because they are not in your shoes.

Call your surgeon:) and get your life back.

Hugs,
Pookie

I hear you...

by AmyS - 2011-01-05 11:01:41

Hi Kathy,
I so know what you mean about feeling whiney. I'm having a lot of pain issues as well (6 weeks later) and don't know what my next step will be. Pookie, it was actually lucky that you had a visible misplacement of your pacemaker bc dr's could see the problem. Otherwise, trust me, the doctors just stonewall you and tell you it's all in your head or you're having panic attacks. Any of us who are in pain and having complications are depressed, stressed and sleep-deprived and this makes it all the more difficult for us to make a case to our dr's.We don't come across as credible or even deserving of anything further. We appear to be attention-seeking, but we just have questions and want to know what's normal and what's not. And, frankly, they don't really know which pain is normal or not because most don't have PM's.

I am right in Kathy's shoes and would love to hear from one of the medical types on here if a general surgeon, vascular surgeon or plastic surgeon would do any work on another surgeon's PM site, without getting editorial comments from said surgeon.

Hi again:)

by Pookie - 2011-01-05 11:01:50

I received my pacemaker on November 2 of 2004 at the age of 42. Within 3 weeks my pacemaker migrated to my armpit.

(This was after 4 surgeries for my pacemaker - which were all within 10 days; one of which was to save my life; as I died - not once, but twice, which is another story - thanks to the vascular surgeon who implanted my pacemaker. My story is featured in the Pulse Newsletter 2009).

I went back to the vascular surgeon (who implanted my pacemaker) countless times showing him that the pacemaker clearly moved & that I was in pain - he TOTALLY dismissed me. So, I gave up and thought I'd have to live in pain for the rest of my life, which was on top of the deep depression I fell into after the 4 surgeries and dieing twice. I gave up ALL hope.

Then I got angry and knew I had to become my own advocate and 5 months later I finally found a Cardiac Surgeon who clearly could see that the pacemaker had migrated and he repositioned by pacemaker within a week of seeing him.

The vascular surgeon just happened to be a jerk and couldn't be bothered doing another surgery; even though I complained to him numerous times. It was a very hard time for me mentally and I too had absolutely no sleep until I found the Cardiac Surgeon.

I've been dismissed so many times by the medical field I could write a book. I had what was diagnosed as "migraines" for 13 years...I knew it wasn't that because I was in pain 24/7 ~ finally after being sent to the Mayo Clinic in Minnesota and taking that report to numerous ENT doctors here in Canada - I finally found one who agreed it was Eagles Syndrome (a very rare disease) and he operated on me this past March.

I know this has absolutely nothing to do with a pacemaker, but I certainly know what it's like to live in chronic pain, chronic depression and lack of sleep:) just because my pain wasn't visible to the naked eye. I too felt like a lot of the doctors thought that I was just looking for drugs, but in the end I had to put myself first and not care what they thought - my quality of life was more important than what a few doctors thought.

I guess what I'm trying to say is this: when anyone finds themselves in a medical situation and they feel they are not being heard, you have to become your own advocate and keep going to doctors until you find one that will actually listen. I am not the first person this has happened to and I'll certainly not be the last either.

Take care,
Pookie



Kathy........

by Pookie - 2011-01-06 01:01:34

stress can be awful...believe me, I had full blown panic attacks for the first 2 yrs because of what I had been through, only later was I finally diagnosed with Post Traumatic Stress Disorder because of dieing twice:(

depression is evil as it can cause everything from profound exhaustion to mystery aches & pains.

I don't know where you live or how your medical system works, but I personally would start with your cardiologist or family doctor and get he/she to refer you to an EP as soon as possible.

Don't give up hope Kathy. I know it's hard, but you have to believe everything will work out for you in the end. However, you have to be your own advocate (like I mentioned before) and sometimes we as patients have to really push to be heard. It's sad, but it happens.

Just remember: the squeaky wheel gets the grease.

Hugs,
Pookie

Fire the SOB

by sarge - 2011-01-06 01:01:37

I would fire your Doctor plain and simple....there a dime a dozen and after all the pain and problems why keep paying him or her money. Thats just me, I don't give too many opportunities to keep giving bad info or not taking care of my needs.

Fire the SOB

by sarge - 2011-01-06 01:01:38

I would fire your Doctor plain and simple....there a dime a dozen and after all the pain and problems why keep paying him or her money. Thats just me, I don't give too many opportunities to keep giving bad info or not taking care of my needs.

Such Courage!

by agelbert - 2011-01-06 02:01:00

I am impressed with the courage and bravery of you kathy and Pookie.
The insensitive attitude of some medical professionals is shameful. What ever happened to "First, do no harm"?

What is it with these people that think they can talk you out of your pain? I almost died because a doctor told me I had gastritis whe I had an exploded appendix. He psyched me out so much that, after giving me a shot, all the pain vanished only to return with a vengeance several hours later when I was rushed to the hospital and, with another doctor, sent to surgery to remove my appendix.
Don't EVER let anyone tell you how you feel isn't real. I know there is a school of thought out there that doesn't want to 'reward' patients who are in pain. It sounds like a lot of buck passing and shirking of responsibility, not to mention insensitivity. Do they think it's fun to complain to medical professionals that we all know reject even the hint that they messed up?
Remember that YOU are the patient and the doctors work for you. If one doesn't listen, go to another one. And when you get relief, inform of your bad experience like Pookie did. Doctors make a lot of money. Their vaunted position requires that they accept the consequences for their mistakes.
God bless you both.

Thank you, so much

by kathykat11 - 2011-01-06 12:01:16

Pookie and Amy S. I can't stop crying... from sheer relief this time. I am so glad to find someone who knows. what I am going through. Am EP put it in and has moved to a different practice. Do I go to the same group. or have my cardio contact them or just keep callin ther Ep office until I gett an EP to talk to me I have only been to the office for one appointment. the first one after surgery. I think Pookie is right that it is better to get it done asap because I am going to have to be heading back to work soon. and need time to heal and rest up. Thank you for your support. It is easier to be strong if i know I'm not a nutty wuss.
Kathy
I will keep you updated on my results.

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Your old device becomes a paper weight for your desk.

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