I feel sad :-(

I would seek immediate help

by Gemita - 2024-09-15 05:51:14

Absolutely not normal to have the level of pain you are describing.  In the very least you need adequate pain relief to see if this helps and further investigation to see what might have happened?  

I would go through A&E (I know all about the long waits), but it could get you treated earlier or help to find what has happened to cause such pain?  Even if your wound has been given the All Clear from photos, you need to be seen in person quickly for a proper assessment and perhaps some further investigations, like an X-ray to see if the leads and device are in the correct position.

I would go through A&E, or return to your device clinic for some answers on Monday.  Personally, I wouldn't wait a few weeks to be seen with the level of pain you are describing.

Thank you for replying x

by ItsMeSvT - 2024-09-15 10:05:52

They discussed things in their team meeting last week and apparently three cardiologists said that because the wound looked normal, I should wait to see if it settles down before my appointment. 
I'm worried if I rock up at A&E they'd think I was wasting their time but I can barely function anymore.

I'm feeling that because most people don't seem to have problems after insertion, they think I'm being dramatic when in reality, it's 2pm and I've not even managed to get dressed today because of the continual pain which is now making me feel sick and completely exhausted 

Two weeks

by piglet22 - 2024-09-15 10:13:05

Is this really the state of the NHS that you are in pain and can't be seen?

I fear it is.

It doesn't need anyone special to look at it. The only people who ever looked at my wound over the years were the physiology technicians. It's usually no more than a glance.

If it's a post op wound pain and nothing to do with the device, even an Urgent Treatment Centre could advise.

It's hard to think that a large hospital, assuming that's where your op was done, can't spare 10 or 15 minutes to look. Even a complete interrogation doesn;t take long.

One thing you could do if you have been issued with a home monitor, is to do an upload, tell them you've done it.

If symptoms are really that bad, I know what I would do

by Gemita - 2024-09-15 11:03:52

I would go back to your team tomorrow (or to A&E today).  

Looking at your wound from a photo cannot possibly give even three cardiologists in their team meeting, the information that they would need to make an “informed” decision on what to do about the level of pain you currently have?   In the very least they need to examine you and the position of your device and leads and do any tests they feel are necessary to find the cause for your severe pain and to know how best to manage it.

If your pain levels are so severe that you are unable to function, in my opinion that is your body warning you that there may be an urgent problem that needs sorting now, not in 2-3 weeks time.  In any event they may need to control the pain better to allow you to function.  They gave me a course of neuropathic pain meds to control nerve pain from the implant.  

Did you have a look at the Survey Selwyn posted on your earlier message.  From that survey you will see that you are definitely not alone in having higher levels of pain, far in excess of what our doctors tell us would be the norm.

In your shoes, without hesitation, I know what I would do xx

xray

by Tracey_E - 2024-09-15 11:47:12

Has anyone done an xray to show how much it's moved? I understand them avoiding another surgery due to infection risk and giving it time to settle down, those are two perfectly normal and reasonable suggestions, however if it's moved that much, and hurts that much, it really should not wait. Sometimes you have to be the squeaky wheel. The common protocol (wait and watch) isn't necessarily the right path for you. 

Seek Help

by MinimeJer05 - 2024-09-16 09:50:25

Hello,

I just want to echo what Gemita said -- you should seek help from your teams immediately. That type of pain is unacceptable and should be treated. I am not saying that there is anything wrong with your device or implant (we aren't doctors), but nobody should have to suffer like that, especially when this procedure is generally one of those "you'll be sore for a few weeks, but then back to normal" type of situation.

I am sorry to hear that you are experiencing pain. I am certain with time and intervention, it will pass and you will return to normal. I have had bad pains from other heart-related surgeries and it was easy to slip down into those hopeless thoughts and depression -- all it takes is a little time and some help from those around you.

Best of luck with everything!

Jer

Constant Pain from Pacemaker site, feeling sad.

by Selwyn - 2024-09-17 12:12:31

You will see from the survey that a fair number of us suffer pacemaker pain. Your doctors need to understand this ( the study was published in the British Journal of Cardiology).  

I would be very careful about taking codeine. It is a central nervous system depressant. If you take it regularly it is less effective ( tolerance). If you have low mood, codeine may worsen this. On the other hand there are medications that help pain and low mood that you can take regularly.

If your GP is happy with your implant site, then the next stage is to consider pain relief and your mood. The two can go hand in hand. The NHS does have specialised pain clinics. 

I am sure your GP would be able to help you further.  Occasionally there may be nerves trapped in tissue at the site of implantation etc. You definately need a face to face consultation.

If you look at  the survey,  see what other people have found helpful for the pain. Sometimes physical things ( heat, cold) are extremely helpful ( I have just perforated my ear drum and find hot compresses so helpful for the pain).

There must have been good reason for the pacemaker - mostly these are life saving.  In any event most complications do eventually get sorted and the quality of life for us is then improved.

Constant psin and feeling sad

by Insane Bolt - 2024-09-17 12:32:56

Hey, so sorry to hear about your pain and the sadness is has caused you. I had my PM implanted on 13 June this year and had constant stabbing pains that drove me to just below the point of insanity. Went back to the Cardio Thoracic surgeon twice but neithet him nor his pm technician could find any fault. I felt like i haf been a bother, drama queen- you name it. Called his office constantly but I felt they grew tired if me 'moaning' 'bout nothing. He advised that I should keep taking the anti-inflammatory meds. After what felt like ages, it was picked up that the LV lead moved and that was the cause if my misery. Had it repositioned and feels so much bette. Please do not lose hope. Keep going back. You are in good hands here, as a newbie, this forum changed my life. May your sadness turn to joy and your pain disappear. Hugs and all of the best🤗