Ongoing investigation

[Nomis21]

Hi,So iam still struggling daily after my pace and ablate in July 2022 after being diagnosed with Wolff parkinson white syndrome many years ago.

I've had numerous tests, MRI scans, bloods, angiograms and the results have all come back ok.

My current health issues are high blood pressure, feeling really cold in hands and feet (turn purple) out of breath upon exertion, feeling my heart is pumping under pressure, chest heaviness discomfort, irregular heartbeats Upto 190bpm (captured on a home device) tiredness, brain fog, lightheaded/dizzyness and a feeling of lack of blood flow to my lower body causing weakness also had sharp and dull aches in left arm but not sure if this is the pacemaker causing this due to where it's sited?

I was prescribed bisoporol after my procedure but came of them (own decision) due to thinking this med could be causing the health problems, GP agreed as he didn't understand why I should need bisoporol following a procedure that was supposed to fix the problem.

Now been referred to the asthma clinic, my peak flow reading Is around 350-400 and was told it's below what it should be for a 51yr old.

Nurse also stated that anxiety could be the main cause and I should try breathing exercises. In the meantime I have been prescribed a inhaler and been asked to carry out more peak flow tests at home.

Trying not to sound negative but my health issues only became apparent post my surgery and have been life-changing for me, being a active person pre surgery and now I can't go for a walk with out feeling discomfort, daily activities I struggle with.

The nurse in the asthma clinic said the pace and ablate procedure may have exaggerated a underlying asthmas/anxiety condition.

I suffer everyday and can't help but feel that anxiety or asthma isn't the problem but I do hope I'm wrong as I know it can be managed.

These conditions have taken it out of me physically and mentally And I struggle at work and in my personal life.

I really do wish I had more knowledge about AV ablation and pacemaker insertion before I accepted the procedure.

Maybe breathing exercises, an inhaler and anxiety meds may be the answer but I have doubts but more than willing to try.

Suppose what I'm trying to say is my experience but I feel more at risk now than pre surgery even though I suffered from bad palpatations episodes and the odd flutter/irregular bests, I may have thought twice beforehand if I had known how things might have turned out, crystal ball and all that!

Any thoughts welcome

[CDreamer]

Hi - very sorry that you are experiencing this.

I just want to check a few details with your please. Firstly if you have had Pace & Ablate you would have had an ablation of the AV node which is your heart’s natural pacemaker and would be completely pacemaker dependent. I cannot believe that your pacemaker clinic would have set a HR of 190. So how come you are experiencing HR of 190? So I am confused?

If you had an ablation for WP or AF or AFl that would be a catheter ablation of various parts of the heart such as the Pulmonary veins - as you describe in an earlier post. IF you had a catheter ablation it sound as though it has not been successful in eliminating your arrythmias. You have already had a reply from Tracy at Admin explaining that catheter ablation will burn the inside of the heart to form scar tissue which stops the rogue signals causing the fibrillation but this doesn’t always work first time and arrythmias will return.

May I suggest that you get a clear idea of what procedures you have had so that you can then return and question your doctors about further treatments. If you need help and support to determine which procedures you have had then Admin do have a helpline you can ring.

Best wishes CD

[Golfer60UK]

Good morning, sorry to hear your problems. I had a pace and ablate 2021 which went well and allowed a return to normal activity with only apixaban for blood thinning. Do take other meds for other issues.

My pacemaker is set at 70 min to 120 max so am surprised your check of 190 bpm, you should check with the Cardiology what settings yours is at.

I have had one problem since the process which began with my left hand and arm swelling to an extent that I had to remove my wedding ring and could not fasten a watch on my wrist. The result eventually was identified after a CT scan which identified a 'stricture' in the vein carrying the lead from the pacemaker to my heart. Discussion with the Cardiologist was to hold my left arm up high as blood flow will naturally find another way to compensate.

This has worked for me and the arm is now back to normal plus the pacemaker seems to be operating normally

Best of luck

Dave

[irene75359]

Hello, I don't have any experience so can't offer any advice but wanted to wish you the best of luck in getting some answers as to why you are feeling so unwell. It must be so disappointing after undergoing what you thought was going to be a procedure to improve your health.

[Carew]

Thank you for mentioning Wolff Parkinson White syndrome!

Not diagnosing by forum ( ) but very interesting to me. Definitely has me thinking.

My heart rate, by home devices with similar shown by hospital ECG, can range 43 to 205. Sometimes jumps from 60 to 160 between one reading and the next, seconds later, and vice versa.

Sorry - I have little to add by way of help or support. But I wish you well.