Response to Afibbers

I posted a response to a question about Mini maze procedures on the Afibbers forum.  http://www.afibbers.org/forum/list.php?9

Afibbers.org has a very negative view of the mini maze procedure, which significantly contrasts with the other american site, my afib experience https://myafibexperience.org/forums which is very positive.


Post

I live in the UK.  This year I was part of a clinical trial for treatment of Persistent AF.  CeaseAF, http://www.hra.nhs.uk/news/research-summaries/cease-af/

This is an international study, and the Sheffield cardiology unit is the only centre involved in the UK

The CEASE AF study will compare the results of a combined epicardial surgical plus endocardial catheter technique versus a standard endocardial catheter ablation technique for safety, efficacy and quality of life for patients with persistent or long-standing persistent Afib.”

This involved a mini maze procedure in April, using an Atri-clip to close the LAA followed by an RF catheter ablation a couple of weeks ago.

I was pleased to be selected for the trial; my waiting time was shortened and I believed that the mini maze was likely to have more of a chance of success than multiple catheter ablations.  The follow up RF ablation was also pre-planned to be within six months of the mini maze, so I would not have to wait for the first ablation to fail and then return to the waiting list.

Under normal circumstances, I travel extensively for work, teaching technical courses to adults.  However in 2017 my AF and particularly bisoprolol was affecting my concentration and ability to be on my feet for an entire day, so my duties were changed.  I was then working mainly from home, developing course material, new products and meeting with industry figures on future developments.  This is much less stressful than my usual job.

The mini maze took place in April; I had no complications, but the recovery was still difficult.  Three entry wounds in each side and two collapsed and re-inflated lungs left me feel literally like I had been hit by a truck.  I was dosed with morphine, followed by oxycodone, tramodol, codeine and finally paracetemol.  I had to stay for two nights in the hospital.  I think that this was the most miserable I had felt in my entire life.

At home, I was eventually able to walk around the block on day four and was able to walk up to up four miles by day fourteen.  On day seventeen, I went back to work on light duties; marking and development.  I felt much better than before the operation; I was generally in NSR and apart from a few small blips my heart was behaving.  I did think later that I came back to work a little too soon and should have taken an extra week due to the level of fatigue I was feeling.  Before the op I was extremely fit (an athletic life is what caused the AF in the first place); I hate to think of the impact on an elderly or infirm person.

After three months, the surgeon was very happy with his work; he saw nothing to worry about and scheduled the catheter ablation.  He was expecting only minor work to be required.

In October, six months after the mini maze, I went for the catheter ablation.  I had cleared my diary for the rest of that week and the two following weeks to ensure that I could be fully rested.

The procedure took 4½ hours; the EP discovered electrical reconnection on two of the pulmonary veins, so ablated these, performed a CTI line for Atrial Flutter and added a box lesion set on the posterior atrial wall.  Atrial flutter had never been mentioned to me, but I understand it can be caused by the minimaze.

I had no recovery problems, except for a slight bleed at the catheter site in the groin, which meant a further couple of hours laying down flat. I was able to leave hospital the next day.  I had no trouble walking and made the deliberate decision not to get back to exercise too quickly.  Within a week, I was feeling better than I had for the previous year and a half; I cancelled my last week of sick leave and returned to work earlier than planned.

I can’t make a conclusion based on just myself, but the mini maze (it is only minimally invasive when compared to open chest surgery) was a terrible experience and the catheter ablation was easy.  Hopefully in a few years the results from the CEASE-AF study will add to the data and help define the procedures that can give the best outcome, but unless the mini maze is shown to be streets ahead, I would not rush to recommend it to people.

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Almost back to work

Ablation +13 Decided to do no exercise today

Last day before return to work; I have the AF support group at NGH between 10:00 a.m. and noon, but the surgery has scheduled my MED3 interview by phone at 10:55 a.m.  I decide to attend the AF meeting, sitting near the door to be able to answer the phone.  I arrive at the hospital at 09:35, but can’t get a parking spot.  I camp out in a car park but no-one returns to collect a car.  At 9:05 I note that even if I get a spot in the next five minutes, I would have to disrupt the meeting two or three times and decide to return home.  In the event, the telephone consultation doesn’t take place until 3:00 p.m.

The leaflet from the hospital said that I should not lift heavy weights, play squash or cycle for ten days; it does not specifically say that I can do this on day 11 but it was inferred.  All the advice from most former patients suggests that they have been told to take it very easy.  Some claim to have been told that early exercise had adversely affected their ablations, resulting in electrical reattachment of the pulmonary veins.

I have decided that I will take it steady; none of this may be true, but why risk it for the sake of a couple of weeks.  So, no bike until Saturday (Ablation day +17) and then, just an easy trip to Staveley basin and back.  I have four weeks until my review with Dr. Hunter. I will await his advice.

Rehabilitation

I am still feeling much better than last time.  So much so that I have not bothered to record my recovery walks on Strava or even to use an HR monitor.  I left the hospital on the afternoon of Wed 4th Oct.

Thu 5th Rested

Fri 6th Into town back to the local supermarket and home. 3 miles

Sat 7th Rainy walk through the park and streets. 2½ miles

Sun 8th Walk through the park and streets. 2½ miles

Mon 9th Stayed in all day for fridge delivery

Tue 10th Took car to Kwik-fit, walked to surgery and collected the car. 3 miles

Wed 11th Walk around the Ashgate fields. 3 miles

Thu 12th Took car for service, walked to town, back home and then to collect car. 4 miles

Prescription pre-payment

On Thursday 5th October, I received a notification from the NHS that I had incurred a penalty charge for claiming a prescription for which I had no valid prepayment certificate.  I knew this was not the case, and had the email receipts for all my certificates stored in my Outlook account.

There were a variety of methods available to challenge this: webpage response form, email or phone.   The link to the web page did not work; using menu for the pre-payment certificate site, I found a beta version of the page, but decided not to risk it.  I thought it would be better to phone.

I had all the information ready: certificate number, receipt reference, payment reference and date and time of email responses. The call handler asked for my personal details to verify identity, but said that he could not process any of the details that I had as he had no access to these.  I would have to either complete the webpage or send an email.  He also pointed out that if I did not receive an answer within two days, I would have to resend, in case my mail had been lost in the system.

I failed dismally to be polite in response.  Not his fault I know; but what was the point of the call centre if all they could do was point me to the same email address as the letter.  The fact that the webpage did not work and he seemed to be telling me that the email system may also have problems did not fill me full of confidence.

I suspect that prescription fraud is rife and this contractor has managed to reach its (easy?) targets by penalty charges and so have not needed to develop a useful system to manage the problem.

Recovery

I am feeling much better than after the maze procedure, but the bruising is quite extensive, but not particularly painful.  I am very tired, so decided to  take next week off work; the was pre-agreed with work, so not a problem.  My sick note runs out tomorrow, but cannot get an appointment with the Doctor until the 16th, but I am assured there will be no issue with backdating it.  I explain that this will be OK, but I have an appointment at the Northern General Hospital between 10:00 a.m. and 12:00 p.m.  I am told this will be taken into consideration and will be allocated a phone appointment in the afternoon.  I checked later; the appointment is for 10:55 a.m.

Apologies to the sensitive for the picture of my thigh below.

I have similar but lighter bruising on the left leg and another on my right wrist from the blood pressure sensor.

 

Bruise

Migraine aura

I was aware that procedures involving a trans-septal puncture sometimes result in patients getting a migraine aura; as an occasional migraine sufferer, I was prepared for this.  During my lie flat recovery period I noticed that I was getting a dull area of vision in the centre of my field of view and if I looked at a bright part of the ceiling, just off centre, I could see wavy lines that looked a little like floating cells.  I assumed that this must have been the aura phenomenon people talk about.

My migraine auras look nothing like this. For me a migraine starts with a blind spot in the dead centre of my vision.  A few minutes afterwards the sight there returns and I get a visual disturbance just to the right and below centre.  I know that if I take a couple of paracetamol before this appears I can avoid the migraine.

My migraine aura is difficult to describe, but it is a little like a jagged teardrop on its side, filled with little square boxes.  Each box is filled with lines, some vertical and some horizontal, like a TV test card.  The lines are alternately very black and dazzling white but sometimes give an impression of being blue or red.  Each line flashes, with the black and white changing places a couple of times a second.

I had dozed throughout the day on the effects of General anaesthetic, but had had a deep sleep between 10:00 p.m. and 1:00 a.m.  At 2:00 a.m. I was awake and suddenly noticed a vision disturbance; there was a tiny black cross in the centre of my field of vision.  After a short while, this had disappeared and was replaced by something similar to my migraine aura.  It was the same as far as the flashing boxes of lines were concerned, but instead of the small teardrop there were two long lines spreading from the bottom right hand corner of my vision going two thirds of the way across and up my field of view.  This lasted two hours before going back to normal; it didn’t result in a migraine headache.

I was fine with this as I had read about it and knew roughly what to expect, but I imagine it could be terrifying to someone unaware of it.

Still in hospital

I was not taken for an echocardiogram the previous night, so I assumed I had misheard and I was programmed in for 8:00 a.m.

The EP came to see me at 9:00 a.m. and told me that it should have been done the previous night, but they were still waiting for an appointment.  He was not expecting any issues, so as soon as I had the echo I could go home.

After several prompts from the nursing station they finally brought a portable echo station down from the ICU at 3:00 p.m. and used me as a teaching aid for a medical student.  I finally left at 4:15 p.m.

Second ablation

Another £25 taxi to get me to the hospital for 7:00 a.m.  I was admitted and all details completed quickly, everybody seems to remember me, the nurse at reception seems particularly pleased to see me.

By 7:45 a.m. I am gowned up and wheeled off to the waiting room outside the catheter lab.  The admission nurse here also remembers my name, but can’t quite place me.  He suddenly realises that I was cancelled from a couple of weeks previously.  I suspect that the Dr in charge of the clinical trial has had a word and ensured that my procedure goes ahead; there are only four days left in the six month window.

I am walked into the cath lab.  I am surrounded by highly technical equipment, lots of white shiny stuff, 50 inch monitors and banks of electronics making ping noises.  I am surprised to use a supermarket style hop-up as a ladder to access the operating table.

It took quite a long time to be prepared, but everything was calm and reassuring.  I was given the anaesthetic and suddenly it was 12:15 p.m and I woke to find the catheter sheaths were about to be removed.  Everything appeared to have gone well.

I wasn’t looking forward to the next four hours of compulsory lying still.  However, I barely noticed it, I was in and out of consciousness and the time was up before I knew it.  I was cleaned up and moved to a normal ward bay.

The Electrophysiologist came to see me and was very happy with how it how gone; he had discovered electrical reconnection on two of the pulmonary veins, so ablated these and performed a CTI for Atrial Flutter (which I wasn’t aware that I had) and a box lesion set on the posterior atrial wall.

It was a long procedure, so he wanted me to stay in overnight.  I would need an echocardiogram at 8:00 p.m. to check for fluid around the heart; as long this was OK, I would be allowed to go home in the morning.

ECG trace a bit wobbly, but no AF and no ectopics.

AF trace 05-10