Severe ME and surgery

Oni

Oni

Established Member (Voting Rights)
After a long saga for the past 8 months involving chronic infections and adverse reactions to multiple treatments, I am due to have surgery soon, a ureteroscopy, to remove a kidney stone. I would prefer not to have surgery of course but there is apparently no other options given the placement of the stone. I am in discussions with the surgeon and the clinical team about the general anaesthetic, surgery and pre / after-care.

This is a lengthy and exhausting process having to go through details time and time again with different people on the phone and face-to-face. Back and forth calls to arrange beds to be able to lie down for appointments, scans, manage allergies, transport to the hospital and back, deal with general NHS weirdness etc...

In addition to severe ME, I also have MCAD, EDS and PoTS diagnosis and the team generally have a limited understanding of the conditions. But so far I have been treated with kindness and empathy, which is a bit of a shock to tell the truth!

They have asked me to give them any relevant information. I am aware of this Hospital Booklet - Information for hospital staff regarding treatment of patients with M.E. (Myalgic Encephalomyelitis) and this patient information page Royal College of Anaesthetists - ME/CFS and Anaesthesia.

Does anyone know if there are other documents out there? Has anyone had a general anaesthetic recently? And what information was useful to the surgeon, the anaesthetist? Anything else I should consider?
 
Oni said:
Does anyone know if there are other documents out there? Has anyone had a general anaesthetic recently? And what information was useful to the surgeon, the anaesthetist? Anything else I should consider?
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@Oni, I think it is important to be aware that a lot of the 'patient information' documents on the internet in this are are unreliable, often unnecessarily frightening and in many cases dangerously misleading. The Hospital Booklet you mention contains a lot of misleading, unsettling and incorrect statements about ME/CFS.

The truth is that we do not really know anything about increased risks with ME/CFS in terms of anaesthesia and surgery and there may well be none. I suspect that also applies to diagnoses like MCAS, EDS and PoTS in this context.

The main problem, that is clearly real, is that of patients with ME/CFS not being able to tolerate noise, light, other stimuli and the hospital environment in general. The answer to that would seem to be just staff being sympathetic and as helpful as possible in keeping stimuli under control.
 
I had major surgery when severe. Nobody knew anything about ME/CFS at the hospital. The anestheologist was kind enough to read up on ME/CFS. He told me he could not find a lot of information about anestheology and ME/CFS, but the little he found said that meds with adrenaline should be avoided if possible, and that patients with ME/CFS can feel better if they receive a lot of saline IV.

My surgery went fine. I received a single room and the nurses were kind enough to respect my need for quiet and darkness.

Wish you the very best! Good luck.
 
For me personally the big breakthrough was asking for no adrenaline to be used. Also for non histamine releasing drugs if possible.

Also the timing of the operation. At my local hospital they book a large group in the early morning and then work there way through us. This means usually for me, a long time sitting in a waiting room or lying on a bed feeling sick with nausea and very unwell as all my mornings are like this.

It would have helped me personally to be scheduled for a specific time and to skip the noisy, overly light waiting room.

Also with no adrenaline being used I now come out of the GA in more pain. I need some pain relief straight away and recovery room staff need to be aware of this and ready. I take my own now after checking with the doctor.
 
I was admitted to hospital and had a heart examination under anaesthesia. The anaesthetist visited me the day before and was receptive. I would reiterate the no adrenaline, and saline to be given. I had a letter from Dr Bansal advising saline so that was followed. I had no reactions and felt very well after the procedure which was a relief because I tend to be reactive. I feel better when given saline.
I had a vague memory of the MEA producing a leaflet on anaesthesia and found a link.
https://meassociation.org.uk/literature/items/anaesthesia-and-me-cfs/
 
Jonathan Edwards said:
I think it is important to be aware that a lot of the 'patient information' documents on the internet in this are are unreliable, often unnecessarily frightening and in many cases dangerously misleading. The Hospital Booklet you mention contains a lot of misleading, unsettling and incorrect statements about ME/CFS.
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I agree and I wasn't actually planning to forward that particular one as I felt it would be counterproductive in terms of taking my needs and concerns seriously. It's hard hitting and yes it's a frightening document for patients that ultimately doesn't help us I think. In the end I did not finish reading it in order to protect myself from anxiety. Thank you for bringing it up @Jonathan Edwards , you've just confirmed my instinct was correct on that one.


Yes trying to organise a low stimuli environment, avoiding adrenaline and histamine releasing drugs, no use of latex and other allergens and asking for saline are my main goals at the moment. Thank you for sharing your experiences @CorAnd @ukxmrv @Binkie4 , it's really helpful and giving me confidence for the surgery. And a boost to keep asking for what I need.
 
@Oni, this post from @obeat on another thread may be helpful for you.
It seems very sensible to have a list of your specific needs in such brief and clear form to take with you to discuss with the staff.
https://www.s4me.info/threads/a-new...oing-to-hospital-mea.40503/page-3#post-577599

obeat said:
I needed surgery in 2021 and fortunately my local hospital has single rooms in the surgical ward and I also have support from my two sisters.

This is the checklist we used when talking to staff. All the information that is given to the admitting nurse is automatically transferred to the ward, but my admitting nurse also talked directly to the theatre staff when she handed me over.

Care plan

ME/CFS is a chronic debilitating illness of unknown aetiology.

1.NICE guidelines 2021, severe ME/CFS patients need a single room( if possible) and telephone appointment/home visits to prevent deterioration.

2. Needs to lie flat at all times with a pillow under knees and arms.( orthostatic intolerance) Roll transfers to reduce muscle usage.

3. Low level light/ sound needed. Use eye masks and earplugs.

4. Finds conversation difficult so essential information only.

5. Finds chewing/cutting up food exhausting so meals of porridge, soup, custard etc.

6. Prefer to be washed and dressed by my sister as both touch and pressure can be painful.

7. Bladder care. I am not incontinent but it would reduce general weakness and post-exertional malaise, if I could use incontinence pads.

8. Bowel care,bed pan.

9.If possible do not use MRI scans as they take too long and are far too noisy.

10. Anaesthesia

Beta blockers cause prolonged drop in blood pressure,heart rate and cognitive function.
Need anti nausea drugs.
Fasting can trigger a migraine. It took 10 months to recover from previous surgery.

11. Facilitate a rapid discharge as soon as the doctor says I am medically fit to leave to prevent deterioration.i.e.in morning rather than wait for the usual afternoon discharge..

The list is very basic but it covered my care needs in a surgical ward. At home I am not as disabled as this but deliberately planned for the worst day of symptoms I have experienced.



There were complications with my first operation so I ended up being acutely ill for 48 hours on top of post-exertion malaise, but weirdly euphoric for the first 24 hours because I'd had so much morphine!

In general staff were accommodating, some were curious ,some were indifferent but only two were “hostile”.

My other tip is to have a small bag that you can keep on your bed with essentials like phone, reading glasses, tissues hand sanitiser.

The tea lady said to me on my second day post op “ you lie so still you never move” and I thought to myself she should have been a doctor with her powers of observation!!!
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I hope all goes well for you.
 
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