Impact of surgery on ME/CFS

[Kiristar]

Hi,
I have just received a diagnosis that means that I will require significant abdominal surgery.

Given that major surgery for the same problem and subsequent viral meningitis (aided by a form of GET) is what originally triggered my deterioration into the top end of severe, I am extremely nervous about embarking on round 2 because of how it may impact my baseline functioning.

I've seen a couple of threads asking for pre surgery adjustments, but nothing discussion it's subsequent impact. (if I've missed something pls point me to post # and thread)

I appreciate it will be anecdotal but I would be immensely grateful if anyone, particularly if in the lower moderate to upper severe range, who had an operation, might be able to share their experience of how it affected their ME?

Especially whether they deteriorated, by how much? And did they return to baseline or not and if so how long it took them?

Of course please do only reply if you have the energy xx

Huge thanks to anyone able to help

 

[ukxmrv]

I'm not sure if my experience will be useful as it was a different operation. I had a couple for breast cancer.

My previous experience was varied. Both local and general anaesthetic for wisdom teeth, lump, pre-cancerous condition, endometriosis, etc. These were all disasters resulting in long term deterioration.

The breast cancer operations went far better than anything else. I recovered far better. My ME was 'only' affected in a PEM sort of way.

The difference for me was having an anaesthetist who listened. I asked for no adrenaline to be used, for my o2 levels to be monitored and for drugs that wouldn't affect histamine. Explained how my blocked nose (sinus) could stop me breathing.

It could have been better in the way of timing though. My hospital does batches of patients with one early morning start and long waits. Fortunately this was spent in a hospital bed (everyone did). Compression stocking helped. Easy access to the hospital via wheelchair helped. Short car journey to the hospital helped.

 

[Adrian]

Hi,
I have just received a diagnosis that means that I will require significant abdominal surgery.

Given that major surgery for the same problem and subsequent viral meningitis (aided by a form of GET) is what originally triggered my deterioration into the top end of severe, I am extremely nervous about embarking on round 2 because of how it may impact my baseline functioning.

I've seen a couple of threads asking for pre surgery adjustments, but nothing discussion it's subsequent impact. (if I've missed something pls point me to post # and thread)

I appreciate it will be anecdotal but I would be immensely grateful if anyone, particularly if in the lower moderate to upper severe range, who had an operation, might be able to share their experience of how it affected their ME?

Especially whether they deteriorated, by how much? And did they return to baseline or not and if so how long it took them?

Of course please do only reply if you have the energy xx

Huge thanks to anyone able to help

I thought someone was working on guidance for hospitals when treating ME patients (for other things). I had a feeling that there was something also in the latest training modules along these lines - if so it may be worth directing the ward to these.

 

[Mij]

I posted this study a few months ago.

@Kiristar I don't have any experience post-surgery. I hope your recovery goes well. I've had a couple of ME friends who did well post-surgery. One friend actually felt a bit of a remission after surgery.

 

[CorAnd]

I was severe when I had major surgery some years ago. I did not decline afterwards. I had PEM of course, but I recovered to my normal baseline quite quickly. I hope it will all go as well as possible for you!

 

[Trish]

This thread, and in particular this post might be helpful.
https://www.s4me.info/threads/a-new...oing-to-hospital-mea.40503/page-3#post-577599
I hope the surgery and recovery go well for you, @Kiristar.

 

[Arnie Pye]

I'm at the mild end of the scale for ME. But I've had a lot of surgery over the years and my main problem after the event in each case is that I almost always end up being iron deficient and anaemic, even with surgery that wouldn't be expected to cause major blood loss.

The other issue is that anaesthesia can affect B12 levels, which is bad news if your level is already low before surgery.

Vitamin B12 Deficiency and Anesthesia

Anesthetic with laughing gas uses up large amounts of vitamin B12 and can cause deficiency. Info on B12 deficiency following an operation

www.b12-vitamin.com

Severe Neurologic Deficit after Nitrous Oxide Anesthesia

(Hadzic) Chief Resident in Anesthesiology.(Glab) CA-2 Resident in Anesthesiology.(Sanborn) Associate Director of Anesthesia; Associate Clinical Professor of Anesthesiology.(Thys) Director of Anesthesia; Professor of Clinical Anesthesiology.Received from the Department of Anesthesiology, St...

web.archive.org

The second link above is quite old (1995) and I have no idea how often nitrous oxide is used in anaesthesia these days (if at all).

If you live in the UK then you should be able to read the next two links, but otherwise I think it is blocked :

Anaemia - B12 and folate deficiency | Health topics A to Z | CKS | NICE

Deficiency of vitamin B12 or folate is the most common cause of megaloblastic anaemia.

cks.nice.org.uk

Anaemia - iron deficiency | Health topics A to Z | CKS | NICE

Iron deficiency occurs when the body's iron demand is not met by iron absorption from the diet.

cks.nice.org.uk