Permanent worsening after surgery

Plum

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About 4 years ago I had 2 surgeries within 3 months of each other. Both required general anaesthesia. I prepared well before hand and rested A LOT afterwards. I was around 35-40% functioning before surgery.

It took me about 18 months after surgery to be able to be out of bed for long periods of time - due to my ME being worse NOT the surgeries as they went well and I healed well. I am finding no matter what I do, how well I pace, I am constantly no better than 20-25% functioning but regularly crash/relapse to 10%.

Has anyone else had a permanent reduction in function after surgery lasting YEARS? Does anyone know of what might have caused this permanent decline and if there's ways of improving?

I wonder about things like detox pathways etc? I could tolerate FIR saunas before as well as juicing but now can't.
 

alex3619

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Has anyone else had a permanent reduction in function after surgery lasting YEARS?
Yes. I appear to have been slowly declining since 2012 or so when I had orthopaedic surgery. I am not sure its just the surgery, maybe its associated drugs, including post-op drugs. Its also important to realise ME is post physical trauma, not just post viral, so this might have directly aggravated any ME if present.
 

ebethc

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Could you possibly have a mitochondrial disease? There are many types, driven by different SNPs, and anesthesia is known to make them worse.
what are the mitochondrial diseases that you're referring to? what can be done if it is a mito disease?
 

Learner1

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There are over 200 genes that have been found to produce a wide variety of mito diseases, which create a variety of symproms depending on the number of copies and environmental factors. Depending on what the defect is, there are ways of compensating. And, avoiding mito toxins is a must.
 

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ebethc

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@Learner1

have you ever tried a Normatec, (or similar device)?... It's a pneumatic, sequential compression device... these things have been used post-surgery to avoid blood clots, and more recently for athletes, esp marathoners, for recovery. they're expensive, and there are cheaper alternatives which may be sufficient...

It's a way of forcing the blood to flow, and massaging the muscles/tendons... I get a lot of help from foam rollers, so this would be a way to kick it up a couple of notches...

https://www.normatecrecovery.com/shop/pulse-leg-recovery-system.aspx

...much cheaper alternative:
https://www.amazon.com/dp/B00YHYMSR...olid=2RF2L3R754FL9&psc=0&ref_=lv_ov_lig_dp_it

any thoughts on whether this could help mito illness by forcing blood flow to mito (and therefore nourishing them)?
 

perrier

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Yes. I appear to have been slowly declining since 2012 or so when I had orthopaedic surgery. I am not sure its just the surgery, maybe its associated drugs, including post-op drugs. Its also important to realise ME is post physical trauma, not just post viral, so this might have directly aggravated any ME if present.
Alex
Do you think it means that a second trap opened up, or the initial one still had more drops?
 

Wolfcub

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I think some drugs are routinely given pre and post-op which may not be strictly necessary in all cases:
Morphine
Sleeping drugs
Pre-op medications.

When I had surgery in 1997 I refused all these. I made a quicker recovery and presume, metabolised the anesthetic drugs quicker than many in the same ward.
I had a little pain after I woke up but not in my opinion enough to warrant Morphine so never used it.
We do have the choice about pre-op drugs as well. They are given routinely but you can ask for them not to be given. All I had was the anesthetic.
Sleep drugs too. Not always necessary or advisable.
My mother (aged 82 at the time of her surgery) had a unilateral mastectomy for breast cancer. At the time her cognitive function was pretty good.
They gave her sleep drugs, which she'd never taken before.
She was fine coming round from the anaesthetic, but a couple of days later started making no sense occasionally in conversation, plus she told me she'd been having scary hallucinations.
I told them to stop the sleep drugs and they did. She slept well anyway! No more hallucinations. But her cognitive function was damaged from then on.
 

Learner1

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@Learner1

have you ever tried a Normatec, (or similar device)?... It's a pneumatic, sequential compression device... these things have been used post-surgery to avoid blood clots, and more recently for athletes, esp marathoners, for recovery. they're expensive, and there are cheaper alternatives which may be sufficient...

It's a way of forcing the blood to flow, and massaging the muscles/tendons... I get a lot of help from foam rollers, so this would be a way to kick it up a couple of notches...

https://www.normatecrecovery.com/shop/pulse-leg-recovery-system.aspx

...much cheaper alternative:
https://www.amazon.com/dp/B00YHYMSR...olid=2RF2L3R754FL9&psc=0&ref_=lv_ov_lig_dp_it

any thoughts on whether this could help mito illness by forcing blood flow to mito (and therefore nourishing them)?
No, I haven't tried the device. Mitochondria live in each of our cells so you can't really force blood into them. Hyperbaric oxygen can help get more nutrients into cells and mitochondria, though, and are used by major hospitals on patients for wound healing, including after surgery.
 

ebethc

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No, I haven't tried the device. Mitochondria live in each of our cells so you can't really force blood into them. Hyperbaric oxygen can help get mote nutrients into cells and mitochondria, though, and are used by major hospitals on patients for wound healing, including after surgery.
does hyperbaric create low pressure or high pressure? low barometric pressure completely flattens me... I know hyperbaric has an affect on baro receptors in our body, and I think it's the opposite of what my body likes, but I don't know too much about it..
 

ebethc

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The chambers I'm aware of run between 1.4 and 2.x atmospheres, so they put slight pressure on one's body.
Yeah, I'm hypersensitive to low baro pressure.... I think the sequential compression devices would be better.. plus, cheaper in the long run
 

Moof

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The only thing I can add is that if you had nitrous oxide as part of your anaesthetic (it's not inevitable that you did), it can rob the body of vitamin B12. A friend experienced what she thought was a worsening of her ME symptoms after being given it, and it took a long time to realise that she was actually suffering from B12 deficiency. After a course of injections, she eventually recovered her previous level of function.

It's more likely that your increase in symptoms was caused by the trauma of the surgery than by administration of nitrous oxide, but as it's easy to put right, it's always worth ruling out crashed B12 levels.

I've yet to hear of a doctor or anaesthetist who actually warns patients about this particular side-effect of nitrous oxide – which is worrying, given that it's so widely used in maternity settings and the fact that many women already have significantly reduced B12 stores after pregnancy.
 

allyann

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@Plum I had the same thing with five operations in one year three years ago. I had a significant reduction in functionality and then a gradual decline ever since. I have to have another operation in two weeks and I am scared that it will reduce my already limited functionality (10-20%) but I cannot tolerate the pain I am suffering any longer.
 

Learner1

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The only thing I can add is that if you had nitrous oxide as part of your anaesthetic (it's not inevitable that you did), it can rob the body of vitamin B12.
Nitrous oxide is also neurotoxic according to the attached, which explains the effects of various anesthetics on patients with mitochondrial diseases.

There are more thsn a few prople on PR with mitochondrial diseases, sonit might be worth investigating. A MitoSwab test of mitochondrial function might be helpful.
 

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Lone Wolf

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About 4 years ago I had 2 surgeries within 3 months of each other. Both required general anaesthesia.

...Has anyone else had a permanent reduction in function after surgery lasting YEARS? Does anyone know of what might have caused this permanent decline and if there's ways of improving?
My brother had the same thing happen, night and day difference after general anesthesia.
Turned out to be heart rhythm screwed up by the med Propofol *
a known side-effect is Atrial Fibrillation. (listed as rare side effect, but it happened to him)
https://www.webmd.com/drugs/2/drug-3519/propofol-intravenous/details/list-sideeffects

He has been struggling with it for over 2 years, totally wiped out with CFS type symptoms.

If you have irregular or super-fast heart beat (intermittent) then you may have that side effect after the anesthesia.

My brother just suggested ""you can get a finger pulsemeter off Amazon, get one that has a wave-form display at the top of it, and if you truly have an irregular heart beat due to the anesthesia / operation, you'll see it on the pulse meter, it may jump around from like 80 to 150 beats a minute, the waveform will look sketchy and jaggy, due to the flutter, fibrillation, of the upper chamber, the atria".
""if you do have Atrial Fibrillation, check out on amazon, Dr. Carolyn Dean and her book "The Magnesium Miracle", and her liquid magnesium product called ReMag".

*Propofol is the generic name for Diprivan, which is a prescription, injectable drug. It's an anesthetic used to put people to sleep before surgery. It's also given for sedation in hospital intensive care units
 
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Wolfcub

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The only thing I can add is that if you had nitrous oxide as part of your anaesthetic (it's not inevitable that you did), it can rob the body of vitamin B12. A friend experienced what she thought was a worsening of her ME symptoms after being given it, and it took a long time to realise that she was actually suffering from B12 deficiency. After a course of injections, she eventually recovered her previous level of function.

It's more likely that your increase in symptoms was caused by the trauma of the surgery than by administration of nitrous oxide, but as it's easy to put right, it's always worth ruling out crashed B12 levels.

I've yet to hear of a doctor or anaesthetist who actually warns patients about this particular side-effect of nitrous oxide – which is worrying, given that it's so widely used in maternity settings and the fact that many women already have significantly reduced B12 stores after pregnancy.
Ah! That makes a lot of sense @Moof . That accounts for why I was craving certain foods after my surgery, and they were all B!2 containing foods. Back in those days I knew nothing about this sort of thing, but I remember the food cravings. I also remember that I ate like a piggy in hospital, and frequently "inhaled" other peoples' leftovers! Body needed B12!