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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Surgery Question

Justin30

Senior Member
Messages
1,065
Hi,

For those that have ME in a more severe form.

Can you give me some feedback as to whether or not you used the Anethesia Guidlines.

My DX has come into question and need some feedback.

Did general Anethsia have a negative impact on you?

I have high degree of Neuro Symptoms and POTS (Confirmed).

I really would appreciate some feedback, stories responses anything.

I would truly appreciate it.

Thank you
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Yes I do now due to learning its a very bad mistake not paying attention to those ME after a dental anethestic nearly had me ambulanced from the dentist to hospital, I badly reacted (shaking and whole body spasm), sent me into severe neurological issues and left me unable to walk for about an hour or so, I was then stuck at dentist. (I also was left with severe pain at the site of that injection for days.. it was far worst then any of the places, worst then the huge gaping holes in which I had my wisdom teeth out)

If I had followed the ME and anetheisa guides the problem I wouldnt have happened to me as I've since that time followed them and had no issues since.

*In my case I had the local anethestic lidocaine injection which had the adrenaline added to it. It is advised for us not to have the anesthetic drugs with the adrenaline in them. Next occassion after my reaction and getting them to leave it out of the lidocaine, I was fine. So it was in fact the adrenaline I reacted severely too.
 

belize44

Senior Member
Messages
1,647
I am having surgery on my wrist this month. Where do I get a copy of these guidelines so I can print them out in time?
 

Butydoc

Senior Member
Messages
790
Hi,

For those that have ME in a more severe form.

Can you give me some feedback as to whether or not you used the Anethesia Guidlines.

My DX has come into question and need some feedback.

Did general Anethsia have a negative impact on you?

I have high degree of Neuro Symptoms and POTS (Confirmed).

I really would appreciate some feedback, stories responses anything.

I would truly appreciate it.

Thank you
Hi Justin 30,

I have had surgery and a general anesthetic without any crash post op. I have operated on a number of patients who claim to have CFS/ME without them crashing. I do make sure they are well hydrated and generally schedule their surgery first thing in the morning to reduce the stress of fasting (no food or water) before surgery. I think the recommendation of not using epinephrine is a reasonable one. It is not unusually for a wrist surgeon to use a local anesthetic with epinephrine.

Best,
Gary
 

Horizon

Senior Member
Messages
239
After multiple surgeries I can say that it takes me months to recover from anesthesia. I have no clue why but it makes me much worse and I try to avoid it.
 

Justin30

Senior Member
Messages
1,065
Hi Justin 30,

I have had surgery and a general anesthetic without any crash post op. I have operated on a number of patients who claim to have CFS/ME without them crashing. I do make sure they are well hydrated and generally schedule their surgery first thing in the morning to reduce the stress of fasting (no food or water) before surgery. I think the recommendation of not using epinephrine is a reasonable one. It is not unusually for a wrist surgeon to use a local anesthetic with epinephrine.

Best,
Gary

Hi Garry,

Do you have POTS? I do an this is an area of concern for me.

Thanks,

Justin
 

Gingergrrl

Senior Member
Messages
16,171
Also if you have MCAS or channelopathies, knowing not only the anesthesia but also the pre-meds, and every aspect of what will be given to you is critical and can be life or death.

The TMS for a Cure packet (online) has great info on this which includes a surgery section that is helpful to anyone IMO. And agreed that having POTS, dysautonomia, significant hypotension and all of these issues are crucial to discuss with surgeon and anesthesiologist.

I have not had surgery since becoming ill but anesthesia/surgery was one of the many triggers which started my illness. If I had to do a procedure now with anesthesia it would have to be life or death for me with this channelopathy issue plus MCAS.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Do you have POTS? I do an this is an area of concern for me.
I have had a couple of general anesthesias but the short term ones like propofol. I've always asked for and been given IV saline beforehand. It is good to research guidelines for anesthesia for ME patients as certain types have caused patients trouble. (I do have OI also.)