Surgical considerations

[Looking_for_light]

Hi all

Very interesting points re: surgery on a recent post. Further to this, hopefully people can please provide some info / thoughts on the following: 

 

Which concerns need to be considered regarding surgery (especially of long duration) for those with PoTS in general?

 

Which concerns need to be considered regarding surgery (especially long duration) for those with the hyperadrenergic subtype? 

 

Which concerns need to be considered regarding anesthesia (especially long duration) for those with PoTS in general? 

 

Which concerns need to be considered regarding anesthesia (especially long duration) for those with the hyperadrenergic subtype? 

(non-adrenaline-based anesthetic etc?) 

 

Which concerns need to considered regarding surgery and anesthesia (especially long duration) for those with a tachyarrhythmia? 

 

Which concerns need to be considered regarding surgery and anesthesia (especially long duration) for those with hypertension? 

 

When a patient isn't allowed eat and drink before surgery, but very easily dehydrates, are there any general recommendations on giving IV fluids before operations?  

 

When a patient isn't allowed eat and drink before surgery, but very easily dehydrates, are there any general recommendations on giving IV fluids after operations?  

 

Do extra surgical provisions need to be made for people with PoTS? 

 

Generally any extra risks surrounding surgery for people with PoTS? 

 

What would be the considerations for local anesthetics for those with PoTS? 

 

What would be the considerations for local anesthetics for those with the hyperadrenergic subtype? 

 

Very sad to say, but dysautonomia's unfortunately little known and considered (aware it's fortunately not that way elsewhere) that HCPs mostly won't know, or have any training and it's up to patients and relatives etc to try to advocate, hence the above. 

 

Thank you all so much. 

[Pistol]

@Looking_for_light there are several articles online regarding this subject. here is one that is very detailed https://ispub.com/IJA/27/2/13170

[Sushi]

By the way, a top anesthesiologist who totally believes in Dysautonomia, POTS, EhlersDanlos, Myalgic Encephalomylitis etc. and know how important the right approach by the anesthesiologist is, recently said that the papers that patients brought to him were unworkable and inaccurate from the point of view of the anesthesiologist. He said that a good anesthesiologist should be trained in how to work with patients like us and that our job was to be very clear about how our diagnoses impacted us. I have recently had several procedures that involved general anesthesia and did find that this was true.

For instance, my surgeon needed for me to have deep sedation and also specified that I needed paralytics—this was the only way he could do his job safely. And the anesthesiologist had only so many choices to do his job getting me to the necessary level of anesthesia. Yes, it took quite a while to eliminate all those drugs and to feel “normal” again, but the surgery was very successful and could not have been done without a lot of medications—I could easily have died without them. So it is somewhat of a trade off.

[Pistol]

@Looking_for_light @Sushi I had several big and also minor surgeries since onset of HPOTS 15 years ago. I had several anesthesia complications occur during these surgeries, including seizures ( I have autonomic seizures from rapid vasoconstriction causing sudden loss of circulation to the brain ) as well as high and low BP. All of these complications were managed well by the anesthesiologists, who ALL were knowledgeable on POTS. This is because the anesthesiologist that did several of my procedures educated herself on it and posted instructions in my chart. Once she did not want to put me under because I was very unstable but needed the surgery, so she did a spinal while I was supine ( usually done sitting upright ) to avoid a sudden drop in BP. She also managed another time when my BP dropped dangerously low by administering appropriate medication. All this was documented, so the other anesthesiologists are aware. It is also noted in my chart to administer IV fluids before and during surgery to prevent complications. 

[Sarah Tee]

@Looking_for_light, I have this textbook on POTS that came out recently:

https://link.springer.com/book/10.1007/978-3-030-54165-1

It has a chapter called “Surgical considerations”. I have had a quck read of it (it’s only a couple of pages) and although there is nothing earth shattering I think your team might find it useful.

May be available through medical library, or single chapter can be purchased here:

https://link.springer.com/chapter/10.1007/978-3-030-54165-1_38

[Looking_for_light]

 

Thank you all so very much for the really appreciated input and thoughts. Trying to get informed way in advance, as unless it complicates to an emergency (please, no!), the wait and terrible suffering will be extremely long due to the horrendously dire state of things. The severe strain and stress of it all on us both is inevitably tremendous. Thanks again - means such a lot.  

[MaineDoug]

Thank you everyone for discussing this topic.

I’m preparing for a total hip so I have the same concerns. My plans are:

1. Having the surgery at a University affiliated Medical Center. I was preparing to have the hip at a local, rural hospital. I also have adrenal insufficiency from 14 years of prednisone and this was freaking docs out. They tried to wean me off prednisone but I crashed. So my Columbia Endocrinologist tried to work with them to make the surgery safe. He called me and said “DON’T have the surgery there, they are asking me questions that scare me”! 😳Soooo, I am now scheduled at the Hospital for Special Surgery in NYC. A 10 hour drive but worth it for the best Orthopedic hospital there is! They see it all, every day. I feel very safe, although I will verify that they are up to speed on all necessary measures.

2. Venous access. I share the NPO before surgery concerns. I had an endoscopy last spring. They wanted nothing by mouth for 8 hours! I told them IMPOSSIBLE, and we negotiated to 2.5 hours. That wasn’t good enough, took 7 nurses, 12 sticks, and a 4 hour delay in surgery to get venous access. My plan, which I will advocate for during next Ortho consult, is to request that IV be started by home health the day before surgery, then run saline all night and through the surgery. No way I can be NPO for more than 15 minutes, I dry right up! And even worse my vitals go haywire.

3. Consider dental too! My dentist researched POTS after my diagnosis, hadn’t heard of before. But he was great, next visit had obviously done his homework. Called his whole team in and had me “teach” them about POTS and adrenal insufficiency! Biggest learning from him, some locals, like Novocain can cause a POTSY to CODE! 😱 He used alternatives and I did just fine. All teeth gone now, rotted out from the d*** Prednisone.

Thanks again everyone for the info. Vital to know!