Re: surgery and anesthesiologists

[Guest guest]

Thank you June,

It has been a long time since I have felt any connection to the real

world. Even if it isn't CMT it is nice to hear from others

experiencing similar problems. I hope everything goes well for you

during your procedures. I read somewhere propofol (Sp?) is good to

use during surgeries, that is the only thing my daughter can have

too, she has a disorder in which her antibodies attack her brain. It

is important to make yourself very clear, some anesthesiologists

don't always want to listen to patients from my experience. Again,

thanks and good luck!

Jen

[Guest guest]

Hi, Jen........well, it is over - went smoothly (no cancer, no polyps - only

diverticulitis which caused the fistula so still have to have surgery) but

wanted you to know they did use proporol(?). They said it, didn't spell it.

And it was great. Am hoping to have same Dr. that was the anesthologist for

surgery as she works for the Dr. group I go to.

But my left foot was much heavier and felt even more numb after the scope.

Don't know if it is CMT and anesthesia related or not.

Foot acts crazy sometimes - always the tight sock feeling - then the lead boot

feeling. But it was a little worse after the scope so maybe it is related.

Anyway, I all Drs. etc that I met with so far about CMT and explained it and

told them to look it up or I would get them a print out and to be sure the

proper anesthesia is used.

Anyway, thanks for the reply. Hope you are doing well with this CMT that I wish

more people heard of.

Sincerely,

June

[Guest guest]

Hi, Jen........well, it is over - went smoothly (no cancer, no polyps - only

diverticulitis which caused the fistula so still have to have surgery) but

wanted you to know they did use proporol(?). They said it, didn't spell it.

And it was great. Am hoping to have same Dr. that was the anesthologist for

surgery as she works for the Dr. group I go to.

But.....my left foot was much heavier and felt even more numb after the scope.

Don't know if it is CMT and anesthesia related or not.

Foot acts crazy sometimes - always the tight sock feeling - then the lead boot

feeling. But it was a lilttle worse after the scope so maybe it is related.

Anyway, I all Drs. etc that I met with so far about CMT and explained it and

told them to look it up or I would get them a print out and to be sure the

proper anesthesia is used.

Anyway, thanks for the reply. Hope you are doing well with this CMT that I wish

more people heard of.

Sincerely,

June

[Guest guest]

The medication is called Propofol, ie., " milk of amnesia. " As I

recall, it is more of a hypnotic agent than an anesthetic per se. In

low doses, Propofol produces sedation and amnesia rather than

unconsciouness.

WRT the funny feeling in your foot, were you perhaps laying on your

left side for any length of time?

[Guest guest]

Yes, was told to lay on left side for procedure. That could answer it. Leg and

foot are a little better today, but the tight stocking feeling and the heaviness

are a little more than usual. Not unbearable, tho. Proponol put me out - was

moving more on left side as was told then it was Wake Up, it is over. Felt like

I just was told to turn more to left. Quick stuff. Thanks for the comeback.

June

[Guest guest]

Propofol is a wonderful drug. While you might have thought you were

unconscious, it was more likely that you have amnesia of the events

between drug administration and recovery.

Folks under Propofol (Dipravan) can talk, make sense, hold

intelligent conversations, etc., move themselves around - but will

have absolutely no recollection.

I kinda thought you might have been lying on your left side for the

procedure - you reported 'symptoms' on only one extremity, which

sounds - to me - more like a pressure paresthesia than a generalized

neurological event.

[Guest guest]

Thanks for the comeback. I also experienced a bit of amnesia after I got home -

called correct people who left messages and made appointments etc. but if my son

had not been there writing it down I absolutely forgot everything that was said

etc. Scary. Wore off by next morning. But it is so good they have a drug like

that. Now I have to have major surgery to correct the colovisial fistula and I

am told I will have to be more deeply under sedation for that. Kind of

uncomfortable about it but odds are I will be fine. And you were correct - I

was lying on left side and it is left foot and leg that is affected worse than

the other one but getting better.

Thanks again, ddolan1991. You were a big help. Much appreciated.

June