Re: What has people's experience been with anesthesia?

[Guest guest]

I've never had problems with any surgical anesthesia. Epidurals never

worked for me and were a waste of time. For a muscle/nerve biopsy, I had a local

- was awake the whole time. What a wierd experience to hear the surgeon and

staff talking, to hear the sound of cutting, etc.

Check through our Archives and File Folder on Anesthetics and CMT. Print off

anything you need, and be sure to meet with your anesthesiologist a week before

surgery.

Gretchen

[Guest guest]

Gretchen:

I had the same the same experience when I had a muscles/nerve biopsy on my left

ankle. It was so strange being awake and aware of what was going on. I was

also half naked under a gown, age 22, needing a lumbar punture also with young

doctors in the room. I was so self conscious and hated having the feeling that

the doctors were going to stare at my breasts. I cried through it all just

because of that, not due any of the pain I was having because of their insision

in the ankle or spine.

Marin

[Guest guest]

I had a terrible experience with anesthesia last time I had surgery.

Although, I forgot about this the last time I went to the neurologist,

so I failed to ask if it could be CMT related. It could have just been

a sensitivity that I had. I ended up with post-operative myalgia from

the anesthesia. I was sore all over. I couldn't sit up or dress

myself. I kind of felt like I had been hit by a truck. Funny thing was

there was no pain from the actual surgery. That part went great!

[Guest guest]

Hi M,

I was about 14 when the biopsy was done. The most horrific part was

staying one overnight in the fledgling neuro ward with a roomate who

had some sort of brain surgery and screamed constantly. Freaked me out

for months after. I had a lumbar puncture (spinal tap) later at 21

(OMG - the most unbearable, intolerable pain ever, after which a throng

of young neurologists flanked my bedside, poking and prodding,

conferring among themselves, looking goofy, and there I was partially

naked except for the 'paper' hospital gown and swearing " F " to all - my

voice the only 'power' I had at the time. (no women neuros around at

that time)

I am so happy that there is now genetic testing and skin biopsies so

that people with don't have to go through hell. (well, OK, we still

need to get that EMG/NCV thrown out!)

Gretchen

[Guest guest]

Gretchen:

You are so funny, but right!

[Guest guest]

I just had surgery for my hammer toes. Based on my experience with my other

foot, I was adamant that I didn't want a nerve block at the knee level

performed. Prior to the surgery, the surgeon and the anesthesiologist came

to see me. I held to my guns and the surgeon said " He's got CMT type 2,

there's likely more going on than we're used to. " (WHEW, finally!)

They convinced me they could do a nerve block at the ankle. I agreed,

figuring the foot couldn't get much more numb than it already is. Turned out

they don't do many of them, as it became a training session while close to a

dozen people watched the procedure.

I was out for the surgery, but pre and post op was awake. No other problems

were encounterd, and happily, I still have feeling in my leg.

And based on the pain I'm getting in the foot, it's not as numb as I once

thought either.

O

[Guest guest]

I've always had good luck with anesthesia, except for dental. I have

been put under at least 6 times, had an epidural for ankle surgery

once, 3 cortisone epidurals and 3 epidurals for pregnancy/labor. All

went just fine. The experience I've had, and maybe it's being confused with a

side effect of the ansethesia, is that when you can't feel a limb or are out

altogether, you'd be surprised the way the surgical staff can position and

contort your body. I have had pinched nerves because of positioning when I

wasn't aware enough to reposition (or couldn't). I have not been put under since

the genetic test that diagnosed me a CMTer but I always used to tell the

anesthesiologist that I tend to pinch nerves and to keep it in mind when

positioning me. I once had a densly numb lower lip for 4 days, I found out that

is where the intubation tube had caught my lip against my teeth.

Now, dental, that's another story. I just can't seem to get numb on

the tooth they are drilling on. Everything else in the area goes dead, not the

tooth. They never believe me. My son had the same experience when he was 10.

They didn't believe him either, I went in, like an overprotective mom and kept

telling them, " he's telling you the truth! He's not just being hysterical! "

which he wasn't, he's a very stoic kid - I was hysterical, but not him.

Holli

[Guest guest]

Hi Holli,

Sorry about your experiences  with the dental anesthesia. I have only had

anesthesia dentally twice, when I changed my 3 small fillings to plastic. But,

although it was a minor thing, I sure could feel my teeth. They can't numb the

teeth 100%, it must be a fact, and they should have believed you when you

complained. As a CMTer you probably have higher pain tresholds, so it is also

important to tell the dentists. Maybe you can have more anesthesia or in more

than one place?

As for other local anesthesia, it is always inconvienent for me, but nothing 

that remains afterwards. I have been in surgery and anesthetized twice, once for

a hand injury and once when I got my hearing implant, and both times, waking up

was terrible. I had fevercramps and felt very bad for days. But then I have no

idea how it feels for others, the doctors said this was " normal " .

Good luck with the dentists!

Beata

[Guest guest]

Thanks Beata. Maybe general anesthesia is the way to go for me. I always wake

up happy, hungry and in great spirits. The anesthesiologists can't believe me!

Mark