Addendum to Trigeminal Neuralgia

[Guest guest]

I forgot, sigh, I was asked about any surgical interventions for my

TN. I underwent a failed Glycerol Rhizotomy in March of this year.

The surgeon I had was the bestest ever, sorry Dr. Jennetta (Dr. Kalia

did his residency under Dr. Jennetta and my tongue is firmly in cheek

when I say he's the best ever, how am I to know?).

Due to my history (very carefully reviewed by Dr. Kalia!) any other

forms of surgery will not be of any use to me. I was a " first case "

-- the surgery was done with only the most bare of hope that it would

succeed due, again, to the nature of the cause of my disorder: blunt

force trauma. It is now thought by some who have had some involvement

in my care that I also have atypical face pain as well, as my pain is

constant. I do have the electric shocks, and they can be seen by

others when they occur. Which happens more often than anyone would

like.

So that there is no misunderstanding: my husband did not hit me, he

does not hit me, this was done in an attack by a third party. When I

was first seen in the ER after the attack, the staff were very careful

to separate us. Thankfully, I had my boss, a lawyer, with me, and he

was able to confirm my story without the police being called on my

husband. Thankfully, my husband was WITH my boss/lawyer at the

confirmed time of the attack! Sigh. My family was attacked as much as

I that night.

Of course, when I had the surgery, I did not realize that the

procedure DESTROYS part of the nerve. For some reason, this never

came up. It wasn't until I was discharged from surgeon for the failed

procedure and he said: " don't have any other nerve destruction

procedures without talking to me first, please " that I realized that

what I thought would happen isn't what happened at all (silly me, I

thought the gylcerol COATED the nerve, not destroyed it!). Now, that

was MY fault, I didn't do enough research ahead of time -- chronic,

unrelenting pain will do that to you -- and I will never have another

surgery without discussing it with that surgeon. I did have three

glorious weeks with no pain at all, and that was wonderful.

It is after this failed surgery that medical science quickly and

totally failed me. Not once have I been cautioned about any of these

meds -- for example, I was not warned not to go into the sun because

I'm on Tegretol, and no, that warning is NOT on the pharmacy insert,

either. I saw three of my health care providers the Tuesday after

Memorial Day and ALL of them chuckled at my horrible, horrible

sunburn. I had BLISTERS -- and I was in THE SHADE! Did a single one

suggest aloe? (That's ok, I have a HUGE aloe plant in my kitchen and

treated it myself! but IS it ok?) No.

One thing I've learned through all of this, and I'll mention it in

case it helps just one of you other members: CARRY A LIST OF THE MEDS

YOU TAKE AND THE MEDS YOU CANNOT TAKE WITH YOU AT ALL TIMES!

Especially if you have memory issues! I learned this when having a

second, minor surgery in April of this year. I had the same (crud,

cannot think of the real title for the " gas-passer " even thinking

sideways for M*A*S*H) and he realized there were some allergies

missing from my list. He pulled ALL my charts (yes, he delayed

surgery, but I wasn't complaining) from all over the hospital, and he

and I, before I was taken to the OR, went over every single one of

them. I have a fully comprehensive list now, and every new provider

loves it! I'm supposed to have a " ALLERGIC, SEE LIST " bracelet, but

have to wait a bit before I can afford it (the dumbest things Medicaid

won't pay for!).

This is as vitally true for any of you who have successfully kicked an

addiction as it is for me, who had a severe allergic reaction to a

tetanus shot. How horrible would it be for a hospital to have you

present unconscious and them to give you something for pain, and find

out they've made things worse? I've changed this some from Dr. E's

statement that if I come into the ER from a car accident and am given

a tetanus shot and it kills me, who is to blame? LOL

I hope that this is a more coherent post than any of the others I've

made so far, and that each successive post will be more coherent than

than the last.

Tere

(P.S.: As I've been asked in the past, you can call me Terry.)