For Caycee

[Guest guest]

Hello, friend.

What a shame.

The tinglies were a problem for you, then -- usually that is

transitory, and I was older than you at the time of my surgery (56,

almost 57), and emerged unscathed, so don't blame it on your age, at

all.

Why do you think it's the trigeminal nerve? I ask because I had

shingles in my trigeminal nerve, and it went up to north and south of

my eye (had to see an optometrist who was covering for my

ophthalmologist that day, to protect the eye with prednisone drops)

and all through one side of my face to below my mouth, with blisters

to highlight it. Did the MRI show some involvement of this nerve? (My

surgeon started to explain where it goes and I stopped him, telling

him I could draw it with my finger on my face, because I knew exactly

where it had hurt, through all this, with a painful, itchy blister

under my eye that still has left a scar like a pockmark.)

I'm nothing but a lay person, but I do hope they biopsied the sinus

tissue they removed. I'm kind of freaky on that subject, but I have

some good reasons to be so. If they take anything out of me, I want

it checked. And I'd be inclined to blame that growth, be it malignant

or benign, plus the earlier surgery, for the troubles -- but again, I

am a lay person, not an expert.

I am so sorry, whatever the causes, that you have had, and are still

having such troubles. I hope the latest surgery will give you relief,

and better satisfaction.

Am I right in remembering that your surgeon was The Great A? Shameful

of him not to take you more seriously in your troubles, in any case!

And hey -- I would wager that you're a better-looking lady than am I,

no matter how dissatisfied you are. And that it will get even better

if you can ditch the troubles that have plagued you post-op. That's

my fervent hope, anyhow.

Cammie

> Hi Robbin,

>

> Caycee here...people who have been around here forever will

remember me (Hi,

> Cammie and !!) I am 2 1/2 years post op. I had upper and

lower. You

> aren't alone in the problems you are having. I have had problems

for the whole

> two + years since my surgery. My problems have been a little

different....but

> I sure understand your frustration.

>

> I had/have a lot of problems with tingling and nerve pain (I also

have

> numbness in my upper gums and upper lip...but compared to the pain

and intense

> tingling...I am thankful for numbness). I have been back and forth

with my surgeon

> trying to get him to address my problems. I had no luck for the

longest

> time. Last month I went to see him armed with Internet printouts

regarding skull

> base surgery to fix trigeminal nerve pain. I had already been

through the MRI

> that the skull base surgeon prescribed but hadn't gone for an

initial

> consultation. My orthognathic surgeon must have thought " Gee, she

must be serious

> that she is in pain...she's threatening brain surgery! " Finally,

he (well

> actually it was his partner) told me that some of my pain might be

from my upper

> plate. I had it removed on Monday, August 2, 2004. I'm still

recovering from

> the plate removal so I don't know the long term results. I can

tell you that

> in my case, there was soft tissue that had grown into my sinus as a

result of

> my original jaw surgery. My surgeon thinks that was the source of

some of my

> pain. Sinus involvement might explain your nasal discharge. My

surgeon

> thinks that the plate removal (plus he removed the soft tissue that

wasn't supposed

> to be near my sinus) combined with antibiotics will heal the

opening in the

> sinus with no additional surgery.

>

> I am still pretty unsatisfied with the results of my surgery when I

factor in

> the pain, tingling and disturbing sensation changes I have. (plus,

I didn't

> get any cosmetic benefits from my surgery...actually I came out

looking worse

> than when I went in) I started joking with my family that I am

going to start

> referring to my original jaw surgery as " the accident "

>

> Disclaimer for those who are reading this. My results are not the

typical.

> Don't let me scare you out of surgery. First, I am older than most

patients

> (50 yrs old when I had the surgery). I had the surgery to correct

a breathing

> problem that caused sleep apnea. I also had an earlier lower jaw

surgery 35

> years ago to correct an underbite. The vast majority of

orthognathic surgery

> patients do not have long term distressing results. I'm just one

of the very

> unlucky few who did.