Monday, May 4, 2009


i don't really know how to start, because my head is so full of information AND because so much has already changed since my appts on friday.

it's such a huge elephant to take down, in trying to begin explaining that i find myself feeling overwhelmed and therefore reluctant to begin.

i will try my best!

let's just say that my first appointment went swimmingly. exceptional. grand. just as expected.
it was first thing in the morning with my gyno oncologist. (i sometimes feel like my readership is solely young girls my age, as it was when i first started. i understand OBGYN discussions may not be what you're here for, new readers, so feel free to skip this entry!)

he was SUPER NICE and i'd fully refer him to anybody!
we chatted about my obgyn history (lots!) and he was very thoughtful, understanding, and assuring. not to mention, his waiting room is full of albums overflowing with thank you notes written from previous patients. gotta love it.

he basically goes on by saying that we KNOW everything we're gonna know about my insides, from ultrasounds/CT scans/sonograms. if we still need to know means going inside. he said exploratory laparoscopy surgery would be ideal, in order to get a peak inside and zap away any c-section scar tissue/endometriosis that may be creeping around in there causing horrendous pain. if he finds nothing, he'll close me up, having done nothing. i likey.

he did mention it'll be a 7-10 recovery period ...and... i have no slaves. who would take care of isaac? i have no idea. i could pay some people to babysit, i suppose...but 7-10 days is a LONG TIME! i need to ask him to specifically DEFINE "recovery." i'm close acquaintances with pain, so i could probably do just fine through most of the pain. i do it almost every day. but post-op pain for the first 48 hours would be rough and chad would certainly need to take some personal days to help out.

his surgical coordinator will be contacting me soon to get it on the calendar.
that was easy!
and done.

then i had to drive over to the TMJ/facial pain specialist.
though i was thrilled with my morning appt, i was full-on sobbing in the waiting room by the time i got to this doctor's office. i was just so upset. so anxious. so ready to have him HELP ME.

they take me back to his room and by the time he comes in, the nurse had already set the box of tissues on my lap. he sees me and OH MY GOSH, flips out. bear in mind, he's a shall we say...nerdy little rocket scientist einstein pocket protector type of dude. (hi dr singer! if you're reading this!) so facts are, he's not sure WHAT to do with...emotion! tears! OMG!

he scrambles and fumbles around and starts scribbling on a note pad: REFERRAL FOR NEUROLOGIST.

"dr london is fantastic. i believe you have trigenimal neuralgia. i believe we are well on our way to alleviating your pain. it takes time. i understand you are growing impatient. if you desire a second opinion or somebody more educated on how to treat this, feel free to have a consult with him. he's wonderful. but i don't feel we've exhausted our resources here and we will beat this, allison."


HIM: "well, allison, that is the least invasive thing we can do for you."


NURSE: walks out because she starts crying.

HIM: "dr london is just going to put you on the same meds i have you on....if that doesn't work....the meds will be changed and increased. (dear Lord NOOOO!). if that doesn't work, he'll move to alcohol injections into the nerve endings to deaden them for 3-6 months at a time, which will help alleviate pain. if THAT doesn't happen...he will probably refer you to a surgeon who will pursue brain surgery."

just like that.
he said the words, "Brain Surgery."

(SIDEBAR: the trigenimal nerve root is located behind your ear. embedded in your brain. it feeds through the TMJ joint, which your jaw hinges from, and then breaks off into nerve endings in your face that carry feeling and sensation to your eyes, cheeks, tongue, lips, nose, TEETH!, etc. so they make a tiny hole behind your ear, lift out a small piece of skull, and find the root nerve and cushion it so that it isn't being compressed or damaged, which 99% of the time is the cause of classic trigenimal neuralgia pain. we don't even KNOW, without proper testing first, if that IS the source of my problem. just saying, that's how they come to 'brain surgery' scenarios.)

fortunately, i saw it coming. i've done enough reading...and i've read enough testimonials to know that was the worse case scenario. so i wasn't upset by him stating the obvious. frankly, i don't feel it will come to that. BUT STILL. more tears. frustration. DELAYED RESOLUTION.

then after crying for EMOTIONAL reasons for 45 minutes...he wanted to install an implant down into my jaw (hole was already drilled 3 mths ago), since the parts had arrived that morning.

and after 5 shots of novacaine, i'm now crying bc the agony was so terrific.
we decided to close it up and come back to it later.
everybody was tired and everybody was running low on time.
so i wiped my face clean and with weak knees, went to check out.
the surgeon wanted to see me again on sunday, he'd open his office just for me, and therefore i went back in on sunday for another 2 hour appt.

THIS TIME = it went very WELL. no pain. (well, if you don't include that first injection into my JAW was smooth sailing after that. and the 4 additional injections....) the implant was placed and my jaw is somewhat stabilized now. AAAAND, with the placement of the implant, new puzzle pieces were revealed about the structure of my jaw and how that may be the culprit behind the mind-numbing electrical lightening volts that rush through my face.

so while i may have SYMPTOMS of trigenimal neuralgia (TN) may not be CLASSIC trigenimal neuralgia. which would be the biggest blessing of ALL!

so i will be headed to the neurologist on thursday of this week for a consult.
the TMJ specialist is convinced i'll be treated for CLASSIC TN, since the neurologist will hear "electricity in face" and immediately believe that's what i have. however, TMJ specialist doesn't care. "let him treat you for classic...let him get your pain under control...and in the meantime, we'll still keep working on the source of the problem through correcting the structural problems with your jaw alignment...."

got all that?
i know.
me either.

but that's a rough sketch of how things went down on friday...and then sunday.

i still can't eat really, unless i load up on Neurontin before the meal, which results in a very groggy dinner date.

but i can only hope and pray that progress is being made, despite feeling as though i'm stuck on this treadmill...

...sprinting and going nowhere...


Nikki said...

I see & hear progress throughout all of this!! As horrific and painful as this journey has been for you it seems they are finally getting to the root cause (no pun intended) and it seems like the root cause is something less severe than they thought (i.e. no brain surgery). I will definitely keep praying!! Love you!!

heather said...

Oh, dear. I don't know what to I'm going to pray for you right this minute.

KellyLee said...

OMG Alison, this is just all sorts of horrible. Totally surreal what they are doing or talking about doing to you. I will definitely be praying for a true diagnosis and resolution for you.