Friday, June 12, 2009

to make a short story much longer....

if you're a close friend, you may just wanna disregard this entry, as you've pretty much already heard/read what's discussed below. and if that is the case, i want to publicly thank you again for being pillars of strength for me!


as you know i had my appt with the Facial Pain specialist wednesday at Johns Hopkins....

i first need to start off by singing my praises about this doctor.
and i first need to express my gratitude to the Lord that i live within driving distance of our nations #1 hospital in the country.

i've NEVER had a doctor email me and ask me to type out my entire medical history before the appt.
i've never had anybody care to know the full picture of my facial pain.
it felt SO good to be heard.

i got there at 4pm yesterday and he had my story printed out...asked me lots of questions about my personal life and was just a REALLY great guy.
he's been working at hopkins for 32 years and solely deals with this sort of thing.

he started by reading back my typed story, asking for me to insert additional things i've recalled or add to it as we went along.
it took an hour.
he cared. validation is HUGE.

the 2nd hour consisted of him diagnosing me, which was much harder to handle.

for starters, i have three different pains that i deal with.
on the right side of my face, i have sharp electrical pains.
left side of my face, more dull, long-lasting pain.
and another part of my face hurts weirdly when i eat.
he said all three pains stood for three distinct problems.

to start, he was most concerned with the electrical shooting pain because it represents nerve damage of some sort. "neuropathic" pain.
he said that with 99% certainty, that is actually Trigeminal Neuralgia. i'm almost classically suffering from it, despite 2 other specialists ruling it out.
this was hard to hear, as this is the sort of pain that means there is a vein wrapped around my trigeminal nerve, causing it to misfire electrical shocks. this is the problem that is ultimately resolved with either:
1) drugging the heck out of me, or
2) brain surgery

i was hoping against hope that this was NOT what i have.
in addition to this stunning news, he said that most people who suffer from this (25,000 cases nationwide, annually), are 50 years old, or older.
and that the concerning part about this is that in cases where young people suffer with this, over 50% of them are a result of Multiple Sclerosis (MS).
it was at this point that i went numb and got a little dizzy. i could feel my face flush and i was in shock.

so for this actual pain, they will start me on a certain drug (Tegretol) that i've heard of. a "dirty drug" he called it. many negative side effects, BUT will "help prove to YOU and to myself that this is indeed what you have."
he said that he just needs me to take it long enough to determine IF it works. once determined, we move into long-term resolution. (drugs or surgery).

the OTHER pains, on the left side of my face are a result of nerve response to a root canal i had a year ago. apparently when nerves are cut, they react by trying to FIND the other end of the nerve that was severed. root canals cut nerves. therefore, SOME root canals result in "Neuromas" when is when the nerve turns in on itself and creates a little ball of hypersensitivity. he said this will be a lifelong pain that usually can only be treated by meds, but it never goes away.

another blow. that sent me into spiraling emotion as well. so he'll add a 2nd drug on top of Tegretol to address that pain, but not at the same time, as to confuse him on which med is actually doing the trick.

the 3rd pain is from a cracked tooth that should resolve by having it removed. the easiest of the three issues to discuss, by far.

he then showed me a slideshow and pointed out the damaged nerve and wants to have me do a 2nd MRI on my brain and cranial nerves to determine where the vein/artery lies that is inflicting damage to the nerve.


question/answer with him.

1) why take meds if i'd rather have surgery to permenantly resolve this?
he needs to put me on the meds to see that this IS in fact my problem.

2) why do a 2nd MRI?
he needs to know the MRI was done with the latest and most perfect technology.

3) how can i know if i do, in fact, have MS?
sometimes it won't manifest itself via MRI for a few years. 'no way to know at this point' if your MRI is clear. you may be fine! but over 50% of people diagnosed with this under the age of 50, ultimately do have MS.

4) when do i start the meds?
as soon as he does blood work on me to check the stability of my liver. the meds are so strong that they can actually damage organs, therefore, we must wait to see that my liver is fine. (i'm sure it probably is...)

5) how will i function on these meds? (they're epileptic drugs to slow down the nervous systems responses)
we'll start you out on pediatric doses and work your way up until you have adapted slowly.

6) i do NOT want to be medicated for life! so then what?
once we determine this is what you have and i'm sure as hell certain it is, then we can head to neurology to discuss surgical options.


i may be missing a few pieces of i'm kinda in total shock and disarray at the moment.
i've been on the phone trying to fax medical records, schedule MRIs, and prep for my JULY 2nd surgery for endometriosis through ANOTHER doctor.
i feel overwhelming and discouraged. ugh.

i'm obviously in denial, all while feeling resignation at the same time. if that makes sense.
there is nothing at this point, that i can do about the future, so i try to remind myself that God is sovereign and only gives us what we can bear.

i came home by 8pm that night and actually was fine repeating it all (a bit of a robot by that point) to chad HE was more upset than me.
and then i cried.

i'm also reminded that this is just a diagnosis based on symptoms and we have yet to PROVE it completely. however, it's difficult to deny this doctor's experience.

i've tried to talk myself into being ok with this, for the last few days. fortunately, i've been busy with isaac and other random stuff.
"our earthly bodies are fallen, i am 30, and i'm not above suffering...if this is my reality...i need to be ok with it."

it's just another reminder that we never know what the day will bring or how God will twist and turn the path we walk on....

so without getting overly dramatic about the whole ordeal. here it is.
i've cried.
i've laughed.
i've drained my emotions.
and now i sorta just ....feel.... nothing?

so we'll see. the 2nd MRI and the new meds should be more revealing, i suppose.
just pray for us! :(

i apologize for ending the week on such a bummer note!

but i'm grateful that i can still sit here and type: my life is STILL so full! :)
have a great weekend...


i was on the phone yesterday detailing this story to somebody and i turned around after hanging up and saw this:

all to say, thanks for making it to the end of this long, dragged out entry. ;)


Mayes Capitol Courage said...

Like Tips said, I'm lacing up my hiking boots. Walking every step of this journey with you until we're out of this valley and enjoying the view on the other side. Love you so much.

heather said...

oh, Allison. I am in shock - my stomach sunk when I read this. I am PRAYING for PEACE for you. You're still in a lot of 'what-ifs' right now, and that is so hard...not that possible brain surgery and MS isn't hard. Wow. Sending you love and prayers and so glad you are surrounded by awesome people who love you - chad, isaac, your church - and us on the interweb.