Tuesday, November 27, 2012

Typical....Nothing Seen on MRI

The doctor called early Friday afternoon after receiving the results summary.  As it typically is for me nothing showed to be irritating the trigeminal nerve.  The only thing that showed up was a little something in my left nasal sinus cavity.  UGH!  Now Benny says we're not going to do any more special tests like this since they're not showing anything the doctors can use to figure out what's wrong.

I got the authorization confirmations from insurance afterwards.  The doctor's office said they ordered a MRI with contrast but both confirmations said without dye.  So I have a feeling we'll have to pay more for the usage of the dye...receiving the bill just in time for Christmas.  Just what we can't afford right now.

The doctor also said she finally got the information fromt he neurologist for possible alternatives to the Tegretol.  Since I'm no longer experiencing pain there's no need to continue Tegretol or try the alternatives.  I hope she put the information in my file so we'll have something to turn to if/when this comes up again.

Monday, November 19, 2012

Electronic Sounds Gone Deeper

They started me on Tegretol for the Trigeminal Neuralgia.  I took the first dose Thursday night and the second Friday morning. The phone ringing, the fax dialing, the microwave beeping, and even some of the voices on the TV are all deeper since then.  At work Friday I kept asking if it was just me or if anyone else noticed the deeper sounding tones but nobody really answered me.  That was before I saw the side effect of hearing problems on the sheet when I read the info to a coworker.  Is what I'm experiencing this side effect or something else?  I'll see what the doctors have to say.

11/20 AM UPDATE
The doctor had me not take the Tegretol last night and this morning.  By the time the MRI is done she should've consulted with the neurologist to determine whether or not to cut the dosage in half.  So far the TV sounds back to normal but I don't know about other electronic noises yet.

Tuesday, November 13, 2012

Dude, you made my face hurt!

For about a week now I've had this pain on the left side of my face.  It started only in the evenings then during the day on Friday.  Taking 800 mg of ibuprofen every 6 hours offers minor relief.  Sure enough near the end of that 6 hour window the pain returns.  It starts around the bottom of my jaw, spreading across my cheek into my lip.  It feels as though someone is stabbing my cheek over and over again for hours on end!  Ice didn't do anything for the pain.  The heat of the shower felt more like needles over the area.

Benny insisted the pain was from my teeth but I didn't think so.  I don't feel that pain when touching my teeth or gums with fingers, toothbrush, food, etc.  So I sent a message to my doctor's office telling him what's going on.  The first thing they ask is if I'm having chest pains or trouble breathing.  Is that the norm to ask that for just about anything these days?  They set me up with an appointment the next morning with another doc in the practice since mine wasn't available.

This doctor asked questions and examined me.  I thought my lymph nodes might've been swollen too but she said they weren't.  The doctor went back into her office to lookup my bloodwork history (not sure why that couldn't be done in the exam room) and a little research.  She returned with the clinical diagnosis of Trigeminal neualgia, facial nerve pain.  Additional bloodwork was ordered.  She's consulting with a neurologist to determine the best course of treatment.  I was kind of surprised to hear the doctor was consulting and I didn't need to make a visit to the neurologist.  She did say it's unusual to see something like this in someone my age; it's more something for the old folks.  But hey, most things that happen with me are unusual!

After a quick search I found this to a great representation of the trigeminal nerve paths.


It's surprising to hear the first course of treatment is antiseizure drugs such as Tegretol and Neurontin.  It appears that these drugs interfere with overactive pain signals coming from the nerves.  I looked up both drugs to see what's covered by insurance.  It appears Neurontin's generic would be the least expensive choice being a tier 1 drug.  I've sent a message to the doctor letting her know my preference so that can be taken into consideration in her conversation with the neurologist.  So hopefully by the weekend I'll be in less pain!

One good thing out of this doctor visit is I learned I lost 18 lbs without even trying!  She was surprised I didn't know and wasn't trying.  Hey, you don't have a scale you don't know these things! LOL

For details on facial nerve pain check out the Trigeminal neuralgia information on WebMD.

Monday, June 11, 2012

The Results are In

Well, I went to the followup appointment and the fellow was going over the results when she spotted an error in the day study data.  The doctor had made an error in a calculation "in my favor" that resulted in correcting the diagnosis to something like "excessive sleepiness."  Still that means there's not much that can be done about it.

The doctor said if we go the medicine route we wouldn't be able to continue trying to have kids; she didn't want to be responsible for someone having kids with horns!  I checked out the medicines she discussed (Nuvigil & Provigil) and they both say to tell your doctor if you are pregnant or are planning to become pregnant and to talk to him/her about birth control.  That idea turned Benny off.  He wants a kid of his own and he's not getting any younger.

I called St. Francis' weight loss program and asked about how they work around the insurance coverage issue.  They woman that answered the phone didn't have a friendly tone.  She told me that the initial visit, testing and lab work is $2300.  There are 10 followup visits which are $100+ each.  So that's another option that I can't do.

Next I called IU's program to find out if I should still be on the waiting list.  We played phone tag a few times before I was able to speak with someone.  This woman explained that they bill visits as regular doctor visits so that would covered by insurance.  So this sounds more promising despite the hiccup with them not accepting new patients for the program yet.

Friday, June 1, 2012

Inconclusive Again

The lady finally called back almost first thing Wednesday and said the sleep study was normal.  So the third time wasn't the charm.  I'm wondering what the doctor's next course of action will be.

In the mail was a letter that said, "We would like to take this opportunity to let you know that one of our board certified sleep physicians (MY DOCTOR) has interpreted your recent sleep study and has preliminarily determined that the study showed signs of Primary Snoring."  So they don't want to say inconclusive in writing anymore and call it "Primary Snoring"???

I briefly searched online to find out what Primary Snoring is but didn't really find a definition but more how it differs from sleep apnea.  The differences listed are:
  • A complaint of snoring by an observer without witnessed gasping.
  • No evidence of insomnia or excessive sleepiness due to snoring.
  • No dryness of the mouth upon waking.
  • No associated abrupt arousals, lowered oxygen in the blood, or cardiac disturbances.
  • Normal sleep pattern.
  • Normal breathing pattern during sleep.
  • No signs of other sleep disorder.
Right away I wonder how they can classify whatever this is as Primary Snoring because of this excessive sleepiness I have.  Perhaps they don't think it's caused by my snoring.  Otherwise Primary Snoring is doctor speak for "we don't know what's wrong with you" in relation to excessive sleepiness.  I'll find out more details next week what the doctor says.

Saturday, May 26, 2012

Third Time the Charm?

When I got home Thursday there was a message on my voicemail from the doctor's office.  The lady said to call back at my earliest convenience.  The sleep lab had said it'd take about 5-7 business days to have the results.  So I'm thinking they've found something this time.  I called back Friday but apparently the lady was off so now I have to wait until Tuesday to find out anything.  So now I'm going to be wondering this entire long weekend what they found.

I hate waiting....

Monday, May 21, 2012

Sleep Study III - Done

Despite my normal bedtime being around midnight they had me arrive at 8pm.  I was wondering what all I would do for 4 hours.  Mostly I flipped through all the tv channels, stopping to watch something for a few minutes and then moved on.

After I was in the room for maybe an hour the night tech hooked me up with all the wires.  Some of the leads itched or burned but nothing actually burned my skin this time.  I asked for water to drink and she gave me one of those mini bottles (which surprisingly lasted me through the night).  Around 10:30 pm she put me down for the night.

Throughout the night I woke up with all my joints aching from laying funny to avoid accidentally removing leads.  Once I woke up hearing a lot of movement and conversations in the hallway I assumed it was sometime after 7 am.  However, when she unhooked me so I could go to the bathroom, she told me it was about 3 am!  I felt awake but not fully alert (or maybe the other way around) so it took me a little bit to go back to sleep.

When waking again later I heard less movement but still conversations in the hallway.  This time it was 7 am so I was done for the night.  The day tech unhooked most of the leads and brought me juice and granola bars (what I normally eat for breakfast).  About every hour and a half she returned to hook me up for the 20 minute naps.  I never was completely asleep but dozed a few seconds, waking up when I started snoring.

The last nap was at 4:30 pm.  I don't recall the day study taking this long on the other two studies.  I stood in the shower what felt like a long time to get the goo out of my hair.  I think most of the goo came out before applying the shampoo.

When I got home the insurance approval letter was waiting for me in the mail.  The letter was dated Monday so why did it take until Friday to reach me?  Talk about slow processing time!

Thursday, May 17, 2012

Insurance Approved!

I called insurance Tuesday for my annual verification that nobody has other insurance.  Once that was done I asked the rep to check on the pre-authorization for the sleep study.  She said it was approved but no number had been assigned (whatever that meant).

A few minutes later I received a call from the sleep lab saying she had just spoken with insurance and said that they had approved the sleep study.  That night I received an automated reminder message about the sleep study.  Wednesday morning I received another call (from an actual person) verifying the apointment.  Wednesday evening, while out to dinner for Benny's birthday, I received yet another automated reminder message bout the sleep study.  Talk about overkill!

Tonight is the night so no more reminders (I hope).  I'm to check in at 8pm but usually don't get to sleep until around midnight.  So I hope that I'll be able to sleep earlier otherwise I'll run out of things to do quickly.  I'll be there tomorrow until who knows when where they check to see how easy it is for me to doze during the day.  I don't recall if I nodded off during this portion on the other two studies.  There's a higher chance that I will doze this time (or so it feels like).

Saturday, May 12, 2012

Not Covered by Insurance

Dear Valued Member,
We have received your Internet inquiry regarding weight loss programs. This service is also not covered under the plan.

So, I don't know how they get around this when billing the medically supervised weight loss programs. I can't afford to pay for services out of pocket.

Although IU's program is currently full St. Francis isn't.  If there's a way it may be through them instead.

The sleep study is still pending....

Tuesday, May 8, 2012

Insurance Pended

We have received a request to approve the services identified above (the sleep study).  However, at this time we do not have enough clinical information regarding your health status to determine whether the services are covered by your plan.

If you and your physical decide to continue with the treatment, we cannot guarantee benefits will be covered.

In order to process your request the following information is requested:
  • MD office notes and exam findings
  • Diagnostic testing results
  • Previously tried treatments and medications
  • Any other information you feel would support this request
  • Does the member have narcolepsy?
  • Is the member suspected for idiopathic hypersomnia?
  • PLEASE USE ATTACHED PROVIDER TOOL (wasn't attached to my copy so I hope they put it with the doctor's copy)
We have 2 business days to complete your request after you provide us with the additional clinical information.  If you do not provide us with the additional clinical information that has been requested, we will review by 06/20/12 based upon the information you have provided thus far.

So I've sent a message to the sleep doctor's office asking if they needed anything from me to help get this processed.  I hope a rush is put on this so a doctor can find out what's wrong with me and get a workable treatment plan.  I'm tired of being tired....10 years is too long!

Sunday, May 6, 2012

Bariatric & Medical Weight Loss Seminar

The first required step for all patients is to attend our free informational seminar that will last approximately two hours.  You will be provided with information about our programs, the different resources we have available for you and the lifestyle changes associated with each program.

Just reading this on the referral paperwork has an ominous tone to it.  It sounds like this would either be too much information crammed into a small timeframe or hideously boring.

We drove 30 mins or so to get up there Saturday morning.  I walk in and they ask if I'm there for surgery or medical weight loss.  I say medical and am told that they're not accepting new patients for medical weight loss until maybe September.  Because of this the seminars are currently only for surgical weight loss.  They said the doctor should've known that and not sent me there!  So you know this news put anyone who made the trip in a crappy mood.

In the afternoon my phone made a swan dive out of my pocket into the toilet.  This is the second phone I've do this!  So both of these things made the day blah for me....didn't feel like doing anything.

Friday, May 4, 2012

Non-Restorative Sleep

Since Austin was born I don't feel refreshed when I wake up. Some may say it's a new mom thing....but it's been 10 years! I used to be able to take a 10 minute nap and that would be good for me. Now no matter how long I sleep I'm still exhausted.

I went to my first sleep study under the advice of a neurologist in 2002. He thought going in it was narcolepsy. The results showed otherwise. It wasn't sleep apnea either. The doctor tried some meds but they didn't have any affect.

New job and new insurance some years later I get my second sleep study after the advice of a pulmonologist. Again nothing conclusive.

Tuesday I went for a consultation at the IU Sleep Disorder Center. They're having me go for my third sleep study. When I spoke with the lady in scheduling she was shocked that this would be the third time. So I now know it's not just Benny and I that think this is odd.

I'm a plus size gal so they also referred me to bariatrics. The paperwork says the first thing the bariatrician requires is to sit through a 2 hour seminar about their services and options. One of the medically supervised weight loss programs is probably what I need. I'm not motivated to exercise. The problem we'll run into is that I'm a very picky eater.

Now I wait for the sleep study in two weeks and hope that the third time will be the charm.