Worn Out Collar

I’ve been wearing my current rigid neck brace (an Aspen Vista collar) day and night, only taking it off to shower, since June.  That puts a lot of wear on the collar.  It is really worn out, and doesn’t offer enough support anymore.  So, my symptoms have been getting worse.  This may also be responsible for my recent stupor after exercise.  So, I ordered a new collar, and I’m really hoping that I will get some extra relief.  I’ve needed to lie down almost constantly.  Hopefully, the new collar will give me more upright time, and improve my endurance for exercise.  It should come in about a week, so I’ll let you know if it helps.

It’s really scary to know just how dependent I’ve become on my collar and my inflatable cervical traction.  But it is also reassuring that the surgery should relieve a lot of my symptoms.  I’m dreading surgery, but I also can’t wait for it.

Confirmed Surgery Date

Here's my surgery fundraiser site: http://www.youcaring.com/medical-fundraiser/Carolyn-s-Surgery-Fund/36820

There has been some upheaval in the administration at the Chiari Institute.  So, it took me six weeks to get a confirmed surgery date.  It’s so frustrating waiting weeks for a phone call.  I’m still having trouble getting phone calls back about pre-surgical testing and billing issues.

Anyway, by the time I was able to confirm surgery, my original date had been taken.  My surgery is now officially booked for March 14, 2013.  Pre-surgical testing will be the day before in New York.  In addition, I need to have a DEXA scan performed locally and I need an appointment with my primary care doctor for surgical clearance.

We purchased our flight tickets, reserved our hotel room, and booked a rental car.  My husband and I will be in New York from March 12-21.  My mom and my brother will also be staying for most of that time.  It feels a lot like deja vu.  We’ve done this several times...this is my 4^th neurosurgery in New York...my 5^th total.  The last one was in summer 2010.  It was a very similar procedure: a Cranio Cervical Fusion Revision.  (They call it a revision, but it is really a total reconstruction.)  

Here's the plan for surgery this time:

They will remove all of my current hardware, which will involve a large incision and a lot of damage.  Then, they will install all new hardware.  This time, a new fusion technique will be used.  It involves shorter rods, but longer screws.  The bars in the fusion are 3.5 cm long.  There are three sets of screws:

2 in the pedicles of C2

2 in the lateral masses of C1

2 in the occipital condyles (at the base of the skull.)

This is supposed to provide for a sturdier, more durable fusion.

My symptoms have been pretty terrible recently, which is helping me to feel quite certain that I need to have this surgery.  I’ve had some terrible migraines.  I’ve been keeping up my regular exercise, and I’m in really good shape right now.  Unfortunately, on Tuesday night, I did my usual exercise, but took a little less rest time between exercises.  By the time I got home from the gym, I was in a complete stupor.  Unfortunately, this stupor lasted until this morning (4 days).  I was so out of it, and frequently non-responsive.  It was an extreme case of post-exertional malaise.  I really just felt like I was in a fog, and I couldn’t snap out of it.  Taking stimulants did nothing to wake me up.  Thank goodness, today, the fog has lifted for the most part.  I’m more aware and alert, and spending a lot less time staring at nothing.  I’m going to have to be more careful with my exercise, as my body seems to be less tolerant right now.

Well, that’s the update for today.  I’ll be busy trying to arrange for testing and managing health insurance issues.  I’m still teaching a few of my favorite piano students.  Only 5 lessons per week right now, to keep it manageable.  I have a few weeks left with them, before everything changes.

The Holiday Hit

Here's my surgery fundraiser site: http://www.youcaring.com/medical-fundraiser/Carolyn-s-Surgery-Fund/36820

My body definitely took a hit over the holidays.  Just the change in routine really knocked me out.  My body's overall decline is evident.  My dependence on traction is gradually increasing.  I'm in my collar all the time (except the shower), but I am needing several hours a day in traction to relieve symptoms...especially ice-pick headaches, nausea, and reduced consciousness.

Swallowing has also become a major problem again.  Choking on water.  Pills going down very slowly or getting stuck.  And worst of all, swallowing way too much air with my liquids, causing major bloating.  Ugh!  I really hope this improves with surgery.

But hardest hit was my digestive system. (Warning: this section is graphic.)  I've been eating the same few foods every day for at least 6 months now.  My usual diet is both gluten-free and dairy-free.  I made several exceptions to my diet for the holidays, and I really paid for it.  First, my digestive tract became completely blocked (thanks to some cookies and cheesecake).  After a few days of being stopped up, I was miserable...so bloated and stuffed.  Everything I ate started making me sick.  Then, I had a new experience.  I developed intense nausea, since my body didn't want to accept any more food.  But, due to my lack of a gag reflex, I was unable to vomit.  My body tried and tried to vomit, and it felt like I was about to vomit.  You know that feeling, where you get a sudden flush, your mouth salivates, and then your stomach contracts really hard?  It happened over and over again.  I could taste the vomit on my breath.  I needed to vomit, but nothing could make it happen.  I had two of these episodes over the holidays, one of them being the night of my birthday.  And I hope it never happens again.

I finally resolved the problem, thanks to some powerful laxatives, powerful anti-nausea meds, and getting back to my usual diet.

So, what is in the diet that doesn't make me sick?

Breakfast: Joe's O's with Almond Milk

Lunch: A banana, some baby carrots (cooked, if I'm sensitive; raw if I'm regular), and rice cakes with natural peanut butter

Dinner: A chicken breast tender, steamed mixed veggies, and brown rice

Snacks are usually gluten-free cereal.

Luckily, I'm not sensitive to herbs or spices, so I can flavor my food any way I feel like.  Anything outside of this diet is potentially dangerous.  For example, I tried trading my rice out for quinoa...my body rejected it.  Organic graham crackers were disastrous.  A simple salad can spell disaster.  My body is so picky!

Anyway, that's the news.  I'm sitting here in traction, anxiously counting down the days until surgery.  Just over 2 months now.  I'm nervous, but also tentatively hopeful, as always.  I'm also sad to know that when surgery comes, it's the end of a way of life.  I'll be moving out of my first married home, and back in with my mom.  And I won't be moving back to this home after recovery, thanks to my husband moving for work.  So, it will be a huge change.  It's sad to leave behind this happy life, but I'm hoping that I'll have much to look forward to with healing.

Thanks so much for reading my story and actually caring.  I feel very loved.  I also really appreciate every single donation to our fundraiser, as the expected medical expenses are overwhelming for a grad student and a disabled piano teacher.  Thanks!