The Countdown is On

17 days until surgery!!!  Yikes.

Here's a fun list of our expected medical expenses for this year:

Surgery with an out-of-network provider at an out-of network hospital
Flights to and from New York for surgery
Physical Therapy before and after surgery
Lodging for 10 days in New York
Rental car for 10 days in New York
New Aspen Collar
Massage Therapy after surgery
Dry Needling after surgery
DEXA scan before surgery

Also, we found out that our insurance premiums, deductibles, and out-of-pocket maximums have all been doubled this year.  In addition, our out-of-network coverage has been lowered to 70%.
















If you are able to help in any way with these costs, it would mean so much to us.  My medical fundraiser page can be found here:

http://www.youcaring.com/medical-fundraiser/Carolyn-s-Surgery-Fund/36820

We are so grateful for your support!

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Updates:

Last week was torture.  I had a migraine with pain level between 8 and 10 for five days straight.  It killed me, and made me really scared for the upcoming surgical pain.  But also hopeful that days like these may be less once my skull is stabilized.

Today, I had my DEXA scan.  A simple test that consists of a few x-rays that is used to determine your bone density.  In a week, I'll get the results to confirm that my bones are still strong enough for surgery.

This week, I have to say goodbye to my piano students, which breaks my heart.  I won't be living in Milwaukee ever again!  I'll spend recovery in Illinois, then move to Madison, with my husband.  So I have to leave my students behind, which is really heart-breaking.

Next week, I have a doctor's appointment for surgical clearance.  This is basically a very thorough physical with a complete blood work-up.

We leave for New York on March 12.  Pre-surgical testing at the hospital in NY is the 13th.  Surgery starts at 7:30 AM on the 14th.

I'll update again soon, as my thoughts are more and more consumed with anxieties, fears, maybe even a few hopes?

Hope things are going well, and thanks so much for checking in!

A Change is Coming

My surgical fundraiser page:
http://www.youcaring.com/medical-fundraiser/Carolyn-s-Surgery-Fund/36820

"Any change, even a change for the better, is always accompanied by drawbacks and discomforts." —Arnold Bennett

So, emotionally, I’ve been dealing with the quickly approaching major life changes.  In March, I will move out of my home with my husband, and back in with my mom and stepdad.  I will have to leave behind my small piano studio and my students.  When my surgical recovery is complete, my husband will have moved to a new home (location yet to be determined).  So I will not be able to return to our home or to my piano studio.  When I leave in early March, I have to plan to live in a new home for at least 6 months, away from my husband.

In the middle of March, I will travel to New York for 10 days for my surgery.  As always, this surgery brings a lot of anxiety.  There is, of course, the expected surgical pain and post-surgical complications.  I have a fear of the moment when you wake up from surgery to your new reality; the pain and new sensations that you feel, and will continue to feel through the healing process.  Along with this fear comes the hope of improvement with healing.  After four major neuro-surgeries over the past 11 years, I know not to set my hopes too high.  There is a potential for dramatic improvement, and a potential for great disappointment.

So, what is reasonable to hope for?

Not a relief of all chronic pain.  This has multiple causes, including EDS-related body pain and chronic hereditary migraines unrelated to cranio-cervical instability.

Not a relief of all POTS symptoms.  POTS is also associated with EDS.  It may improve, and it may stay the same.

Fatigue will probably linger, as well as food sensitivities, IBS, back pain, and various other symptoms.

What can improve?

Any symptoms related to cranio-cervical instability have the potential to improve.

The biggest ones I am hoping to see improvement of are the periods of stupor, reliance on the collar and cervical traction, and increased endurance for upright activity.

Other symptoms that could potentially improve are:

-episodes of nausea

-enlarged pupils

-swallowing problems, including choking and aerophagia (with associated bloating)

-nighttime one-sided weakness and paralysis

-double vision, difficulty focusing eyes

-jaw pain and function

 -dizziness and balance

Okay, I’ll stop there.  I don’t want to get carried away. 

The surgery will take many things from me.  I will miss out on at least 6 months of my life for this.  I will undergo more traumatic times in the hospital and pain and discomfort after surgery.  I will not be able to live with my husband for at least the first 6 months.  Also, depending on where he moves, I may have to endure much of the recovery without seeing him.  But l know that it will be worth it when I think through the things that should get better, and the many, many things that could get better.

If I have improvement in just a few major symptoms, like my upright endurance, my periods of stupor, and my dependence on traction, this surgery will be worth it.  With those improvements, I could live a much more functional life.  I could have more than one hour upright every day.  I could probably teach more piano students and spend more time with friends and family.  That would make it all worth it.

So, I’ll do everything I can to make that happen.  I have to try.

Currently, my focus is on scheduling pre-surgical testing and getting insurance issues worked out.  The cost of the surgery is so daunting, since so much of insurance coverage is unknown.  I’m also just trying to enjoy the month I have left of my regular life.

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!

Surgery Booked and Fundraiser

My surgery fundraising page can be found here: http://www.youcaring.com/medical-fundraiser/Carolyn-s-Surgery-Fund/36820

In other news, surgery is booked for March 12--I feel like I have 3 months left to live.

Planning for surgery

I'm planning on scheduling surgery in March.  This surgery will be another complete reconstruction of my cranio-cervical fusion.  I recently wrote to Dr. B for some information about this surgery.  Here's the email I sent him, with his responses after each question.  More surgery--sounds like a good time to me.

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Dr. B,

Hi.  I’m writing to you with a few updates and questions regarding my upcoming surgery.  I understand that I have been approved by the surgical review board for a craniocervical fusion revision.  I am planning on scheduling that surgery in March, working around the schedules of my mom and my husband, who will be helping me with recovery.

I wanted to update you on my condition.  I began having episodes of left-sided paralysis in the middle of the night, after sleeping for a few hours.  The paralysis affected my whole left side, including the left side of my face, and lasted for about 10 minutes.  Then it would wear off.  After that happened a few times, I began sleeping in my collar.  So now I wear my Aspen collar 24 hours a day, the only exception being when I’m in the shower or in traction.  As long as I wear my collar, I do not have episodes of paralysis.

Also, I have been exercising regularly, and I am in really good shape.  My core is very strong and my heart is strong.  I hope this will help this recovery to go more smoothly.

I have several questions about my upcoming surgery and recovery.  Obviously, I will do everything in my power to help this fusion to be more durable.  I want to understand what I can do to help the healing.

1. What caused my current fusion to fail?

            Lack of adequate bone fusion to reinforce the hardware, with consequent metal fatigue.

2. How much damage will be done removing my current hardware?

            Not much.

3. What is specifically planned for my new fusion? 

            2 screws in the condyles (aka the base of the skull), 2 screws in C1, 2 screws in C2, 2 new short bars 3.5 cm long.

How will it be different from my current fusion? 

            Shorter and stronger.

What are the benefits and risks associated with the updated fusion technique?

            Stronger and shorter.

            Risks are the same as the old one, with the addition of a small risk of affecting the hypoglossal nerve (which commands the tongue)

4. How long will I need to wear a collar after surgery?

            5 months.

5. How long should I wait before I stretch or turn my neck after surgery?

            5 months before you work on restoring range of motion.

6. What is the goal of post-surgical PT?

            Helping soft tissues and (later) the range of motion.

7. Will it ever be safe to sleep without a collar, or should I always wear it to sleep?

            No need of collar at night, or while washing, or in bed, or while eating.

Thank you so much for your help.  I want to be as prepared as possible for this surgery.