Monday, February 25, 2013

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:

We are so grateful for your support!



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!

Tuesday, February 5, 2013

A Change is Coming

My surgical fundraiser page:

"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.