Home from Surgery

I have never been so glad to be home!

My Cranio Cervical Fusion Revision on March 14 did not go smoothly.  It was the most harrowing experience of my life.

There were several complications.  It started off with a difficult intubation.  Since my neck is already fused, I have to have a conscious fiber-optic intubation.  I remember the difficult process clearly.  They spray your throat to numb it, first.  Then, they try to put the breathing tube in while you're still awake.  It apparently did not go well.  My throat was really torn up in the process, causing a lot of inflammation.  Due to this inflammation, they had to keep me under anesthesia for 7 additional hours, after a 9 hour operation.  Being under for 16 hours was a really bad start.

I woke up at 4 AM the next day during the extubation, which was horrible.  But as much as my head and neck hurt from surgery, and as sore as my throat was from being intubated, my number one complaint the first day was my burning eyes.  By the end of that day, I had an explanation, which was that during the long operation, I developed corneal abrasions all the way across both eyes.  The pain was unbearable.  My eyes are still red and healing now, 12 days after surgery.

My POTS (Postural Orthostatic Tachycardia Syndrome- a form of autonomic dysfunction) got a lot worse after my long surgery.  There were multiple triggers for my POTS, including 16 hours of anesthesia, changes in medication, fighting off a virus, and a lot of sedentary time.  So, my heart rate and blood pressure became very unstable, with episodes of very high tachycardia and quite low blood pressure.  My heart is also very reactive to every movement I make.

The hardest part came days 5-7 in the hospital.  After making some progress in terms of moving around and starting to heal, I spent Tuesday through Thursday fighting for consciousness.  I never got a solid explanation for what was wrong.  Could have been severe POTS or a reaction to the pain medication (even though I only took pediatric doses of anything, and I've tolerated these meds fine in the past).  I felt like I was under a heavy blanket of fog that I couldn't get through.  These days were so long, and the darkest days of my life.  I felt my heart straining, with a constant feeling of palpitations.  There was a fear at this time that I would never fully regain consciousness.  The doctors really never explained what went wrong.  I kept telling my family that I didn't want to be intubated again, and I didn't want a feeding tube.  "No Tubes!"

Thankfully, on Thursday, late afternoon, I started to come out of it.  A substantial part of waking up was my husband deciding to give me my usual dosage of salt for my POTS.  They didn't give me this at the hospital.  I became a bit more alert and aware of my surroundings.  I did my PT.  I got the last of 4 drains removed that night.  I was released on Friday afternoon-9 days in the hospital.  Due to these complications, my family had to extend their travel plans.  We had expected to fly home by Thursday, but couldn't leave until Saturday.  So, flights had to be changed (which was incredibly expensive) and hotel and car reservations had to be extended.  I was just so relieved to be getting out, after thinking that this hospital stay may have lasted for weeks.

Our travel day was difficult.  Our flight was delayed, so we didn't get home until 3 AM (which felt like 4 AM to us).  The pain was intense.

Ever since Tuesday (4 days after surgery), I had to switch to taking only Tylenol for pain.  Any other medication could have potentially contributed to my reduced consciousness. The pain is intense.  The Tylenol brings it to a just tolerable level, most of the time.  The worst pain is where my old rods were removed (using all sorts of fun tools like bone saws and chisels).  There was a lot of destruction in those areas, and a lot of healing is needed.  I have a constant ache with frequent sharp pains in these areas.  The other major pain is from muscle spasms in the neck and shoulders.  This will take months to loosen up, with massage therapy and dry needling.  The muscle spasms cause migraine-like headaches.

Currently, my days are really unpredictable.  I'm still having trouble with: skull pain, muscle spasm, tachycardia, episodes of reduced consciousness, burning eyes, numbness in various areas of my body, and regaining bladder control.

My POTS is so severe that I require salt pills and water spread throughout the day (basically like receiving IV saline all day).  If I don't take the salt, my tachycardia gets worse, I get short of breath, my lungs start burning, and I tend to lose consciousness.  Thermotabs are the only thing keeping me going at this point.  Hopefully, my dependence will be reduced over the next few months of recovery.

With so many complications, it will take some time to see improvements to be gained from this terrible ordeal.  So far:
-Swallowing seems to be improved--I can swallow water without swallowing excess air, and I can swallow pills without contorting into strange positions.
-Pupil reflexes are sometimes improved.
-POTS is worse, for now.
-Migraines are the same--I've had 2 migraines since surgery--The first was day 5 in the hospital.  The second was our travel day and the following day.
-Pain and muscle spasm are worse, for now.
-Balance may be improved.
-Digestion seems to be improved--I'm still experimenting, so I'll update more on this once I know more.

Current plans:
Staple removal is this Thursday (just 2 staples where my last drain hole was).
Stitch removal is 2 weeks from Thursday.  (They want them in for 4 full weeks.)
No lifting of anything over 5 lbs. for 6 months!  It makes me feel completely helpless, but I'm not willing to risk the perfect positioning of this fusion.

I have been traumatized by this horrifying surgery, more than any past surgery.  I get a wave of nausea thinking about hospitals and doctors.  And I have an intense fear of losing consciousness again, feeling that I'll never be able to wake up.

So, I really hope this fusion last, because I'm not going back.  I refuse.  I'm too scared.  I spent my 20's having surgery, needing surgery, recovering from surgery.  I'm hoping to spend my 30's focused more on living.

Wonderful things about being home:
-I get to take my normal daily medications that they did not give me in the hospital, including my anti-depressant and my anti-anxiety meds.  I will never understand why they don't administer these meds in the ICU.  It's the most stressful time of your life, and your emotions get completely out of control without your daily meds that help you to stay stable.
 -I don't get woken up every hour of the night for: blood pressure checks, Heparin shots in my stomach, finger pricks for blood glucose checks, bright lights in my eyes to check my pupils, and medication that I definitely don't need to take in the middle of the night.  I get to sleep as much as I want, which makes my POTS more manageable.
-I get to eat real food.  Seriously, the first night out of the hospital, it was like a flavor explosion in my mouth!
-My dogs are here :)

Thanks to Dr. B, surgery has been approved, and we can go forward with our original plans.  Fly to NY on Tuesday, pre-surgical testing at the hospital on Wednesday, surgery on Thursday.

Surgery Coverage Denied!

Very bad news today.  Insurance called me and informed me that surgery is not authorized.  I will spend the next 2 days making phone calls, but it is very likely that surgery will need to be reschedule after approval is attained.  I cannot believe this is happening.  Everything is already set in place.  Flights and hotels are booked.  Family has taken off of work.  I've discontinued piano lessons with my students and packed all of my stuff to move back in with my mom.  Everything is planned around this surgery date.  I am officially freaking out, and I feel completely helpless at this time.  It will be up to my surgeon's office to convince my insurance company that surgery is a medical necessity.  I don't know how to handle this one.

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.