Tuesday, December 11, 2012

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.

Sunday, December 9, 2012

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.


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.

Thursday, November 8, 2012

New, Scary Symptom

The problem happens while I sleep. It's happened 5 times in the last few months. I wake up in the middle of the night, and my entire left side is completely paralyzed. This includes the left side of my face and my eye, my left arm and left leg. The first time, I thought it was a stroke. It lasts a few minutes, then, very gradually, I can start to move, with much effort. First, my fingers come back, and my toes. I work on moving them as much as possible, and gradually it all comes back. Maybe 10 minutes for the whole episode. But it scares me soooo much.

My only guess on the cause is that some nerves in my neck are getting compressed while I sleep.  I plan on sleeping in my Aspen collar every night until surgery from now on.  I can't stand for this to happen again.

In other news, the intensity of my daily headache has decreased again, from an 8/9 to a 5/6.  It's not great, but significantly less bothersome.  Considering surgery in the early spring, if things continue like this.

Thanks so much for following my progress and the encouragement along the way.

P.S. I am not considering a second opinion or surgery with any doctor other than Dr. B.

Friday, October 26, 2012


As much as I want to put off my cranio-cervical fusion revision surgery as long as possible, this week has made it clear that the symptoms of the failed fusion are in control, not my life circumstances.  I'd love to wait for a convenient time, but my body is failing again.  I can't put it off much longer.

This week, I have had a constant headache that is similar to my intense migraines, with slight differences.  You know it's not a migraine when straining doesn't make it worse, but every step you take does make it worse.  Sharp pain in my temple, my eye, my cheekbone, the top of my head, and especially in my right rod in the back of my head.  I just can't stand it.  I can't sleep it off.  I can't make it go away.

Then, there are the usual symptoms related to being upright for too long:
-Pupils are dilated all the time...quite large.  At times, everything seems too bright, since my pupils won't accommodate for light.
-Seeing stars is becoming much more frequent.
-Nausea kicks in at times.
-Dizzy spells including vertigo and lightheadedness
-Being completely out of it, in a haze, etc.

This is despite being in traction most of the day every day.

I'm still exercising regularly to keep my pots symptoms and back pain under control.  I walk on the treadmill of 23 minutes every day, and I do my core strengthening exercises to keep my back and neck strong.  This helps with some things, but not the failed fusion problems.  It reduces my number of migraines, but not my instability headaches.

Today, the pain has just worn me very thin.  I keep crying, because this pain is so incessant, and because I don't want to have surgery again.

Not to mention, I'm still trying to pay off a simple little bill for the consultation in NY in June.  How on earth will I afford this surgery, when I have absolutely no expendable income...ever.

The great news is that they are doing a very new version of the fusion.  Much smaller incision, shorter but thicker rods, longer screws for increased stability.  New recovery protocol to encourage proper healing.  All reasons to think that this surgery should be better than the last ones.

I gotta go.  The pain is too intense.  I just can't handle all of this right now.

But this is the beginning.  The part where you learn to accept that you need another surgery, and it can't be put off much longer.  It hurts, but it will be a lot easier once I can just accept it.  (I should know.  I've been through this before a few times.)

Tuesday, October 16, 2012

October 2012 photos

 Just posting some photos tonight.  The first two are pictures of my scar as it is today.

This picture is not supposed to show my angry face.  Just the normal size of my pupils, even in bright light, a sign of my autonomic dysfunction.

Here's my sweetie and me...wearing my collar, as always.

Whenever I'm not wearing my collar, I'm using my inflatable traction, as shown in this lovely photo:

Here's a shot from my 3D ct scan.  It apparently shows my C-2 screws.  The screw on the left is basically loose.  It doesn't actually penetrate the vertebral body, so it is not secure.  So I really do have a screw loose in my head!!!

And here's a lovely picture showing excessive bone growth.  But basically it's just an awesome picture of my fusion, if you can tell what's bone and what's metal.

I'll post again with updates soon.  Basically, I know I will have this surgery eventually.  I have reason to believe that the revision of the fusion will be more effective this time around.  But I'm going to put it off for now.  More later.

Thursday, September 20, 2012

So much to think about

Well, I received a very surprising email from Dr. B yesterday.  He told me that the TCI surgical committee has approved my Cranio Cervical Fusion Revision, and I can schedule it any time.

I am not ready to schedule a surgery that I don't even know if I want to have!  This is the same surgery that was done two years ago.

I wrote back to Dr. B with a list of questions.  He answered quickly, so I'll include the questions and answers here:

1. What exactly is wrong with my current fusion?
Dr. B's answer: A bit wobbly.  One screw is in a suboptimal position.

2. Which of my symptoms could be caused by the suboptimal fusion?

-headache and neck pain?
-autonomic symptoms?
-dizzy spells and nausea?
-reduced endurance for upright posture?
Dr. B's answer: Probably all, especially if the symptoms are improved by lifting your head up.

3. What would the surgery entail?  How much of my current hardware would need to be replaced?
Dr. B's answer: We would remove the old hardware and implant new screws in C1 C2 and occiput, plus a new (thicker) bar.

4. What is my prognosis with and without this revision?
Dr. B's answer: WITHOUT: You would probably stay the way you are, with minimal changes of hardware breakdown.
WITH: About 80% chance of improvement, especially if the symptoms are improved by lifting your head up.

OKAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  What now????????????????????????????????

This is so much information to take in.  I have no idea how to handle all of this new information.  I thought my fusion was fine...all this time.  And why is it wobbly?  And why isn't the screw in the optimal position?  How did this happen?  The last crazy, major, invasive operation was supposed to fix anything "suboptimal" about my fusion.  So now, just two years later, I'm supposed to go back and give them another go at it?  Sure, open me up...remove tons of metal and bone...remove my entire skull-spine joint...and try to get it right this time???????

I'm not actually mad at the doctor.  Just in shock at the situation.  I'm approved for another surgery.  Usually, I'm ready to schedule it and get it over with as soon as possible.  But this time, I don't think I'm ready to dive in again.

The last surgery took about 18 months to recover from.  (9 hour operation=18 month recovery)  How do I decide that it's time to give up another 18 months of life?  How do I figure out which 18 months I want to miss out on?  How do I face having my body ripped up and re-made, and the agony that follows?

So many factors to consider:
-My level of functioning has been relatively high in the last 2 months.  The last 10 days have been horrible, though.  Drops in blood pressure and heart rate, needing even more sleep and rest time, crazy bad migraines, needing my collar at all times, even during sleep, and a lot of nausea spells.
 -I currently have just started another new group of piano students, and resumed lessons with several older students.
-My husband and I will be moving next summer.  Don't know where.  It depends on where his PhD program sends him for his internship year (2013-2014).  How will I work around this? Will I be able to move with him?  Am I willing to spend a year apart from my husband for any reason?  (This one's easy--no, I'm not.)  Does that mean I should get the surgery over with now and hopefully be recovered enough to move with him in the summer?
-How do I know if this surgery is worth the risk?  You give up so much, but have no idea if it will be worth it at all.  Maybe there will be improvement?  But will it be worth it?
-How long can I reasonably put this off?  I already need my collar full-time.  How bad is it going to get?  Isn't it better to go into surgery when you are strong, thus reducing the recovery time?

All of this is on my mind full-time now.  It's just sickening to have this hanging over me like a dark cloud.

Anyway, I just thought I should let you all know where things are at now. I truly don't know what to do about my life.  I feel like a lost cause...

Tuesday, September 4, 2012

News from New York

I wrote this email to my nurse at TCI:

August 30, 2012

Hi Denise,

I'm following up from my appointment with Dr. B on June 8 of this year.  He ordered multiple tests at that appointment, including a CT scan, DEXA, and LP.  I completed all of the tests in June.  I also started an intensive exercise plan and physical therapy immediately after my appointment.

I have seen some significant improvements since my appointment.  My heart rate and blood pressure are being well controlled, without medication.

However, if I go even 15 minutes without my cervical collar, I develop an intense headache, followed by dizzy spells, seeing stars, and decreased consciousness.  My physical therapist says that I have improved my neck strength and core strength dramatically, due to committed daily exercise.  She does not believe that muscle weakness could be causing my problems.

I am wondering what the next step is for me.  I am dedicated to daily exercise, including cardio and core strengthening.  My quality of life is improved, but still very limited.  Even with the collar on, I do need frequent rest to avoid symptoms like head pain and dizziness.

In addition, the Aspen Vista collar that I got on July 2 has gotten a crack in it already.  I need a new prescription for a new collar.

Thank you so much for your help.  I would really appreciate some idea of what, if anything, can be done for me, and if I will continue to need this collar for the foreseeable future.


I received this response:
September 2, 2012

Imaging review

Suboptimal position of the C2 pedicle screws (R>L)
Some bone deposition between C2 and the base of the skull

If the patient is very symptomatic, we should consider a CCF revision


I don't know exactly what this means.  But I understand that my fusion is not quite right and could potentially be improved with surgery.  I am not considering surgery at this time.  For now, I'll keep exercising and wearing my collar.  But I know that at some point, when finances and life circumstances are right (or when I get too sick to stand it anymore), I'll need to look into a revision of my fusion, again.  I had my first fusion in 2003.  I had my second fusion in 2010.  And it has never been right.  I don't know if it ever will be.

Wednesday, August 1, 2012

Improvement: Not Quite Slow and Steady

So, I've been working intensely to try to improve my condition.  This means:

*Cardio for 30 minutes, every single day
*Leg exercises to add bulk to my legs to improve POTS
*Core strengthening exercises to build up my neck, back, and core

I have gained about 10 pounds of muscle.  My body is a very different one than it was just 6 weeks ago.

The improvements have been impressive, at least some of the time.

My blood pressure has improved a lot (gotten higher).  I no longer need Midodrine to raise my blood pressure regularly.

My heart rate is often improved.  It's still usually high in the mornings, but slows down by mid-afternoon.

Of course, I still have bad days.  I can't pinpoint the cause of the ups and downs.  Perhaps I overdo it one day, and the following couple days are worse.  On bad days, I still have low blood pressure, fast or slow heart rate, migraines, fatigue, and brain fog.  But even on bad days, I do not skip my cardio.

I am starting to add back students to my piano studio, gradually.  I have a lot of anxiety about this.  I am so scared that by adding even one or two hours of work, just a few days a week, I will not be able to stick to my exercise routine.

And exercise is key to any improvements I've been experiencing.

It's a very delicate balance.  But I'm doing everything in my power to get healthy.

I still can't go without my rigid neck collar.  If I do, I develop a headache, followed by nausea, followed by reduced consciousness.  That's a sign that something is still wrong.  But for now, I'm just going to wear my collar and manage symptoms, because nothing else has been recommended for me at this time.

If I continue to have problems that PT/exercise cannot help, I will consider seeking a second opinion on my fusion with Dr. Fraser Henderson.  For now, I'm plugging away.