New stuff

I know it has been a while since my last post, I just didn't really have anything to say regarding my condition.

Until now.

On Thursday the 18th of February I had a followup appointment with my Physiatrist, Dr Donna Moore.

There seems to be some new affects of my spinal cord injury.

My tongue is curling up on my right side. Also I am going to have a swallow test done, because it seems that I have Pulmonary aspiration.
This would explain my persistent re-occurrence of Pneumonia. Also I have noticed trouble swallowing my pills, when I had never had problems before. I am noticing that sometimes when I drink some water or pop that it feels like an air bubble is getting stuck, which is quite painful and very scary.

I am also having trouble with bodily functions that seem to be linked to my spinal cord injury. My doctor is very concerned with all of this. I was scheduled for an MRI in mid-March, but due to these recent discoveries, I will be having one sooner.

I have been fighting a cold for the last couple of weeks, in which I thought I was getting better - until today.  I woke up with my normal pain level of a 7, to an 8. Killer headache - more than normal, my neck pain was more painful than normal, coughing a lot, and I spiked a fever. I spent most of the day in bed, and my fever did subside.  So now I will be trying to get into my doctor tomorrow. It sounds like pneumonia.  :(

So please pray for me and my family through all of this. Thank you!

*UPDATE* I went to the doctor today and was put on antibiotics - Azithromycin, as a precaution and now we just wait to see if a fever appears or not. If so, I will be headed back to the doctor for some more help. 

My Latest Doctors Appointment

Here is an explanation to what a Physiatrist is, Dr Brzusek of Spine Universe, defines Physiatry as: "A physiatrist is a medical doctor who specializes in physical medicine, rehabilitation, and pain medicine. These spine specialists focus on the body's musculoskeletal system, which includes bones, joints, muscles, ligaments, tendons, and nerves. Physiatrists treat patients of all ages with diverse problems ranging from simple low back sprains to complex disorders, such as spinal cord injury. Their comprehensive approach includes treating the entire patient, not just symptoms.

My Physiatrist is Dr Donna Moore who practices out of the Silverdale Group Health. As as I said in an earlier post, she is the best doctor I have ever had.

As I went into this appointment, I had increased symptoms since I saw her last month. My spasms have been increasing on a uphill climb and my pain level has also increased. We were concerned because there was talk of possible cysts that could have formed - this would explain the enlarged spinal cord. I learned that cysts form in 30% of all spinal cord injuries. My Neurosurgeon, Dr Gala, classified the enlarged spinal cord as, "Delayed Rapid Infusion Injury". Which made no sense to me, or him. I do not think he actually believed it when he said it. Normally when blood rushes through after decompression of the spinal cord, there is a possibility of a Rapid Infusion Injury, which would happen right after surgery. However in my case it did not appear until 5 months after surgery. So cysts would make sense.

However after examining me and asking some questions, Dr Moore is convinced that it is not a cyst or a tumor because I am not losing motor function. She said it would be very evident as I would wake up with complete loss of function in one of my limbs or any other muscle - depending on where the cyst would form. She said that the increased spasms are a normal situation as scar tissue begins to harden over time. I also learned that I will be dealing with spasms of some level for the rest of my natural life.

As for the constant pain and increased pain, both Dr Moore and Dr Gala are completely perplexed to why this is happening. So for right now we are just treating the symptoms. So that means more pain pills than before. My walking with my left leg has become quite difficult. I am told that it is because of the increased spasms, which have increased my muscle tone to the point of not being able to bend my left knee very well when walking. So to combat this I will be fitted for a leg brace that will keep my foot pointing upward while walking, which will allow my knee to bend better.

So the good news is that as far as the spinal cord injury goes, I am not getting any worse. For that I am very thankful.

Only through Christ who strengthens me am I am able to live through all this. My church has been my tower of refuge in this crazy storm. Also of course, my wonderful bride, Jana, who has given her all to take care of me. She truly is a gift from God.

So now in a matter of weeks, not only will I have eyeglasses, I will also have a leg brace. All to add to my cane. That will be a picture... Maybe I will share that with you. :)

Thank You for reading.

Eric

The continued saga... Spinal Cord Injury and more.

Before I got sick, I was a full time worker.  I supported my family.  I worked as the Plant Manager at Olympic Presort in Bremerton/Silverdale for over 10 years.  After I fell in November prior to surgery, I had to stop working.  That day for November 22, 2010.  So after my surgery my goal was to get back to work as soon as I could.  I was going to physical therapy and trying to get my left hand working again and strengthening my left leg. I was out of the walker and using a cane for safety. My plan was to start slowly going back part time as soon as my strength would allow it.  I was going crazy at home.  Bored out of my mind, I was pushing myself to get strong.  I still had my headache that never went away, even after the surgery. But, with medication, it was tolerable. Finally in March 2011, I started going into work for a maximum of 4 hours per day.  The first days were rough and I barely lasted 2 hours.  Eventually after a couple of weeks I was able to work my four hours daily. 

My pain was tolerable and I was getting better.


Then one day... I started feeling a tingling in my right hand.

Then my neck pain started getting worse, and my head pain increased as well.  I was put of loads of pain medication, which of course meant I could no longer drive.

I was getting very nervous as I had been down this road before.  The last thing I would want is to bear through another surgery.  But of course, I called my Neurosurgeon and he ordered another MRI.  The MRI showed that my spinal cord where it had been compressed was now enlarged.  We tried shocking the spinal cord with steroids - which did nothing.  Then I was told to wait 3 more months and do another MRI to see if there were any changes.  The results were the same.  Theories from the Neurosurgeon were that after decompression my spinal cord was overwhelmed with a rush of blood.  This would of been normal if it happened right after surgery.  But in my case, it was a delayed rush of blood - by about 5 months after surgery.  It sounded weird when the doctor said it, and I wasn't convinced from the way he told us that he actually believed it.  I was assured that it was not dangerous and that there was nothing surgically that needed to be done at this point.  For that I was relieved.  As far as he was concerned, the surgery was a success in that it prevented paralysis. 

So now I was not working again.  Which is still the same to this very day. 

I then was referred to the most wonderful doctor I have ever had.  My Physiatrist, Dr Donna Moore.
She knew exactly what was happening with my nerves and could spell out my symptoms perfectly. 

That is when I discovered that while I was weak on the left side, I was desensitized on my right.  I found this out the hard way when I woke up one morning and Abby screamed out that I was bleeding on my right side.  Evidently I fell sometime in the middle of the night, which I do not have any memory of, and gashed my right side of my torso.  I did not feel it at all.  I had no pain whatsoever from the wound.

So now I am on loads of medications to prevent pain and spasms.

I had a huge fight with Pneumonia for which I finally ended up in the hospital for 4 days after 3 rounds of antibiotics. I am told that it is all connected to my condition of Klippel-Feil Syndrome.

So after I stopped working, I applied for Social Security disability as I could no longer support our family.
 I have been denied twice now.  Now we have an attorney and filed an appeal in late July.  For this appeal I will have a hearing with a judge.  However this is not some quick process of making an appointment for the hearing.  My attorney informed me that the hearings are being scheduled by the court and they are running about 10 months out.  I could not believe that it was going to take that long. 

I stopped working full time on November 22, 2010. 

I was notified by my attorney this week that my hearing is scheduled for April 30, 2012.   It will have been 17 months by the time I have the hearing. 

So now I have been supported by my wonderful church through 2 love offerings, and some support from my family as well.  It has been a real test of faith for sure.  But I know that God provides.  He always has.

For that I am thankful.

Klippel-Feil Syndrome

In May 2010, I woke up with a headache and it never went away. That morning started the beginning of my life changing forever.

I visited Urgent Care, Primary Care Doctor, Neurologist, Physical Therapy, and finally a Neurosurgeon.

Through a series of tests, I was diagnosed with Klippel-Feil Syndrome. I was told that I was born with it. It only took 34 years for a doctor to figure it out. It was only because my Primary Care Doctor, Dr Brian Miller was out sick. Which of course was God's provision. I saw Dr Laplant, which I saw as a child. After reminiscing that I made him feel so old, he said, "You look like my roommate in college, he had Klippel-Feil Syndrome. Let's look into that." That started the ball rolling.

I was referred to a Neurologist who ordered an MRI, but said, "it is just one of those things you have, but nothing is ever done about it." He decided that I don't need to be on pain medicine and took me off of it. After the MRI, I was scheduled for a phone consultation to go over the MRI results. However prior to that appointment, about an hour before I received a phone call from a Neurosurgeon's office. They wanted to schedule an appointment after being referred by my Neurosurgeon. That was a pretty long hour to wait to find out what was wrong.

Finally the phone call came... I had a "very dangerous situation". My brain stem was being pinched off by deformities in my spine and skull. Evidently my spine was 2 inches higher into my brain than a normal person. Because of this my spinal cord was compressed. He then put me back on pain medication, as I was not faking it. :)

So finally I went to Seattle to see my Neurosurgeon, Dr Vishal Gala. I was told of my very dangerous situation. I was to have a Cervical Lamenectomy and Cervical Spinal Fusion, c1-6. I was told how this was "VERY MAJOR" surgery. So after a few more tests, I agreed to the surgery. This was the beginning of September. I was told that the scheduler would call to schedule the surgery that would be performed by Dr Gala and his associate, Dr Lee.

Finally the scheduler called. The first available appointment is December 19th!

I couldn't believe I had to wait that long, but I was told because it was a team surgery, they had to wait for their schedules to mesh.

While I was waiting...

I went from a headache, then having a numb left hand. This a numb right hand. Then in the middle of the night I fell in the bathroom - broke a rib. :(

Then my left leg started dragging. I had to forcibly lift was left to walk, it did not come natural.

Then my left hand began to clinch and curl. Finally the weekend of Thanksgiving, I deteriorated rapidly. I could not walk, I could not unclinch my left hand.

We went to see Dr Gala right away, and he was amazed how fast I had deteriorated. Moved the surgery up to next week. Dec 2, 2010.

After a 12 hour surgery at Virginia Mason in Seattle - that was horrific, I came out of surgery in massive amounts of pain. It took them 3 days to finally get the right type and amount of pain medicine. This process is something that I would not wish anyone in the world to have.

After surgery, my walking improved dramatically, although not even close to normal. My right hand was no longer numb. My left hand began to un-clinch after being put in a customized brace. The surgery was a success, although a long recovery would begin. After 4 nights in the hospital I was able to come home. I had to use a walker to walk. Very painful. I was told after surgery that I was 2-4 months away from full paralysis that would not be able to repaired. They saved my life.

After this was the recovery and everything was getting better until one day it stopped getting better and new symptoms arrived... Which I will explained in a post to come.

Below are the pictures...

This is the MRI before surgery.  If you look where the brain stem goes down - that is where it was pinched off.

This is the after surgery X-Ray. Titanium rods and screws.

This is me after surgery in the hospital.

 This is my left hand that had to be braced after surgery. It was clinched and curled inward before hand.

 There I be...  :)

 Back of my head. With 35 staples.  :)

The yellow socks complete the ensemble.  :)

Crazy Eric!

Welcome to my attempt at making a blog.  This is the adventures of Crazy Eric and his goofy family. 

Pictured below:

Jana, Eric, Abigail, and Joshua.