Friday, November 21, 2014

Surviving and Scared Turns Into Scarred Success

Some of you may or may not know but I had spinal surgery back in May of this year.   I had to have a cyst removed from my right sciatic nerve root in my lower lumbar spine that had been plaguing me with chronic low back pain for over ten years.

For ten years, I was just surviving, just making it through every day one step at a time.  One painful movement at a time, I made it through and survived but I was worst nightmare had always been surgery and I didn't want to do it.

I'm not gonna lie, I wanted nothing to do with putting a few sharp instruments near my spinal nerves, in my spine (yea they had to dig out part of the cyst from my spinal nerve root's home in my spinal column, it had grown that far in), and around my nerves that control my legs.

The first time surgery was talked about to fix the problems I was having, they had told me ten years ago that there was an 80% chance that I would lose most of the use of my right leg.

When I heard that percentage rate, I said no.  I said, hell no, to be exact.  LOL

So I decided at the time that I could try to live a normal life with the pain by controlling it with pain medication...which slowly but surely increased in dosage and brought on another problem.

My body became addicted to the codeine....and I noticed it.  The twinge in my shoulder blades when I tried to wait longer and take fewer of my pills.  The twitches and muscle spasms that you can't control when you go through withdrawal from a medication that my body has been used to for about 8 years. 

My pills....what a mess that became.

Oxycodone 20 mg every four hours round the clock and Morphine Sulfate extended release 30 mg every 12 hours was where I was at when I decided things needed to change.  I couldn't take it anymore.  The pharmacy staff were starting to look at me like some kind of a drug addict, a "pill popper" if you will.  I had to wake up in the middle of the night to take a pill, wait for it to work and then finally get back to sleep just to wake up four hours later and repeat the process only this time...I don't get to go back to sleep....I have to be up for the day. 

The amount of paperwork and checks they have to do is astounding, all just to dish out a few pills.  A few man-made chemicals "derived" from plants.  I put that in quotations because lets be honest here, few plants were harmed in the making of those pills, especially with today's chemical technology.

But I digress, I was tired of the withdrawal symptoms, the constant checking what time it is, waking up in the middle of the night in excruciating pain and having no choice but to pop a pill in your mouth and swallow and wait for things to feel better in about 20 minutes.

"Screw this!" I said to myself after the umpteenth time my meds were talked about being changed and the pharmacy talked about the pills becoming less and less available because of the DEA.  I had had enough!  

The drug screens to check what all you're taking to make sure nothing interferes and you're following the program properly.  No extracurricular drug activity for me!  LOL

I always loved the green but anyway...moving on.

I sat down and had a long talk with my husband.  I asked him what his thoughts were and if he was capable of being there for me if that 80% chance of losing the use of my right leg was still a possibility.  I also asked him if he would be able to handle me not being able to pick up our two young daughters for at least 6 months.  Our girls are ages 1 and 2 years old.  I wanted to make sure he would be capable of taking care of our girls needs since I would be basically bedridden for about 2 months. 

He said yes and I was elated.  I had my support and my backbone behind me.  So I went to my doctor and asked him what the hell could be done about my back pain and if surgery was still a possibility.

He also said yes and sent me for an MRI.  That's when my life changed forever.

You see, up until about this time last year, I had no idea that a cyst pressing on my nerve root had been the cause of most, if not all, of my pain.   And it could be removed.  The nerves could be decompressed and the pain could be mostly relieved if everything went right during surgery. 

I had always been told my pain was due to a twist in my spine from a car accident I was in many many years ago.  Turns out, they were wrong.  I still have a weird twist in my spine that causes some mild discomfort on the daily, the nerve pain was constant though, just terrible and constant.  And my right big toe was constantly numb (I can now feel it fully).

So not only was it not from a twist in my spine but from an actual cyst, I also found out that I have what is known as a pars defect.  You can find out more info on that here:

I was scared.  And I needed to sit down.

I started having nightmares about surgery going all wrong because my PTSD gets really bad when my anxiety gets out of control and OMG I WAS GOING IN FOR SURGERY!


What the F@&K was I going to do if something went wrong?!

It's not just ME I have to worry about now!  It's me and my husband and my TWO daughters.

I about fainted.  I ain't gonna lie.  When it finally hit me that I was going to have someone cut me open and go digging around inside and near my spinal column to remove a long time cyst that had found it's way around my nerve root and into the facet joint....I was so dizzy I'm glad I was sitting already. 

They called me in for an appointment to meet the man that would change my life forever, Dr. Max Lee, a top notch neurosurgeon in my area, that my insurance covers.  Wow, I know, how lucky am I!?  RIGHT?!

He is amazing.  He's a bit shy, a bit geeky but what great doctors aren't a little odd?  Am I right?

He even noticed that I had a severe amount of back pain just from getting up and down off the examination table.  I wasn't even going in because of the back pain, I was going in to have him remove the cyst and get rid of the nerve pain.  The back pain I figured I'd always have to live with.

Boy was I wrong.  That cyst caused an awful lot of chronic pain that I no longer have. It changed my life drastically.   You see up until the removal of the cyst I couldn't even apply light pressure to the middle right lower part of my back without causing intense pain.  I mean INTENSE pain. 

But that all went away, I can even handle having my husband rub my low back again and massage out the knots  I could never have him do that before, it just hurt too much. 

The burning sensations and constant throbbing pain that was going down my right leg...gone.

Numbness in my big toe....gone.

Don't get me wrong, I have some residual burning every now and again down my right leg but it doesn't stay.  It isn't constant.   And it's nowhere near as bad as it used to be...nowhere near.

Recovery after surgery was beyond painful.  My back was so bloated and swollen and bruised it was disgusting to even think about, let alone look at in the mirror.  My incision, less than 2 inches long was glued together at the surface but had dissolving stitches deeper down. 

It was a long slow and painful few months, my nerves in my back were all out of whack because my surgeon moved them around to decompress them.They were painful and swollen, I could them, swollen and throbbing in the base of my spine and nothing would take that nerve pain away. 

I could literally feel my nerves settling back into place and had a nagging but yet somehow snapping feeling in my right sciatic nerve every time I stood up or sat down or moved was bad. 

Now I have had a couple of setbacks....I managed, somehow, to pull both of the long muscles in my low back that attach to my pelvis and hold me upright.  LOL

Even my own doctor didn't know how to explain how I did it but I did it and oh boy.  I pulled both of them but the one on the left is way more painful than the one on the right.

Then during one of my many visits with my physician, he asked me when the last time I had facet steroid injections.  It had been a while, over 9 months prior.  Then he nodded at me and said that he figured out how I pulled both of those muscles.....they've been weakened from the many steroid injections I have had in the past to try and get rid of the pain.  So they're more easily damaged, since they're weaker than they should be.  In laments terms, my back muscles are too weak to hold me upright and now I have to go through physical therapy. 

I hate physical therapy.  They always bitch at me about my posture.  The posture I adopted after having to hunch over for about 10 years to relieve pain in my low back is not good for keeping my muscles strong and flexible.  So there's that.

And then there's another problem.  I have a new pain, the pain in my left low back is from a pulled muscle, it's something I've never done before so I don't know how to cope with it.  I don't know how to ignore it and keep going. I have to relearn how to do that with this new pain.   It's very unlike my constant daily nagging pain in my right low back that surgery got rid of for me. 

It's new, it's different, it's something I've never dealt with so I don't cope with it very well and end up sounding whiny about my back hurting all day long.  (Insert sad face) LOL

I don't want to nor mean to sound whiny all day long when I complain about how my back is feeling terrible all day every day lately because I can't seem to just rest and relax it like my doctor told me I should be doing to it so it can heal better and faster.

Then I threw yet another monkey wrench into my cogs....I decided to come off all of my narcotics. 

Yes, you read that right.  I am no longer taking ANY narcotics.  I came off my last one, Oxycodone, this month.  The twitching and involuntary muscles spasms from the withdrawal were...well, they were terrible.  And they're hard to describe...

It's as though your own body isn't your own anymore.  It's like your muscles and nerves have a mind of their own, you can't control them.  If your arm wants to spasm outward and then curl back up into a tight ball against your chest, there is only so much you can do to stop that from happening before it's going to happen.

And it gets violent, my husband has been slapped and elbowed and kicked and kneed all in the name of me coming off my narcotics which he is forever grateful for because he hated me taking them, too.  The damage done to my liver and the rest of my organs is unknown but it can't be good.

So I'm pain med free but not pain free.  But it's a start.  I figure if I can survive this without pain medication then maybe, just maybe, I'll have a better chance at living a long healthy life.  

So I consider my surgery a success and honestly, I'm still a little scared.  The pars defect I have means one day in the future, my surgeon said in the next 5-6 years, I will need surgery again for a spinal fusion to correct my pars defect. 

I'm not just surviving and scared anymore.  I'm a scarred success but a success nevertheless.  And even though I have more surgery in my future, I'm feeling good about it. 

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