February 25, 2014

ACDF, Idiopathic Hypersomnia, and Pigment Dispersion Syndrome Oh my!

About me part two~

X-ray showing bone growth after ACDF.

This is the second half of my "About Me" post.  This half was much harder for me to write for some reason. I've had constant distractions from the kiddos and every day life as well.  I feel like this is sort of rushed through even with it taking so long.  I hope it doesn't read that way.  Thank you for reading!

I left off describing my experience with my new pain doctor.  It was nerve racking meeting him for the first time.  I was always so nervous talking about pain meds.  I never really thought much about them before. Now I was meeting with a second pain specialist and desperate for help. (seriously)

I had to try a lot of different pain medications and finally found a combination that works well for me. I wish the meds would take the pain away completely, but they don't.  They basically make it less intense and a little easier to deal with.  I'm really very lucky to have found a doctor that cares more about quality than quantity when it comes to his patients.  My advice is to find a specialist like this if you can.  This doctor will be the one to see you every month and prescribe your meds.  This doctor will order an MRI or any other tests when new symptoms pop up.  He/She can also refer you to another specialist when necessary.   You will spend a lot of time and money seeing this doctor and it needs to be someone that is legitimate and that you like personally if possible.

My doctor suggested and I subsequently tried epidural steroid injections and trigger point injections to help control my pain.  Nothing really helped.  It was time to make an appointment with a Neurosurgeon.  I used websites like Healthgrades to find this doctor on my own just as I had with my pain specialist.  I got lucky again!  I highly recommend doing some research before going to any specialist.  Even one that your primary doctor wants to send you to could have poor reviews from patients.  In fact the first pain specialist that I was referred to had poor reviews.  I chose to go and make my own opinions.  I quickly found that every complaint I had read about was true.

Talk about nervous...I never thought I would need a pain specialist and now I was seeing a Neurosurgeon!  The appointment was pretty quick and to the point.  The doctor looked at my MRI photos that I had brought along with me.  He showed me the two herniated discs in my neck and told me that I needed surgery.  The discs were touching my spinal cord and causing some of my symptoms like arm pain, tingling sensations and some numbness in my hand.  Sometimes I had trouble stumbling around.  Just weird stuff that mixed up nerves can cause. Oh and a lot of pain!

I already knew that he was going to tell me this.  I had read so much on the internet about herniated discs that I almost felt like an expert.  I knew how it was done and about the recovery process, AND I knew that it was very unlikely that it would cure my neck pain.  These surgeries typically don't.  They are done to prevent permanent damage to the spinal cord and to stop the progression of symptoms.

I waited six months before having the surgery.  I wanted to wait until my son was out of school for the summer.  At one point my pain specialist told me that he thought I had made the wrong decision by waiting so long and I cried.  It wasn't like I could just up and go have a major surgery.  I was a mom and I needed my parents help taking care of the kids and taking care of me!  My hubby had to work and couldn't be home with me.

Time passed very slowly.  We bought a house and moved the month before my surgery.  I had a ton of stress going on.  Buying a house is stressful, moving is stressful, and my pain was definitely stressful!  I got shingles and started an anti-viral med the day we closed on our home.  I couldn't believe it. I'm not that old! How did I get shingles?  I always thought that really old people got shingles.  Having chicken pox as a child and then having enough stress to lower my immune system is all it took.  I also found out that once again my potassium level was very low at 2.8.  (another story)  How did I even manage to get out of bed?  It wasn't easy and it hurt so much. Sometimes I cried when I was alone.  I tried to hide just how depressed I was feeling.

Finally the big day came on June 25, 2012 and I was filled with all kinds of different emotions.  I just wanted it over with.   It was a little surreal going into the hospital that morning.  I tried not to think too much about what was going to happen.  I definitely didn't want to think about all of the "what ifs".  I was so relieved when I woke up in recovery.  I made it and it was over!

The surgery went fine and I was moved into a room.  They only keep you one night here which I think is ridiculous.  They say that people do better recovering at home.  I could have used another night personally. We put a recliner into the bedroom and that is where I slept for about a week I think.  Some of my memories are fuzzy.  I have a terrible memory anyway.  My mom slept in the bedroom with me.  I was given a heavy dose of steroids to help the swelling in my throat and was not feeling well.  Let's just say that my recovery was hampered by my grumpy attitude.  My loved ones should have known why I behaving like I was and left me alone, but they didn't. When I felt "normal" again  I was able to explain to them that the steroids, the pain, and just recovering from something like that had made me feel terrible and unsociable. Don't expect someone to be cheerful after an ACDF and please don't take any negativity personally.  My throat hurt, I couldn't get comfortable no matter what I did, and I felt a little sorry for myself among other things.  I should have just stayed in bed!

Wearing my Aspen collar.  I
still wear this when my
neck is hurting badly!
My scar after removing the bandage for the
first time.  It is barely noticeable now.

That was almost two years ago as of this writing.  I still have severe neck pain.  The surgery did what it was supposed to do.  I don't have any compression in my spinal cord (according to my Neurosurgeon) and none of the other fun stuff that goes with it.  I've had another MRI almost a year to the day that shows some stenosis, but better than prior to surgery. A few months ago I had radio frequency nerve ablations done to both sides of my neck to help ease the pain.  I will definitely be sharing that experience in another post!  It helped a little I guess.  My pain doc says that the next step is to do more epidural steroid injections.  *Sigh

I've been having new symptoms in the thoracic area of my spine since last fall.  I now have almost constant tingling and some really sharp pain at times.  I'm worried, but I know I won't be having surgery for this. They don't do any surgery in that area of the spine unless it is absolutely without a doubt necessary.  I read that it is pretty dangerous.  I've also had a numb pinky finger for about a month now. My pain doctor wants me to have an MRI done to find out if something is going on.  It will have to wait until we can afford to pay for it.

My most recent official diagnosis is Idiopathic Hypersomnia. That explains why my life has always revolved around naps! I also found out this past summer that I have Pigment Dispersion Syndrome and high ocular pressure as a result.  I hate using the expensive eye drops!  Why is it so hard for me to put a drop in my eyes?  Just being stubborn and ridiculous I think.  My journal section will be where I post upcoming "news" about my health and go into detail about some of these medical conditions I've mentioned.  Hopefully it will be a place for good news!

I'm ending this "About Me" post here.  I never intended for this to be this long.  If you have managed to read both of these posts all the way through you get a virtual cookie from me and a huge "Thanks!"  P.S. I thought of something last night that I needed to add or correct or do to this post.  I have no idea now what it was. I will make an update to this post if I remember!


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