Surgical Consult #1

Ok, so this morning I had my first surgical consult.  I brought my husband along for moral support, and I am so happy he was there.  He had some great questions, and he even made the surgeon laugh several times.  If you need someone sweet, kind, supportive and funny to go with you to the doctor, let me know--I will rent him out for a small fee.

Anyways, the orthopedic surgeon did recommend spinal fusion.  He recommended a TLIF (which I have to learn all about).  He was noncommittal about the time frame of the surgery until he realized I had sensory loss and motor weakness.  Given those facts, he advised me that I should probably have the surgery in the next couple of weeks.  Yowza!  That was shocking--I figured he would have me do physical therapy for 6 weeks and then schedule a surgery.

We watched a short video about fusion surgery and then he gave us some time to ask questions.  We asked everything from 'what is the recovery like?' to 'will I be able to resume normal activities post surgery?'  I think I may have asked him something about 'if I wanted to, could I become a power lifter after I am recovered?'--even though I do not nor have I ever had the desire to become a power lifter.  Hey, it's the first thing that popped into my head.  Geez.

We did ask for a referral to a neurosurgeon.  I was worried about asking, so my dear husband did it for me.  I think we did it in a way that was respectful, and, to his credit, he was receptive to a second opinion.  All in all, my impression of him was much better this time, maybe it was because we were 2 to his 1, maybe he is a power lifter enthusiast--we can't know these things.  He gave us a good amount of time, was not unrealistic in his prediction of my outcome, and was pretty friendly.

I will go to see the neurosurgeon he recommended on Thursday.  I am hopeful that that visit will go as smoothly, though I'll be flying solo on this one.  Maybe I can rent someone else's funny and supportive husband as my wingman...

Karma Knocked, I Answered

Remember the post I wrote yesterday regarding dealing with pain?  Remember how smug I sounded as I described how wise I was with managing my pain?  Yeah, well, karma is a b*tch and she bit me in the a$$ when I woke up in in horrific pain at 4:15 am this morning.

My post came rushing back to me as a paced the floor and wept like a baby for over an hour.  I was having major muscle spasms combined with constant pain.  There was absolutely no comfortable position.  I tried lying, standing, sitting.  I would have twisted myself into a pretzel if it would have lessened the pain.  Hell, I would have stood on my head in a pretzel position if that would have done the trick.  I thought about waking my sleeping husband so he could commiserate, but I let him sleep.  It was only after he woke up that I dissolved into tears and threw a hissy fit.

Two hours, tylenol, a Robaxin, and a hot bath later, my pain was down to a level 7 from a level 8.5.  At least I was able to get ready and go to work.  As the day has progressed, my pain has eased to a more tolerable level 4 or 5.  While this is not my pain level of choice, I am in far better shape than I was this morning.

Yesterday's post was the first and the last post I will write about how awesome I am at dealing with pain, because clearly I am not am not as good at it as I thought.

Dealing with Pain

If you suffer from chronic pain, you inherently become and expert at managing pain. Though daily pain is, well, a pain to deal with, I have found a few things that help me cope. Everyone is different, and what works for me may only make things worse for you—but you never know.

**Please note: I am not a medical professional—so whatever advice I have to give is solely from a personal perspective and should not be followed if contraindicated by your physician. These tips help me manage my musculoskeletal pain due to spondylolisthesis—and may not help if your pain is from another source.

1) Hot baths – Though baths may not take your pain away, they do help to relax you and your muscles. I find that if my pain gets to an intolerable point, sitting in a hot bath is sort of like pressing a ‘reset’ button and makes the pain easier to deal with.

2) Distraction – Be it going to see a movie, talking to a friend, or listening to some great music, doing something to take my mind off the pain helps a great deal. 

3) Aleve – Though it doesn’t help 100% of the time—it does take the edge off sometimes.

4) Talking about pain – On a really bad pain day, bending my husband’s ear and having a good old fashioned pity party helps me. It is a way to release my frustration and communicate what I am going through. It is my opinion that chronic pain has two equal facets—the physical and the mental. This tip doesn’t do a whole bunch for the physical, but it does help alleviate the mental.

5) Prayer – Giving my pain to God always works. He is the ultimate healer and talking to Him diminishes the scary aspect of pain. Trust that He will never give you more than you can handle.

Let’s talk for a minute about pain drugs. While I have taken pain medicine on occasion for short periods of time, I steer clear of any long-term use. I fear that taking something on a daily basis will only make my pain worse in the long run. I guess I feel conditioned to pain right now, and if I was taking pills every day, my pain conditioning would decrease. Don’t get me wrong, I have been tempted on more than one occasion to throw in the towel and tell my doctors I can’t handle this anymore, but I am trying hard not to take that route. I feel that once you go down that road, it’s hard to get off that path.  Now--that being said--my daily pain is manageable.  It's not fun, but I can still get up and go to work most days.  Lots of people, who are in far worse shape, need drugs to function.  In their case, drugs are one of their only options.  Thankfully, I'm not there yet.

I don’t claim to be an expert or hero when it comes to dealing with pain—I have a lot of really bad days. On those days, I scoff at the things on the list above and just want the pain to go away. Pain makes me angry, bitter, irritable, depressed, and scared. But, this pain is my cross to bear. It’s not fair, but these are the cards I have been dealt. It could be so much worse, and it is for so many people.

The Waiting Game

Let's face it - waiting sucks.  Waiting while in pain sucks even worse.  I have not heard from my doctor's office yet about what the next step is, and it's getting to me.  Though I have my preliminary results from my father in law, I just want to know what the plan is.  Knowing the next step will not heal me or take the pain away--but it will put my mind at ease.

In general, I have found that the longer I wait, the less control I feel I have.  Waiting also gives me more time to build up fear.  I am caught in a limbo of wanting to be a surgical candidate and not wanting to have surgery.  My main goal, however, remains steadfast: do what needs to be done and move on with life.  I've got a whole lot of living to do, and I'm ready to start doing it.

Another reason I am in a hurry is ye old biological clock.  It is ticking, my friends, day in and day out.  I am ready to start a family, but my desire is tempered by my fear of unbearable pain.  I just want to get fixed, get better and get pregnant.  Is that too much to ask? 

So as the hours and days slide by, my mind is flooded with anxiety.  When will this waiting come to an end?  Who knows.  I guess the best thing to do at this point is to pray, give my problems over to God, and let Him take the reigns. (it's realizations like this one that make this blog so therapeutic!)

And the Verdict Is...

I received a call from my father in law this morning.  He had taken a look at the CT Myelogram films and had some good news for me...all of my issues are concentrated in the L5-S1 area.  Yippee!  No multi-level problems!

He did say, however, that he was able to visualize why I am in pain.  My spinal nerves are being compressed due to:

1) Spondylolisthesis - Grade I - with about a 20-25% slip
2) Foraminal Stenosis
3) A Bulging Disc at L5-S1
4) Some Disc Degeneration

I was happy to hear that I am not a hopeless case!  He seems to think that a surgical repair is likely, but will let a neurosurgeon make that call.  After speaking with him, I felt much better.  I hate the idea of having surgery, but I am head over heels in love with the idea that I could one day live a normal life without pain dictating my every move.

Well, I guess the next step is getting the call from my physiatrist (he ordered the test) and then mostly likely a referral to a surgeon. Until then, I plan on dreaming of my less painful future...

No Big Whoop

Today I had the CT Myelogram done.  I hate to jinx myself (and get a horrible spinal headache 5 minutes after posting), but it was no big deal.  So far, so good.  I have been taking it easy all day, as instructed, and besides some minor nausea and headache earlier--I'm in good shape.  My leg pain has been moderately bad, but that's normal.

Our day started out early, as we had to be at the hospital by 7.  We made it by the hairs on our chinny chin chins.  We waited for a couple of hours and I was called back.  After I donned a beautiful hospital gown, the doctor came in and explained the procedure to me.  Luckily, my father in law is a radiologist, so I had been briefed on what was about to go down.  My father in law told me that the most important thing was to stay calm and relax.

I had to lie face down on an xray type table and they cleaned my back with betadine.  The radiologist numbed me up, and started the spinal tap part.  It was slightly uncomfortable, but not nearly as painful as I expected.  Once he pushed the dye in, I had a moment where I started to feel really weird.  I told the radiologist and he instructed me to roll over on my back and put my knees to my chest.  That fixed it instantly!  He said I had a small vagal response, and it was super duper common.

The being calm and relaxed really did the trick.  I kept imagining being at home and cuddling with my sweet cat.  Having that happy imagery really, really helped.  After the injection portion, they just rotated the table I was on to snap some pictures at different angles.  No biggie.

It was then time for the CT portion of the test.  I walked down to the CT scan area, and waited for a bit.  I had a panic moment when I saw the emesis basins in the waiting area.  My brain clicked on and I was immediately nauseated.  This, of course, had nothing to do with the dye they injected, but had everything to do with seeing those basins.  I re-remined myself to cool out...everything is fine.

The CT part was a brizzidy breeze.  No need to even write about it.  You basically lay down on your tums and wait for the scan to end.  After that, I got dressed and was on my way home.  My husband was amazing--he has not let me do anything today.  I was instructed to take it easy, drink lots of fluids, take in some caffeine and rest.  Check.  I love all of the activities on that list!

We got a copy of the films for my father in law to look at.  Of course, I looked at them on our home computer, but, alas I am way out of my depth.  I did see the lateral view xray and was able to recognize where the spondylolisthesis was present (l5/s1) and there was not a lot of disk space there, but other than that, I was lost.  I don't know my grade, but I am gonna guess it's a grade I-II.

Next phase will be getting the results and most likely a referral to a surgeon.  This may be tricky, as I have a strong dislike for the orthopedic surgeon that sent me to the physiatrist (you know who you are).  I think I will ask for a referral to a neurosurgeon.  My husband and I are trying to get some names of the best guys here in Birmingham.  Side note:  I'm not asking that my potential surgeon has girl talk with me while we braid each other's hair, but I do expect a modicum of patience and respect.  Just a smidge of patient education, and a dab of empathy.  A little goes a long way.  Yes, I acknowledge the fact that their surgical prowess is much higher on the priority list than personality, but I will not tolerate blatant bad behavior-good surgeon or not.  I now disembark my soap box. 

Well, barring any late complications, I can say with all honesty that CT Myelograms are not that bad.  On a scale of 1-10, I would say they are level 2 scary/painful.  I've had worse experiences getting my 6-month teeth cleaning.

I'll be back with results and all that jazz.

Well, Hey There

Hi!  It's me, Amanda. Above is a picture of me, except my hair is far less stringy in real life.  Other than that, it's a pretty accurate likeness.

Here's the deal-e-o:  I am writing this blog to journal my experience as I seek a solution to eliminate my chronic back pain due to spondylolisthesis in my lumbar spine.  I have been obsessed with searching the internet about this condition, but it's tough to find a personal account of someones experience other than those DEPRESSING message boards.  I decided to start this blog to share my experience with others, as well as giving myself a therapeutic outlet.

I don't know how you feel, but I often feel alone in my pain.  I have a loving husband, great friends and patient co-workers, but at the end of the day, I'm the one in this body.  Sometimes I feel lonely in my pain.  Usually talking about my pain makes me feel better, but honestly, who wants to hear about it all of the time?  Even my husband, who has the patience of Job, probably wants me to shut up about it sometimes!  So when I am feeling lonely and in the need of a good spill, I'll try to do it here. 

Here's a little history:

I was diagnosed at age 8 with pretty severe scoliosis.  I have an s-shaped curve, with the most severe being in my thoracic spine.  At it's worst, I had a 54 degree curve.  After bracing for 5 years, I had Harrington rods placed at age 13. 

Fast forward to my teens & 20's and life was my oyster.  I recovered beautifully from scoliosis and didn't even think about my back all that much for years.  It wasn't until I was in my late 20's that chronic back pain started to plague me.  For years, pain was a pest, but it didn't really disrupt my life all that much.

Fast forward again, and now I am 35 years old.  Over the last 2 years, my pain has gotten much, much worse.  The last few months have been really difficult, with my pain really infringing on my quality of life.  I have been diagnosed with Spondylolysis and Spondylolithesis with some degeneration of one of my disks.

Currently, I can't stand for over 3 minutes without feeling "locked up" in low back pain.  We've tried a few spinal blocks, but they did not take.  My first bock worked for about 10 days.  It was a sublime experience!  I was so hopeful about the second block, but it did not work at all.

Three weeks ago, the pain started to go down my left leg and into my foot.  When I went to see the physiatrist last week, he noticed some weakness in my left leg.  Bummer.  If I do any activity, like cleaning the kitchen or a bathroom, I can hardly walk afterwards.  It takes me getting off my feet for a while before I can get up and get going again.  Needless to say--it sucks.  Big time.

Because of the foot pain and weakness, my physiatrist is sending me for a CT Myelogram on tomorrow.  He chose to do a CT Myelogram because I have had back surgery in the past.  Just in case you don't know, doing a myelogram involves a spinal tap (geez!).  I have never had one before, so needless to say, I'm a bit nervous.  I plan on sharing my experience, so if you've got one in your future, my account may help prepare you.

Well, I guess that's all for now.  Please know if you or a loved one is suffering from chronic pain, you're not alone.  I'll be back post myelogram to give you all of the deets.