Downward Spiral

 

Though I was seriously devastated that the surgery was postponed, I was really trying to be positive in my last post.  I am generally a pretty positive person, and I don't often allow myself prolonged pity parties.  Though it's good to be positive, I don't want to downplay just how much pain I am in or how heartbroken I am that I am not on the other side of this surgery.  After all, if this blog is going to be useful to anyone going through the same stuff, it has to be honest.

The pain keeps progressing in a steady downward spiral.  I feel like I am on a steep hill and each day I slide a little further down.  My pain baseline is worse week by week. 

Here's what is going on with me:

• I can't do what I was able to do a month ago, and I'm really tired all of the time. 
• I often wake up in a tremendous amount of pain; most mornings it eases, but some days I can't even go to work. 
• I have missed numerous social outings due to pain.
• My leg and foot pain are back, (boo!) an my left leg is feeling really weak these days.

I read on someones spinal fusion blog that they knew they were healed when accidentally one foot stepped in a pothole and didn't wince in pain.  When that day comes, it might just be the best day in my life.  So, if you see a gal wearing a t-shirt that says, 'I just stepped in a pothole, it was painless, and all I got was this lousy t-shirt,' you'll know it's me. 

Say What?

Today was supposed to be the day of my surgery…but it got delayed for THREE WEEKS. I can’t tell you how upset and disappointed this makes me. If it had not been delayed, today would have been the first day of my new life, the first day on my road to recovery, the first day on the other side.

If I had had the surgery this morning, would I be in tremendous pain right now? Of course I would, but the surgery would be BEHIND me. Instead, I am staring down the pike at 21 long days until surgery.

Now that I’ve got all of that whining behind me…I’ll focus on the positive aspects of delayed surgery.

Because the surgery was delayed I have time to:

decorate my house for Halloween

shed a few pounds

enjoy this amazing fall weather

and do some baking for those around me

Not too shabby.

Bracing for Impact

Well, I was fitted for my back brace yesterday. All I can say about that experience is-yuck I have to wear a back brace. There is nothing sexy or exciting about that…

There is a silver lining, however. I was told I will not have to wear it lying down, sleeping, or reclining. I will only have to don this belted black beauty when standing, moving about, or sitting up. Hallelujah!! I had been imaging many sleepless nights, gloved in ridged plastic—but, alas this will not be!

Since I will be wearing this brace for 90 days post op, I think it is only appropriate that I name her (after all, we will be pretty close) . Therefore, I dub thee Snuggles.

Snuggles will be coming with me to the hospital and we will unite in the effort of healing, happiness, and harmony together. Let’s do this, Snuggles!

Well, I'm less than 2 weeks pre-op and my to-do list is increasing by the minute.  There is a lot of preparation that is required for this surgery, especially since I will be down for a little while.  The following is the preparation I've done so far:

Cleaning-  Since I will have house guests and visitors after the surgery and I won't be able to clean for several weeks after the surgery, I am compulsively cleaning and organizing.  Cleaning the fridge is a good idea, since people may bring you food (and who wants to see that tomato sauce you spilled back in August, right?).  If you have family that will be coming to stay and help you, making room in a closet and drawers is also a good idea.

Shopping- This is a pretty annoying to-do since it is not fun shopping, rather it is more utility shopping.  If you are going to be in a back brace, make sure you have soft tank tops to wear underneath.  Also comfy pajamas, warm socks, stretchy bottoms, loose tops, and a robe are good items to have.  I assembled all of these items in a basket and placed it at waist level so I won't have to bend.  One more thing, shoes that you can slip on that have backs are necessary for the hospital.

Setting Up Your Recovery Area- We have a fairly large master bedroom, so we have decided to make this my recovery suite.  I have plenty of waist high surfaces to set things on, a bathroom with a shower in close proximity, a tv for entertainment, and a computer stand on wheels (kind of like a hospital table).  We went to our local Good Will and bought a recliner for either me or the Mr. to sleep in.  I read several blogs that said lying in a recliner post surgery was easier than lying in bed, so I cleaned that bad boy up and it's ready to go.

Making Things Accessible- Since bending is a no-no, I plan on putting everyday items like toiletries, clothes, snacks, remotes, books, etc. at waist level.  I watched a very informative vlog where a lady suggested putting everything in baskets.

Grooming- I know I will not feel like sitting at the salon getting my hair highlighted and cut for a while, so I took care of that.  I also plan on getting a pre-surgery pedicure since I won't be able to do my own toesies.  If I could afford to get my legs waxed, I would!  It would at least give me a few weeks of smooth legs!

Well, I guess that about wraps it up for now.... I have no time to blog, I have to get moving!

I've Got A Date

I have a surgery date!  Now all I have to do is get scheduled for some pre-op testing, get a brace fitting, and show up on the morning of October 3rd.

While I am glad most of the waiting is over, now the nerves are starting to set in.  I have to remember to keep my mind focuses on my faith and trust in God.  Trust is a hard thing to do when you are scared, but it's really my only option.

To help me with my trust process, I am going to:

• STOP reading about this surgery on the internet (oh, the horror!)
• Start thinking less about the surgery and more about life beyond the surgery
• Start praying when the worry kicks in

During a church service years ago, every member in the congregation was given a bible verse that was selected for them individually.  My pastor gave me Philippians 4:13: "I can do all things through Christ, who strengthens me."  This was not the first time this bible verse had come to me, in fact it's made it's way to me several times over the years.  Since it has been so meaningful to me in the past, I am adopting it as my personal strength statement.  I am weak, be He is strong!

Surgical Consult #2

Yesterday was my second neurosurgical consult--this time with Dr. H.  I knew from the time that I walked in the office that this was the place for me.  Ages ago, I worked in the medical field--and you can tell a lot about the quality of care you will receive by the doctor's office.  Why do I say this?  Well, it's because 90% of the care you receive is not from the doctor--it's from his staff.  Well run office, well cared for patient--at least in my opinion that's how it goes.  I digress...

Anyway, my husband and I met with Dr. H--who was business like with a dash of humor.  I liked him immediately.  He asked a few questions and then asked if we'd like to see the CT Myelogram results.  I'm sorry...did you say you wanted to show me results?  This is what sealed the deal....Dr. H is the man for me!

He recommended a posterior approach--so no incisions in my belly.  He advised me that I would be wearing a brace for 3 months, and said he's like me to stay out of work until the brace is off.  He said if I can't stay out for that long (which I can't)--we'd talk about going back to work 6 weeks post-op.   I felt good about his conservative approach. 

The next step is scheduling the surgery date, getting pre-op testing, a brace fitting, and I'm ready.  I felt so relieved walking out of his office--I have my surgeon, I have my plan, I will have my life back  someday soon.

Confusion

When navigating the medical system, have you ever felt like a lab rat?  Well, this lady has.  It seems like every time I gain any tiny bit of momentum, I run into a wall. 

So here's the story:  My orthopedic doctor referred me to a neurosurgeon per our request.  I show up at the neurosurgeon's office for a surgical consult.  He very casually says I need a spinal fusion, but he doesn't really explain the procedure.  In fact, he is very aloof when I start asking questions.  This puzzled me--I guess I expected him to be a little more engaged.  So I stopped asking questions.  After the appointment, I kicked myself for not being more forceful about asking questions.  By the next morning, I had convinced myself that maybe I mis-read him (maybe he's just a type B personality and he had a heavy lunch after a terrible night's sleep?) and I should not have stopped with my list of questions.  Don't get me wrong--he was very nice, just a little too indifferent for my comfort level.

So, the next day, I call his office to talk about scheduling a surgery--albeit after I got  some answers to some of the questions I had left out the day before.  The nurse that I spoke to was confused; she said they had already sent my records back to the orthopedic doctor's office since I was just there for a second opinion.  Huh?  Nobody told me.

She said that this doctor would not take me as a patient in fear of offending the referring orthopedic...at least he wouldn't take me on the up and up.  She said I would have to go get my records, sneak them back to their office, and then hope that the doctor would then take me on.  I told her that this system was confusing--maybe I should just find another doctor.  She kept assuring me, very nicely, that the doctor that I used was 'my choice.'  I assure you, it is anything but.

So, I decided to cut bait and move on to another neurosurgery group.  This way, medical politics would not be a factor.  It just seems cleaner this way. 

In the meantime, I have good news:  the pain in my leg and foot has diminished!  My back is still status quo--and by that I mean status-it-hurts-a-lot--but I'll take any improvement that comes my way!

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.