I've Got a Date!

Knowing I needed to head to Seattle for my care I began my search again of the SRS site and comparing who was covered by my insurance and their qualifications and focus.  I had three doctor's names stand out to me and they all worked together in neurosurgery at the Group Health Capitol Hill Clinic.  I called the clinic and they let me know it was Dr. Rajiv Sethi who they referred all their scoliosis patients to.  Perfect!  He was one of the doctors I was looking at.  Needing to know this was the right choice we reached out to our family members and asked for their combined faith and prayers as we held a family fast.  Thank you to our wonderful families for their eagerness to participate in that and their uplifting words for me. We love you!

On April 1st I returned to my primary care doctor for a new referral.  This time to Dr. Sethi in Seattle.   When I spoke to my doctor about the referral he suggested another surgeon he hadrecently heard speak at a conference.  I was hesitant as I felt a calm reassurance that Dr. Sethi was the correct direction to go. I told him I'd go home and give him a call back later.  When I got home I did more research, this time I compared the two doctors qualifications and patient reviews.  It just confirmed once again that I was making the correct choice.  Dr. Sethi is very qualified and had a ton of very positive reviews.  It is just as important to me for the doctor to have the skills as to have excellent interaction with his patients.  If people are upset they'll put their opinion out there.  If people are pleased, I don't think their first thought is to write a positive review but, that's just how I feel.  The other surgeon my doctor suggested did not have good reviews.  There were many unhappy patients voicing their opinion online.  So, I called my doctor back and let him know I'd like to stick with Dr. Sethi.

The referral was approved quickly but I had to wait 2 months to get an appointment with Dr. Sethi.  He was fully booked out with surgeries and out of town for presenting at complex spine surgery symposiums.

Dr. Rajiv Sethi

Finally, June 3rd arrived and we headed to Seattle!  The office staff was amazing.  So friendly and helpful.   The moment Dr. Sethi walked in the room and introduced himself I just felt once again that this was right.  The whole visit was completely opposite of the other surgeon; One, I actually met with the surgeon directly.  Two, he told me I was a prime candidate for surgery.  (I'm young and healthy, my scoliosis is severe and progressing.)  I went in there ready to fight for my surgery.  I had my list of reasons:  progression, pain interfering with my sleep and everything I'd like to do, etc.  No fight necessary.  :)  I don't think we were mentally prepared for him to ask, "When do you want to have the surgery?"  I responded, "When are you available?"  So the big day is August 4th!!!

Jumping Through Hoops

I really wanted to stay local for my spinal fusion so I got a referral to a doctor here in town.  My husband really wanted me to go to a bigger city (Seattle) but I was willing to give my local doctors here in Eastern Washington a chance.  We have a beautiful neuroscience center here.  They have a great team approach.  The thought of recovering close to home was very appealing.  I found a neurosurgeon who was both covered by my insurance and a member of he Scoliosis Research Society (SRS). I had new x-rays taken and got an appointment at the neuroscience center.

In October 2013, I had an appointment with the neurosurgeon's medical assistant.  I filled out a load of paperwork, we discussed my history with scoliosis and my problems I was currently dealing with.  I must have filled out at least 3 of these little charts where you mark where and what kind of pain you have.  I pretty much just covered the entire neck, back, shoulders, hips, and down my right arm and leg with x's and little dashes.

Before I could see the neurosurgeon I had to get an MRI.  My MRI lasted 1 hour and 45 minutes.  It was tough even while I lay there with my eyes closed, listening to classical music, praying to relax.  I am way too claustrophobic to be in there that long.  They even sent me to the "larger" one at the hospital.  I can't imagine what the small one would be like.  They had to do three scans total to include the cervical, thoracic and lumbar regions of my back.  It really shouldn't have taken that long but the tech said my spine was so twisted they had to do extra scans.  After the first two I had to press the panic button.  Being in pain all the time I really can't hold still for very long and feeling like I couldn't breathe didn't help.  I just had to sit up, breathe, stretch and move then I was good to lay down for the last scan.

Finally I had an appointment with the neurosurgeon.  He looked at my x-rays and MRI's and said he didn't want to do surgery yet.  According to him I am too young, healthy, don't have enough damage to my discs (just one joint with arthritis in my neck), and no pinched nerves.  This was all very crazy and backward to me.  Why would I want to wait until I was damaged?  Why wait until I am older and recovery is slower and more difficult?  Obviously my scoliosis is causing me pain, it is progressing, it qualifies as severe (in regards to the degree of curvature).  I really should be a prime candidate for surgery and being healthy is an added bonus!

Before considering surgery he wanted to look into all the non-surgical options.  First, I saw a pain management doctor.  He told me he couldn't help me.  He thought all my pain was coming from my arthritic joint in my neck.  He said I was too young to start burning nerves around the arthritis (which is how he would normally treat it).  Given all my allergy problems with pain meds, I was very hopeful that I would go in, get an injection, and be pain free for 6 months.  Sounds great doesn't it?!  Instead I felt like hope for freedom from pain was ripped from me.  I began to cry.  I could not control my emotions.  It was awful!  The doctor was extremely kind and sympathetic but could offer me no help.  Next, I was sent to physical therapy.  My insurance would not cover a PT who was experienced with scoliosis and my referring PT would not back me up to appeal the insurance's decision.  I went to a different PT who really didn't have much experience with scoliosis.  It was all a little frustrating for both of us.  Most things we tried either caused me so much pain afterward that I felt like throwing up or did absolutely nothing to help relieve pain.  My shoulder did loosen up a bit but my pain levels never decreased.  Finally after a couple months the PT asked me if I really wanted to keep coming back because it didn't seem to be doing much to help me.  Another hope lost.

About this time I received notice from my surgeon that he was moving to the Midwest.  So, no follow-up appointment for me.  I came to a couple conclusions: 1) I was ready to seek care in Seattle.  2) I felt confident that I had exhausted all my non-surgical options which made me more confident that surgery was the correct path to follow.

I wanted to stay close to home for my care.  I wanted to support my local medical community.  I had faith that they could help me.  I don't feel that faith was misguided, just a little premature.  Scoliosis is not super common and they just haven't had the same exposure and experience with it as larger places.

On to bigger and better things in Seattle...

My Drug Problems

In the fall of last year (2013) I began my long journey of getting help for my scoliosis pain.  I saw my primary care physician to get a referral to a neurosurgeon here in town.  In the meantime he gave me a prescription for some pain medicine.  This would be the first of many meds I would try.  

The first prescription was for Amitriptyline.  It was fabulous!  I couldn't remember the last time I hadn't felt pain.  I told someone how amazed I was at how much I could accomplish when I wasn't in pain.  I thought, "So this is what other people feel like!"  Never take for granted how blessed you are to live without pain.  Everything started out great.  I just had the normal side effect of dry mouth.  Over the next month I began to develop nearly every possible side effect.  Dizziness, lightheadedness, blurred vision, shaking, pounding heartbeat, trouble concentrating.  Not much fun but I felt it was worth not having the back pain.  Finally after about three months I developed the "serious but rare allergic reaction" of an itchy, swollen tongue.  As luck would have it I was speaking that Sunday at church.  I was pretty sure I wasn't going to make it from my seat to the pulpit without falling over.  Somehow I managed to but my next task was concentrating and not loosing my place in my talk.  With the combination of shaking from meds and slight nervousness I probably looked like I was terrified.  Which really I wasn't.  I found the whole situation rather comical (especially speaking with a swollen, itchy tongue). I also had hydrocodone for breakthrough pain but my body had no response to this at all.  No pain relief whatsoever (or any other reaction, thankfully).  Needless to say I stopped taking that medicine and called my doctor to find something else to try. 

Next came Gabapentin.  It only took one dose of this for me to have itching all over especially on my face.  I could sleep and was pretty certain I was going to go crazy from the extreme itchiness!

On to percocet.  Once again I experienced itching, as well as, stomach pain and excessive anger.  

After all this the doctor moved on to morphine.  I strongly dislike morphine! I was taking a 12 hour extended release twice daily.  It was great at first at relieving pain but of course I soon became tolerant.  At about 8 hours I could feel it wear off and at 10 hours I was in horrible pain again.  So the doctor had me start taking three a day, every 8 hours.  As is the nature of morphine, this soon became ineffective.  I was ready to be finished with morphine.  I didn't like how drowsy I was feeling; how difficult it had become to form thoughts and speak in complete sentences.  I specifically ask my doctor if I needed to wean off the morphine as I had been taking it for 3-4 months.  He said no I could just quit taking it.  About 3 hours after missing my normal dose of morphine I woke up with excessive sweating, especially on my back.  Then I began to vacillate between chills and sweating.  Over the next 12 days I experienced continued sweating and chills, muscle cramps, stomach cramps, nausea, vomiting, diarrhea, restless legs, anxiety, sneezing, runny nose, watery eyes, decreased appetite.  It was the worst the first 4 days.  Sleeping was impossible  (until I remembered on day 3 I had a Valium left over from something else).  I learned morphine stores in the fat and brain.  The body is trying to detox by sweating all the morphine out.   So I force myself to keep eating, drinking fluids and moving (even though I really just wanted to lay on the floor because I was quite certain I was going to die!)  Thankfully the withdrawal symptoms began to taper off after day four.  However, I went from no appetite to an out of control voracious appetite.  I craved anything and everything that was sugary, fatty, and salty.  Unfortunately after you go off morphine you also experience higher pain sensitivity and my doctor was at a loss as to what medicine to prescribe next.  Life was pretty rough.  Don't do drugs kids!

Now I take Tramadol, which just kind of takes the edge off.  I was able to get a prescription to purchase a TENS unit (trans-cutaneous electrical nerve stimulator).  This has saved me from horrendous pain many times.  At night I take baclofen which treats muscle spasms.  I also slap a lidocaine patch on my back.  With all this I can sleep without waking 6-8+ times a night.  Now I only wake 3-4 times.   

Now I'm just waiting out my days until my spinal fusion...

Scoliosis Awareness Month

I have had many questions about scoliosis; how I got it, it's effects and such.  Since June is Scoliosis Awareness Month I figured this would be a great time to share some basic information.

Signs of scoliosis include:
One shoulder higher than the other
One shoulder may protrude more
Rib cage appears higher than the other
Hip appears higher or more prominent than the other
Leg may appear shorter than the other
Body tilts to one side
Waist appears uneven

The most common screening is the Adams forward bend test.  This is what you'll see.  The rotation of the ribs causes this rib hump.

There are different forms of scoliosis.  I have the most common type of scoliosis, idiopathic.  This just means there is no known cause.  It is not caused by injury and cannot be prevented.  Idiopathic scoliosis is more likely to affect girls than boys.  About 2-3% of adolescents at the age of 16 have scoliosis.  Even after skeletal maturity scoliosis can continue to progress.

Scoliosis is defined as a lateral (sideways) curvature of the spine with an axial twist that causes a distortion of the ribs.  There are two types of curves. C curve or a single curve and S curve or two curves. Lucky me!  I get twice as much fun with my double curve.  Actually I am glad I have an S curve. The two curves compensate for each other and give me a more balanced back (in a wacky, out of balance way) than a C curve. Research shows that scoliosis compromises five of the body's systems.  Obviously the spine is affected along with the ribs and pelvis.  With the impact on the brain and central nervous system it can deplete the body's nutritional resources and damage major organs including the heart and lungs.  It can cause shortness of breath, digestive problems, chronic fatigue, acute or dull back pain, leg, hip and knee pain, acute headaches, mood swings, and menstrual disturbances.

Don't you feel so informed?!  I hope this helped answer some questions.  I check my children's backs regularly.  Even though idiopathic scoliosis has no known cause it does run in families.
For more information check out National Scoliosis Foundation

My "Back" Story

During my sophomore year of high school we had the routine back checks during P.E.  Thinking nothing of it I was surprised when I was called back a few days later for a second check.  I was then given a letter to take home to my parents which gave information on a free scoliosis screening in the next town over.  I don't remember much.  I think I had x-rays taken, bending measurements of my back with a scoliometer, and measuring my legs (one is shorter than the other because the curve in my spine pulls one hip higher than the other).  What I do recall is sitting there, for what seemed like forever, and feeling so frustrated that the doctors wouldn't just come out and say I have scoliosis and tell me what I needed to do.  They just sat there looking sullen and giving me looks of pity.  I was a teenager who was feeling impatient, awkward, and nervous.  Anyhow, this is one of my original x-rays when I was first diagnosed.

At this time my curves were 28 degrees thoracic and 24 degrees lumbar.

Finally, I was informed that I would need to see a doctor in the next biggest town.  From there they sent me on to the Seattle Children's Hospital where I was fitted for a back brace.  My Boston back brace looked almost just like this.
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It was worn under my clothes with a cotton liner between my skin and the brace and it buckled in the back.  I was instructed to wear it 23 hours a day.  I did not like it a bit but I was determined to do what I had to do.  I could go on about the negative impact it had on my self-image but I won't.  I choose to be more positive.  Bending was very limited. I felt a bit robotic. It was extremely HOT! As in temperature; definitely not sexy. At least I got to buy new clothes as the ones I had would not fit over the brace.

 Because of the significance of my curves and the fact that I was still growing I would need to wear a brace to try to stop the curves from getting worse.  Unfortunately my curves did get worse before I stopped growing. This is one of my later x-rays that shows where my curves were at when they stopped.  (34 degrees thoracic and 32 degrees lumbar)

 I wore my brace pretty faithfully for the prescribed 23 hours for all of my junior year.  After this time it appeared my curves had stopped getting worse.  My senior year I was told I could wear it just at night and I was monitored to make sure there was no progression.  I took it to college and wore it at nights my first year.  At this time I was told I was done growing, my scoliosis had stopped and I could go on with life and never worry about it again.  Yay!

Wait!  What?...

Flash forward into adulthood.  The pain which I had had in my neck during my youth had begun to move down my back into my shoulders.  My four pregnancies were the worst times for pain and stiff necks.  During these times I sought help from an orthopedic doctor and a chiropractor.  Nothing helped and they couldn't take x-rays because I was pregnant.  So I had no confirmation that my scoliosis had begun to worsen. When I wasn't pregnant, I was too busy with kids to bother going back to the doctor.  I could see the changes in my ribs, hips and shoulder.  I knew what I didn't want to know.

About a year ago (and 23 years after being diagnosed with scoliosis) my symptoms were no longer tolerable.  I couldn't sleep at night because of my shoulder and rib pain.  Driving would cause my back to spasm and send pains shooting down my arm.  I couldn't breathe well and I began having pain in my chest.  So, I finally decided to see my PCP.  His response, "Why did you wait so long to come in?"  I guess I've just lived with pain for so long I figured it was what my life was supposed to be.