Scoliosis, SI Joint Dysfunction, Muscle Spasms, and Neuropathy

Starting in July of 2017, my wife went through over three months of physical hell. One physical therapy exercise led to an improvement in her situation, and she has generally been on a path of recovery since then, but we worry that she's hit a plateau, and that there's some risk of a similar crisis occurring again. Not fully understanding what happened in the first place, it's impossible to know for sure what could trigger it again.

The following notes are our summary of what she has gone through, what worked, theories as to what happened, and open questions about what's next. It's a condition report that we provide for new doctors. I don't think one of them has ever read the whole thing, but it helps us keep track of the many, many details of my wife's condition, treatment history, etc., and gives us a shared reference during medical appointments. We've decided to share it here, in its raw form, in the hope that it might help someone else better understand what they're going through, and maybe find some guidance toward treatments that will improve their situation.

I have considered rewriting this as a chronicle that would be more readable for someone who might have similar issues. Comment if this is something you think would be valuable. If there's enough interest, I'll undertake the project.

Open Questions

Can we back into an understanding of what went wrong so as to prevent anything so serious from ever happening again?

Why does left leg become functionally shorter when it's not anatomically shorter? This question wasn't answered when the shim was recommended in 2007, to treat radiculopathy, but it seems important
Why in the morning is she comparatively fine?
How did the pelvic adjustment "fix" her?
Relaxing erectors causes pain that seems related to psoas connection-points; which one causes which, or is this a feedback-loop where it's impossible to know where it started?

Most successful treatments to date

SI injections
PT exercises

"Miracle exercise" brings immediate relief, AND seems to contribute to overall improvement
Twisting upper body, twisting to give self SI joint adjustment, and leg stretch (heel to butt) all bring relief

Walking brings relief
Hot showers bring relief, and allows for fuller back extension (McKenzie exercises)
Combination of Valium and medical marijuana help bring on sleep, but whether they subdue musculoskeletal issues is unclear

What's next? (Longer list of options included later in report; these feel like the options most likely to be helpful)

Should Nancy consider going back to using the shim/heel-lift?
Water therapy?
Another psoas steroid + local anesthesia injection, this time from the posterior side?
Getting kicked out of PT because symptoms change too frequently; need to find a new therapist

Challenging because lying down and standing back up brings on symptoms, except first-thing in the morning

Massage?

This has historically been problematic, because it can cause lasting setbacks
Also challenging because lying down and standing back up brings on symptoms, except first-thing in the morning

Current Symptoms (July 2018)

Psoas tightness causes muscle pain, and initiates "shin splint" neuropathy (presumably due to interference with branch of femoral nerve that becomes saphenous nerve)
Lying down after 3-5 minutes brings on mild version of these symptoms
Coughing or rolling over while lying down makes symptoms far worse, and standing back up is hell

As a result, PT and massage are only practical first-thing in the morning

Psoas "clenching" tightness, front and back of pelvis

Sitting for prolonged periods brings this on
Lying back in reclined car seat used to be better, but now makes it worse

Left erectors get crazy-tight and seem to contribute to the problem, but letting them relax causes pain in lumbar area and left hip (seems related to psoas connection-points)
Muscle weakness

When lifting left leg for a prolonged period, muscles feel weak, and this brings on a sense of "clenching" tightness

Still no reflex in left knee (this might have been a pre-existing condition prior to July, 2017)

Symptoms at Height of Crisis

Left leg

Episodic pain when sitting or lying down

Excruciatingly painful muscle spasms

Spasms typically occur as muscles relax
Most intense in:

upper, outer buttock
top of leg, from groin to hip (roughly along line of the inguinal ligament)
front of thigh, with two trigger-points, one above knee and one at top of thigh

Affected muscles (we think)

Piriformis
Iliopsoas
Pectineus
Rectus femoris
Sartorius

Muscles clench/cramp

Most intense along outside of hip

Tensor fasciae latae
Iliotibial tract

In worst case, episode went all the way down to left ankle

At this time, she felt "pins and needles" in the lower half of her leg, from knee to ankle (paresthesia)

Spots "p" and "q" feel like they're connected by a tense rubber band, and episodes starting in piriformis are instantly transmitted to the front

p=spot where piriformis inserts into greater trochanter
q=spot on top-front-left of leg (iliopsoas?)
PT describes this as a "tug-of-war between the muscles"
These spots line up with connection points of tendons where psoas connects to pelvis in the rear (p) and front (q)

Inflammation

Entire piriformis (while in hospital and after body work, for sure)
Piriformis insertion point at left greater trochanter

We noticed heat and swelling in this particular area in the days after PT

Weakness when lifting left knee

This is worse at night, and is sometimes much better in the morning

Loss of feeling (first noticed approx. August 15)

Thigh, when lifted for more than a few seconds (even if foot is resting on something)

Burning pain

For two nights (July 19 & 20), she felt fairly intense burning pain in the front of her left thigh; this started after we returned from the hospital, and subsided soon thereafter

Dry skin

Top of hip, front and back (sometimes all the way down the leg, but top of leg is worst)
Came and went, approx. August 5 - 20

Tightness throughout the day

Until approx. August 13, this was something that "didn't want to be touched"
Since then, this has gradually become more receptive to massage

Brief, spontaneous contractions (fasciculations)

Occur while falling asleep, especially on nights when there are also painful spasms
Anterior medial thigh
Twitch above knee in the evening

SI joint pain

Right leg

Issues seemed to come on some time after returning home
Heel feels partially "dead" (although we confirmed it's still ticklish)
Calf prone to cramping

Unable to bend forward

Causes major pain along top of the left leg, along what we think is the insertion point of the pectineus, but could be the inguinal ligament

During an episode, movement almost anywhere in her body can trigger spasms or clenching, regardless of whether she's moving herself or someone else moves her
Swollen legs

This was very pronounced while in the hospital, and has largely subsided
Our suspicion is that this was due to a combination of medications and standing for 16-20 hours every day

No "shooting pain"
No heightened sensitivity (hyperesthesia)
No clenching or spasming in back of thigh
No back pain beyond the usual

Diagnostics

CT scan
Standing x-rays
EOS x-ray (full body, front and side, in a single take; no image-stitching)
Images from fluoroscopy (which was done during SI injections)
MRI (lumbar and pelvis/hip)
EMG (left and right legs, for comparison)
Blood tests: CK-MB high (5.3); magnesium (2.4); phosphorus (3.5)

Treatment

Trigger-point injections (local anesthetic)

Immediate short-term relief from piriformis injection

Reduced spasms enough to allow for SI injection
About 7 hours of relief

Little to no effect from injections to front of left leg (at "q" and along IT band)

Medications - No clear indication that anything has helped

Ativan (lorazepam) - muscle relaxant
Baclofen
Cyclobenzaprine (flexeril) - muscle relaxant
Decadron (steroid) (IV)
Dexamethazone (oral steroids)
DiazePAM (valium) (oral) - muscle relaxant
Dilaudid (HYDROmorphone) (IV, PCA) - narcotic
Famotidine (pepcid)
Gabapentin (neurontin) (oral)
Lidocaine patch (Lidoderm)
Toradol (ketorolac) (IV) - anti-inflammatory
Tylenol

SI injection (steroid)

July 7, 2017 - Major improvement
July 26, 2017 - Significant improvement

Body Work

Trigger-point therapy & lighter massage

Significant setback

Tuning fork

No sense that it did anything

Craniosacral therapy

No change

Work with Integrative Movement Specialist (Judson Gambill)

Definitely helped, especially breathing exercises

Physical Therapy

Improved ability to lift left leg
Early on, this caused inflammation/swelling and pain at lateral piriformis insertion point
Pelvic adjustment (lowering left hip) ultimately led to total elimination of severe spasms

Steroid injection into psoas

May 3, 2018 - Setback, with no signs of overall improvement

Theories

SI joint dysfunction

Both SI joint injections brought substantial and lasting relief
Physical exams performed by neurosurgeon Dr. Jerrel Boyer and physiatrist Dr. Gilbert Aaron
History of SI joint relief from chiropractic adjustments
Range-of-motion work on right leg during PT caused pain in piriformis on left side
Some sources suggest SI joint dysfunction can affect femoral nerve, which seems to line up with spasms and clenching in front of left leg

Against

Can all this really be from SI joint?
Leg pain from SI joint dysfunction is more often down the back of the leg, not the front (although femoral nerve is sometimes affected more than the sciatic)

Lumbar nerve root compression due to stenosis

Significant spinal stenosis
Affected area is large enough to suggest nerve root issue
Reports that nerve root compression can cause similar spasms and pain
No reflex in left knee
Some weakness felt when lifting left knee

Against

Numbness is localized and triggered by lifting left knee
EMG showed normal nerve conduction in muscles innervated by femoral nerve, according to Dr. Gilbert

Compression/entrapment of peripheral femoral nerve

Spasms and clenching in many muscles innervated by femoral nerve
Lifting left knee and holding it up caused numbness (hypoesthesia) during the crisis months
Burning pain felt for two nights (classic symptom of lateral cutaneous femoral neuropathy)
No reflex in left knee
Some weakness felt when lifting left knee

Against

Rare condition

Tendinopathy at anterior and posterior connection points of psoas to pelvis

Most consistent spots of pain and inflammation ("p" and "q") line up with these connection points
Pain walking up stairs

Against

Nothing was mentioned in MRI report

Piriformis syndrome

Diagnosed with piriformis syndrome in 1999
Intolerance to sitting
Inflammation of piriformis
Spasms seem to originate in piriformis

Against

Dr. Waldemar Nowak (neurologist) indicated that pain locations point to femoral nerve issue (L2-L4), not sciatic
Piriformis syndrome typically affects posterior thigh, posterior leg, and lateral aspect of the foot, none of which are affected
Walking brings moderate relief (although this does line up with some cases of PS)
Dr. Julie Wehner (orthopedic surgeon) pointed out that even if PS is a factor, a deeper diagnosis is needed

Hip joint problem

Chiropractor suspected hip joint issues (turned femur? damage to labrum?)

Against

Ruled out by orthopedic surgeon Dr. Greg Wynne (confirmed by Dr. Hoffman), based on imaging and a brief physical exam

Hip bursitis

Reports that severe bursitis can lead to similar spasms and pain

Against

No pain felt when palpating area
Bursitis is relatively small

Cyst, tumor, or pseudoaneurysm

Could be source of nerve pressure

Against

Should have shown up in MRI (although it's probably not something they were looking for)

Damage to nerve roots at sacrum

Have seen this listed as a related condition

Against

Should have shown up in EMG?
No bladder issues
No sensory issues in groin or buttocks

What's Next?

Diagnostics

Magnetic resonance neurography could offer more information about the nature of the nerve irritation

Yes, but this is not possible with the 1 Tesla MRI machine at Illinois Masonic; Dr. Nowak will look into a sufficiently powerful MRI machine, which are typically found only at university hospitals
Keep in mind that this might require a general anesthetic, to avoid movement due to spasms, which stem from lying down -- unless Nancy can lie down long enough, in advance of the scan, to get through the episode that comes from lying down

Repeat test, this time including quads to test femoral nerve

Originally recommended by Dr. Nowak, but Dr. Gilbert feels the original EMG has sufficient testing of femoral nerve
Was ultimately ruled out by Dr. Nowak, when he realized how extremely painful and inconclusive testing of quads would be

More specific EMG: FAIR Test, to test H-reflex of the peroneal nerve with patient in relieved position vs. pain position?

Ruled out by Dr. Nowak, who feels this would tell us nothing new

Sacral nerve block - if this works, RF ablation could bring relief

Recommended by Dr. Aaron Gilbert, physiatrist

Femoral nerve block

Recommended by Dr. Boyer if repeat EMG points to peripheral femoral nerve issue

Full-body EOS x-ray (Dr. Sugrue, Downer's Grove)
Epidural steroid injection

EMG sometimes fails to show lumbar nerve issues, and an epidural could serve as a diagnostic
Attempted epidural failed in

Exploratory surgery

If EMG suggests peripheral femoral nerve issue and femoral nerve blocks fail to pinpoint the problem

Treatment Options

Further SI joint steroid injections
PT
Radiofrequency ablation (RFA) (Cooled, if it's an option; otherwise, pulsed)
Epidural steroid injection
Acupuncture

Dry needling prior to July 4 didn't help
May not be practical, given that it involves lying down

Cryotherapy
Botox injection to weaken affected muscles - risk of long-term muscle weakening, with little sense that this would help
Spicula removal surgery (last resort) - high risk due to possible structural significance of bone structures that would be affected
SI joint fusion surgery (last resort) - high risk of later lumbar complications

Condition History

Lead-Up

October, 2016

Hip pain, which felt like it was in the joint
Pain was worst when she got too much exercise
Massaging IT band brought some relief
Front-left-quad stretch also brought relief, but chiro recommended this be stopped, to avoid pressure on labrum within hip joint
Could weight gain have contributed?

February, 2017

Three very painful massages, each took 3-4 days to recover from, she was bent over forward
Lying on front or back was causing pain at points "p & q"

March, 2017

Significantly worse approx. the first week of March - trouble walking because hip hurt so much
March 15 chiro visit, received adjustment, this seemed to make it worse
March 16 - 28, while in Mexico for work retreat, seated with legs lifted brought relief
Weight loss throughout Tax Season didn't help

April, 2017

Chiropractor treatments three times per week after return from Mexico

SI adjustments brought relief
Trigger-point massage by chiro brought relief
Electric stim was counterproductive, triggering spasms

April 19 - Trigger-point massage by massage therapist was extremely painful; following this...

"Hip joint pain" stopped during the day
Lying down became very painful, especially while lying on back or front, so she would lie on an ice pack on her left side

May, 2017

Continued pain while lying

June, 2017

June 15 - June 28

Less pain

June 29

Woke up with back hurting, couldn't stand up all the way

June 30 - Painful

Crisis - July through September, 2017

July 1 - Painful
July 2

Horrible spasmodic episodes first started
No sleep at all until 7:30am, then got some sleep seated lengthwise on love-seat

July 3

Chiropractor visit didn't improve things
Excruciating pain, no sleep - went to ER at 4am on morning of July 4

Hospital Stay

Drugs didn't touch the pain
Trigger-point injection of local anesthetic brought about 7 hours of relief to piriformis

July 4-6

Nearly no sleep
Frequent episodes throughout the day, 15-75 minutes each
Worse with each day

July 7

Started using hand-held urinal
SI injection
Successfully slept in bed (on right side) for first time since July 1

July 8 - 13

MRI
Orthopedic surgeons ruled out hip issues

Home

Long fight to see any specialists
Home visits from palliative nurse, OT, and PT
Out-of-pocket sessions with body worker
Consultation with Dr. Julie Wehner, who referred to Dr. Steven Mardjetko
Consultation with Dr. Waldemar Nowak, neurologist
Follow-up with Dr. Boyer, neurosurgeon who recommended SI injections
Consultation and physical exam with Dr. Aaron Gilbert, physiatrist
Months of PT at Illinois Masonic
Improvement plateau in early January, 2018
Three glorious weeks of improvement in March, 2018, then backslid with no explanation

Prior History

1999

First diagnosis of severe scoliosis

Fusions
Herniated discs
Spinal stenosis

2006/2007

Lumbar radiculopathy
"Fixed" by inserting a shim in shoe under left heel