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Hi from Australia! I would like to ask a couple of questions in regards Thoracic spinal cord stenosis. Here in Australia, we are lucky enough to have free universal medical care. With that comes inexperienced, training, time poor Doctors though and I am at my wits end trying to get some help.
I am hoping this forum can help and it would be nice to find others with similar experiences also.
I do have some questions which hopefully someone can answer.
I am very cognisant of the great importance of seeing the appropriate specialist for a physical examination. But therein lies my predicament there are very few of those with experience and knowledge in all things thoracic. I recently had an emergency presentation with blood pressure of 200/130+ dropping to 60/40 with breathing difficulties and difficulty walking.(I have pictures or video to substantiate this.) I had the cursory 5-minute examination, and I was diagnosed with an anxiety disorder and was sent on my way without any further testing or due diligence. As my condition continues to progress and deteriorate I have arranged another MRI scan with my primary physican. Given my well documented and established hx this primary diagnosis is so laughable and frustrating.
I am currently 57 years of age. I have a complex back history and I am unfortunate to have the rarer Thoracic cord problem. I have a stenosis of T6 T7 T8 T9 on the background of a kyphosis scoliosis. I also have had lumbar spine surgery and Cauda Equina syndrome.
I am concerned that I may have a significant and undiagnosed spinal problem with some possible breathing and or blood pressure problems also.
I apologise for the following supporting medical history timeline. It is so you can glean an accurate picture for the purposes of answering some questions hopefully.
I would also like to let you know I am a resilient motivated and independent person. I am extremely conservative in medical management. I have an exercise programme which also includes hydrotherapy. I do not often reach out for medical help especially in the last 10 years. But I recognise I am in serious trouble. Pain is not the issue but one of mobility and function is
I had an MRI scan in June (see timeline) but am also awaiting an MRI scan result which was done last week.
I have had a significant and profound progressive neurological decline in the last 12 months
CURRENT AND NEW SYMPTOMS LAST 12 MONTHS
MOTOR WEAKNESS:
Abnormal gait. I have great difficulty in walking. I can start off walking normally, then both legs are very weak and fatigued after 20 meters/5 minutes walking. I try to “chair hop” for a while then I get electric type pain in legs and I pitch forward, I can also fall because the knees/ankles(spastic) give way. I have also lost complete bladder/bowel function at the same time. I have had episodes of not being able to get out of bed to the toilet. Standing in one spot is difficult, climbing steps difficult as are downward slopes. Symptoms were often relieved with bending forward with shopping trolley.
BALANCE issues with lots of falls. if I close my eyes and turn, I can lose balance. I use a Walking frame when out and about.
PAIN/NEUROLOGICAL SYMPTOMS
Thoracic: referred crushing L chest pain under the breast but now on top of breast as well. Pins and needles; mid spine/left scapula (more frequent) made worse with carrying. Permanent sensory loss abdomen/back ring. I often get twitching and spasming of this area. Crush fracture T8 2017. Progressive and pervasive thoracic pain/pins and needles.
Lumbar: Red “hot poker” type pain in perineal area while long standing has now become frequent and pervasive
NEUROLOGICAL
Burning pain both legs and feet, heaviness, severe cramping and toe curling, numbness, pins, and needles in both legs. Difficulty lifting both feet while walking or attempting to walk. The more I walk the worse these symptoms get.
BLADDER/BOWEL I normally have bladder urgency/frequency. NEW: About 18 months ago I lost the feeling of urination and was unable to detect a “Full bladder”. I also noticed that I was not always emptying my bladder. I have also had episodes of not being able to pass urine at all. I do not always have a normal stream. I now have frequent urinary leakage and Complete loss of Bladder and Bowel function frequently and most days. I have had complete leakage while trying to walk when I have lost motor function and mobility. ** abnormal Kidney/bladder ultrasound emptying problem.
My Blood Pressures and heart rate is often very disordered. I am quite light-headed. With syncope/presyncope episodes.
I have noted that I have breathing difficulties. I have Left sided chest wall and upper abdomen dysfunction as well as paraesthesia, weakness, and myelopathy of this area. I have a hard permanently distended upper epigastric area. This is contributing to the breathing difficulties but has not been examined or tested yet. I am concerned that there is some weakness and or damage associated with the thoracic spine
I have a thundering sinus tachycardia problem with measurements on average 100-130. It has been recorded as much as 200.
Bradycardia has been recorded in the 20’s and 30’s.CORDED (20’S 30S)
I also have low saturations/breathing issues sometimes associated with lying on my kyphotic spine but also orthostaically.
I wrote the following document “claudication” to ask a doctor at my last hospital presentation only to be told there is no such thing as thoracic spinal cord claudication
I have tried to ask about the breathing difficulties only to be told it is an anxiety disorder.
I have tried to explain that I have had residual neurological deficits since 1995 and now I have AREFLEXIA which represents a change for me. I was told that HYPERREFLEXIA is the benchmark for thoracic cord stenosis

WHY I BELIEVE I HAVE CLAUDICATION OF T9(new level)
*I have Kyphosis/Scoliosis which puts me at a higher risk of compression/claudication. (I have previously been offered surgery for this but declined)
*I have had previous lumbar spinal surgery and Cauda Equina which also puts me at higher risk
I have developed AREFLEXIA in the last few months
I have a numb band around my abdomen and thoracic spine
I have had a significant increase in thoracic spinal pain
I have referred and increasing left sided crushing chest pain.
I have epigastrium and upper abdomen pain and permanent distention with muscle changes/atrophy?
I have pins and needles over the thoracic spine and into the left scapula this is now permanent and pervasive. In recent weeks, these pins and needles have become “hot” It is made worse with carrying things or if I lift my arms up, I sometimes can fall when lifting my arms up.
I have had some fundamental changes in spinal processes/movement etc (nobody has checked my spine in 2 years) despite many medical presentations
I have severe and debilitating/pervasive muscle cramps and spasming in my back, chest, and abdomen and into my legs. The cramping in the abdomen and chest is deep seated and particularly unpleasant making me scream out sometimes PERVASIVE ONSET 2 months or so. (new) now frequent and pervasive throughout the day and night. There is also Left side abdominal muscle weakness/ deformity?
Both legs are now permanently heavy and weak with numbness. The Left leg is worse.
I have sharp shooting electric shock type pain into my legs
I have severe leg cramping and toe curling
I have an abnormal gait
I can only walk 20 -30 meters before my legs fatigue, and I start to lose function in my legs with eventual spasticity leading to falls. The fatigue and weakness, cramping spasming start at my thoracic spine and travels to my legs
I can only stand for 2 minutes before I experience extreme fatigue and weakness in my back and all the way into my legs. I will then experience spasticity of my legs and I will fall over as I continue to stand or walk (I have video of this)
My back pain and neurological symptoms are relieved bent over in half over a shopping trolley or lying down. I can also walk relatively normally while bent over the trolley for a while. This is not the case with a walking frame.
Hot pins and needles uro-genital area (new 2 weeks)
Breathing difficulties. I have significant breathing difficulties while trying to walk and while lying flat. This is a mechanical problem and separate to the Autonomic issues. I have developed bradycardia 20’s 30’s. My Oxygen saturations drop to 70’s and 80’s and my pulse drops to the 20’s when I lie on my kyphotic spine, stand, sit or walk this is now more frequent and pervasive.
BLADDER CHANGES (NEW)
I have lost complete bladder control wetting myself (4 times this week) this is becoming more frequent.
I have no feeling of urination.
I cannot feel a full bladder
Abnormal stream
Unable to empty bladder sometimes as much as 20 hours

AUTONOMIC NEUROPATHY (probably back related?) but subjective.
There is a well-established and documented pattern over the last 20 years, whenever there is a deterioration in my thoracic back there is also an autonomic deterioration. T7 T8 and now T9
As my back condition has continued to worsen so has my presumed autonomic neuropathy (never officially diagnosed) I may be bordering of end stage/ failure, but this requires further assessment and investigations.
Cardiovascular I have had BP’s of 200+/130+ with the systolic dropping to 60 diastolic dropping to 40. And lower. These readings are at rest or sitting. It is much worse when up and about(orthostatic) which is too hard to record. THIS IS AND HAS BEEN PROGRESSIVELY GETTING WORSE. (I have pictures and documentation)
I have also had HR of 160-200 dropping to 28 and poor Oxygen saturations as low as 70’s
I often have error/unrecordable BP readings. (both high and low) These symptoms/readings are ongoing every day and change minute by minute. I am often symptomatic with many episodes of syncope and pre-syncope
Gastroparesis/Digestive I have had severe gastroparesis requiring enteral feeding previously. I still have slow gastric emptying. Severe bloat.
There has been a fundamental change in my gastroparesis/neurology in the last 6 months or so. I no longer have any feelings of satiety or hunger or many other feelings of digestion. I do still get bloat severely at times.

In 2015 I had an independent medical assessment for the insurance company and represents the last time I had a full and thorough assessment. Below are some of the relevant findings.
OF NOTE: THE RESIDUAL NEUROLOGICAL CHANGES SINCE CAUDA EQUINA SYNDROME IN 1995
NEUROLOGICAL EXAMINATION LOWER LIMBS:
REFLEXES:
The knee jerk (patella tendon reflex) deep tendon stretch reflex responses were just elicited (+) on both sides; but the ankle jerks (Achilles’ tendon reflex) deep tendon stretch reflex responses were completely absent (-)on both sides lying supine; and also completely absent, with the patient lying prone, on the examination couch.
NEUROLOGOCAL EXAMINATION UPPER LIMBS :
REFLEXES:
The biceps deep tendon reflex response was quite easily elicited on both sides: somewhat more easily on the right side (++) than the left (+).
The brachioradialis deep tendon stretch reflex response was quite easily elicited on the right side; but I was not able to elicit it on the left side.
The triceps deep tendon stretch reflex response was somewhat equivocal (probably absent) on the right side; and I was certainly not able to elicit it at all on the left side.
THORACOLUMBAR SPINE RANGE OF MOVEMENT:
Movements: Observed Ran e Normal Ran e
Flexion 55 0 900
Extension 50 300
Right lateral flexion 150 300
Left lateral flexion 150 300
Right rotation 100 300
Left rotation 150 300
In other words, this worker has moderately severe abnormal motion.
SENSORY LOSS: PERINEAL REGION:

On examination today, this worker was noted to have quite a large area of peri-anal sensory loss: extending for some 7 to 8 cm diameter around the anal region.
RIGHT LOWER LIMB

This worker has a very large elongated oval shaped area of diminished cutaneous sensation, on the antero-lateral aspect of her right thigh, extending for some 13 h cm circumferentially; and some 44 cm in length down to just below
This large area of diminished cutaneous sensation extends down the antero-lateral aspect of the right leg below the knee, circumferentially for cm, and for a further 33% cm down to the dorsum of the foot, and the dorsum of the big toe, but excluding the dorsum of the other four toes.
7. UPPER LIMBS PARAESTHESIA: (NUMBNESS):
The worker complained that if she leans on a pillow in bed, at about the level of the inferior angle of the shoulder blade (T8?) — in the middle of her upper back?
“I get numbness and pins and needles ” in her left upper limb and left hand; “if I actually lean against —pillows in bed — I’ve noticed ‘oh this is numb ‘ and I have to sit up. ” The last time this happened was about a week ago. The pins and needles and numbness does not affect the thumb; but it does affect the index and middle fingers; (although she does have some trouble remembering the details); she also though it did affect the (back) – dorsum of her left upper arm; and the dorsum of her left forearm
QUESTIONS
1. Is it possible to have a claudication/pseudo claudication of the thoracic spine? (I have been told no)
2. Can a thoracic spinal cord stenosis affect breathing and or blood pressures?
I have a numb band around my abdomen and back. I have Left sided chest wall and upper abdomen dysfunction as well as paraesthesia, weakness, and myelopathy of this area. I have a hard permanently distended upper epigastric area.
3. What would be the recommended tests/examinations to confirm or rule out all the above
I believe that this has also contributed to my breathing difficulties, what tests and examinations and or medical specialty should I see about this? (concerned about intercostal muscle damage)
Since 2011 I have been told I probably have an autonomic problem, but this has NEVER BEEN TESTED to confirm a diagnosis.
4 What tests are recommended for this? Can autonomic neuropathy be associated with spinal problems? And in particular Thoracic spinal cord?
Due to the complexities and the lack of medical experience/expertise/ in thoracic cord problems I have found it exceedingly difficult to find the right doctor to help me. Does anyone have a recommendation on what I can do here in Australia?
Can you please advise as to what further testing and or examinations would be required to further my diagnosis and possible treatment? Only had MRI scans and bladder kidney scan so far.
Having had cauda equina in 1995 I was left with some neurological deficits; I have had long standing and documented problems with trying to elicit reflexes. In the last 12 months I have had a fundamental neurological change and have been told I have AREFLEXIA. I was told that I need to have HYPERREFLEXIA to have a clear diagnosis of symptomatic Thoracic cord stenosis. Is this the case?
In previous thoracic radiology/scans I have had central signal abnormality consistent with myelomalacia but in the last 3-4 scans 3-4 scans there are reports of “degraded signal, likely artefact”. Can

If left undiagnosed and untreated what would the likely outcome be?

Any other recommendations or suggestions would be greatly appreciated
Thank You
Cerizay

TIMELINE and BACK HISTORY/SURGERIES
1992 WORK RELATED LOWER BACK INJURY

1994 BACK SURGERY S1/L5: Radical Decompression, Laminectomy, Fusion,
Bone Graft, Steffe Plates and Screws Good surgical result

1995 BACK SURGERY R/O of screws and plates at S1/L5 for damaged
loose/bent screws/plates
CAUDA EQUINA Syndrome post back surgery. Neurological deficits
Paraesthesia Right leg/foot and great toe, saddle area, decreased anal tone
with
urinary( urgency frequency, minor incontinence) and bowel incontinence.

1996 BACK SURGERY Insertion of Medtronic intrathecal device.
narcotic infusion for pain management

Kyphosis/Scoliosis noted; referred to Orthopaedic Surgeon for
management and monitoring. X-ray: “Moderate Kyphosis, minimal
Scoliosis convex to Right. Mild to moderate spondylosis”
Surgery deferred

1998 GASTROSCOPY: Reflux, Gastritis, Esophagitis thought to be medication
related. First DIAGNOSED with GERD

2000 BACK SURGERY pain pump not working due to “kink” New
pump and catheter inserted. Post Op complications. C/O CSF
leak as fluid running(gushing) from back wound down legs
every time I stood up. I did not have a headache, so CSF leak
concerns dismissed. After 7 days of complaining I became very
unwell and was rushed back to theatre for emergency surgery
emergency back surgery
EMERGENCY BACK SURGERY for removal of pump and
catheter. The pain pump catheter had disconnected and
migrated soon after completion of ORIGINAL surgery (garden
hose effect of catheter) I indeed had a CSF leak, infection and
significant tissue derangement (the catheter had migrated
from lumbar spine to right side sacral area causing a cavity) as
a result. The pump continued to infuse without the catheter. I
REMAINED VERY UNWELL FOR SEVERAL MONTHS AFTER. IT IS
AT THIS TIME, I FIRST STARTED TO EXPERIENCE LIGHT
HEADEDNESS, STRANGE BLOOD PRESSURES AND PULSE
RATES AND FOUND IT DIFFICULT TO STAY
UPRIGHT.

2001 BACK SURGERY Insertion of new narcotic pump for
pain management.

BACK SURGERY Removal of intrthecal pain pump and catheter as developed an
infection *I chose to cease this form of pain management.

Abdominal pain, bloating, nausea, vomiting. Gastroscopy:
Reflux Oesophagitis and Gastritis.

2002 Thoracic and lumbar spine X-ray: “Increased Kyphosis with
significant Scoliosis.”

Ongoing abdominal problems: Tests: Gastric Emptying Study,
Markedly delayed emptying of both the solid liquid phases”

DIAGNOSED with GASTROPARESIS changes to diet.

DIAGNOSED with Neurogenic bowel

2007 MRI Scan Thoracolumbar spine: “Significant focal disc
protrusion at T7/T8 and to a lesser extent at T6/T7 resulting in
cord compression ventrally. L4/l5 left posterolateral disc
could potentially irritate the Left nerve root within its
foramen”

Ongoing issues with Bowel incontinence. Referred to Specialists for
investigation. Endorectal ultrasound and Anorectal manometry undertaken.
DIAGNOSED with INTERNAL SPHINCTER DEFECT LOW PRESSURE,
SPHINCTER

2010 Acute episodes of Epigastric pain, Stomach distention, Vomiting, diarrhoea,
and weight loss. High blood pressure problems as well as a sinus tachycardia
100-130.

2011 MRI scan Cervical and Thoracic spine: 1. “Stable appearances
of the large central T7/T8 disc extrusion with effectively cord
compression and central signal abnormality consistent with
myelomalacia. 2. A smaller T6/T7 central disc protrusion with
cord indentation and mild cord signal change is also stable.
3.No cervical cord compression or significant foraminal
stenosis.”

2011 continued

“Neurological Episode” hospital Admission treated for “Spinal Shock”. Worsening of Back Pain mostly thoracic, and neurological symptoms including, a new but now permanent numb band/ring around abdomen/back. Abdominal pain with the muscles going crazy, spasming twitching and cramping. Strange muscle spasming, twitching and cramping in back and legs also. Crushing Left chest pain (referred pain) motor weakness, worsening faecal incontinence, difficulty passing urine, lightheaded
• CT THORACIC SPINE SCAN: LARGE FOCAL CENTRAL DISC PROTRUSION AT T7/T8 CAUSING MODERATE FOCAL ANTERIOR CORD COMPRESSION AND MODERATE CANAL STENOSIS
• MRI LUMBAR SPINE SCAN; EVIDENCE OF PREVIOUS SURGERY AT L5/S1. THERE IS HETEROGENOUS MIXED MSRROW SIGNAL DEMONSTRATED. MINOR DISC PROTRUSIONS AT L3/L4 WITH HIGH T2 SIGNAL DEMONSTRATED POSTERIORLY IN KEEPING WITH AN ANNULAR TEAR. THERE IS A DISC BULGE LATERALLY INTO NEURAL EXIT FORAMEN’S AT L4/L5. THE FORAMEN AT L4/L5 IS ALSO NARROWED SECONDARY TO LIGAMENTUM FLAVUM AND FACET JOINT HYPERTROPHY. SMALL VOLUME POSTERIOR EPIDURAL SCAR TISSUE AT L4/L5.
• DIAGNOSED and treated for Spinal Cord Stenosis of T7/T8 and to a lesser extent T6/T7. Opted for conservative management and if signs of further Myelopathy (pain weakness, sensory changes, cauda equina symptoms) to return for assessment. (Surgery deferred)

Severe abdominal pain, distention, vomiting weight loss, poor appetite
breathlessness, disordered blood pressures: Hypertension (200/120), with low
blood pressures also recorded. Thundering heart rate of 100 or more.
Swallowing difficulties/throat irritation, for several months.

2012 First emergency admission for abdominal problems, weight
loss and malnutrition. DIAGNOSED and TREATED for
GASTROPARESIS. First NGJ tube inserted for Enteral feeding.

Hospital Admission with worsening of labile blood pressure. Symptomatic Postural Hypotension with sinus Tachycardia (130) DIAGNOSED as likely autonomic neuropathy

Between 2012-2017 more than 40+ NGJ, PEGJ, surgical J tubes inserted. I continued to lose weight, 60kgs in total with lowest weight 43 kilos.
I continued to suffer with malnutrition and dehydration requiring multiple IV replacement therapies. Abandoned Enteral feeding and chose a more conservative approach. Undertook research and trialled other forms of nutrition. Improvement in health and wellbeing.

2017 Head and Neck CT scan (T8 crush fracture incidental
finding)
2018 Significant increase in thoracic Back Pain, pins, and needles
and other neurological symptoms.
“MRI scan: 1. Multilevel disc degeneration with facet joint change resulting bilateral bony foraminal stenosis at C5/C6 and C6/C7. 2. Small central disc protrusion with minimal flattening of the anterior aspect of the right half of the cord at T6/T7 with a larger 0.6cm central/right paracentral disc protrusion at T7/T8 with cord flattening, with a further 0.6cm left paracentral disc protrusion at T8/T9 with flattening of the anterior aspect of the left half of the cord. 2. Mild central canal stenosis at L3/L4 and L4/L5 associated with facet joint degenerative change. This facet joint degenerative change is more marked at L4/L5”
2019
Continued deterioration and progression of neurological problems and autonomic dysfunction. Increased thoracic back pain with pins and needles over spine and left scapula. Now frequent pervasive episodes of syncope, and other presumed associated storm of symptoms. Worsening blood pressure dysfunction.

2020 April MRI THORACIC AND LUMBAR SPINE:

Mild artefact in the midthoracic region diminishing assessment of cord signal.
T6-7: Small right paracentral disc protrusion is unchanged in size. This mildly indents the thoracic cord, no definite cord signal are likely artefact. (see I-MED key images online)
T7-8: Moderate sized right paracentral disc protrusion measuring 4 mm x 6 mm.
This is stable in size and causes indentation of the thoracic cord.
T8-9: Moderate sized left paracentral disc protrusion which indents the thoracic cord. This measures 4 x 6 mm. This has increased in size since 2015.
The conus terminates at the level of Ll and shows a normal appearance.
No foraminal stenosis.
Lumbar spine:
Normal alignment.
L 1-2: Normal
L2-3: Moderate facet arthropathy. No stenosis.
L3-4: Moderate facet arthropathy and mild disc degeneration with broad-based bulge.. Mild canal stenosis.
L4-5: Severe facet arthropathy. Posterior decompression. Mild left foraminal stenosis. L5-S1: Posterior decompression
Conclusion:
1. Increased size of the left paracentral disc protrusion at T8-9 since 2015 which indents the thoracic cord.
2. Stable indentation of the thoracic cord by the right paracentral protrusions at T6-7 and T7-8.
3. The cervical canal is capacious.
4. Satisfactory posterior decompression of the lower lumbar spine. No substantial lumbar canal stenosis.