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January 1, 2000

Georgena Sarah Sil
Saskatoon, Canada

On TV watched fireworks in NY Times Square and Canada. Planet earth poised for the new century on a note of hope and optimism. The next century – more, the next full millennium – will reveal exponential growth in computers, science, medicine. How soon will it be before the puzzle of autoimmune diseases will be solved? Will any of these answers be accessible in my lifetime?

 

This is the real-life pain journal of a proactive patient. This published portion focuses on Reflex Sympathetic Dystrophy treated with Neurontin (Gabapentin).

 

Relevance:  In 2018, Neurontin is still widely prescribed and recommended for RSD, despite being debunked.

January 4, 2000

Appointment:  Dr. Jeff McKerrell
Orthopedist, Medical Arts Saskatoon

Discuss punch biopsy to cuboid bone of my right foot performed by Dr. Jeff McKerrell on Sept 8, 1999 at Saskatoon City Hospital. Review X-Rays taken before and after biopsy.

 

Dr. McKerrell confirms his previous surmise, that the delayed healing of my foot may be due to Reflex Sympathetic Dystrophy. The color changes in my foot (dusky-gray, to dull red, to mottled red), the continued pain, sensitivity to touch, and excessive swelling, provide a “convincing clinical picture of RSD.”

 

Dr. McKerrell insists it is the duty of my family doctor to follow up on this surgical complication.

JANUARY 31, 2000

Saskatoon Royal University Hospital
Nuclear Medicine Department

Three-Phase Bone Scan of feet at RUH. Plantar view for blood flow and blood pool images. Plantar plus side view of each foot for delayed images at 2 hours.

Foot condition today: Right foot grossly swollen. Foot entirely filled my large black sock. Did not wear tensor bandage, as metal clips could interfere with Scan. Stabbing pain in right foot, at incision area and along outside edge. Pulling sensation across little toe.

 

Bone Scan:

Performed 20.7 weeks

after RSD onset

Bone Scan Film

FEBRUARY 7, 2000

Mediclinic Recall Notice
GP Dr. Joel Yelland

Recall Notice from Mediclinic nurse. Reason for Recall: “Bone Imaging results available for review.”

Notice: Bone Scan Results

Recall Notice

Proactive patient: I asked for a Bone Scan after I found a paper  RSD: Diagnostic Controversies  describing the distinctive pattern of RSD on Bone Scintigraphy: the optimal imaging time is 0 to 20 weeks from symptom onset; this window catches RSD during its ‘hot stage’ (Stage I). A Bone Scan is a safer diagnostic procedure than  Sympathetic Nerve Blocks.

RSD Onset: Sept 8, 1999

Bone Scan: Jan 31, 2000

Time Delay: 20.7 weeks

MAY 5, 2000

Mediclinic Recall Notice
GP Dr. Joel Yelland

Recall Notice from Mediclinic nurse. Reason for Recall: “Appointment for nerve conduction studies. University Hospital EMG Lab June 15/00 at 11 am.”

Notice: EMG Lab

Recall Notice

Proactive patient: I requested an EMG based on papers such as  RSD: Changing Concepts and Taxonomy  which say: CRPS Type I (RSD) is diffuse, while CRPS Type II is localized. The sole differentiating criteria between CRPS Type I and Type II is the presence of a definable nerve lesion.”

JUNE 2, 2000

GP Appointment:  Dr. Joel Yelland
Saskatoon Mediclinic

My report: Two days ago I went again to U of S Library. Right foot was held downward by necessity when riding scooter, and for hours at study carrel. This caused foot to quickly swell. That evening at home: intense, sharp aching going up right ankle, calf, to mid-thigh. This was the first time that my right foot pain extended upwards. Entire right leg involved. Color: mottled red.

 

RSD can spread. Thus recent event is of serious concern. My library info: RSD has two branches: neuropathic pain, and inflammation (treated by corticosteroids).

 

Yelland prescribed Prednisone for eight weeks (taper from 30 mg/day to 5 mg/day).

JUNE 15, 2000

Saskatoon Royal University Hospital
EMG Laboratory

EMG Lab at RUH:  Tested both right and left lower legs (ankle to knee). Testing turned my right calf bright red. Persisted. My right side is the dominant side; it is also the injured side.

Results:  Side-to-side difference. Nerve Conduction test: amplitude of my right peroneal was ½ the amplitude of my left peroneal (yet stimulus level was 32% higher on the right side). My right tibial nerve showed dispersion. F Waves impersistent on right side.

Left Peroneal Left Peroneal
Right Peroneal Right Peroneal

AUGUST 4, 2000

Mediclinic Recall Notice
GP Dr. Joel Yelland

Notice from Mediclinic nurse. “An appointment has been made for you with Dr. Donat” in the Neurology Department at Royal University Hospital, Saskatoon.

 

RUH later postponed all appointments with Dr. Donat by a month (reason: his grandson died).

 

Notice: Dr. Jeff Donat

Recall Notice

2000 September 29

Appointment:  Dr. Jeff Donat
Neurologist, RUH Saskatoon

Dr. Donat covered my autoimmune profile. In reference to my right foot, Dr. Donat’s consult report said:

She does have sympathetic reflex dystrophy. This is not due to a peripheral nerve injury. Treatment might include Neurontin. The Neurontin can be started at 300 mg TID and gradually increased to as high as 900 mg TID as tolerated. Of course high doses might aggravate her fatigue.”

 

During this appointment I inquired about my recent EMG Study (Electro-Myelogram). The conduction amplitude of my right-peroneal nerve was one-half the amplitude of my left-peroneal nerve. Dr. Donat said: The swelling of your right foot caused this.”

OCTOBER 4, 2000

GP Appointment:  Dr. Joel Yelland
Saskatoon Mediclinic

Discuss out-of-province referral just accomplished with rheumatologist Dr. Baker in Victoria B.C.

 

Rx for antibiotic Cloxacillin for right foot. Foot warmer than left side, and this is uncharacteristic of RSD, where the warm phase lasts 2 to 3 months then proceeds to a cool phase. Per Dr. Baker advice.

OCTOBER 13, 2000

GP Appointment:  Dr. Joel Yelland
Saskatoon Mediclinic

Right foot grossly swollen at both mid-foot and ankle. Right foot is sweaty. Observed by Yelland in comparison with left foot. Both feet, bared, were observed directly by Yelland. Nothing provoked swelling except having foot held downward when shopping by electric scooter yesterday. Did not walk on foot; simply held it down.

 

Samples of NSAID COX-2 Vioxx (25 mg for 6 days, then 12.5mg for 16 days)

OCTOBER 18 2000

University of Saskatchewan
Murray Memorial Library

Research in Murray Library U of S. Fatigue set in almost immediately. Rest periodically. Achieved small fraction of what a trained physicist should be able to do. Ambition runs at 100%; body runs at 12%.

 

Today Mediclinic sent Recall Notice; no reason stated. Significant: At next visit, Yelland proposed Gabapentin. Yelland eagerness in plain view, but agenda hidden.

 

Notice: Agenda Veiled

Recall Notice

OCTOBER 21, 2000

GP Appointment:  Dr. Joel Yelland
Saskatoon Mediclinic

Yelland provided two articles to me re treating RSD with Neurontin, titled:

·Treatment of Neuropathic Pain: Focus on Gabapentin

Pain Research and Management 1999, v 4

·Gabapentin for Treatment of Postherpetic Neuralgia

Lead Author: Dr Rowbotham, Neurontin Team Leader, Pfizer

JAMA 1998, v 280

This treatment was also recommended in Sept 29th report from Dr. Donat. Notably, Yelland delayed before raising Gabapentin with me. There was time for Yelland to contact a Pfizer sales rep and check their program of inducements. Evidence: On his own, Yelland would never select a paper on Postherpetic Neuralgia (not my condition). Yelland showed irrational, brutal rage when I had to stop Gabapentin.

OCTOBER 23, 2000

GP Appointment:  Dr. Joel Yelland
Saskatoon Mediclinic

Rx for topical Lidocaine (Xylocaine 5%) as topical anesthetic for RSD in right foot. I requested a trial of this, per the research paper provided by Yelland from Pain Res. Management, Vol 4(4), 1999.

 

Yelland instructions: Use Lidocaine overnight to start with. Apply saran wrap as occlusive dressing.

OCTOBER 24, 2000

Pain Journal (Home)
Patient Georgena Sil

Result of topical Xylocaine ointment (Lidocaine, 5%, topical anesthetic): Coated right ankle with Xylocaine, and covered with occlusive dressing, as instructed by Yelland. Dressing was saran wrap, fastened loosely. After two hours, saran wrap became so irritating that I had to remove it. There was no pain relief at all from Xylocaine on my ankle. Tried an experiment: placed small circle of Xylocaine on forearm, waited a few minutes, then tested for numbness. Arm did not feel numb to either my finger-touch or to pinprick. The Xylocaine cannot be expected to handle the deep pain in my right foot. Next: tried spreading Xylocaine over scar at top of R foot. This does help in a very slight way, numbing the sensitive scar for perhaps an hour or two.

NOVEMBER 4, 2000

GP Appointment:  Dr. Joel Yelland
Saskatoon Mediclinic

Rx for Gabapentin (to treat RSD).

Right foot examined: sensitive and sweaty. Topical Xylocaine helps scar only slightly.

 

Gabapentin 100 mg b.i.d.

Quantity for one month = 70

PDA = Parke-Davis Div of Pfizer

Gabapentin

NOVEMBER 8, 2000

University of Saskatchewan
Murray Memorial Library

Research in Murray Library at U of S. Went via wheelchair. Right foot, by necessity, was held downward for periods of time – though I elevated my R foot as much as possible, when I sat in one place such as at computer station.

 

Result of holding R foot downward: right ankle flared intensely afterward, all night and next day (Thurs). Stabbing returned mid-foot. Deep aching persisted through entire foot. I live my life, now, around elevating my right foot. This is my best tool for taking care of my RSD.

NOVEMBER 9, 2000

Pain Journal (Home)
Patient Georgena Sil

First try of Gabapentin (Neurontin) for the RSD in my right foot. Try was delayed since pharmacy had to order in correct size (capsules cannot be cut). Result of 100 mg, two doses, today: No noticeable impact on pain.

 

Drowsiness is a problem: did not fall asleep until 4 am, but then slept until 8:30 pm Friday evening. Will continue trying to adjust timing.

 

Duration of sleep was 16 ½ hours.

NOVEMBER 10, 2000

Pain Journal (Home)
Patient Georgena Sil

Right ankle still flaring with pain from being held downward two days ago at the library. Right foot mottled, bright red, sweaty.

 

My new 7“ bed-wedge proves more suitable than the former 12“ height. The lower foam-wedge did not cause a flare of my Osteitis Pubis last night.

NOVEMBER 13, 2000

GP Appointment:  Dr. Joel Yelland
Saskatoon Mediclinic

Densitometry results: osteopenia in hips, and full-blown osteoporosis in lumbar spine.

 

Results of Gabapentin so far:  No clear-cut impact on pain. At the dose of 100 mg twice/day, does not improve pain in my right foot. But does cause side-effect of drowsiness. Yelland advised me to increase dose at night to 200 mg, but leave A.M. dose same. Will take work over several weeks to adjust dose, and also the timing of Gabapentin, to obtain maximal effect, if it is to work at all.

NOVEMBER 21, 2000

GP Appointment:  Dr. Joel Yelland
Saskatoon Mediclinic

Gabapentin update: Felt headachy the past few days. Stop Gabapentin to let things settle down, then try again.

 

Renedil is helping RSD pain, especially sharp aching up ankle. This past week, stopped morning dose of Renedil, replacing it with Niacin to treat high cholesterol. But after one week, ankle pain flared severely, going up outside of right calf. Decided to resume Renedil in A.M. (2.5 mg), and within a day, foot pain was better, at previous level.

 

Further discussion of lab tests.

DECEMBER 2, 2000

Pain Journal (Home)
Patient Georgena Sil

Headache has cleared up.

Therefore, resume Gabapentin once more for RSD.

 

Headache had occurred, and worsened over time, when Gabapentin dose went up to 300 mg per day. However, it is not certain that this med caused the continued headache – it could have been another cause, such as possibly coming down with a cold (though there was no respiratory infection apparent).

 

Conclusion: I stopped Gabapentin until the headaches cleared up, then restarted (today).

DECEMBER 5, 2000

GP Appointment:  Dr. Joel Yelland
Saskatoon Mediclinic

Renew regular Rx.  Include Neurontin (Gabapentin) to continue its try for RSD in my right foot.

 

Gabapentin 100 mg t.i.d.

Quantity for one month = 102

PDA = Parke-Davis Div of Pfizer

Gabapentin

DECEMBER 11, 2000

University of Saskatchewan
Health Sciences Library

Library research. Very exhausting. Hands and other muscles in arms felt like they had run a marathon after handling the heavy journals in order to xerox them. When xeroxing, had to kneel with my right knee on seat of wheelchair, while I stood on my left leg. Put extra pressure on my left hip and caused considerable pain.

 

Used right-side elevating footrest on wheelchair when sitting at computer station. Despite this, right foot swollen on return. Pain excruciating up my right ankle, in the form of sharp aching. Deep dull ache has newly onset in bottom of foot, about two inches back of toes. During past few days, fevers spiking.

JANUARY 6, 2001

GP Appointment:  Dr. Joel Yelland
Saskatoon Mediclinic

Gabapentin stopped: Had no impact on pain, of RSD or elsewhere. Caused no improvement. Did cause difficult side-effect of a constant, diffuse headache. Tried the protocol three times over two months: no help for pain; gave me headache.

 

Throughout the period of trying Gabapentin, I experienced a severe, intense flare of my Lupus Arthritis (especially Osteitis Pubis) and I had fevers spiking several times a day.