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International Patient Survey
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International Patient Survey

The following Survey is one of the very few which has ever been conducted with regard to clinically significant adhesive arachnoiditis.

Dr. Sarah Smith spent many hours with COFWA Group members and others from around the world preparing the Survey and has consented to having her report published on the COFWA web site.
    
Purpose of Survey is To raise awareness of arachnoiditis, in the medical and public domains with the hope of future research.  The Survey was completed in 1999.

Patient Population:

317  international respondents contacted globally by e-mail and postal communication.


1999 ARACHNOIDITIS SURVEY

This is a global postal survey of arachnoiditis sufferers, with participants from USA, , UK, Europe, New Zealand and Australia.

The object of this survey is 1. To raise interest amongst the medical community and thus hopefully clinically based research. 2. To increase understanding of how this condition affects the sufferers. (In particular, to give some idea as to prevalence of each symptom) Whilst the information is anecdotal, the size of the survey is of statistical significance.

It should be noted that previous surveys: (Long; Aldrete) have looked at a narrower range of symptoms. This survey has attempted to include the majority of all the commonest symptoms. A direct questionnaire was sent out and all replies of patients with a diagnosis of arachnoiditis were entered into the survey. Data has been collected over a period of several months via e-mail and "snail mail". (Some survey responses indicated that there was no diagnosis: these were excluded from the main body of results. However, this data was compiled separately for comparative purposes (using cases with one or more of the risk factors (i.e. not based on symptom picture). Comments: Interpretation may be difficult due to the anecdotal nature of the data.

Although there is a predominance of over 50s age-group, it must be note also the predominance of respondents having suffered arachnoiditis for over 10 years (and in some cases over 20 years.) This would therefore indicate that the onset of the condition was in fact commonly in middle age. This has a significant bearing on the impact on the sufferersí lives and those of their families.

Looking at risk factors, the numbers of course reflect the fact that in the majority of cases, the condition is multifactorial in origin. There are, however, some 40 cases in which there were only chemical causes (no mechanical risk factors such as surgery, trauma or degenerative conditions). Data about history of surgery/myelogram/epidural anesthesia/epidural steroid injection refers to one or more of each type of procedure: i.e. if a respondent has several interventions, this is recorded only as one as regards incidence. This is to avoid confusing the data. Further breakdown of the data is also presented to attempt to clarify.

Data about site of lesion: Cranial involvement includes residue of oil-based myelographic dye in the skull seen on X-ray.

As regards concomitant autoimmune disorders: the overall total incidence of diagnosed autoimmune conditions was 154(i.e.48%): this refers to the total number of diagnosed conditions, but as some cases involved several concomitant conditions, it is helpful to look at prevalence: including fibromyalgia, there were 97 cases i.e. 30%. This is much greater than would be expected in the general population.

Pain was universally a part of the symptoms. As discussed in my article "The Arachnoiditis Syndrome", it may be of several types and in various sites. Overall, however, the neurogenic pain is the predominant feature and this tends to be a constant burning (dysesthetic pain), with intermittent stabbing and electric shock pains. (Lancinating).

Commonly there were also other features such as allodynia (pain due to non-painful stimulus, especially light touch) and bizarre sensations. Data about the site of the pain obviously will reflect the site of the lesion, but it should be noted that headaches were common(189 cases=60%), regardless of the spinal area involved.


RESULTS: EPIDEMIOLOGY

TOTAL NUMBER OF RESPONDENTS: 317

(percentage figures rounded to nearest integer; those less than 1% excluded) AGE GROUPS:

* 30-40: 16=5%
* 40-50 : 55=17%
* 50-60 : 124=39%
* 60-70 : 84=27%
* 70-80: 36=11%
* 80-90 :2

GENDER:

* MALE : 94=30%
* FEMALE : 223 =70%

TIME SINCE DIAGNOSIS (YEARS) (17=5% unspecified)

* 1-5: 87=27%
* 5-10: 80=25%
* MORE THAN 10: 133=42%

LEVEL OF LESION (S):

* LUMBAR: 277=87% LUMBAR LESION ONLY: 186=59%

* THORACIC: 75=24%

* CERVICAL: 62=20% WIDESPREAD:131=41%

* CRANIAL: 43=14%

RISK FACTORS:

* TRAUMA: 25=8%
* STENOSIS: 59=19%
* SPINAL SURGERY: 236=74%
* OIL-BASED MYELOGRAM: 183=58%
* WATER-BASED MYELOGRAM: 95=30%
* UNSPECIFIED MYELOGRAM: 63=20%
* SPINAL/EPIDURAL ANESTHETIC: 73=24%
* EPIDURAL STEROID INJECTION: 193=61%
* MENINGITIS(including chemical): 23=7%
* CHYMOPAPAIN: 4
* LUMBAR PUNCTURE: 7=2%
* SUBARACHNOID HEMORRHAGE: 2
* SPINAL TUMOUR: 3 +EPENDYMOBLASTOMA: 1
* DURAL TEAR/PUNCTURE/CSF LEAK :8=2%

FURTHER DATA ABOUT MYELOGRAMS:

TOTAL NUMBER OF CASES WHO HAD A MYELOGRAM: 267=85% OF ALL RESPONDENTS

SINGLE MYELOGRAM: 146

MULTIPLE MYELOGRAMS: 121

CASES WITH OIL-BASED ONLY: 117 (=44% OF TOTAL NUMBER OF MYELOGRAMS)

CASES WITH WATER-BASED ONLY: 44(16% OF TOTAL)

CASES WITH BOTH: 49(18% OF TOTAL)

UNSPECIFIED: 57(21% OF TOTAL)

CHEMICALLY INDUCED ARACHNOIDITIS (NO OTHER RISK FACTORS): 40=13%

MISCELLANEOUS ASSOCIATED CONDITIONS:

* SYRINGOMYELIA: 6=2%
* ARACHNOID CYST: 1
* ARNOLD CHIARI MALFORMATION 1: 1
* PARS DEFECT:1 ; CONGENITAL BRAIN AND SPINAL CORD DEFECTS:1
* SPINA BIFIDA OCCULTA: 12=4%
* TETHERED CORD: 3 + DIASTIGMATIC MYELIA:1
* SPINAL ABSCESS: 2
* POST-OPERATIVE INFECTION(SPINAL): 2
* TARLOV CYSTS: 2
* CONGENITAL KYPHOSCOLIOSIS: 1

POSSIBLE ASSOCIATED FACTORS:

* RHIZOLYSIS: 2
* RACZ PROCEDURE(HYALURONIDASE): 1

PREVIOUS SERIOUS VIRAL INFECTION (EBV*,HERPES ZOSTER**, HEPATITIS ETC.):41=13%

MUMPS ENCEPHALITIS: 1

TUBERCULOSIS: 4

POLIOMYELITIS 2 + 1?

*EPSTEIN-BARR VIRUS=GLANDULAR FEVER/INFECTIOUS MONONUCLEOSIS

**CHICKEN POX/SHINGLES

OTHER INFECTIOUS DISEASE: LYME DISEASE: 1

BRUCELLOSIS: 2

RHEUMATIC FEVER: 2

TYPHOID : 1

Results: SYMPTOMS/SIGNS

TOTAL NUMBER OF PARTICIPANTS: 317 (223F 94M)

Age range : 30-82 Mean age group:50-60

Pain : 100% (see accompanying notes)

Stiffness : 79%

Muscle cramps/twitches/spasms 81% Weakness 82%

Balance difficulties 70% Numbness/tingling 86%

Bladder/bowel/sexual dysfunction 68%

Difficulty in thinking clearly/decision making/memory 63% Depression/anxiety 62%

Sleep disturbance 84%

Increased sweating 63%

Heat intolerance 58%

Intermittent low grade fevers 28%

Flu-like feeling and malaise 42%

Raised ESR /white cell count 14%

Enlarged lymph nodes 10%

Joint pains 72% Skin rashes 32%

Frequent infections 20 % Sinusitis 32%

Slow healing/tendency to scar easily 29%

Limb/generalised swelling 38%

Reflex Sympathetic Dystrophy:3

Trouble swallowing 27%

Angina type chest pain (but no heart disease found) 31%

Weight gain 50% Reduced mobility (i.e. house/chair/bed bound?) 68%

Allergies (new, e.g. multiple drug allergies) 25%

Dizziness/vertigo 44%

Dry eyes/mouth 58% Bruising 39% Fatigue 76%

Dental problems (tooth/gum) 28%

Low potassium 10% Abnormal blood tests 13% Abnormal kidney function 7%

Abnormal liver enzymes 7%

chemical hepatitis 1

Osteoporosis 14%

Shortness of breath 32%

Lung problems 10%

Gastrointestinal problems: general 41% Irritable Bowel Syndrome 8%

Visual problems 45%

(Women) menstrual irregularities (if pre-menopausal)/early menopause/painful periods 14% Diagnosis of Autoimmune disorder: Ankylosing Spondylitis 4; Autoimune hearing loss 1; Autoimmune pancreatitis 2; Coeliac disease: 1; Crohnís disease: 2; Type 1 Diabetes Mellitus 12; Endometriosis 4; Haemolytic Anaemia 1; Lupus 5 (incl. 1 discoid)+4?; Multiple Sclerosis 11 + 3?;Polymyalgia Rheumatica 4; Psoriasis 1; Psoriatic arthritis 1; Raynaudís disease 26 ; Rheumatoid Arthritis 23; Sarcoidosis : 1; Sjogrenís disease 3+2? ;Thyroiditis/Hypothyroidism 20; Ulcerative Colitis 1;Uveitis/Iritis 1;Vitiligo 1;Pernicious Anaemia: 1;Miscellaneous Autoimmune 9; Fibromyalgia: 19; ?FMS 2; Total (incl.FMS)= 154=48%; number of cases*=87+11 FMS=98=30% prevalence. (*i.e. with one or more diagnosed autoimmune conditions)

Diagnosis of : Multiple Chemical Sensitivity 2; Myalgic Encephalopathy 1+1?;
Chronic Fatigue Syndrome 3; Myofascial Syndrome 1; Myalgia 1

Other neurological diagnoses: Epilepsy: 3; Parkinsonís 1; Peripheral
neuropathy 1; Postpolio syndrome: 1

Miscellaneous conditions:

Carpal Tunnel Syndrome: 1; Pagetís disease: 1; Erythema nodosum 1; Renal
calculi: 7; general renal problems (e.g hydronephrosis,haematuria):13;
Hiatus hernia/reflux oesophagitis: 8

Chronic leukaemia 1; Thyroid cysts: 2(see below)
Tumours: Breast: 5; Prostate 2; bladder 1; cervical 1; thyroid 2; ovarian 1;
pituitary 1; colorectal 1; renal 1(with lung metastases); "bowel" 1;
malignant melanoma 1;Melanoma : 1; Lymphoma :1

SUMMARY:

10 COMMONEST SYMPTOMS (in order of prevalence):

1. Pain (100%)
2. Numbness/tingling (86%)
3. Sleep disturbance (84%)
4. Weakness (82%)
5. Muscle cramps/twitches/spasms (81%)
6. Stiffness (79%)
7. Fatigue (76%)
8. Joint pains (72%)
9. Balance difficulties (70%)
10. Loss of mobility (68%)

Other common symptoms seen in the typical case:

1. Bladder/bowel/sexual dysfunction(68%)
2. Increased sweating (63%);
3. Difficulty thinking clearly/Depression (63% /62%);
4. Heat intolerance(58%);
5. Dry eyes/mouth(58%) and
6. Weight gain (50%).

IMPORTANT NOTE:

It must be stressed that for any NEW or increasingly worsening symptom, patients must consult their doctor for examination (and investigation where necessary). It must NOT be assumed that all symptoms are part of arachnoiditis and cannot be treated. For example: chest pain: obviously a heart condition must be ruled out; often chest pain can be occurring as a result of indigestion type  problems, maybe to do with some reflux of acid from the stomach: this is particularly likely if the patient is on anti-inflammatory medication. This can be eased considerably by appropriate treatment and furthermore, it may be necessary to discontinue the medication to avoid serious adverse effects.

THYROID PROBLEMS

CASE

1. 49 year old female; Graves disease; water-based myelograms; also diagnosed with fibromyalgia
2. 57 year old female; Graveís disease and thyroid eye disease; 2 myelograms(unspecified); also, IBS
3. 50 year old female; thyroiditis; 3 water-based myelograms; also IBS and ?Sjogrenís
4. ? age female; thyroiditis; myodil; also: Raynaudís
5. 66 year old female; thyroiditis; Amipaque(water-based)
6. 54 year old male; thyroiditis; Myodil
7. 59 year old female; thyroiditis; unspecified myelogram; also Ca breast,DM, FMS
8. 67 year old female; thyroiditis; myodil; also Rheumatoid arthritis
9. 59 year old female; thyroiditis; myodil and omnipaque
10. 53 year old female; thyroiditis; myodil
11. 57 year old female; thyroiditis; myodil; also DM
12. 72 year old female; thyroiditis; myodil
13. 60 year old female; thyroiditis; pantopaque and omnipaque; also, FMS
14. 70 year old female; thyroiditis; both oil and water-based myelograms
15. 60 year old female; Hypothyroid; Myodil(oil-based) myelogram; also: IBS
16. 47 year old female; Hypothyroid diagnosed in 1996; Pantopaque(=myodil); also Manic-depressive disorder
17. 41 year old female; Hypothyroid; one unspecified myelogram;
18. 38 year old female; Hypothyroid diagnosed 1991; no myelograms but had epidural steroid injection; also has Raynaudís and duodenal ulcer
19. 50 year old female; Hypothyroid; 3 myelograms; also: vitiligo and IBS
20. 68 year old female; thyroid surgery; myodil
21. 56 year old female; thyroid surgery; myodil
22. 61 year old female; partial thyroidectomy; myodil
23. 57 year old female; Thyroid tumour; myodil
24. 62 year old female; Thyroid tumour; myodil
25. 69 year old female; lymphoma>> thyroidectomy; myodil ; also diagnosed with MS
26. 46 year old female; thyroid cyst>>hypothyroid; myelogram
27. 64 year old female; thyroid cysts, small goitre; no myelogram but ESIs; also RA, multiple allergies

TREATMENT

MEDICATION: (in current frequent use)

* OPIATES(e.g. morphine, pethidine, methadone, tramadol etc.): 171=54%

* ANTI-INFLAMMATORY(e.g. Brufen,Mobic,Naproxen,Vioxx etc.) :144=45%

* ANTIDEPRESSANT(commonest amitriptyline; also prozac etc) : 90=28%

* ANTICONVULSANT (e.g. Tegretol; Neurontin;Vigabatrin): 84=26%

* MUSCLE RELAXANT: (e.g.Baclofen; Robaxin;Dantrolene;Zanaflex): 34=11%

* BENZODIAZEPINE(e.g. diazepam, clonazepam, nitrazepam, etc.): 39=12%

* DIURETICS(for fluid retention): 17=5%

* INA("the pump") :8=2% incl. CLONIDINE : 2

* SCS(spinal cord stimulator): 2

* STEROIDS : 4 (1 via portal implant)

* QUININE (for muscle cramps): 3

* MEXETIL: 1

* AXSAIN CREAM (topical capsaicin):1

* OXYBUTININ (for bladder muscle instability): 1

* BETHANECOL ( for urinary retention): 1

* ETIDRONATE (for prevention of bone loss in osteoporosis): 1

* RITALIN: 1 (for epilepsy)

* PARAMAX (=paracetamol+metoclopramide): 1

* SINEMET(for Parkinsonís):1

* BETAHISTINE (for Meniereís disease): 1

* NONE: 10=3% PARACETAMOL/ASPIRIN ONLY : 4

* TENS: 2

* Note low percentage on no medication or simple analgesia; generally, for respondents who were not on medication, this was due to inability to tolerate stronger medication due to side-effects or adverse
reactions.

* Most cases in the survey involved polypharmacy, with a combination of opiates with antidepressant and/or anticonvulsant being common. Anti-inflammatory medication (NSAIDS) usage was common despite a considerable number of respondents stating that they had had to discontinue use due to adverse gastric effects (e.g. gastric/duodenal ulcer, heartburn, gastric bleed), which are well-known with this type of medication.

* Antidepressant medication is used at a subtherapeutic dose as regards treating depression (i.e. say 25mg amitriptyline rather than 75-150mg) it is useful for neurogenic pain. Tricyclic antidepressants are most effective, whereas SSRIs (newer type) such as Prozac are often poorly effective. Of course, in some cases, full antidepressant dose may be given to combat any depressive features compounding the physical problems.

* Anticonvulsant medication is useful for neurogenic pain.

* Benzodiazepines: a group of drugs including valium: used either as a muscle relaxant or to combat anxiety, or perhaps as sleeping tablets.

* Both opiates and benzodiazepines are known to cause physical and psychological dependence though the latter is not as marked in usage for analgesia as compared with recreational use) and tolerance to
opiates may necessitate increasing doses for the same therapeutic effect.

RESEARCH SURVEY 1999:UNDIAGNOSED CASES

Results: (BRACKETS DENOTE RESULTS IN DIAGNOSED CASES)

TOTAL NUMBER OF PARTICIPANTS: 29 (F 18 M 11)

Age range : 37-78

Pain : 100% (see accompanying notes)

Stiffness : 79(79)% Muscle cramps/twitches/spasms 79 (81)% Weakness 69(82)%

Balance difficulties 52(70)% Numbness/tingling 83(86)%

Bladder/bowel/sexual dysfunction 59(68)%

Difficulty in thinking clearly/decision making/memory 52 (63)%

Depression/anxiety 66(63)%

Sleep disturbance 69( 84)%

Increased/decreased sweating increased 52(63)% Heat intolerance 55(58)%

Intermittent low grade fevers 21(28)% Flu-like feeling and malaise 62(42)%

Raised ESR /white cell count 3(14)%

Enlarged lymph nodes 14(10)%

Joint pains 62(72)% Skin rashes 31(32)%

Frequent infections 24(20) % Sinusitis 24(32)% Slow healing/tendency to scar easily 31(29)%

Limb/generalised swelling 28(38)% RSD:1 Trouble swallowing 31( 27)% Angina type chest pain (but no heart disease found) 24(31)%

Weight gain 55(50)% Reduced mobility (i.e. house/chair/bed bound?) 62(68)% Allergies (new, e.g. multiple drug allergies) 45(25)%

Dizziness/vertigo 38(44)%

Dry eyes/mouth 55(58)% Bruising 41(39)% Fatigue 69(76)%

Dental problems (tooth/gum) 31(28)%

Low potassium 1 Abnormal blood tests 14(13)% Abnormal kidney function 7(7)%

Abnormal liver enzymes 1

Osteoporosis 10(14)%

Shortness of breath 4I(32)% Lung problems 2 cases (10%)Multiple pulmonary emboli Gastrointestinal problems: general 14(41)% IBS 24(8)%,

Visual problems 45(45)%

(Women) menstrual irregularities (if pre-menopausal)/early menopause/painful periods 14(14)%

Diagnosis of : Lupus ?1 Raynaudís disease 4

Other autoimmune disease : Rheumatoid Arthritis 1; Thyroiditis 2+hypothyroid
1; Mixed connective tissue disease (MCTD): 1; non-specific inflammatory
arthritis: 1; Iritis: 1;

Diagnosis of MS 1

Other neurological diagnoses: Epilepsy: 1 ; Muscular dystrophy 1

Chronic Fatigue Syndrome 1

Miscellaneous conditions:

Carpal Tunnel Syndrome: 1; Sarcoidosis : 1 ; Pagetís disease (skull): 1;

Erythema nodosum 1;Granuloma annulare 1; renal calculi: 1; sleep apnoea 1;

keratoconus + cataracts 1 ;cystic ovary 1

TOTAL NUMBER OF RESPONDENTS: 29

AGE GROUPS:
* 30-40: 4
* 40-50 :12
* 50-60 : 7
* 60-70 : 4
* 70-80: 2

GENDER

* MALE : 11
* FEMALE : 18

LEVEL OF LESION(S)

* LUMBAR: 20
* THORACIC: 4
* CERVICAL: 7
* CRANIAL: 3

RISK FACTORS:

* TRAUMA: 2
* STENOSIS: 6
* SPINAL SURGERY: 16
* OIL-BASED MYELOGRAM: 6
* WATER-BASED MYELOGRAM: 11
* UNSPECIFIED MYELOGRAM: 2
* SPINAL/EPIDURAL ANAESTHETIC: 3
* EPIDURAL STEROID INJECTION: 14
* MENINGITIS(including chemical): 4
* LUMBAR PUNCTURE: 1
* SUBARACHNOID HAEMORRHAGE: 1
* TUMOUR (brain): 1
* DURAL TEAR/PUNCTURE/CSF LEAK : 4
* LUMBAR SYMPATHETIC BLOCK :1

MISCELLANEOUS ASSOCIATED CONDITIONS

* CONGENITAL ABNORMALITY (SPINAL) :1
* SCHEUERMANNíS DISEASE: 1
* SPINA BIFIDA OCCULTA: 1
* PAGETíS DISEASE IN SKULL: 1
* EPILEPSY: 1
* MUSCULAR DYSTROPHY: 1

PREVIOUS SERIOUS VIRAL INFECTION (EBV, HEPATITIS ETC.): 2

POLIOMYELITIS: 1

SPINAL FUNGAL INFECTION: 1

OTHER INFECTION: CHLAMYDIA: 1; E.COLI 0157 : 1

DIAGNOSES:

* FAILED BACK SURGERY SYNDROME: 3
* EPIDURAL/POST-OPERATIVE FIBROSIS:3
* MS: 1
* CFS: 1
* FMS: 3
* NEUROGENIC PAIN: 1
* RSD: 1

MEDICATION:

* OPIATES: 16=55%
* ANTI-INFLAMMATORY: 8=28%
* ANTIDEPRESSANT : 12=41%
* ANTICONVULSANT (e.g. Tegretol): 6=21%
* MUSCLE RELAXANT: 2
* BENZODIAZEPINE: 3

COMMENTS:

The majority of respondents felt that they in fact have arachnoiditis but have been unable to get a diagnosis. In some cases, they have been trying for years and have been left without any diagnosis whatsoever.

The results demonstrate the similarity of the symptoms to those of diagnosed arachnoiditis cases; however, it must be acknowledged that many of the symptoms are non-specific. Obviously, further investigation (examination and tests) is not possible in this postal survey, but it might be of considerable use in future research.

Note that the risk factors were the criteria for inclusion in the survey, not just the symptomatology.

Credits:

The assistance of the following organizations is acknowledged:

ASAMS (Arachnoiditis Sufferers and Monitoring Society of New Zealand)

COFWA (Circle of Friends with Arachnoiditis)

The Arachnoiditis Trust of UK

 


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Last Updated:12 June, 2007