Many people who have symptoms such as those described and a history of risk factors for AA still have difficulty in getting a diagnosis. As the condition is perceived to be rare, doctors often do not consider it a likely diagnosis. It is important that treatable conditions such as recurrent disc herniation are identified and treated and this can be achieved through the use of an MRI scan. High resolution scans may also be able to demonstrate AA, although in the early stages it might not be picked up. In any case, one must bear in mind that MRI scan results often fail to correspond accurately to the clinical picture. Heavy reliance on the need for a diagnosis is unadvisable, and often unnecessary, as management of symptoms is the only option, AA being incurable.
EMG (electromyogram) or NCV (nerve conduction velocity) tests may be performed to assess nerve damage. If there is loss of bladder control, urodynamic studies may be undertaken to fully assess the problem.
DIFFERENTIAL DIAGNOSIS: This refers to other similar diagnoses which may be relevant:
Ø Failed Back Surgery Syndrome: in fact, arachnoiditis probably accounts for over 10% of FBSS cases; FBSS is common, incidence varying from 25% to 40% of all spinal surgery cases. The commonest causes include: epidural fibrosis, recurrent disc herniation, spinal stenosis (narrowing of the spinal canal or the foramina (holes in the vertebrae) through which the nerve roots exit from the spinal cord. It is important that treatable causes such as reherniation of a disc, are identified and treated.
Ø Multiple Sclerosis: as mentioned above, it is quite common for arachnoiditis patients to be investigated for MS.
Ø CRPS: previously termed RSD: reflex sympathetic dystrophy, CRPS Type I refers to problems in one limb, often after trauma/surgery: pain, swelling and changes in skin colour and temperature, abnormal sweating: increased/decreased (bone density lost in later stages). CRPS Type II (previously causalgia) refers to more widespread problems, other than in the area affected by an injured nerve and resembles arachnoiditis. Continuous pain, allodynia (pain from non-painful stimulus such as light touch/clothing/temperature change) and/or hyperalgesia (heightened pain) can occur. (also: skin rashes, abnormal body temperature, tremors (shakes), tripping/falling.)
Ø Cauda Equina Syndrome: acute CES is a surgical emergency; loss of bladder/bowel function, saddle anesthesia (loss of sensation or tingling in the buttocks and around the anus/vagina/genitals), leg weakness and severe pain in the lower back/limbs/genitals. CES is basically a descriptive term for a set of symptoms. It may arise when there is a severe compression in the cauda equina, (horse’s tail) at the lower end of the spinal cord (acute causes include large disc prolapse). A chronic equivalent to CES may arise in arachnoiditis.
MANAGEMENT:^ Top As explained above, AA is incurable, but there are a number of measures which may be helpful in managing symptoms.
Sadly, in a survey in 2000, I found that quite a high proportion of AA patients continue to experience very troublesome levels of pain as well as other symptoms including loss of function.
In part, this may be due to reluctance of medical personnel to prescribe medication in the long term, especially narcotic painkillers, which are perceived as carrying a high risk of addiction. In fact, narcotics used for pain relief (in comparison with recreational use) carry a very low risk of addiction in the generally accepted sense of the term. Whilst the body becomes accustomed to a certain level of medication and goes into withdrawal if the drug is abruptly discontinued, psychological dependence is uncommon. Behavior that may be regarded by medical and paramedical practitioners as addictive, may arise out of a desperate bid to find adequate pain relief. Often, doctors are willing to prescribe medication such as anxiolytics or hypnotics (treating anxiety or insomnia) such as Valium (diazepam) or related drugs: which are in fact, far more addictive than narcotics (morphine and related drugs) and carry a risk of tolerance (needing increasing doses) that far exceeds that of narcotics. Usually, what the patient really requires is an increased dose of painkiller to relieve their ‘anxiety’ or sleep disturbance. Families may also be wary of narcotic use, deeming it as inappropriate; the stigma is still very much in evidence.
Management of AA should revolve around a wholistic approach and may require a multidisciplinary team involvement. However, this should be overseen by one individual amongst the medical personnel (usually the primary doctor or GP) It is vital that the patient develops a working therapeutic alliance with his/her doctor(s).
This will pave the way to a good level of compliance and a mutual trust and respect.
Treatments should be implemented one at a time and must be trialled for at least 4-6 weeks (unless there are severe side effects or allergic response) in order for adequate assessment of their efficacy can be made.
Round- the- clock dosing is essential to achieve effective pain relief and minimize side effects and tolerance (need for increasing doses to achieve the same effect).
Usually side-effects begin to subside after about 10-14 days of continued usage, so patients should be advised to ride out the first few days of sedation, nausea etc. if possible. Persistent side effects such as constipation and dry mouth are common, but may be managed fairly easily.
Below is a brief outline of the various strategies which comprise a multimodal programme:
1. Medication: often oral, but may also be via a patch. Typically, a triad of narcotic/antidepressant/anticonvulsant is used, +/- muscle relaxant +/- anti-inflammatory. (see below for more detailed list)
2. Physical therapies : massage (Shiatsu), chiropractic, cranialsacral therapy, Myofascial Release techniques; stimulating: Low Level Laser Therapy, Ultrasound, TENS; Acupuncture;
3. Exercise: loss of mobility may have a knock-on effect in general debility, and can directly contribute to development of osteoporosis; gentle exercise is helpful; ‘No pain, No Gain’ does NOT apply and exercise regime needs to be carefully tailored to the needs of the individual. Feldenkrais, hydrotherapy, isometric exercises are often helpful.
4. Treatment of specific problems: e.g bladder dysfunction; poor circulation in extremities
5. Management of side effects: such as constipation
6. Nutritional: avoidance of caffeine and possibly trigger foods; supplements such as vitamins, MSM, glucosamine.
7. Herbal/homoeopathic: NB. Herbal preparations may interact with prescription medication; St. John’s Wort (depression); Gingko
8. Lifestyle measures: smoking: preferably should be stopped as it worsens circulation; alcohol: may interact with medication; if taken in excess, as a strategy to aid sleep/reduce pain or distress, it may act as a depressant i.e. causing a low mood. Illicit drugs such as cannabis have been reported as helpful in reducing muscle spasms and enhancing pain relief; cannabis is currently being trialled in the UK for use in MS patients.
9. Psychological: often people with arachnoiditis are reluctant to admit to emotional distress because they have been labeled as having a psychosomatic illness in the past; however, psychological difficulties are only to be expected in a debilitating, incurable illness. Often complex psychological situations may arise, particularly with regard to the causative factors (being mostly iatrogenic): anger and bitterness can be very strong and persistent, often being fuelled by day-to-day frustrations over loss of function, relationship troubles (as with any chronic illness, considerable strain is put upon partners and family) and fear for the future. Individual counseling, couples, or group therapy may help address issues on grief (over loss of health, role, financial security, self-esteem etc.etc.) In addition, patients can be instructed on strategies for self-help in learning to cope with ongoing illness and pain; these include Cognitive Behavior Therapy, which can be very helpful
10. Support groups: groups are invaluable in allowing sufferers to be in direct contact with others who are going through the same sort of troubles. This contact helps to reduce the strong sense of isolation which is extremely prevalent in people with chronic illness.
11. Information: the Internet can be a very useful resource, but it must be remembered that not all the information is from reliable sources; one should always check that material uses reputable (and verifiable) references. Support groups can be sources of useful information on the condition and other issues regarding the day-to-day effects of the illness on various aspects of life.
12. Aids: ranging from simple measures such as pads to place in shoes to make walking more comfortable to wheelchairs; these can really help in daily life.
MEDICATION:^ Top The majority of sufferers need to use a variety of medication in an attempt to reduce the pain.
The survey results showed the following as regards treatment regimes and in most cases, polypharmacy( a cocktail of drugs) is necessary:
Ø OPIATES (e.g. Morphine, Pethidine (Demerol), Methadone, Tramadol etc.): 171=54% (note: Buprenorphine: Temgesic is a partial opiate agonist: and partial antagonist; this means that it may give rise to withdrawal symptoms in patients who have previously taken strong opiate drugs)
Ø ANTI-INFLAMMATORY (e.g. Brufen, Mobic, Naproxen, Vioxx etc.): 144=45%
Ø ANTIDEPRESSANT (commonest amitriptyline; also Prozac etc): 90=28%
Ø ANTICONVULSANT (e.g. Tegretol; Neurontin; Vigabatrin): 84=26%
Ø MUSCLE RELAXANT: (e.g. Baclofen; Robaxin; Dantrolene; Zanaflex): 34=11%
Ø BENZODIAZEPINE (e.g. Diazepam, Clonazepam, Nitrazepam, etc.): 39=12%
Ø DIURETICS (for fluid retention): 17=5%
Ø INA (intraspinal narcotic agents= "the pump"): 8=2% incl. CLONIDINE: 2
Ø SCS (spinal cord stimulator): 2
Ø STEROIDS: 4 (1 via portal implant)
Ø QUININE (for muscle cramps): 3
Ø OXYBUTININ (for bladder muscle instability): 1
Ø BETHANECOL (for urinary retention): 1
Ø ETIDRONATE (for prevention of bone loss in osteoporosis): 1
Ø NONE: 10=3% PARACETAMOL/ASPIRIN ONLY: 4
Ø 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 sub-therapeutic 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.
Naturally, high doses of these drugs may cause significant adverse effects such as sedation, cognitive impairment, nausea and vomiting, fluid retention etc.
PROGNOSIS:^ Top The outlook for patients with arachnoiditis is unfortunately as yet unknown. There has only really been one medical article written about this, published in the late 80s by Guyer. He contends that on average, life expectancy may be shortened by as much as 12 years. Arachnoiditis, as discussed above, is as yet incurable.
There is considerable controversy over whether it is a progressive condition. In the majority of patients, there may be a gradual decline over a period of years with increasing pain levels and some loss of function. Some people seem to reach a plateau and remain stable. Those who can stay off strong medication and are able to maintain a reasonably active lifestyle seem to do best. In a small minority, a quite minor injury from a fall or car accident can trigger rapid decline.
A few patients go on to develop complications such as arachnoid cysts (encapsulated fluid collections around the spine or in the brain), syringomyelia (fluid-filled cavity in the spinal cord) or hydrocephalus (enlarged ventricles in the brain). Other complicating conditions include: depression, osteoporosis (due to lack of mobility).
By and large, though, there are AA patients who have had the condition for up to 20 years and are still able to be relatively independent and reasonably mobile.
AA is not directly fatal. However, there have been cases of suicide due to the despair of unrelieved pain.
One of the most tragic losses experienced by arachnoiditis patients is hope for the future. Most see a bleak and pain-filled existence centred around an unrelenting illness. However, we must never lose sight of hope: as Bernie Siegel wrote:
“ Hope isn’t statistical, and individuals recover. There will always be a first person to recover from every disease…..there is no false hope. False hope tends to be a recital of statistics, and people are not statistics. But there is false no hope.”
What better note to end on than to quote Dr. Goodling, from Duke University, who said:
“It’s so important for people who are hurting to know that the story hasn’t been finished. Things are terrible now, but there’s more to the story.”