A Personal Decision

On September 19, 2016 I had a dorsal column stimulator implanted. This decision was not made lightly as any invasive procedures are not recommended due to risk and
possibly progressing arachnoiditis.

I prayed and asked God that if this was his will to open doors and to help me. I needed help with the cost and finding a surgeon that I would be able to trust and who understood arachnoiditis. I needed comfort in my decision.

As an advocate, we advise others to not have anymore invasive procedures and what could happen. We help educate them on what arachnoiditis is and how you can get it and ways to help with pain besides relying solely on narcotic pain medications. We offer support to others who may not feel they that they can live like this and feel abandoned by family, friends and especially the medical community.

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Would this make me a hypocrite in my efforts to help others? In answering this question I realized that NO, I would not. What works for one may not work for another. Something not advised due to risk does not mean that you can not make that decision to do it. What I tell others is that even though this or any invasive procedure is not advised it has to be their own personal decision. Will they be able to live life still if the worse was to happen. In my case, my quality of life was very low. Most days were spent in bed. I was completely withdrawn from others and even avoided them. My family still needed to live life and they were having to live life as father and children without a wife and mother involved.

Since having this procedure I have been able to get out of bed almost everyday. I have been able to stand up more than just a couple of minutes. Am I pain-free? NO! I do have less pain and even though I am not running a marathon I will say that some quality of life is better than no quality of life.

I am still healing from this procedure and I have to still work out the right programming during this healing time as scar tissue starts to form. I had the Boston Scientific Precision Spectra using paddles. Paddles take longer to heal due to having a laminectomy to remove bone to place the paddle in my epidural space.

The results that I have at this very early stage I can honestly say that I am glad I made this decision for myself. I thank God that he made a way for me to be able to get some relief and kept me safe during surgery without any complications. For helping me in choosing a neurosurgeon that was compassionate and competent. A surgeon who let it be known his trust in God and whose words before surgery was, “We will treat you like family and I will be there when you awake”.

My final thoughts on spinal cord stimulation for arachnoiditis is that it does have to be a persons own decision without pressure from another person or source. there are serious risk and you have to be able to live with your decision if the procedure does not go as planned. I do not promote any procedure or product.

 

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July 2016 Arachnoiditis Awareness Month 

Constant Pain – Finding God In All Things

Constant Pain – Finding God In All Things

So how can we approach suffering from a spiritual standpoint?

Well, we need to free ourselves of some illusions: become “disillusioned’ without becoming disenfranchised.

Illusions:

    • We are masters of our own destiny
    • Fate determines what happens
    • A “just” God would never allow suffering of innocent people
    • Suffering is deserved punishment
    • Suffering ennobles us
    • God has forsaken us
    • Acceptance = “giving in”
    • We have a right to be pain free
    • People should always make allowances for our illness
    • Disabled = unable
    • Invalid = In-valid
    • Suffering is unmitigated disaster
    • Why should we think about others who are worse off: it diminishes o
      ur pain.

The letters of St. Paul contain a number of references to suffering. In th
e second letter to the Corinthians, he wrote that God comforts and strengthens us in our hardships and trials and that He does this in order for us to help others in turn, so that we can pass on sympathy and understanding, help and comfort to them.

As it says in the Book of Revelation 21:4

“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning nor crying nor pain any more, for the former things have passed away.”

There are numerous promises in the Bible, which relate to the temporary nature of our present life, full of suffering, set against the eternal bliss to which we shall be raised:

“and the God of all grace, who called you to His eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.” 1 Peter 5:10

“These troubles and sufferings of ours are, after all, quite small and won’t last very long…the troubles will soon be over, but the joys to come will last forever.” 2 Corinthians 4:17-18

Yet these are not very comforting to many, to whom the constant pain in this life seems never-ending.

Those of us, however, who hold steadfast to our faith in God, may find it helps to recall Christ’s suffering and to remember that our life now is only a shadow of the life to come.

I am reminded of a butterfly struggling to be set from its cocoon. In order to emerge successfully and be transformed from earthbound caterpillar to free-flying beautiful butterfly, it needs the struggle to set free its folded wings and to shake the circulation into them to bring them to life.

Suffering doesn’t necessarily have to be a bad thing. It can help us grow and mature in ways we can’t even imagine. It can give us realizations about life which otherwise would be difficult to acquire. I’m not suggesting we go out and look for suffering. Rest assured, it will find its way into our life.
Difficulties teach us patience, tolerance, acceptance, and ultimately that we’re not in complete control of our lives. We can do everything perfectly and things might still not go our way.
While undergoing a difficulty one may not be able to fully understand how this is supposed to be beneficial. As Steve Jobs said in his commencement speech, “You can only connect the dots looking back”.
There is a natural tendency for most to reach out to God during difficult times. These opportunities provide the soul, which is stuck in a material body, to again reach out to God and rekindle that relationship. The help will definitely come, but not always in the ways we expect it to.
Pride becomes humbled. A question was asked in a support group , “What is one thing that Arachnoiditis has taught you?”
The overwhelming response was that it taught them to be humble. It taught some to be thankful even for the very small things in this life. My response was that it did teach me, even to some extent force me to become humble and to be more thankful. It taught me also to put all my faith in God without doubt. It helped me grow in my relationship with God.

What Can You Do When God Won’t Heal You?

 

A Place of Healing

It’s natural to desire healing when you’re suffering from any illness or injury. The pain and frustration of not having a healthy body can be intense. So you pray for relief. You believe that God can heal you if He chooses to, as He does for others sometimes. But what if no healing comes your way? Does that mean you don’t have enough faith to be healed?

Don’t assume so. Many people with great faith never receive the healing they hope God will give them. Instead, God chooses to keep them physically afflicted to accomplish a greater purpose for them and those who care for them. If you’ve prayed for physical healing but haven’t gotten better, you can always keep asking God to heal you, if it’s His will, at the right time. But you can do much more – even if you never experience healing. Here’s what you can do when God chooses not to heal you:
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Accept the pain and embrace God through it. Don’t fight against this pain that God allowed into your life. Instead, accept it and ask God to give you the strength to go through it, the grace to benefit from it, and the devotion to thank Him for His love for you in all circumstances. Keep in mind that, when you reach out for God, He’ll meet you wherever you are and embrace you.

Break free of shame. Don’t let people make you feel bad about yourself because they think your illness or injury is a result of a lack of faith on your part. Rest assured that only God really knows how much faith you have, so other people’s judgments shouldn’t matter to you. Acknowledge the reality that God reserves the right to heal you or not, as He sees fit – no matter how much faith you have. Express your faith by praying for healing and then trusting God to respond however and whenever He chooses, according to what He knows is best. A person who can trust God to do what’s best rather than trying to manipulate Him is someone who does have faith.

Ask God to make His desires your desires. Pray for God to replace your self-centered desires with His own desires for your life, which will result in greater good. As a result, you’ll experience peace even when you’re suffering.

Discover the benefits of your suffering. Suffering can: turn you away from a dangerous path of sin that you would have headed down otherwise, remind you that your strength lies in the fact that God meets you in your weakness and empowers you, restore beautiful purity to your soul that you’ve lost while living in this fallen world, increase your thirst for Jesus alone to satisfy your longings, and increase the amount of good that you can contribute to God’s kingdom.

Gain the strength to go on. Even when your suffering doesn’t end, you can go on because God is with you every step of the way. Trust in His promises that He knows what you’re going through, and that He cares. Keep in mind that God can use broken instruments like unhealthy bodies to make incomparable music. Ask the Holy Spirit to renew your mind each day so you can think encouraging thoughts that will help you go on. Remember that everything you choose to say and do has eternal consequences in the battles going on right now in the spiritual realm – so choose faithful words and actions while you’re suffering.

Use your pain to bring God glory. While your illness or injury limits you, there’s no limit to the amount of glory you can bring to God by choosing to trust Him in the middle of your pain. Live with gratitude for what each moment brings, acknowledging that every breath you breathe is a gift from God. Ask God to teach you whatever He wants you to learn through the suffering you’re going through. Be humble and filled with childlike wonder about the world God has made and all you can continue to learn in it. Be eager to serve God wholeheartedly however He leads you to do so. Keep taking risks to keep going on adventures that God leads you to take.

Regain the right perspective on your circumstances when you become discouraged. Pray for encouragement whenever you need it, and God will give it to you. Refuse to focus on your fears. Instead, focus on God’s constant presence with you and His promises to help you through any situation you face. Rather than dwelling on your own problems, learn more about how some other people are suffering and reach out beyond yourself to help them. Sing songs that praise God for His wonderful qualities that remain constant even when circumstances change. As you choose to act in faithful ways, you’ll be able to view your situation as God sees it, and you’ll experience the peace you need.

Find ultimate healing. Look forward to enjoying heaven, where you’ll never suffer any physical problems again – and even better, where you’ll never be weighed down by sin again.

Help others who are hurting. As a Christian, you’re connected to your fellow believers in such a close way that your suffering is their suffering and their suffering is yours. Ask God to empower you to help carry the burdens of other believers you know who are in images (21)pain. Intercede for them in prayer, and meet whatever practical needs they have as God leads you.

 

 

Resource:

The above is a report on the practical applications of Joni Eareckson Tada‘s new book, A Place of Healing: Wrestling with the Mysteries of Suffering, Pain, and God’s Sovereignty(David C. Cook Publishing, 2010).

 

THE INFLAMMATORY NATURE OF ADHESIVE ARACHNOIDITIS

 

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Arachnoiditis is chronic inflammation of the arachnoid layer of the meninges which consists of trabeculae, a mesh of interwoven collagen fibrils resembling tissue paper. These secrete spinal fluid, which circulates through the cerebrospinal axis and is absorbed through the arachnoid villi in the brain.

The initial phase of the inflammatory process involves influx of white blood cells in response to an insult to the subarachnoid space, such as blood (trauma, surgery), foreign substance (dye, etc) or infectious agent (e.g. meningitis). This is initiated via the action of cytokines, (proteins that act as immune modulators). There is infiltration by macrophages and mesenchymal cells; the latter transform into fibroblasts, which make collagen (scar tissue).

Usually the fibrinolytic process, which breaks down excess scar tissue, limits this, but in arachnoiditis the scar tissue continues to form.

Authors such as Jayson have suggested that there may be a defect in the fibrinolytic pathway.

The neurosurgeon Mayfield, through his research in the 1980s, felt that there might be an immune response that is responsible for the degree of reaction, especially to chemical insult. Frank et al cultured arachnoidal cells in vitro and demonstrated their immune capabilities.

Anecdotal evidence suggests that a number of patients with arachnoiditis also have autoimmune type symptoms and/or a diagnosed coexisting autoimmune disorder such as Sjogren’s syndrome, Rheumatoid Arthritis, Systemic Lupus Erythematosus. These conditions are known to be associated with vasculitic neuropathies.

Also, Rheumatoid arthritis and various other connective tissue diseases show features of fibrosis

It therefore seems reasonable to hypothesise that arachnoiditis may be an autoimmune condition, possibly involving antibodies that affect the fibrinolytic pathway, such as anti plasminogen antibodies (seen in Rheumatoid Arthritis), in response to an insult to the arachnoid meninges, especially when that insult is chemical in nature.

There have been several papers recently discussing the possible role of previous viral infections, particularly Epstein-Barr virus (EBV) in the aetiology of autoimmune disorders such as Sjogren’s syndrome, and Systemic Lupus Erythomatosus. Many patients with arachnoiditis have had previous viral infections, including EBV and Cytomegalovirus (CMV). It is possible that this has some significance in the development of an autoimmune component to arachnoiditis, which could account for the degree of severity of the condition in that group of patients.

MacDonald noted that 18% of the general population carry a factor in the blood (Histamine Release Factor HRF) which causes a dramatically potentiated, sustained autoimmune reaction to foreign substance in the people who carry this factor. As this factor may be implicated in autoimmune responses, this may be relevant in explaining why there is only a minority of patients with arachnoiditis who develop the condition to a clinically significant degree.

PATHOLOGY
In the first stage the spinal nerves areimages (3) inflamed (radiculitis) and the adjacent blood vessels distended (hyperaemia). The subarachnoid space disappears. Deposition of collagen fibrils (scar tissue) begins. In thesecond stage, (arachnoiditis) the scar tissue
increases, and the nerves become adherent to each other and the dura. The third stage, (adhesive arachnoiditis), involves complete encapsulation of the nerve roots. The subsequent compression causes them to atrophy. The scarring prevents the arachnoid from producing spinal fluid in that area. These stages were described by Burton in 1978.

In some cases, the scar tissue calcifies (arachnoiditis ossificans).

Benini and Blanco described arachnoiditis as “cystic and adhesive in nature”. The cysts are collections of spinal fluid walled off by the meningeal adhesions. Arachnoid cysts are seen in some cases, especially if there is a foreign body present. They are particularly seen after Pantopaque myelography.

An animal study showed that there was proliferation of fibrous tissue, lymphocyte infiltration and that the pial blood vessels were obliterated. In the spinal cord adjacent, there were multiple small areas of demyelination. Cavitation of the cord was observed in areas where there was ischaemia (poor blood supply). Syringomyelia (cavity) is a complication of arachnoiditis, probably arising due to the pressure dissociation between the subarachnoid space and the central canal. It must be stressed that it does not occur in all cases of arachnoiditis.

A further, uncommon, complication is communicating hydrocephalus. This is thought to be due to alterations in the cerebrospinal fluid dynamics, due to the effects of the scarring in the subarachnoid space.

Arachnoiditis may, in a minority of cases, involve the brain as well as the spinal cord.
There are also subdivisions of the condition called rhinosinugenic arachnoiditis and optochiasmatic arachnoiditis, which are rare forms principally affecting the brain.

THE IATROGENIC ASPECT OF ADHESIVE ARACHNOIDITIS
PROGNOSIS
Arachnoiditis has been described as an insidious disease that is incurable. Guyer’s paper on the prognosis of arachnoiditis suggests that there tends to be a spectrum of the course of the disease, which varies from mild and nonprogressive, to a fulminating progression that may cause paralysis and even death. Wilkinson  believes that progression after the first 24 months is unlikely to be due to the disease process alone. Most authors state that its onset may be years after the precipitating cause.

In general, arachnoiditis presents a highly variable clinical picture, with a fluctuating course. Some patients seem to reach a “plateau” and stabilise without further deterioration, whereas there is a group of patients who develop a relatively rapid progressive deterioration (within a matter of months) during which they tend to lose function in the affected limb(s).

THE SYNDROMIC NATURE OF SYMPTOMS IN ADHESIVE ARACHNOIDITIS
Adhesive arachnoiditis presents with diverse symptoms, which may relate to problems outside the CNS, and could therefore be described as a syndromic picture. However, bearing in mind that the treatments used for the neurological symptoms may cause a variety of side-effects, it is difficult to say exactly which symptoms can be directly and solely ascribed to arachnoiditis and which are more complex in origin.
The medical literature mostly describes symptoms in the lower back and or legs, with pain, weakness and sensory loss. Some authors also discuss bladder and sexual dysfunction. Jenik et al described the symptoms as “predominantly syringomyelic sensory deficits”.
A recent symptom survey amongst the support group COFWA (Circle of friends with Arachnoiditis) involving 66 members, has shown that there are a wide variety of symptoms.
This section of the article will attempt to clarify the range of symptoms that may be experienced in arachnoiditis. It must, however, be stressed that many people with arachnoiditis will not have some of these symptoms, especially the uncommon ones.
The predominant and most distressing symptom of arachnoiditis is chronic, persistent pain which is primarily neurogenic (nerve generated) and thus difficult to treat.
This pain is transmitted from the dorsal root ganglia (DRG) in the spinal cord. In contrast with normal DRG, inflamed DRGs produce sustained pain impulse from any mild stimulus such as body movements or even breathing.
Pain tends to increase with activity. There is may be a delay after onset of activity, with a slow summation, to a point where the pain suddenly becomes unbearable and then persists once the activity has ceased. This can make it difficult for patients and physicians or physiotherapists to assess what is the tolerable level of exercise.
Pain may be due to other factors besides nerve damage. These include musculoskeletal secondary to disuse, overuse or compensatory use of muscle groups, due to alteration of spine dynamics. There may also be muscle tension due to being in pain, or increased muscle tone (spasticity) caused by nerve damage. Joint pain may be due to similar factors, or may be part of the autoimmune picture.
Many patients suffer from burning feet, in particular. The majority of patients also have transient shooting pains that may vary in intensity from an insect bite to an electric shock.
Another problem may be an enhanced response to painful stimuli. This is called hyperpathia and may lead doctors to conclude that the patient has a low pain threshold. In fact, there is not a lowered threshold, rather a raised one, but once it is reached the response is magnified. This is called “delay with overshoot”. This is particularly noticeable in “visceral hyperpathia” in which normal bladder and bowel sensation is diminished, but once the signals of fullness are perceived, there is burning pain and urgency. This can lead to embarrassing accidents, especially if there is also nerve damage to bladder or bowel causing overactivity or sphincter dysfunction.
The areas commonly affected by pain are:
  • In most cases: lumbar, buttocks, legs (often both), feet, perineum, hip, abdomen.
  • In some cases: arms and hands, neck, head and face, chest.
Tingling and numbness are common features. Other sensory symptoms include loss of proprioception (sense of limb position up or down in relation to ground). This can result in tripping and falls. Temperature perception is sometimes diminished. There may also be bizarre sensations such as feeling as if you are walking on broken glass, water running down the legs, or insects crawling over the skin. These can be very distressing and many patients are reluctant to admit them to their doctor. A minority of patients may suffer from tinnitus and/or vertigo. Vertigo of cervical origin has been described in one paper, with features of ataxia (unsteady gait).
Motor nerve damage may cause loss of muscle strength, especially in the lower back and legs, in some patients. In most cases with weakness, it is mild, but it may progress sufficiently in some patients to necessitate use of walking aids or even a wheelchair.
Also, many patients report that they fatigue quickly. There may be compensatory overuse of some muscle groups to allow the patient to walk, but this leads to the muscle fatiguing more rapidly than normal. This is similar to the picture seen in PostPolio Syndrome (PPS).
Increase in muscle tone is quite a common feature and makes the legs stiff, which may have an effect on mobility.
Muscle spasms and cramps may be violent and painful. Muscle twitches (fasciculations) are usually painless and transient.
A number of patients complain of symptoms suggestive of Restless Legs Syndrome, with nocturnal unpleasant sensations in the legs, accompanied by motor restlessness.
Less commonly there may be trouble swallowing, sometimes due to oesophageal muscle spasms.
A common component of the arachnoiditis syndrome is the effect on the autonomic nervous system. (responsible for regulating involuntary processes such as blood pressure and temperature, bladder and bowel function etc.)
Disturbance of this system occurs because the nerves involved run along the spinal cord in the “sympathetic and parasympathetic chains”(thoracolumbar and craniosacral respectively).
Bowsher’s paper  on central pain describes how most patients with central pain develop “autonomic instability”, referring to increase of pain by physical and emotional stress, with cutaneous blood flow and sweating also being affected.
Ziegler et al describe how systemic diseases such as diabetes can cause peripheral sympathetic neuropathy, giving rise to postural hypotension, heat intolerance etc. They
also maintain that patients with diseases of the sympathetic nervous system demonstrate marked abnormal stress responses to minor stresses such as change of posture or ambient temperature.
Principal symptoms of autonomic dysfunction include:
Bladder, bowel and sexual dysfunction. These are often very distressing to patients.
Neurogenic bladder dysfunction may cause difficulty initiating urination and emptying the bladder, or hyperactive detrusor with sphincter disturbance causing incontinence. If the bladder is incompletely emptied (leaving a residual volume) there is a risk of recurrent urine infection. Detrusor hyperactivity can give rise to high bladder pressures and possible reflux of urine to the kidneys, with a risk of hydronephrosis. Either problem may be exacerbated by decreased bladder sensation, which may lead to overflow incontinence, especially if there is an element of visceral hyperpathia. There may also be nocturia. Drugs such as antidepressants (e.g. amitriptyline) may worsen bladder dysfunction, causing difficulty in initiating micturition and emptying the bladder.
Bowel function may also be affected. Constipation due to drug treatment (especially opiates) and decreased mobility may complicate the picture.
Dyspepsia and intermittent vomiting are relatively uncommon problems. They may be due to gastroparesis (delayed gastric emptying) similar to that seen in diabetic autonomic neuropathy. Symptoms of gastroparesis include postprandial nausea, epigastric pain/burning, bloating, anorexia and vomiting. There may be vomiting of undigested food in the middle of the night or in the morning prior to eating breakfast.
Sexual dysfunction may affect potency and ejaculation in men, as well as causing problems with orgasm in both sexes.
Blood pressure disturbance (high, low or fluctuating); this may cause dizziness, syncope, or headaches. Orthostatic (postural) hypotension may occur. Mathias  describes how in chronic autonomic dysfunction, pressor stimuli such as mental arithmetic, isometric exercise and cold, do not result in the normal increase in blood pressure. Also, stimuli such as food ingestion, which would normally activate the sympathetic system to maintain blood pressure, tend to actually cause marked hypotension.
Khurana discussed cases with chronic cervical myelopathy who responded to orthostatic challenge with hypotension, followed by hyperhidrosis (excess sweating), hypertension and chills.
Very rarely, there may be autonomic dysreflexia as seen in spinal cord injuries, with paroxysmal hypertension due to excess sympathetic activity reflexly activated by bladder or bowel distension, as described by various authors.
Other cardiovascular symptoms include palpitations.
Cold extremities (Raynaud’s type phenomenon) are a common vasomotor problem. (Note: Raynaud’s is also seen in autoimmune disorders such as lupus:)
Sudomotor effects of hyperhidrosis or anhydrosis (increased or absent sweating) may impact on temperature regulation, which is a common problem. Hyperhidrosis may be compensatory for loss of sweating in another area, or may be the initial phase before progression to anhydrosis.
An uncommon problem may be facial pain, loss of sweating on one side of the face and change in size of one pupil (Horner’s syndrome). There are also isolated reports of Adie’s tonic pupil.
The following group of symptoms is reflective of the inflammatory nature of the condition and may point to an autoimmune component:
Most arachnoiditis sufferers experience a fluctuating course of symptoms, with intermittent “flare-ups” and periods of relative remission.
Some sufferers have intermittent low-grade fevers, malaise and raised ESR (SED) and/or white cell count. These laboratory indices are both indicative of a nonspecific inflammatory process. Auld  mentions fever and chills as part of the syndrome of chronic spinal arachnoiditis.
They may also have lymphadenopathy (enlarged lymph glands).
A common feature is skin rash, often unexplained. Often this is urticarial (hives) or there may be angio-oedema, both suggestive of an allergic-type reaction. A few patients develop photosensitivity, but this may be related to medication.
Joint pains are also common, not just in weight bearing joints, but also small joints. Rarely, there may be neurogenic arthropathy (Charcot joint), due to loss of sensation around the joint. (This is also seen in peripheral neuropathies such as diabetic neuropathy.)
A number of patients complain of dry eyes and mouth (as seen in Sjogren’s syndrome) but this is likely to be due to side effects of medication in most cases.
Other eye problems include iritis and uveitis, both inflammatory conditions seen also in association with autoimmune diseases.
It is likely that the features of myofascial pain and malaise are part of the arachnoiditis syndrome itself rather than a separate condition.
A minority of patients also has a diagnosis of an autoimmune disease in conjunction with their diagnosis of arachnoiditis. These include Systemic Lupus Erythematosus, Sjogren’s syndrome, Thyroiditis, Sweet’s syndrome, Rheumatoid Arthritis, Primary Biliary Cirrhosis and Crohn’s disease. This is an area for further investigation.
It is also apparent that a small number of sufferers develop multiple drug allergies, which is also seen in autoimmune conditions such as lupus.
Miscellaneous problems such as osteoporosis (c.f. in RSD, or due to decreased mobility) low potassium (possibly due to medication), chest pain mimicking angina, recurrent sinusitis, dyspnoea (shortness of breath) are seen in a few patients.
Eye problems (see autoimmune symptoms) seem to be quite common, with patients who have undergone myelography complaining of photoaversion (intolerance of bright light). Some patients describe stabbing pains or tingling and seeing “stars”. There is an increased incidence of migrainous type headaches, often with auras. It should be noted that there is an association between photoaversion and anticonvulsant treatment, particularly phenytoin and carbamazepine.
Recurrent dental problems are quite common. Many patients undergo repeated root canal procedures but continue to suffer from facial pain and odontalgia (tooth pain) without attributable dental pathology. A number of patients also suffer from bleeding gums (periodontal disease) and a few have “burning mouth syndrome”. It is possible that some of these problems are related to medications that cause dry mouth, the lack of saliva contributing to reduced protection against infection and caries. The burning mouth symptoms could have a neuropathic component.
Dysphagia (difficulty swallowing) may affect some patients, especially those who have cervical pathology. In particular, this may occur if there is arachnoiditis accompanied by degenerative changes such as anterior osteophytes (bony outgrowths). However, it may also be experienced by those with only lumbar pathology, though the reasons are unclear.
Pharyngeal symptoms may include feeling as if a lump is stuck in the throat, and this may be dismissed by some clinicians as “globus hystericus”, a psychosomatic complaint.
Fatigue is a very common complaint, and can be due to a variety of factors.
Weight gain is a common problem. This is largely to do with decreased mobility and possibly to fluid retention secondary to medication (from drugs such as: Amitriptyline, Gabapentin, Ibuprofen, Morphine and other opiates, prednisolone/methylprednisolone).
Alternatively, some patients may suffer weight loss, due to general debility and often, poor appetite.
The cognitive effects of arachnoiditis are anxiety and reduced ability to think clearly, with some short-term memory impairment. These are usually in direct proportion to the pain level being experienced.
Sleep disturbance is common, and usually directly related to pain. It may contribute to depression, which is an understandable reaction to intractable pain, loss of function, loss of role and job, financial and relationship problems as seen in other chronic, debilitating conditions. Fear for the future (prognosis cannot be predicted) and uncertainty about the diagnosis substantially increase this problem.
Many sufferers are reluctant to admit to depression, as they fear that their more unusual symptoms may be more readily dismissed by doctors as a product of their mental state.
DIFFERENTIAL DIAGNOSIS
Essentially, this involves excluding other causes of FBSS, such as recurrent disc herniation, disc fragments, stenosis, spondylosis or epidural fibrosis.
However, other causes of polyneuropathy should also be considered, especially those of an autoimmune origin.
It is interesting to note that a number of patients have a dual diagnosis of arachnoiditis and Multiple Sclerosis (MS). This is presumably due to some similarities between the two conditions.
Fibromyalgic symptoms are likely to be part of the arachnoiditis syndrome, as opposed to being due to a separate disease entity.
LOOKING TO THE FUTURE
Dr. Charles Burton has called arachnoiditis a “scientific orphan”. As yet, systematic, coordinated research is lacking.
Areas for future research include:
1.Autoimmune aspects
   Aetiology (causes)
   Pathology (disease process)
   Possible treatments
2.Developments in treatment of neuropathic pain
Other projects include:
  • Raising public and medical awareness of the syndromic nature of arachnoiditis and of the adverse effects of various types of invasive procedures.
  • Working towards a collaborative approach amongst specialists such as neurologists, neurosurgeons, orthopaedic surgeons, immunologists, physiotherapists, and sufferers, to further understanding of this debilitating condition.
Dr. Sarah Smith MB BS, Patron of the Arachnoiditis Trust.
March 1999.
APPENDIX I: AUTOIMMUNE ASPECTS
MacDonald noted that 18% of the general population carry a factor in the blood (Histamine Release Factor HRF) which causes a dramatically potentiated, sustained autoimmune reaction to foreign substance in the people who carry this factor. As this factor may be implicated in autoimmune responses, this may be relevant in explaining why there is only a minority of patients with arachnoiditis who develop the condition to a clinically significant degree.
There seems, from anecdotal evidence, to be a significant proportion of arachnoiditis patients who have autoimmune problems.
Vasculitic neuropathies are seen in Rheumatoid Arthritis, Sjogren’s, Behcet’s syndrome and Systemic Lupus Erythomatosus. The commonest disorder that seems to be diagnosed concurrently with arachnoiditis is Sjogren’s syndrome. Various authors describe neurological aspects of this disorder, although there has been no direct reference to a link with arachnoiditis, however, there are similar clinical features between the two conditions.  Kumazawa et al attribute the chronic sensory neuropathy occasionally seen in Sjogren’s to dorsal root ganglionitis with T-cell invasion. They also describe autonomic dysfunction in Sjogren’s syndrome.
Nitsche et al suggest that neurological features are seen frequently in overlap syndrome (a clinical picture of multiple coexistent autoimmune disorders, also known as Mixed Connective Tissue Disease MCTD), and that occasionally a demyelinating type
picture of central nervous system involvement may be seen. It is possible that arachnoiditis is part of the clinical spectrum of MCTD.
Tesavibul suggests that there are subsets of Multiple Autoimmune Syndrome (MAS) and of particular interest is his proposed Type 2, which includes Sjogren’s syndrome, Rheumatoid arthritis, Primary Biliary Cirrhosis, Scleroderma and Autoimmune thyroid disease. (There are isolated cases of each of these disorders seen in patients with arachnoiditis).
There is also a recognised, albeit rare, association between the chronic inflammatory condition, sarcoidosis, and arachnoiditis. Sarcoidosis is a multisystem, chronic granulomatous (a specific type of chronic inflammatory) disorder, which involves an abnormal immune response. The exact source of this reaction is as yet unknown. A study by Sharma showed 24% of neurosarcoidosis cases had meningeal involvement.
Marinac noted that there appears to be an association between the occurrence of hypersensitivity-type reactions in drug and chemical induced meningitis (an acute reaction) and underlying collagen vascular disease (known to be autoimmune).
It has been seen in conditions such as Rheumatoid Arthritis that there may be anti-plasminogen antibodies (plasminogen is part of the fibrinolytic pathway).
It may therefore be possible that arachnoiditis involves an autoimmune process that affects fibrinolysis.
A recent papers suggests that in arachnoiditis there is a similar process of inflammation to that seen in serous membranes such as the peritoneum, with “a negligible inflammatory cellular exudate and a prominent fibrinous exudate”. It is worth noting that the condition retroperitoneal fibrosis may be seen in association with rheumatoid arthritis.

 

APPENDIX II: SYRINGOMYELIA

The principle features are:
  • Headache- worsens with cough, sneeze, and strain.
  • Neckache
  • Pain in upper limbs, often exacerbated by valsalva manoeuvres, exertion or coughing.
  • Areas of dissociated sensory loss, which may be in a bizarre distribution over the trunk and upper limbs.
  • Loss of temperature sensation in upper limbs may lead to painless burns.
  • Loss of upper limb reflexes; positive Babinski reflex
  • Atrophy (wasting) of small muscles in the hands
  • Spastic paresis, gradually progressive, leading to difficulty in walking. (increased muscle tone and weakness)
  • Uncoordinated movements
  • Muscle spasms and fasciculations (twitches)
  • Skin rashes
  • Alteration in sweating
  • Raynaud’s phenomenon (cold, painful hands due to poor circulation)
  • Horner’s syndrome (see above), nystagmus.
  • Dysphagia (difficulty swallowing)
  • Dysphonia (abnormal voice)
  • Abnormal salivation.
(These symptoms are sometimes seen in uncomplicated arachnoiditis. Jenik et al (xxv) stated that spinal cord syndromes due to non-traumatic adhesive arachnoiditis cause “predominantly syringomyelic sensory deficits.”)
Later stages may affect bladder, bowel and sexual function.
  • Joint pains worse with straining.
  • Charcot Joints (neurogenic arthropathy= joint damage due to lack of protective sensation)
  • Symptoms may be unilateral or bilateral.
  • An uncommon finding is onset of electric shock sensation running up and down the spine when the head is flexed or extended, occasionally followed by syncope (passing out). This is known as Lhermitte’s phenomenon.
  • Some patients may show an increasing scoliosis (lateral curvature of the spine) which is thought to be due to unequal nerve supply to the paraspinal muscles.
Misdiagnoses have included:
  • Carpal tunnel syndrome (neurological symptoms resulting from compression of the median nerve at the wrist)
  • Ulnar nerve compression (ulnar nerve in the arm)
  • Cervical spondylosis (degenerative disease of the cervical spine).
  • Diagnosis is by MRI scan of the spine and EMG tests (electrical tests to detect muscle weakness)

ADDENDUM

It is no longer considered necessary to use a contrast agent in MRI scanning provided that the scan is T2 weighted, high resolution preferably with a stir cycle. Although this scan is considered the diagnostic test, it must however, be remembered that not all scans are sensitive enough to detect arachnoiditis, especially in the early stages. In any case, as regards MRI as a tool to assess the severity of the condition, it is comparable to using a chest X-ray to determine the heart rate and rhythm. Therefore, other tests such as Electromyograms (EMG) and nerve conduction studies (NCV) may be very useful in assessing the extent of nerve impairment.

Sarah Smith, MAY 2000.

If you have Arachnoiditis and looking for a support group feel free to send a member request on Facebook (Arachnoiditis Together We Fight)
REFERENCES
[1] Burton CV Spine 1978 Mar; 3(1): 24-30 Lumbosacral arachnoiditis
[2]Dr. Sarah Smith MB BS, Patron of the Arachnoiditis Trust.

March 1999
[3]www.burtonreport.com/
[4] http://www.theaword.org/index.php?option=com_content&view=article&id=506:the-inflammatory-nature&catid=96:the-article&Itemid=39
[5] https://www.causes.com/causes/335827-for-truthful-information-about-meningeal-pathologies-sacral-cysts-and-arachnoiditis/updates/436799-autoimmune-aspects-of-arachnoiditis
[6]http://circleofriends.org/
[7]https://books.google.com/books?id=qQO5CgAAQBAJ&pg=PA573&lpg=PA573&dq=Jayson+MI,+Keegan&source=bl&ots=ONqjVijYXj&sig=rzIirOdoOZqRsDr76bSNRRn_vLI&hl=en&sa=X&ved=0ahUKEwicwqPQnJvNAhVC5yYKHVXRACYQ6AEITzAI#v=onepage&q=Jayson%20MI%2C%20Keegan&f=falsehttp://

Social support groups provide mutual aid and self-help for people facing chronic disease, life-threatening illness and dependency issues. Before November 2013 I had never been a member nor participated in a support group. Life has a way of bringing change and life altering events that a person may find it difficult to face alone. I was in an auto accident that involved a fatality. I also had to undergo a back surgery. I was having pain that I should not have continued to have. I was having quite a lot of complications and later found out that I now have Chronic Adhesive Arachnoiditis. I have never heard of it and it seemed no one around understood because even though the prevalence of this condition is rising quickly due to the rise in spinal surgeries and invasive procedures this condition is currently listed with NORD. (National Organization for Rare Disorders) The Pain is compared to stage four cancer without the release of death.

I started online, looking for others that may have this and found that on social media there were several support groups. I joined and found out that this condition is not as rare as we are led to believe. Others were in pain. They were looking for pain relief ideas, help locating physicians to help them and education. They were just as I was at that time. I was feeling alone even though I have a wonderful support system at home they will never know this pain. I found these same people to be kind, supportive and very caring. When one member is in a crisis with pain, depression and suicidal tendencies these same people step up like family and are there for that person. Whether online in private chat and quite a lot of times over the phone.We pray for each other even though we know not everyone believe the same, offending is not an issue. We truly become FAMILY.

If you or a family member need to talk with others that may share the same conditions, depression, pain, loss, etc please let them know that there are online resources and support groups that are private and without being a member others can not see post, comments and any information in the group.

Members of a support group usually share their personal experiences and offer one another emotional comfort and moral support. They may also offer practical advice and tips to help you cope with your situation. Participants in online groups have access 24hrs a day, 7 days a week, at times most convenient to them.  Best of all it can be done in the privacy in your home while still in your pajamas.

Benefits of participating in support groups may include:                          Image result for support groups

  • Feeling less lonely, isolated or judged
  • Gaining a sense of empowerment and control
  • Improving your coping skills and sense of adjustment
  • Talking openly and honestly about your feelings
  • Reducing distress, depression, anxiety or fatigue
  • Developing a clearer understanding of what to expect with your situation
  • Getting practical advice or information about treatment options
  • Comparing notes about resources, such as doctors and alternative options

Listed below are some tips on participating in online support groups.

1. Take what you need, leave the rest.

Many people come into an online support group with their story, asking a specific question about treatment or other people’s experiences. Some people may reply with experiences of their own, or advice about what the “best” treatment is for a given condition. This is how online support groups work.

But some people may not agree with the advice given, and that’s perfectly okay. We’re a diverse culture living in a diverse world and we will not always agree. Some people spend a lot of time arguing about opinions or things that are secondary to why they joined the support group in the first place. Take the advice that makes sense to you, and leave the rest alone.

2. Stay somewhat anonymous.

This may not seem like the most obvious advice — after all, self-help support groups have a large social component. How are people supposed to get to know you if you remain anonymous, sharing little of your person life with others?

The key is to share the important stuff — your feelings, how doctors are treating you, what treatments are recommended, how your family is supporting you, etc. — and leave the unimportant stuff out (like where, exactly, you live; choose wisely who you give your phone number to.

3. Set your expectations.

An online support group isn’t going to magically cure your concern. Nor will you find it full only of caring, supportive individuals. Support groups mimic the diversity of the real world, meaning they will be full of people from all walks of life and often from very different backgrounds. Don’t assume that others experience things the same way you do — chances are they don’t.

Online support groups are best used as adjunct to some other kind of treatment. In mental health, that means that for most people, they should also be in psychotherapy or taking a psychiatric medication. You can also use a support group to test the waters to see if treatment is needed in your case.

As an addition to other treatment, an online support group is best used primarily for social and emotional support, and for exchanging information about treatments. People need such support when facing life-threatening health concerns or ongoing mental health concerns. It helps an individual feel like they are not alone.

4. Be respectful of other people.

This seems like a no-brainer, but I still see people snipe and be mean to one another in an online support group setting every day. Don’t put down or disparage other people’s experiences, advice or opinions. You can disagree with someone without making it personal. You can disagree with someone respectfully, too. It just sometimes takes us a moment to take a step back, catch our breath, and try and gain some perspective before responding.

For instance, it’s okay to correct misinformation you come across it in a support group online. But there’s a big difference between, “I can’t believe you posted that everyone who has had ___ has had zero side effects! That’s just a lie” and “From what I’ve read about ____ treatments, it seems that most people experience some memory loss, but it varies from person to person.”

5. Respond mindfully.

If people responded more mindfully in support groups online, I suspect people would generally get more out of them. Being mindful simply means taking a moment to stop, think about exactly what it is you’re feeling and thinking, acknowledge such feelings and thoughts, and then proceed with an appreciation for those thoughts and feelings. It’s a great way to stop anger in its tracks, and also a great way to focus on a person’s emotional message, rather than the technical specifics of a particular support group posting.

I look at mindfulness as a way of appreciating both the forest and the trees.

6. Don’t believe everything you read.

Related to #1 about taking what you need and leaving the rest, you shouldn’t believe everything you read in an online support group. While it’s been my experience that most people don’t relay misinformation nearly as much as professionals fear, it still happens once in awhile. When it does happen, it’s usually corrected by another group member in the same conversation thread.

But sometimes the misinformation comes in the form of an opinion, and therefore there may not be as easily recognized or corrected. When in doubt, check it out — Google is always just a click away.

7. Support groups aren’t for everyone.

Some people will try all of these tips when joining a support group and still don’t “get it” after giving it a try. Don’t be worried — support groups aren’t for everyone. Some people just don’t get much emotional support or feel “supported” in such groups. Some people view it as just a place to complain and don’t see how people are also trying to break out of old, unhealthy patterns. They aren’t right for everyone.

Support groups work best when you come into one with an understanding that different people are there for different reasons. Some will be more supportive than others, and that will come out in what they say or how they respond to you. That’s not a reflection on you, that’s a reflection on the diversity of people and their differing needs.Image result for support groups

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