But you don't look sick??? (You are not alone)

I don't look sick. I know that. But I also know something else very well; I'm a great pretender when I have to be.

I can take my dog for a walk, I can walk for a half hour, or more, but if you see me would you see my limp? Would you see it getting worse the longer I walk? Probably not. I'm pretty good at hiding it when I have too.

Could you see what I do for the rest of the day after I've driven to the Doctors, the Pharmacy, then home? Would you wonder why I drove my car to the store 5 mins away? I doubt it! 

Would you be there, a fly on the wall watching me go back to bed as soon as I got home? No...... no one see's that part of my life except for the safe circle of family. I can say the words, I can tell you it's rough, but can I let you or anyone else see it? No way........Not if I can help it!!! I'd rather hold onto my pride for now. 

There are so many things you will never see unless you somehow managed to creep into my safely enclosed circle. Perhaps then you could see my walker. The one I can't use right now due to nerve problems in my right arm. 

You might catch a glimpse of the small, dark red wicker basket overflowing with the medications I take daily. Some are there just to make sure I can move today, tomorrow, or  next week. They help me pretend everything is alright, while other medications are there to keep my body working properly i.e. Crestor for Cholesterol, B12 to manage my increasing deficiency, Lax-A-Day to make my bowels work because those nerves that control many functions no longer work on their own. S2- S5 needs a little help for now as I wait for them to wake up and realize there's no more pressure holding them down, choking them of life. 

There's more, I know it. I counted them the other day when I filled my little pill case.... 12 pills a day now. My see through AM/PM case holds little buttons, all colors of the rainbow. Next week they come pre-packaged to make sure I take what I have to take when I have to take them. The packaging makes sure I know I took them, and I'm not taking it again and doubling the dose. I;ve done that by mistake and believe me, with certain medications it's not fun!!

Gravol, actually motion sickness medications you can buy over the counter are much cheaper; 100 pills for less than $5.00! The things you can find out about when you're a regular at the Pharmacy. They help more when they know you and your story by name. Those little pink, anti-nausea pills are the powerful game changer. They're the only thing standing between a day in bed and a day of pretending I'm ok. We're still working on it, but more often than not even my meds aren't strong enough to let me pretend some days.  Those are the days, when you will not see me at all. I may not even answer the phone unless I know who you are, and what you may want. Chronic Pain can make a person do odd things.... but in some cases that's all you can do! Sometimes setting up and maintaining barriers and filters are the only way to still remain attached to the world outside as you wait for the pain medication to take effect, or take a nap at 1pm so I can go to the grocery store at 6pm.

My memory isn't the best. What could I blame that on? Medications? Pain levels? My B12 deficiency? Or perhaps my depression? Yes, you have depression when you live this life. What else could you feel? Thrilled? Happy? Not likely. What I feel is determined to make the best out of a really bad situation. Sometimes my determination gets choked in sadness, self pity or anger, but I always know that soon, later today, tomorrow or the day after, my determination will come back. I wouldn't have made it this far if it didn't.

When I have to go out, medications or not, I still drive, walk or sit. Yes I look totally normal, dressed nicely, well kept, at times, which is totally dependent on the days pain level. Just having my makeup done, hair washed and styled, feeling outwardly confident as my eyes take in my environment, which usually ends with me staring at the floor wondering how weird it would look for me to quietly slide down onto the floor in front of my chair and curl up like a newly born baby. I constantly crave any positions that can protect my right arm and lets it rest. Or maybe it's the nerve pain in my legs, hips and thighs as I wait for my nerves to regenerate from my surgery four months ago. If I'd listened to my Canadian Specialists I would even be able to say that.... "four months post op." For those words to be the truth and not in my imagination, or my dreams, is totally amazing and a miracle!! Those four words are so valuable to anyone with a symptomatic Tarlov Cyst.

If I'd listened to OHIP or Canadian Neurosurgeons, Orthopedic Surgeons and Physicians I'd still be laying in my bed wondering how long I have before I totally lose feeling in my legs. I'd still be worrying and wondering how long I had until I needed a catheter as a companion. My right foot already has limited reflex, my sense of hot and cold is still messed up. Most days I can't even wash my hair and styling it is definitely a chore saved specifically for special occasions.

No I don't look sick and neither do most of the other Tarlov Cyst patients I know. Why? Because we have no choice... no one will talk to us about our illness unless it's to to say, "It's in your head. Tarlov Cysts don't cause pain!" as they look at you like a hypochondriac conniving for narcotics to make life look better.

I hate admitting that I'm living a medical nightmare in Brampton, Ontario, Canada. We have public Health Care, but where's my Health Care?

Can you believe I haven't even gone to an emergency room once? Even when I had pneumonia, couldn't breathe and the ambulance showed up, compliments of TeleHealth, just to make sure I wasn't having a heart attack! Why? Because at the end of that 10 hour wait is a, "I'm sorry, but I don't see anything wrong, at least not anything I can help you with." No one here knows what to do, most  specialists will admit it, but the problem lays with the Specialists who say they could if it was warranted, and mine was warranted. 

Almost every referral my Physician and I tried came back with, "I'm sorry, but there's nothing I can add to this patients care." In the end I had to find someone who could say otherwise so I could have some hope. Thankfully I found that someone in Kansas City. Thankfully I had surgery in Nicosia, Cyprus on July 7th, 2011. 

I've had surgery for the largest of my four cysts and for that I will always be grateful. Grateful for everyone who played a role in making that happen for me, but I know I will never be happy and my soul will never heal until I can hear all of my Canadian Tarlov friends say those four magic words......  I'm "     #   months post-op!!!

Please help bring this torture into the light within Canada.... we are suffering now in silence, but we will be silent no more!! 

No one should lose their life, their hopes, their dreams or their future to a "spine bubble" that's just waiting to be popped.

I may not look sick, but believe me, my body knows I am.

How can a Neurosurgeon diagnose a symptomatic Tarlov Cyst from a distance?

I've been dealing with this question over and over in my battle for care and accountability, but somehow I've always managed to miss the opportunity to ask that question when the opportunity arose. Finally I've asked and below is the answer. 

I asked this question to Dr. Frank Feigenbaum, a specialist in diagnosing and treating symptomatic Tarlov Cysts. This is the answer I got in return from his dedicated and loyal surgical assistant Debbie West. Thank you Debbie for your time and commitment!


"Dr. Feigenbaum can diagnose a patient because he has the experience and knowledge to do so.  We go by the MRI and the patient's symptoms.  We can see the cysts and the nerve compression and if it correlates with the patient's description of signs and symptoms the diagnosis is made.  For all those critical audiences look at this way - a radiologist can look at an x-ray and diagnose a fractured bone.  They can also look at a brain MRI and diagnose a brain lesion.  They never see the patient!  

A very knowledgeable and experienced neurosurgeon can diagnose a multitude of issues before they even see the patient,  a brain hemorrhage on a CT, an aneurysm on an angiogram, a tumor on a brain MRI, a herniated disc on a MRI of the spine, a spinal fracture from trauma, etc. Need I say more?  Of course they will at some point see the patient before actually treating them." 

Debbie's response certainly makes sense to me. I hope this information helps some of you to feel more confident in reaching out for your diagnosis from a distance. 

Canadian Issues.... I love witnessing Canadian Courage!! (Click here for Sue's Blog)

I started this blog was with the hope of addressing specific failures of our Canadian Provincial and Federal institutions. 

Over time it's obviously taken on most of the major issues that are affecting me personally; more specifically Tarlov Cysts. I've addressed the symptoms, treatment options, lack of treatment options, lack of professional medical understanding, side effects and causes. 

I am very proud of what this blog has become and how this information has been reviewed by people from all over the world. 

To everyone out there... the readers from Malaysia, Korea, Switzerland, China, Argentina; I welcome you all and I hope that you have found something here that you can use. I do welcome you to email me and tell me about yourself and why you came to this site, over and over again. I would love to know you and how I can help you, perhaps with more specific information to your personal situation. Comments are always welcome and all emails will be responded too in a timely manner.



Even though this site may be more specific to Canadian realities, many of the issues are universally transferable. Unfortunately, the issues we Canadians face, are many of the same issues experienced in different parts of the world. Distance never breaks the bond of humanity. We are all human, we are all fragile beings and we are all capable of learning, advancing and fighting for what we need. As Marshall McLuhan said oh so long ago, we are indeed a Global Village. 


And I quote:

"Today, after more than a century of electric technology, we have extended our central nervous system itself in a global embrace, abolishing both space and time as far as our planet is concerned."

- Marshall McLuhan, Understanding Media, 1964.

 

I have added an additional link to the blog this morning.... why? Because as I said we have the ability to learn from each other and most things are indeed transferable. The blog, I've added is called 'Sue's Blog'. It is a blog I truly enjoy reading. 

I love her writing style, her direct, but honest flippancy when addressing today's major and serious issues. Most of all I respect her courage to make her thoughts known and for her honesty in the face of so much deception. I hope you visit her site and take the time to read some of the posts she has taken the time to share. There is always more to learn and you never know, she just might have something valuable there that you can use.

This Blog, The Canadian Living Blog, will eventually become a website to allow for what I see as a growing and extensive data base of information.  I hope you will keep coming back and take the time to review the links. There is a lot of help out their to help you face your issues for what they truly are, and there are many resources, including this one, aimed at helping you to advocate for your own right to a safe and healthy life.

Thanks for reading and come back often I have much more information coming up soon..... stay tuned..... what's next may be exactly what you have been looking for. 

Sherri

What Happens In Human Spinal Cord Injuries?

NOTE: 
Below is an article I was sent that explicitly defines how Tarlov, Perineural and Menigeal Cysts form following trauma.

I am thrilled to have finally found an understandable explination as to why I have Tarlov Cysts, and how I got them from an MVA. That portion of the article is underlined for ease of use for those like me, who are, and have been searching for answers to this question.


ARTICLE:
 
Although the spinal cord is protected by the bony vertebrae of the spinal column, it can still be injured ...with disastrous consequences. According to statistics gathered in 1996 by the National Institutes of Health, more than 10,000 Americans experience spinal cord injuries each year and more than 200,000 are living with permanent paralysis in their arms or legs.

People with spinal cord injuries can also lose sensation and -- depending where along the spinal cord the injury occurs -- control over critical body functions, including the ability to breathe. And because two-thirds of spinal cord injuries occur in people who are 30 years old or younger, the resulting disabilities can affect their entire adult lives.
 
Usually, injuries to the spinal cord injuries do not result in a cut through the cord; instead, they crush the thin, fibrous extensions of nerve cells that are surrounded by the vertebrae. These extensions are called axons, the long, thin strings of nerve cell cytoplasm that carry electrical signals up and down the spinal cord. The axons of nerve cells with similar functions run in groups or pathways. Some carry sensory information upward to the brain; others run downward from the brain to control the body's movements. An injury to the spinal cord can damage a few or many of these pathways. Nevertheless, a person can often recover some functions that were lost because of the initial injury.

The damage that occurs to spinal cord axons within the first few hours after injury is complex and it occurs in stages. The normal blood flow is disrupted, which causes oxygen deprivation to some of the tissues of the spinal cord. Bleeding into the injured area leads to swelling, which can further compress and damage spinal cord axons. The chemical environment becomes destructive, due primarily to the release of highly reactive molecules known as free radicals. These negatively charged ions can break up cell membranes, thus killing cells that were not injured initially. Blood cells called macrophages that invade the site of injury to clean up debris may also damage uninjured tissue. Non-neuronal cells including astrocytes may divide too often, forming a scar that impedes the regrowth of injured nerve cell axons.

The early events that follow a spinal cord injury can lead to other kinds of damage later on. Within weeks or months, cysts often form at the site of injury and fill with cerebrospinal fluid, the clear, watery fluid that surrounds the brain and spinal cord. Typically, scar tissue develops around the cysts, creating permanent cavities that can
elongate and further damage nerve cells. Also, nerve cell axons that were not damaged initially often lose their myelin, a white, fatty sheath that normally surrounds groups of axons and enhances the speed of nerve impulses.

Over time, these and other events can contribute to more tissue degeneration and a greater loss of function. Scientists are trying to understand how this complex series of disruptive events occurs so they can find ways to prevent and treat it. They are also trying to identify treatments that will enhance some of the normal -- but often limited -- kinds of recovery that can occur after a spinal cord injury.

Another complication in spinal cord injury stems from the variety of nerve fibers and cell types that make up the tissue. In the spinal cord, axons run in bundles or pathways up and down the cord. The downward or descending pathways from the brain to the spinal cord carry nerve signals that control voluntary movements. The upward or ascending pathways carry sensory information -- about touch, temperature, pain, and body position -- from the entire body to the brain. Researchers believe that the ascending and descending pathways, as well as different groups of nerve cells (also called neurons) that lie entirely within the spinal cord, may require individualized treatments to regenerate and regain their functions.

"Do the descending motor pathways from the brain into the spinal cord need the same things [for recovery] as sensory fibers that go from the spinal cord to the brain?" asks Barbara Bregman, a neuroscientist in the department of anatomy and cell biology at Georgetown University in Washington, D.C. "It is important to know what the cells need and when they need it."

For example, if scientists are going to be able to devise ways to repair damaged spinal cord tissue, they may need to use special combinations of nourishing proteins -- called neurotrophic factors -- to help damaged axons to regrow and regain some function. The damaged cells may also require a specific environment in which to recover. So researchers study the chemical composition of the non-cellular material -- the extracellular matrix -- that surrounds healthy neurons in the spinal cord and in the peripheral nervous system that serves the rest of the body. Additionally, damaged spinal
cord neurons may require the presence -- or even the absence -- of different kinds of nonneuronal cells for regrowth and functional recovery.

Although scientists are beginning to understand the cellular and molecular events that occur after spinal cord injury, one question continues to dominate the research: Why don't the brain and spinal cord repair themselves?

Additional reading:
1. M. E. Schwab and D. Bartholdi. "Degeneration and regeneration of axons in the lesioned spinal cord." Physiol. Rev. 76 (2): 319-370 (1996).

2. M.E. Schwab. "Bridging the gap in spinal cord regeneration." Nature Med. 2 (9): 976-977. 1996.

IJO India Journal Of Orthopeadics (click here for link to site)

Excellent information about treatment of symptomatic Tarlov Cysts.

I love it whenever I see countries taking a true, determined interst in their residents health care. This is a perfect example of India taking a lead on rare diagnosis treatment and care.


CASE REPORT Table of Contents
Year : 2007 | Volume : 41 | Issue : 4 | Page : 401-403
Tarlov cyst: Case report and review of literature


Bhagwat Prashad, Anil K Jain, Ish K Dhammi
University College of Medical Sciences and Guru Teg Bahadur Hospital, Shahadara, Delhi, India


Click here for correspondence address and email
Abstract


We describe a case of sacral perineural cyst presenting with complaints of low back pain with neurological claudication. The patient was treated by laminectomy and excision of the cyst. Tarlov cysts (sacral perineural cysts) are nerve root cysts found most commonly in the sacral roots, arising between the covering layer of the perineurium and the endoneurium near the dorsal root ganglion. The incidence of Tarlov cysts is 5% and most of them are asymptomatic, usually detected as incidental findings on MRI. Symptomatic Tarlov cysts are extremely rare, commonly presenting as sacral or lumbar pain syndromes, sciatica or rarely as cauda equina syndrome. Tarlov cysts should be considered in the differential diagnosis of patients presenting with these complaints.


Keywords: Low back pain, sacral perineural cyst, sciatica, tarlov cyst
How to cite this article:
Prashad B, Jain AK, Dhammi IK. Tarlov cyst: Case report and review of literature. Indian J Orthop 2007;41:401-3


How to cite this URL:
Prashad B, Jain AK, Dhammi IK. Tarlov cyst: Case report and review of literature. Indian J Orthop [serial online] 2007 [cited 2011 Apr 12];41:401-3. Available from: http://www.ijoonline.com/text.asp?2007/41/4/401/37007
Tarlov cysts were first described in 1938 as an incidental finding at autopsy. [1] Tarlov described a case of symptomatic perineural cyst and recommended its removal. Since then a few cases have been reported in the literature. [2],[3],[4]


Paulsen reported the incidence of Tarlov cysts as 4.6% in back pain patients (n=500). Only 1% of back pain patients (n=500) were symptomatic. [4] The patient may present as low back pain, sciatica, coccydynia or cauda equina syndrome. The cysts are usually diagnosed on MRI, which reveals the lesion arising from the sacral nerve root near the dorsal root ganglion. [5]


Tarlov advised extensive surgery with sacral laminectomy and excision of the cyst along with the nerve root. [6] Paulsen reported CT-guided percutaneous aspiration of these perineural cysts for relief of sciatica. [4] Recently, microsurgical excision of the cyst has been advocated, combined with duraplasty or plication of the cyst wall. [7]


We report a case of symptomatic Tarlov cyst presenting as back pain, to increase the awareness of this rare entity in the orthopedic community.




Case Report Top




A 29-year-old female presented with right thigh pain off and on for nine months. The pain was not associated with specific time, posture or activity and it used to get relieved by non steroidal antiinflammatory drugs (NSAID). Clinical examination at this stage did not reveal any findings at spine, bilateral hips and left thigh.


For last three months, the intensity and duration of pain had increased, which was now unrelieved by taking NSAID. The pain had progressed to the lower back and bilateral upper thigh up to the ankle. The pain was aggravated by activity and prolonged standing and was more bothersome in the evening. She used to get up in the middle of the night with pain. Later the patient started having rest pain as well. Examination showed no spinal tenderness. Straight leg raising was 50° on the right side and normal on the left side. There was mild blunting of sensations along the S1 and S2 dermatome on the right side, no motor deficit in both lower limbs.


X-ray of the lumbosacral spine did not reveal any abnormality [Figure - 1]. The MRI of the spine revealed fluid-filled cystic lesion, arising from the second sacral nerve root on the right side and measuring 2cm in diameter [Figure - 2].


The patient was taken for sacral laminectomy, excision of the cyst and plication of the cyst wall, while retaining the nerve root [Figure - 3]. Histopathological examination of the cyst wall showed nerve cells, which confirmed the diagnosis of Tarlov cyst.


Patient appreciated relief of pain immediately after the surgery. Postoperative period was uneventful and the patient made prompt recovery. On nine months followup, the patient had no pain in lower limbs and back. The patient is back at her job and is asymptomatic. Postoperative MRI taken at nine months [Figure - 4] did not show any evidence of recurrence of the cyst.




Discussion Top




Tarlov cysts are rare causes of low back pain. They are more common in females. [4],[7] Clinical presentation of Tarlov cysts is variable. The cysts may cause local and/or radicular pain. The dominant syndrome is referable to the caudal nerve roots, either sciatica, sacral or buttocks pain, vaginal or penile paraesthesia or sensory changes over the buttocks, perineal area and lower extremity. Depending on their location, size and relationship to the nerve roots, they may cause sensory disturbances or motor deficits to the point of bladder dysfunction. Tenderness on firm pressure over the sacrum may be present. Commonly, the symptomatology is intermittent at its onset and is most frequently exacerbated by standing, walking and coughing. Bed rest alleviates the discomfort. [8]


Plain X-rays are usually normal. However, they may reveal characteristic bone erosion of the spinal canal or anterior or posterior neural foramina. [9] A CT scan can demonstrate cystic masses isodense with CSF located at the foramina. Bony changes may also be present. [10] An MRI gives a much better soft tissue contrast and is currently the investigation of choice for perineural cysts. The cysts demonstrate low signal on T-1 weighted images and high signal on T-2 weighted images, similar to CSF. [5] Myelography showing the filling of the meningocele sac 1h after injection of contrast medium is highly suggestive of a perineural cyst. [11]


Microscopic features of the cyst were described by Tarlov. The early stage in cyst formation is that of a space between the arachnoid which covers the root or the perineurium and the outer layer of the pial cover of the root or the endoneurium. It usually begins in one portion of the circumference of the perineural space, the larger cysts compressing the nerve root to one side. The cyst occupies the posterior root abutting the proximal portion of the dorsal ganglion. Its main part is bordered by reticulum or by nerve fibers. [1]


The pathogenesis of perineural cysts is uncertain. Tarlov felt that hemorrhage into the subarachnoid space caused accumulations of red cells which impeded the drainage of the veins in the perineurium and epineurium, leading to rupture with subsequent cyst formation. Four out of the seven patients in Tarlov's 1970 article had a history of trauma. [8] Schreiber and Haddad also supported this posttraumatic cause of cyst formation. [12] Because many of the patients with perineural cyst in their series did not have histories of trauma, Fortuna et al . believed that the perineural cysts were congenital, caused by arachnoidal proliferations within the root sleeve. [13]


There is no consensus on a single method of treatment. Various methods have been advocated. Tarlov advised that symptomatic, single perineural cysts should be completely excised together with the posterior root and ganglion from which they arise. [8] Paulsen reported CT-guided percutaneous aspiration of these perineural cysts in two patients for the relief of sciatica caused by compression. [4] According to Caspar microsurgical excision of the cyst combined with duraplasty or plication of the cyst wall is an effective and safe treatment of symptomatic sacral cysts. The parent nerve root is always left intact. [7]


Tarlov cysts are a documented cause of sacral radiculopathy and other radicular pain syndromes. They must be considered in the differential diagnosis of patients presenting with these clinical presentations and appropriately treated by cyst excision.




References Top


1. Tarlov IM. Perineural cysts of the spinal nerve roots. Arch Neural Psychiatry 1938;40:1067-74. Back to cited text no. 1
2. Chaiyabud P, Suwanpratheep K. Symptomatic Tarlov cyst: Report and review. J Med Assoc Thai 2006;89:1047-50. Back to cited text no. 2 [PUBMED]
3. Acosta FL Jr, Quinones-Hinojosa A, Schmidt MH, Weinstein PR. Diagnosis and management of sacral Tarlov cysts. Case report and review of the literature. Neurosurg Focus 2003;15:E15. Back to cited text no. 3
4. Paulsen RD, Call GA, Murtagh FR. Prevalence and percutaneous drainage of cysts of the sacral nerve root sheath (Tarlov cysts). AJNR Am J Neuroradiol 1994;15:293-9. Back to cited text no. 4 [PUBMED]
5. Rodziewicz GS, Kaufman B, Spetzler RF. Diagnosis of sacral perineural cysts by nuclear magnetic resonance. Surg Neurol 1984;22:50-2. Back to cited text no. 5 [PUBMED]
6. Tarlov IM. Cysts (perineurial) of the sacral roots. J Am Med Assoc 1948;138:740-4. Back to cited text no. 6
7. Caspar W, Papavero L, Nabhan A, Loew C, Ahlhelm F. Microsurgical excision of symptomatic sacral perineurial cysts: A study of 15 cases. Surg Neurol 2003;59:101-6. Back to cited text no. 7 [PUBMED] [FULLTEXT]
8. Tarlov IM. Spinal perineurial and meningeal cysts. J Neural Neurosurg Psychiatry 1970;33:833-43. Back to cited text no. 8
9. Taveras JM, Wood EH. Diagnostic neuroradiology. 2 nd ed. Vol 2. Williams and Wilkins: Baltimore; 1976. p.1139-45. Back to cited text no. 9
10. Tabas JH, Deeb ZL. Diagnosis of sacral perineural cysts by computed tomography. J Comput Tomogr 1986;10:255-9. Back to cited text no. 10
11. Nishiura I, Koyama T, Handa J. Intrasacral perineurial cyst. Surg Neurol 1985;23:265-9. Back to cited text no. 11
12. Schreiber F, Haddad B. Lumbar and sacral cysts causing pain. J Neurosurg 1951;8:504-9. Back to cited text no. 12
13. Fortuna A, La Torre E, Ciappetta P. Arachnoid diverticula: A unitary approach to spinal cysts communicating with the subarachnoid space. Acta Neurochir (Wien) 1977;39:259-68. Back to cited text no. 13


Top
Correspondence Address:
Bhagwat Prashad
K-1/133, First Floor, Chitaranjan Park, New Delhi-110 019
India

What is Arachnoiditis?

Arachnoiditis ** Provided by Spine Universe**

Written by Edgar G. Dawson, MD and Mary Claire Walsh

Arachnoiditis is a debilitating condition characterized by severe stinging and burning pain and neurologic problems. It is caused by an inflammation of the arachnoid lining—one of the 3 linings that surround the brain and spinal cord. This inflammation causes constant irritation, scarring, and binding of nerve roots and blood vessels. The predominant symptom of arachnoiditis is chronic and persistent pain in the lower back, lower limbs or, in severe cases, throughout the entire body. Other symptoms may include:

• Tingling, numbness, or weakness in the legs
• Bizarre sensations such as insects crawling on the skin or water trickling down the leg
• Severe shooting pain (which some liken to an electric shock sensation)
• Muscle cramps, spasms, and uncontrollable twitching
• Bladder, bowel, and/or sexual dysfunction

If the disease progresses, symptoms may become more severe or even permanent. This disorder can be very debilitating, as the pain is constant and intractable. Most people with arachnoiditis are unable to work and have significant disability.


Causes of Arachnoiditis
There are 3 main causes of arachnoiditis:

• Trauma/surgery-induced
  Arachnoiditis has long been recognized as a rare complication of spinal surgery (particularly after multiple or complex surgeries) or trauma to the spine. Other similar causes include multiple lumbar punctures (especially if there is a "bloody tap" with bleeding into the spinal fluid), advanced spinal stenosis, or chronic degenerative disc disease.
• Chemically-induced
  In recent years, myelograms have come under scrutiny as being a possible cause of this condition. A myelogram is a diagnostic test in which a radiographic contrast media (dye) is injected into the area surrounding the spinal cord and nerves. This dye is then visible on x-rays, CT, or MRI scans and used by physicians to diagnose spinal conditions. There is now a concern that exposure (especially repeated exposure) to some of the dyes used in myelograms may cause arachnoiditis. Similarly, there is concern that the preservatives found in epidural steroid injections may cause arachnoiditis, especially if the medication accidentally enters the cerebral spinal fluid.
• Infection-induced
  Arachnoiditis can also be caused by certain infections that affect the spine such as viral and fungal meningitis or tuberculosis.

Treatment
There is no cure for arachnoiditis. Treatment options are geared toward pain relief and are similar to treatments for other chronic pain conditions. Some examples include the following:

• Pain medications such as NSAIDs, corticosteroids (orally or injected), anti-spasm drugs, anti-convulsants (to help with the burning pain), and in some cases, narcotic pain relievers. Some of these medications may be administered through an intrathecal pump which, when implanted under the skin, can administer medication directly to the spinal cord.
• Physical therapy such as hydrotherapy, massage, and hot/cold therapy.
• Transcutaneous Electrical Nerve Stimulation (TENS) is a treatment in which a painless electrical current is sent to specific nerves through electrode patches that are placed on the skin. The mild electrical current generates heat that serves to relieve stiffness, improve mobility, and relieve pain.
• Spinal cord stimulator is a device that transmits an electrical signal to the spinal cord for pain relief.

Surgery is not recommended for arachnoiditis because it only causes more scar tissue to develop and exposes the already irritated spinal cord to more trauma.


Living with Arachnoiditis
Unfortunately, this condition can cause serious disability. It is never easy to live with chronic pain. Not only does it adversely affect your body, it can also cause mental stress as well. Sufferers of arachnoiditis are encouraged to join support groups or find other therapeutic outlets for stress. Treatment methods should be focused on pain relief and maintaining quality of life. More research is needed about this and other chronic pain conditions so that someday a cure may be found.

Updated on: 12/10/09

Tarlov Cysts: Teach the Teacher

When a cyst has been located on your spinal cord,  size, nerve compression and location will usually bring froward the question of  "are these cysts symptomatic or asymptomatic?" That decision can be made by determining if you present any, most of, or all of the following symptoms. Does the following list accurately explain any of the pain or complications you experience personally.


Symptoms of expanding/enlarging cysts occur due to compression of nerve roots that exit from the sacral area. Symptoms may include the following, dependent on the location of the cysts and the section of the spine they occur:

• Pain in lower back (particularly below the waist) and in buttocks, legs, and feet
  
• Pain in the chest, upper back, neck, arms and hands
  
• Weakness and/or cramping in legs and feet / arms and hands
  
• Parasthesias (abnormal sensations) in legs and feet or arms and hands, dependent on cyst locations
  
• Pain sitting or standing for even short periods of time
  
• Pain when sneezing or coughing
  
• Inability to empty the bladder or in extreme cases to urinate at all
  
• Bowel or bladder changes, including incontinence
  
• Swelling over the sacral (or cervical, thoracic, or lumbar) area of the spine
  
• Soreness, a feeling of pressure and tenderness over the sacrum and coccyx (tailbone), extending across the hip and into the thigh with cysts in the sacrum. Same feelings in upper sections of the spine dependent on cyst locations
  
• Headaches (due to the changes in the CSF pressure) and sometimes accompanied by blurred vision, pressure behind the eyes and optic nerve pressure causing papilledema (optic nerve swelling)
  
• Dizziness and feeling of loss of balance or equilibrium
  
• The feeling of sitting on a rock
  
• Pulling and burning sensation in coccyx (tailbone) area, especially when bending
  
• Sciatica
  
• Vaginal, rectal, pelvic and/or abdominal pain
  
  
  

The sciatic nerve is the longest nerve in the body and it originates at the S2, S3 level of the spinal column. It crosses the buttocks and extends down the leg into the foot. Sciatica is a syndrome that results in burning, tingling, numbness, stinging, electrical shock sensations in the lower back, buttocks, thigh, and pain down the leg and foot. Severe sciatica may also result in weakness of the leg and foot.

**Symptoms list Copied and provided by the Tarlov Cyst Disease Foundation. Link to the Foundation can be found in the link lists to the left of this blog page.**

Some of the issues I have personally faced include:

• repeated urine infections
• blood in the urine
• urinary stasis in both kidneys, marked more on the right than left kidney.
• urinary reflux
• bowel or bladder changes, including incontinence and loss of feeling
• pain in lower back (particularly below the waist) and in buttocks, legs, and feet
  
• pain in the chest, upper back, neck, arms and hands
  
• weakness and/or cramping in legs and feet / arms and hands
  
• soreness, a feeling of pressure and tenderness over the sacrum and coccyx (tailbone), extending across the hip and into the thigh with cysts in the sacrum. Same feelings in upper sections of the spine dependent on cyst locations
• headaches (due to the changes in the CSF pressure) and sometimes accompanied by blurred vision, pressure behind the eyes and optic nerve pressure causing papilledema (optic nerve swelling)
  
• dizziness and feeling of loss of balance or equilibrium
  
• the feeling of sitting on a rock
  
• pulling and burning sensation in coccyx (tailbone) area, especially when bending
  
• Sciatica
  
• vaginal, rectal, pelvic and/or abdominal pain 
  
  
  I'm sure you can see that when the symptom list is compared to my personal list the similarities are quite obvious.
  
  
  Review the symptom list and compare your pain or personal experiences to that list to help with determining if your cysts are indeed symptomatic. Be as honest as you can to ensure accuracy and that your claims can be scientifically supported by the specific location, size and the afflicted and compressed, nerve roots. 
  
  
  This experience could provide you with legitimate knowledge, and allow you to explain in plain English when describing your issues, and your beliefs to your physician. Although Tarlov Cysts are typically deemed to be asymptomatic, science cannot be ignored in the face of accurate and scientifically sound information.
  
  
  Sometimes we, the patient, have to be the teacher. To be a teacher you must be informed.
  

Another Day, Another Change

I think I've adjusted to the changes that occur with this illness and the challenge of new symptoms almost everyday.

Last week I pushed myself a little too hard, I think. It can be a little difficult to tell when I'm blessed with the  pain numbing gift of Dilaudid. Believe me, I'm not downing pain medication, not at all. If anything I wish we could find some consistent, dependable pain management for my constantly increasing pain, but right now we're still trying to find what works, what doesn't and what might.


Shortly after what I assume was overdoing it (ODI), perhaps a day or two later, a new limitation showed itself. A new limitation that totally changed things.

Everyday I walk my little Jack Russel Rennie. Usually we follow a regular route in the back of the apartment building where I live. I swear it's never been an issue, if anything it was nice way to wake up in the morning, break up my day, or to end what seemed like a long and endless, pain filled day. So I decided this time to take him to a different park and en-route I found myself having to sit four times, more than I've ever been required to do.  


In the recent past I'd been able to walk that far with only one or two stops, but this time it was a mandatory four. I know it would have been even more if I'd given in to the pain and sat again. I made it back home, rested and the pain from the walk seemed to fade, leaving behind stiffness that I could live with as long as I didn't do too much. 

The next day I did the typical normal morning walk with Rennie and when we were half way through I began to experience an excruciating pain in my low back and left hip. The path of pain felt like a nerve pinch sending what felt like an electrical shocks down to my foot, forcing my foot to turn inward. I was forced to rest for a quite a long time waiting for the pain to ease and I sat on a bench with Rennie at my feet, staring at me. I think he knew something was wrong.

As time passed I became strong enough to face the pain and walk to the building. As I walked I kept my eyes focused on the door, staring at it, feeling like it moved farther and farther away as I limped home suffering from severe pain in every step. I made it into the apartment door and walked straight to the safety of my bed, while dropping Rennie's leash to the floor and calling out to my Mother for help.


That was a moment of change. I didn't realize it then, but as my Mom removed my shoes the tears filled my eyes. I knew this would be another day of resting and trying to recover. Another day of my life lost to this disease while I became more and more fearful of walking too far on my own. I knew things where getting bad, but I didn't think it would get this bad. I guess I was in denial and still holding onto that small glimmer of hope. The hope of finding, or being offered a solution. I prayed that one day that remedy would come.

The following day, the day before my Grandsons 2nd birthday I endeavored out the door on a mission. I walked to the mall, a short 10 mins away, accompanied by my nephew and thankful that I wasn't alone. I made it into the mall with that now common and typical pain slowly building. I knew where I was going, knew what I wanted and didn't spend much time getting it and heading back out the door, but just as were were leaving the store the same pain as yesterday came on extremely strong. Once again I couldn't put pressure on my left leg without that electrical shock in my hip shooting down my leg and into my foot. I leaned on my strong nephews shoulder and limped to the door while every step increased the pain. We stopped near the exit and as I sat on the bench I downed some cold water, accompanied by my pills. We called for a taxi and every moment seemed like forever. Every single second of having to stand upright made the pain even more severe. I stared at the sidewalk wondering, "would it be too strange if I laid on the sidewalk and curled into a pain-filled ball?" Thankfully the Taxi  appeared before I had to resort to such embarrassment  and we were home within minutes. 


Once again, just like the day before, I hobbled directly to my bed where my Mother once again removed my shoes and that's where I remained for most of that day. Another day of my life lost to this disease. The days I was losing were certainly mounting!

These experiences taught me a valuable lesson. A lesson I'd have to face eventually; I was time to get a walker. I needed something to rely on. Something to help me maintain whatever independence I could as these cysts took away my freedom while I wait for surgery.

This disease isn't just filled with pain or lost days. This disease is also filled with challenges and loneliness. It's a disease that can easily generate fear. Fear of being alone, fear of walking too far from home and also the fear for my future and how much more I could handle. 


Now I'm more cautious of what I do that requires walking. Now I have one more thing to add to the long list of limitations and complications. Now I have one more thing to thank the cyst and the confused Ontario and Canadian medical system for. Thanks for taking one more thing I have always loved and making it a fear rather than the pleasure it had always been.

I know I'll mange, that's what I always do! I will not let this stop me from being me and I will not let this take away the things that make me, me. 


The lessons we learn overtime are all we have to depend on. We have to keep moving forward, with and by whatever means necessary. Things may have to be modified, but it never has to end.

I do hope we can change this medical system in the future to help them understand that Tarlov Cysts are NOT an incidental finding! These Cysts are real, they cause real pain. They can change life and turn it from a learning journey into a never ending challenge. 


I'm still learning, but I'm getting a little wary of the never ending challenges with no professional, medical support. 


A GP really can only do so much.