Running To Stand Still

I find myself a 38 year old man, struggling to raise my two young children James and Emogen, with limited support from the medical community, family and friends. I am a typical sufferer of Tarlov Cyst Disease…

From Angus:

I find myself a 38 year old man, struggling to raise my two young children James and Emogen, with limited support from the medical community, family and friends.

I am a typical sufferer of Tarlov Cyst Disease…having self-diagnosed after more than 15 years of increasing symptoms. Tarlov cysts are spinal nerve root lesions filled with spinal fluid, found most often at the sacral level through MRI scanning. Tarlov cysts can be asymptomatic or cause a serious neurological disorder called Tarlov disease.

In depth description here: www.rareshare.org/communities/tarlov-cyst/details

Tarlov Cyst is a misleading name, as most people think of cysts as benign pus-filled lumps, which sort themselves out in time. Tarlovs are about the worst cyst possible, they are lesions of the spinal nerve roots – and as such, are tantamount to spinal cord injury – which will most likely deteriorate.

They cannot be removed as they are integral to the nerves, and are filled with the cerebral spinal fluid which fills the cord and surrounds the brain. Essentially a blister on a nerve root. They are classed as tumours, as their nature is to grow; and the ramifications on the patient and loved ones are on a par with cancer.

They are usually found in the sacrum, and as such are trapped…wanting to grow but with no room…so they compress nerves, and erode sacral bone from the inside out.

It is this communication of fluid which causes much of the debilitation of this disease. On standing gravity and pressure mean they enlarge somewhat – pressing on the surrounding nerve roots and worsening leg weakness/pain and other symptoms; and the pressure fluctuations cause horrendous ‘spinal headaches’.

This is mine, the white blob located at s2/3:

This is a cross section showing the cyst pressing on the black nerve roots:

Here are some common symptoms, many of which I deal with more or less constantly:

• Pain and gripping tightness in the legs, lower back, hips, abdomen, perineum, buttocks and rectum – radicular neuropathy
• Cramping or weakness in the aforementioned body parts – difficulty walking, especially uphill/stairs
• Rectal pain – low grade to horrific
• Cauda equina syndrome
• Dysuria – painful urination
• Bowel and bladder problems – incontinence/constipation
• Not able to stand or sit without feeling pain
• Tailbone region at the base of your lower back feels like it’s being pulled
• Burning sensation in tailbone area – sacral pain crescendos
• Nerve pain, leading to burning, tingling or numbness
• Hypoesthesia – a diminished capacity for physical sensation, especially of the skin.
• Paraesthesias – pins and needles and random skin sensations – horrible hot feet
• Sexual dysfunction
• Retrograde ejaculation
• Blurry vision, dizziness, inertia and vertigo
• Pressure sensations behind the eyes
• Constant headaches – vicious and intractable
• Hurts when you sneeze/cough
• Reflexes aren’t coordinated
• Feeling disoriented

Read more at Buzzle: http://www.buzzle.com/articles/tarlov-cyst-symptoms.html

I find myself using the analogy of ‘running to stand still’, as this is the lifestyle which is dictated by these cysts; predictable, intractable, unpredictable, excruciating…increasing throughout the day, so that I feel I am running around trying to get things done as my nose ploughs into the ground like a plane landing without a front wheel…a real ‘pain in the arse’ also springs to mind!

Sitting brings on pain and numbness, as does standing; bending is treacherous, running out of the question, as is kicking a soccer ball with James or lifting Em up into her bed. I can do most things, but there is a high price to pay…when something hurts, one’s instinct is to recoil and avoid.

It is uncertain whether Tarlovs are genetic or arise through trauma. I have many such instances to blame, going back to childhood…a case of insidious worsening…two steps forward, one step back style. Whether it started after falling out of the walnut tree, or from those knees in the back ‘rock’n’wrestling’ at primary school or playing football; or from that bike accident or that wall of bouncers; or it has been there since birth isn’t that important. I do know that tractor seat smacking me incredibly hard after sending me into the roof, in an instant of exquisite timing whilst cultivating virgin ground west of Walgett some 17 years ago!, made symptoms take three steps forward. As did the final revelatory act of digging a swale for three days ignoring the increasing pain…resulting in a major ‘flare up’ and the sensation of someone hitting me up the bum with a sledge hammer…leading me to get my first Mri, from which I self-diagnosed and began this outrageous exercise in self-advocacy two years ago.

So for over a decade I have been victim to this disease unknowingly. I have come into awareness in a monumental tail slide. Most illnesses begin, followed by obvious symptoms and suffering; this disease often has a reverse progression, with sufferers going through years of pain and misery, dismissal and ridicule, before finding the cause…if at all. I have also been diagnosed with Fibromyalgia which shares many symptoms of pain and fatigue and cognitive deficit…the double of spinal fluid pressure fluctuation headaches and ‘fibro fog’ has made delineation and clarity extremely hard to achieve, even since diagnosis.

It is known as a ‘family disease’ because of the damage it does to relationships, akin to a slow wrecking ball through every facet of one’s life; and as in my case even more insidious when everyone is ignorant to what is going on.

Doctors used to be taught Tarlovs don’t cause symptoms. They are difficult, risky and expensive to operate on; so to this day most medicos worldwide don’t acknowledge them, report findings or even tolerate discussion. They do cause considerable pain, fatigue, dysfunction and deserve attention. I and most other Tarlov Cyst sufferers follow a path to treatment/diagnoses which is both inhumane and outrageous; I had blind faith in doctors, but not anymore.

Tarlov disease must be taken with great seriousness, because Tarlov disease can advance to the stage of constant severe pain. If not successfully treated, a person in this stage of the disease can die from the stress of the suffering, from the pain medications (hepatitis), or from suicide. The added stress of dismissal, and stigma, of a rare invisible orphan disease is horrible and needs rectifying.

This surgery is risky, and I am not deluded to the possibility of poor results. I hope for an excellent outcome, but primarily wish to ‘stop the rot’; cessation of the awful headaches and leg weakness is probable, and there is a good chance of improvement in pain and function.

After selling the farm and shutting down many of my dreams, I find myself way behind the eight ball with lessening ability to climb out of this hole. It goes against my nature to ask for help, but it has reached the stage where I have little choice; my children and I need it.

I have shed most responsibilities and hobbies, focussing on what is best for James and Emogen. For two years I have done everything healthy, researched all avenues of therapy and knowledge with no support from specialists, insurance or the government; and am certain that surgery is the best decision.

I have had great difficulty coming to terms with this disease; and realise that it is nigh on impossible for an ‘outsider’ to gain comprehension of how it feels to live with Tarlov Cyst Disease; but Dr Frank Feigenbaum ‘gets it’.

Dr Feigenbaum offers surgical treatment of Tarlov cysts; he has dedicated his neurosurgical career to focus on them. He is a highly skilled surgeon, who exhibits an unusual amount of empathy as far as neurosurgeons go…in stark contrast to many who don’t acknowledge Tarlovs. He has reviewed my scans, and found me an ‘excellent candidate’ for surgical treatment with him in Cyprus.

I am asking for help in raising the $29500 Euro, plus plane tickets for two to Cyprus (a helper is required), needed for this surgery to take place. Neither my health insurance or the Australian Government will help in any way whatsoever as Tarlovs are not life threatening…or even acknowledged as an issue. I have exhausted all my resources getting to this stage, and hope to find help within community.

This is a horrendous disease, and as much as I wish to receive treatment for myself; I also want to help shed light on our plight, and hopefully others can follow a less traumatic path to diagnoses than I have.

Thankyou,

Angus Gough.

From Tarlov Wellbeing Support Group:

Tarlov Wellbeing is a support group for sufferers of Tarlov Cyst disease. These spinal tumours are totally debilitating and completely transform happy people leading productive lives into persons riddled with disabilities and insidious pain. As the tumours grow, sufferers lose their ability to walk, there is loss of sexual function and bowel and bladder dysfunction. Towards the later stages of the disease there is loss of eyesight as the tumours (which fill with cerebrospinal fluid) effect the optic nerve leading to blindness. Can you imagine living a life like this?

The truly saddening and shocking part of this story is that these people can be cured though surgery. They need not live this way, experiencing their personal hell each and every day as well as the guilt of being a burden to their families and society. Those that have surgery do return to work. They return to their previous occupations as nurses, teachers, photographers. They return to being the parent they want to be; one who can walk, run, play, make the beds, lift and comfort their children. This is what Tarlov Wellbeing wants for Angus. We are supporting his quest to raise the $70,000 needed for his surgery.

In the meantime, we will support him and our other members to keep their “chin up.” That is to experience a sense of WELLBEING and gratitude despite their many daily challenges whilst they await their life changing surgery.