FEATURED POST: COPING WITH A RARE DISEASE: MY STORY


My Featured Post today is a true story about an individual, who has been diagnosed with a rare and debilitating disease. In the post today Usman Shamaki talks about his experience as a victim of Tarlov Cyst Disease and, how he has managed to cope with the pain of his illness. I was supposed to have done this earlier, but the article took longer to sort out than I expected because of its length. Even tho’ the piece is rather long, but I have decided to share the story anyway because I found it inspiring. I hope you all do too.

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As a young lad, I always prayed for protection from illness and disease. When I became older and more of a realist, I understood the fact that as humans, due to the nature of our physiology, the prevalence of
bacteria, germs and viruses as well as the stresses of daily life, it was impossible to live a life without
illness or disease. So I did the rational thing; I amended my prayer. I still prayed for protection from illness and disease, however, in the event I did fall ill I prayed it would be limited to malaria or
typhoid and not the sort of illness that would be beyond my means to seek a cure for or one that was
so harsh or rare, seeking a cure for it would be difficult or impossible. For many years God has
graciously and mercifully answered my prayers. Having been hospitalized only twice in my life, I
guess it is safe to say I could (up to the beginning of this year at least) qualify as a textbook example of a
perfectly healthy human specimen.

Recently, some of my readers contacted me to inquire about the noticeable decline in the frequency of
articles posted on my blog. All I could tell them was I wasn’t feeling well. That was the only explanation I
could give as I didn’t quite know what was wrong with me. All I knew was my lower back was in
excruciating pain. It was so bad I was on medication and bed rest for a whole week. I am an active
individual with a demanding job, so being on bed rest for a whole week was a big deal for me. Back in 2008 when the backache started, I consulted a doctor, got an x-ray and nothing out of the ordinary was
found. So, it was attributed to the long distance I drive to and from work in the Abuja traffic.
Over the years, the ache would start up but would subside once I took some painkillers. This time the
painkillers having proved futile, I was advised to see a specialist. So, an MRI, three neurosurgeons and a
spine surgeon later, I was given a diagnosis I’m still trying to come to terms with.
I was told I suffer from a very rare disease called Tarlov Cyst Disease. “Tarlov Cyst Disease? Isn’t that the name of a villain in one of them James Bond movies?”, I thought. For a long time after the diagnosis, I spent days in a bit of a daze thinking about the immense odds of being afflicted with such a
rare disease. But as with all things in life, my faith took charge and I said “Alhamdulillah”, grateful for at
least being fortunate enough to get a diagnosis.
According to the National Organization for Rare Diseases, this disease is so rare that less than 200,000 Americans are afflicted by it. As for how many Nigerians suffer from it, your guess is as good as
mine. With a very poor or nonexistent database of common diseases, a database of rare diseases is
something that’s unheard of. Tarlov Cyst also known as perineural cyst or sacral nerve root cyst are cerebrospinal fluid filled sacs located in the spinal canal of the S1-S4 region of the spinal cord. These cysts are sometimes large enough to weigh down on nerve roots and the bone in the affected area thereby causing bone erosion and nerve damage. In case you’re wondering, yes, it is very
painful. Symptoms may include the following:
1. Pain in the lower back, particularly below the waist;
2. Pain in the chest, upper back, neck, arms and hands;
3. Weakness and/or cramping in legs and feet/arms and hands;
4. Paresthesias (abnormal, buzzing sensations) in legs and feet or arms and hands;
5. Pain sitting or standing for even short periods of time;
6. Pain when sneezing or coughing;
7. Swelling over the sacral area of the spine;
8. Headaches due to changes in Cerebrospinal fluid pressure and sometimes accompanied by blurred
vision; and 9. The feeling of sitting on a rock due to the pressure the cyst exerts on the sciatic nerve.
I’ve got about six out of the nine symptoms mentioned above. Anyone of them can make your life
a doozy, not to mention having more than one. Everything is difficult and painful; standing, sitting
and lying down. I have to move around with a little pillow to support my back and help ease the pain.
I’ve got one on my chair at work, another in my car and I’m considering stuffing another one down my
pants to ease the pain when I walk. So far, there is no clear cause or reason for why these
cysts occur. Most research tends to point towards them being caused by trauma from a fall or an
accident, while others suggest a genetic link of some kind.
The occurrence of tarlov cysts in the spine is not so rare. However, in most cases they are asymptomatic (not showing or causing any symptoms). A very small percentage of tarlov cysts are symptomatic. Most times asymptomatic tarlov cysts are discovered accidentally in the course of conducting an MRI for other diseases.
There are basically two ways of treating tarlov cysts. However, both of them are not without risks and are not absolute guarantees of relief or full recovery.
They can be surgically removed. The problem with surgery is due to the fact that the cyst walls are lined
with nerves or they attach themselves to the nerve roots, touching or removing them can cause them to
rupture and damage nerve roots thereby leading to paralysis, urinary incontinence or permanent
neurological damage. In the event one is lucky to have the cyst removed without suffering any of the above mentioned risks, it can either come back more aggressive than before or
it may not return but all the symptoms will still remain.
The cysts can also be removed by a process called aspiration and fibrin glue therapy. This is where a
syringe is inserted into the cyst, the cerebrospinal fluid is drained and fibrin glue is then injected to
block the cyst walls in order to stop them from filling up with cerebrospinal fluid. The downside of this is
the cyst wall can sometimes get ruptured causing the fibrin glue to leak into the nervous system. From the research I’ve carried out, the consequences of this happening are so severe it’ll make you wish you had left the cyst untouched in the first place.
In my case, of the three neurosurgeons that have viewed my MRI scan, none have agreed to conduct
surgery on me due to the location of the cyst and the risks involved. In fact, I have been vehemently warned against surgery. As for aspiration and fibrin glue therapy, Hell No! I will not even contemplate it. I was advised to undergo physiotherapy and take up swimming, which have so far not been of much help.
As for medication, the fear of addiction and developing a tolerance for painkillers has left me skipping my medication on some days. The problem most people with such “invisible diseases” encounter is the skepticism with which other people view them. There is the feeling that there’s nothing wrong with them, they’re just faking it to get attention due to the absence of any visible
outward symptoms. I have had my fair share of skepticism and self doubt. At one point I felt I was
developing hypochondriac tendencies. Honestly, the fact that I now have a clear diagnosis of
what I’m suffering from is a huge relief. The initial uncertainty was far more torturous than the pain I’m
going through.
Therefore, based on my research, trials and experiences I have come up with tips for individuals suffering from Tarlov Cyst disease and other rare diseases to enable them cope.
1. KNOWLEDGE IS POWER: As with everything else in life, the more knowledge you have about anything,
the better your understanding of it. When you have a rare disease, one of the best things you can do for
yourself is to seek for knowledge and educate yourself about it, it’s causes, symptoms, treatment
and the risks involved with treatment. With the internet brimming with an amazing array of websites, articles and journals about almost every disease known to man, there is no shortage of useful
information to help you cope. Having a father who was a doctor and a mother who is a pharmacist, studying medical journals is something of a pastime for me. I realise it may be a
bit cumbersome for the lay individual, but trust me, you can learn a lot from seeking knowledge about your condition. Even if you’re perfectly healthy, any knowledge you acquire from reading about medical
conditions can be of great help to someone suffering from a rare disease.

2. IT IS ABSOLUTELY OKAY TO TALK ABOUT IT: People who suffer from a disease, whether rare or common, most times bottle themselves up and avoid mixing with friends, colleagues and the general public because they feel they’ll be judged for having a disease. Their self esteem gets very low and due to the isolation they impose upon themselves, depression could set in. I move around with a small
pillow for my back and when people look at me funny and ask why, I let them know about it. At the
end it turns out to be an enlightening discussion. Don’t feel ashamed to talk about it. Think of it as an
opportunity to educate people about what you’re going through. No one is above falling ill or having a
disease. We’re all human.
3. JOIN A SUPPORT GROUP: These days there are support groups for all sorts of problems. There’s a
support group for recovering alcoholics, recovering drug addicts, traumatized soldiers who have returned from war, the list is endless. There is a lot you can gain from joining a support group. Just go to google and search for a support group for what disease or ailment you’re suffering from. After I was given a diagnosis, I joined an online support group of amazing and brave individuals suffering from Tarlov Cyst Disease and I have gained a lot in terms of pain management, how to posture myself when sitting or lying down to avoid or lessen the pain and other amazing tips.
4. BE POSITIVE: Whether you’re suffering from a disease or you’re perfectly healthy, there are a lot of
benefits to be gained from being positive in all situations. This does not just apply to the internal positivity you transmit to yourself. It also applies to external positivity others transmit to you. As such,
there is the need to avoid people that are negative, as this can greatly affect your ability to handle your
disease. In fact, it can accelerate and worsen the progress of your disease. This is a fact which has
been proven by what has come to be known as The Monster Study.
The Monster Study is the name given to a stuttering experiment performed on 22 orphaned children in
Davenport, Iowa in 1939. It was conducted by Wendell Johnson at the University of Iowa. Johnson
chose one of his graduate students, Mary Tudor, to conduct the experiment, and he supervised her
research. After placing the children in control and experimental groups, Tudor gave positive speech
therapy to half of the children, praising the fluency of their speech, and negative speech therapy to the other half, belittling the children for every speech imperfection and telling them they were stutterers. Many of the normal speaking orphan children who received negative therapy in the experiment suffered negative psychological effects and some retained speech problems for therest of their lives.
Therefore, be positive and surround yourself with positive people. It’ll go a long way in helping you
cope with your disease. There are a number of ways you can be and maintain a positive outlook. Read
inspirational books and positive quotes everyday or recite positive affirmations to yourself daily and at
times of the day when you feel down. “I will get through this.” “I am stronger than this.” “This too
shall pass.” These are examples of positive affirmations you can tell yourself.

5. GET A HOT WATER BOTTLE OR AN ICE PACK: This tip is particularly for people suffering from Tarlov Cyst disease. Bedtime is one of the most painful times as this is when something as mundane as going to bed becomes a nightmare. You can’t seem to find a comfortable position, your back feels like it’s being
skewered from the inside. It’s torture! Thanks to suggestions from people in my support group, I discovered that placing a hot water bottle or ice pack on the back can help ease the pain and enable you
get some sleep.
6. PITY WILL NOT HELP YOU: It is usual when we fall ill to feel sorry for ourselves and for others to feel sorry for us. When one has a rare disease, self pity and pity from others is even more evident. This is a normal human emotion but it is useless in such circumstances and it will not help you. In fact it will cripple you as it sucks out all the vitality and energy from you. I cannot ever recall a time when self pity or pity from others aided or propelled me to work harder or strive further to achieve a goal. Do not let pity pervade your senses, it will not help you.

7. TAKE YOUR MEDICATION AS PRESCRIBED: I feel hypocritical for saying this, considering the fact that I
hate pills and I sometimes skip my medication. Hey, don’t look at me like that! I have a good reason for
skipping my meds. My medication comprises mostly of prescription painkillers. From what I’ve read about them when one takes them repeatedly it can lead to addiction or one can develop a tolerance for them, which means the normal dosage will not be effective. However, now that I need medication just to be able to stand and function during the day, no one has to scold me to take them religiously. As a friend of mine says “dem no dey tell blind man say train dey come.” Ok, I’m getting of track. Let’s get back to the main issue. Please take your medication as prescribed. They will go a long way in helping you cope with your disease.
8. PRAY: This is by far the most important of all the tips. Prayer can help lift your spirits and inspire
confidence. As science investigates the connection between the mind and the body, some scientists have found that a person’s faith can help him or her live a longer, healthier life. Prayer may lower blood
pressure and heart rate, both of which can contribute to a more virile immune system. Therefore, pray and let your faith take control. When your disease weakens you; pray. When despair threatens to erode you; pray. In fact, Pray Until Something Happens (PUSH).

I would like to express my profound gratitude to my family, friends and especially to my colleagues at work who have been extremely accommodating and understanding of my situation and have made sacrifices to enable my working hours be easy and less painful.
Thank you all so much. To my readers, thank you so much for your concern and
encouragement. I promise this illness will not get me down. I intend to continue entertaining you with my articles. Tarlov Cyst will not get the best of me! I promise. If there is anyone reading this or if you know anyone suffering from Tarlov Cyst Disease, please get in touch
with me via the comments section so we can share tips or possibly start a support group and share ideas on how to better cope with the disease. Please do not feel sorry for me, I don’t need your pity. I need encouragement.

Usman Shamaki blogs at http://www.uashamaki.blogspot.in, you can also contact him for more information about his condition on twitter @aushamaki

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One thought on “FEATURED POST: COPING WITH A RARE DISEASE: MY STORY

  1. Contact Dr. Frank Feigenbaum. He is one of the only neurosurgeons in the US skilled in this condition. He is located in Dallas but performs surgeries overseas in Cyprus, I believe. I wish you much luck in your quest for relief. I have been suffering for a long time, too. It is a horrible disease. God bless.

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