This Monster Inside of Me, by MJ

This monster inside me laying in wait 

for the slightest 

excuse to flare, 

explodes with gut wrenching lashes of pain, 

no sympathy to spare. 

You can stroke it, pamper it, 

submit to its blackmailing greed, 

but no matterhow careful, 

I cannot appease it; I cannot be freed.

This monster inside of me trapped in his cage. 

All over my body he takes his rage.

Lost in the fog from morning til night

It's hard not to be consumed with fright.

This monster inside, doing its best to cripple,

somedays it takes no more than a ripple.

Because he is hidden no one believes

This monster inside of me makes me grieve.

- MJ

A New Research Study: “A genetic analysis of patients with Tarlov cysts”.

DR. KEIRAN MURPHY IS NO LONGER ACCEPTING APPLICATIONS 

FOR THIS RESEARCH PROJECT 

FINAL RESULTS SHOULD BE AVAILABLE BY THE END OF FEBRUARY 2014

IF YOU ARE A PATIENT, WITH QUESTIONS PLEASE EMAIL;

s.jones@tarlovcystsociety.com

March of 2013 marked the three-year anniversary of my introduction to the world of Rare Disease.

It was March of 2010, three months after a Motor Vehicle Accident triggered excruciating pain when my first MRI’s were ordered. Within days I was introduced to the rare disease known as Tarlov Cyst Disease.

Before the accident I’d been living with some occasional, and other longstanding symptoms explained only by the unique set of symptoms that appeared at any given time. When the diagnosis of Fibromyalgia was added to the list in 2005 it became the catchall for every old or new, pain and symptom.

I’d grown accustomed to some of my health issues and accepted them as a normal part of life, but thanks to two MRI’s and several informed and experienced specialists I finally discovered that what I suffered from was far from normal.

The symptoms and insurmountable pain that accompanied my post-accident problems could only be described as living through a nightmare full of pain, fear, anger and confusion. I watched the life I knew quickly slip away while a new pain filled, devastating, but determined and inquisitive life began. 

I will always consider myself to be blessed. Not because I’m ill, or because I can research or write, but because everything I’ve needed, short of an all encompassing solution, has found its way into my life, providing the things I needed at the appropriate stage or time.

I started writing my blog shortly after diagnosis while searching for answers and others like myself. Since the beginning of the blog I’ve met hundreds, or perhaps even thousands of people living with many of the same symptoms and fears I know only too well. My blog allowed many newly diagnosed patients to find out more about their diagnosis and its helped guide patients to other patients and to some of the few specialists who offered care. Some assistance was minimally invasive, while others were informative, but the blog began to show the world how large our little Tarlov World had become.

Unfortunately the number of Canadians diagnosed with this disease has grown in numbers, and our little Tarlov Cyst Society continues to grow with it. Our society has grown from none in the beginning, to at least one Tarlov Cyst patient in every Province across the Country.  Some Canadians found connection through this blog, others through some of the many support groups formed by patient advocates around the world.

For some reason the highest population of Tarlov Cyst patients in Canada live within the Province of Ontario, which for the following announcement is certainly a benefit to Canadians and all Tarlov Cyst Disease Patients around the world.

Most patients already know there was a research grant announcement on The Tarlov Cyst Disease Foundation Website in July 2012.

That information has buzzed on the support groups, been wondered about by patients, and prayed for by all. It announcement informed us of a one-year Tarlov Cyst research grant had been funded by the Tarlov Cyst Disease Foundation. The one year grant has been implemented for the Foundation by NORD (National Organization for Rare Disorders).

The grant recipients were:

Principal Investigator: Kieran Murphy, MB, BCh, FRCPC, FSIR

Professor & Vice Chair, Medical Imaging
Deputy Chief, Medical Imaging, University Health Network,Mt Sinai Womens' Hospital
Director, International Medical affairs, University Health Network, Toronto Western Hospital
University of Toronto, Ontario, Canada


In addition to this announcement I’ve been authorized to inform Tarlov Cyst Disease patients within, Ontario, Canada, that they are invited to take part in the following study;

“A genetic analysis of patients with Tarlov cysts”

The study is led by Dr. Kieran Murphy at Toronto Western Hospital.  

The purpose of the study is to determine whether or not there is a relationship between Tarlov cysts and three connective tissue syndromes, (Marfan, Loeys-Dietz and Ehlers-Danlos syndromes).

Participants will be assessed by a clinical geneticist who will determine any features associated with these syndromes.  Those participants who show one or more features will go on to have genetic testing of those genes associated with the three connective tissue syndromes (a blood sample will be taken). The appointment will take approximately 2 hours.

If you, or anyone you know are interested in taking part in this study please contact 

Abby Skanda - askanda@uhnresearch.ca 

 the study coordinator who will contact you directly. 

This is an exciting time for Tarlov Cyst Disease Patients within Ontario, Canada and around the world. For the first time in Canada researchers will be searching for answers to some of the many questions on the minds of every patient, family member or friend of a person diagnosed with this dreadful disease.

Please come forward, let your pain and suffering help Dr. Murphy and his staff find the answers we all need.

This is for me, my TC Cysters, our families and for the many generations to come.

With love to all!

Sherri Jones

Please forward all information and inquiries to; 
Abby Skanda  - askanda@uhnresearch.ca 

Half Full or Half Empty? It's All About Perspective

The following was written by a Tarlov Cyst Disease Patient (TCD), who felt the need to share her own personal thoughts based on her own personal experience of living with this disease. 

This post refers to some of the more common experiences that TCD Patients live with everyday. Hopefully some of you will find this post and be grateful for the information within. I hope it helps you find answers and understanding, but most of all I hope it helps you find some peace and relief; A gift that only the truth can bring.

Those of us diagnosed with Symptomatic, Tarlov Cyst Disease know first hand how painful and destructive this diagnosis can be.
The fear and lack of understanding makes it a disease capable of stealing lives and destroying families, but a diagnosis of Tarlov Cyst Disease does't have to mean the end of your life. It can easily be the beginning of a new one..... 

It all comes down to your own personal view;

Is the cup half full? 

Or 

Is the cup half empty?

_____________________________________________

Written and submitted by: Teri K, TCD Patient, California. USA.                  

I know I don't post a whole lot or even kick in and respond a lot these days. We all know how that comes about; because we all go through up times and down times. I do want to say something, though, because so many people are having some real painful down times. 

Some of us are new to TC and others have been suffering with TC and so many other types of problems for years and years and years. 

When I was first diagnosed I figured something would come along and make the pain go away. After about 6 months, while I was up at 3 AM, crying because I was in so much pain and it was still 3 hours to my next dose of Vicodin, I suddenly realized how it was that people accidentally OD'd on their narcotics. I also realized how people became addicted to their narcotics--almost anything seemed better than what I was feeling right at that moment. Fortunately, I had my cry and then reminded myself there was more to me than my pain. Over the last 2 years and 7 months of living with TC disease, I've pretty much found a mid-place where I can survive and the drug regimen that 
will keep me there.

I just feel compelled to share this for the post I've read where tramadol had been taken so much it didn't work anymore. I'm not a doctor so I can only go with my own experience with Tramadol. 

I've been on Tramadol for almost two years now. For the first year or so I thought it wasn't really helping. And when I think a drug isn't doing me any good, I begin tapering off that drug. I did the same with neurontin. If it isn't helping, then I"m not taking it. 

I hate taking drugs! 

I'd begin to taper off the Tramadol, or the Neurontin, and slowly I'd realize I was in a whole lot more pain. I went back up to my regular dosage and I was no longer in as much pain. It took the "edge" off as many of us describe it. 

Tramadol was meant to be taken every day regularly at the same time. I take the full 200 mg a day. I set my alarm clock to make sure I take it at the same time every day. When I was forgetful and not regimented in taking my medications, I had more problems.


On to another topic; 
If you have children, don't hide your disability from them--all you teach them is to hide their own pain and not get help when they need it. Instead, show them how strong you are and how there are times when you're down, and times when you are up. Teach them that people are valuable, and loving. 

People have so much to give. Even if a person can't walk, or maybe they can't walk more than a few feet, and often have to sit down. 

Count your blessings!


I take vicodin. I take it every day at the same time whether I think I need it or not. Do I have a tolerance to hydrocodone after all these years taking it? Yes, I do. I don't get the drugged feeling from it that I used to get. What I discovered, however, is that doesn't mean it isn't doing its job. I've tried backing off the Vicodin because I thought it wasn't working. I couldn't feel that narcotic reaction, but I discovered that when I backed off the Vicodin, my pain level increased.


So here's the truth--

Unfortunately there's no pill, or miracle drug capable of making us totally pain free. We have Tarlov cysts. There is no way to get around that. 

There are drug combinations that some of us can take that might help take the edge off. Then there's others, like Claudine for instance, who cannot take any drugs and had to learn to cope in other ways. 


I hope I'm not coming off harshly. I truly am not a harsh person. I tend to call it like I see it, however, and I want to share what I have learned in this last several years.


We are not broken! We're valuable assets to society, our friends and our families. We are excellent role models to our children. 

Ladies, we are strong and beautiful people. We cope each and every day with pain that would put most people down. Don't hide your strengths! 

If you have friends who still don't "get it" and ask you to do things you cannot do--kick them to the curb. If they can't see you, love you and believe in you, then they are not friends. 

The same goes for your family--if they aren't supportive then they need to become that way and fast. The way they become supportive is by you setting boundaries and saying, "NO!" 


I know that I am very fortunate to have friends and family who are supportive of me. I bless them each and every day. 

I know I am fortunate to have spent my life learning what makes me, me; above and beyond what I "do".  

I am fortunate not to have children who need me. I know it is all scary and some days you wonder if you will ever have another day where you aren't "spoonless". You are all so much more than your pain. 

TeriK

Invisible Disabilities; Anger and Ignorance

I can't believe how in this day and age there are
still people with the gumption to look at any person, 
with the specific person being me, and saying, "yup, 
you really looked disabled", as he showed a "thumbs 
up" sign when referring to my Mini Van being parked in 
a disability spot, with a disability sign on the front 
window. 

This is the same Mini Van I recently purchased to 
transport my new electric wheelchair with me so I could 
perhaps reach out into the world in an effort to grasp at some of the life I once had. The same Van that had my 
supportive back brace sitting on the centre console, 
with my new months collection of pain medications in 
blister packs sitting in a Shoppers Drug Mart Bag on the passenger floor. The same Van that had my walker in the back, the same walker that was becoming harder and harder to get out of the van to use.

I can't believe how shocked I was to have some random 
person speak to me like that, but more so, how 
shocked I was at my own angry response to this his 
comment.

It's hard enough to live with this "invisible disability" without 
having to tolerate the ignorance, and uneducated gall 
of some man who seems to have a desperate need, 
without being invited in any way, shape or form, to open his mouth on something that has nothing to do with him.

You know the shocking part? If I had seen this man 
anywhere I would have figured him to be an educated 
man. His entire appearance and presentation speaks 
intelligence yet when he opened his mouth all 
appearances are overshadowed by the ignorance in his 
words.... I guess I misjudged him the same way he 
misjudged me, but I wasn't the one who made that 
comment, or any comment at all until I was insulted 
publicly in front of a busy shopping center for no apparent 
reason.


Just because I don't look sick as you see me limping out 
of grocery store, doesn't mean I'm not injured or 
suffering. It just means that at that moment my 
medications are working well enough to allow me to be 
stubborn and determined enough to suffer instead of 
fighting to get my walker out of the back of the van to 
get a small box of garbage bags.

                           

"Invisible Disabilities" 

can be just as disabling as any other disability. 

Just because you can't see it doesn't mean that I and others like me don't suffer.

This was the first time I've ever had to face such 
ignorance since I began to suffer from this rare spinal cord disease. I do hope it will be the last, but unfortunately it probably won't be.

Will this ever change?


For those of you who've experienced anything like this, you have my deepest sympathies and a heart felt apology. Not because I ever remember doing anything like that to anyone, but for the misinformed, uneducated people out there who feel the need to insult things they do not understand..

No one deserves this, but you never truly know how it 
feels until it happens to you.

"Forgive them Lord, for they know not what they do!"

I guess I have to start believing in that myself..

Tarlov Cyst Disease International: Patient Map

LINK TO: TCD International: Patient Map


Tarlov Cyst Disease International: Patient MapIn recent years Tarlov Cyst Disease patients have connected on an International level allowing access to new and older information for "new" or "experienced" patients.

Our Goal?

To ensure quick and easy access to the growing International Tarlov Cyst Disease, Peer Support Networks.

This Map is, and will forever be, under construction.

As new patients are diagnosed we hope to add their names, information and International locations.

The development of this Map is aimed at showing how many of us are out here, and that maybe this rare disease is in-fact not actually that rare, but instead a misunderstood and commonly misdiagnosed Disease.

We welcome all Diagnosed Patients to share their location, diagnosis specifics, age, photo's or any other information you feel best describes how a diagnosis of Tarlov Cyst Disease has effected your life.

We look forward to meeting you, helping you access any and all Peer Support Groups or Programs available and also adding your name and information to the Map that will speak through image, what some too easily deny.

Please feel free to contact; 

Sherri Jones or Sharon Jones-Gillece
tarlov.canada@gmail.com