Are you Canadian? Have you been diagnosed with Tarlov Cyts Disease?

I'm sure you can see from this blog that most of what I write about is Tarlov Cyst Disease. 

Since this blog began, most responses to entries and views on the stat-counter are from Tarlov Patients, Medical Clinics, Physicians, Hospitals, Journalists and Writers from around the world.

Canadian Citizen Daily Battles

is looking

for

Canadian Tarlov Cyst Patients

Symptomatic and/or Non-Symptomatic

I am looking to find as many Canadian Tarlov Cyst Disease sufferers as possible to build a database of issues, experiences and references, enabling us to learn from each other and support each other through the many individual problems facing Canadians across Canada. 

I know through research that there have been a minimum of 17 Ontario WSIB Cases, and I couldn't even guess how many other Tarlov patients there are out there, unaware that Tarlov Cysts may be the one thing causing the many back and Neurological problems they are experiencing. 

Many different forms of Trauma-related injuries, including slips and falls, motor vehicle accidents, work-related injuries and many other forms of injury, bring on most symptomatic Tarlov Cysts.

It seems that the "Rare" part of Tarlov Cyst Disease perhaps isn't as rare as I, or any of us, may have thought initially. There are many more cases in Canada than any Canadian patient has been led to believe. It's time to reach out and say, "Hello"! 

I'm now publicly reaching out to every 

Tarlov Cyst Patient I can find living within Canada.

 The aim is to learn from each other. 

Learn your stories, find out about your Journey, 

the benefits and the barriers provided by our 

Municipal, Provincial and Federal Service Providers

and our Provincially managed 

Canadian Medical and Legal Systems.

Please create a new email, with a pen name if you need to protect your identity. 

All confidentiality will be maintained, and your name, and story will not be shared until you choose to do so, but I would need to be able to add your information to your Province list, which would include the following; 

• diagnosis details
• diagnosis date
• a short, personal statement written by you, providing basic information of your personal experience.

I am hoping to bring together ALL Canadians in the fight for recognition of this "rare" but devastating Disease. 

I'm confident we all have skills, experience and information, either past or present, that may be able to assist others with their fights with Physicians for care and Neurological Communities in our push for acknowledgement and understanding. 

We must educate Compensation Boards and Insurance Companies to protect valid Legal Claims for justified and entitled rights for trauma victims across Canada.

Together, we are stronger; Together we are no longer alone.

Please email 

Sherri Jones at:

sherri.jones@live.ca 

 I will get back to you through email as soon as possible.

ALL CONFIDENTIALITY WILL BE RESPECTED UNTIL INFORMATION RELEASES APPROVED.

Thank you for your time....I  look forward to hearing from you!!!!

Sincerely, 

Sherri L. Jones

TheSpec - Lyme disease patients at risk in Ontario (Click here for Article)

TheSpec - Lyme disease patients at risk in Ontario

It's unbelievable how day after day I come across stories about how Canadians are treated like a criminal for "daring" to say " I know I have -------!!!", which could be any of the many diagnosis that appear to currently be sitting on Canada's "DO NOT DIAGNOSE LIST".

I discovered the "DO NOT DIAGNOSE LIST" when I was diagnosed with Symptomatic Tarlov Cyst Disease, and now here's a story about how a diagnosis of Lyme Disease can put any other Canadian patient in the exact same position, as those with Tarlov Cyst Disease. The only difference? When you tell someone you have Tarlov Cysts they look at you like you have ten heads and say, "What's that?" But when you tell someone you have Lyme Disease that same person would probably recognize the name, but not suffer the same miraculous look of shock that the Tarlov Cyst name imposes.

I'm sure, or at least hope there is actually no such list, but considering I've been touched by both I am now truly beginning to wonder.

No it not a definitive diagnoses yet, but according to a Dermatologist I'd seen in 2006 to look for treatment for an intermittent, very strange, red, repeated and cycling rash. A rash that I always explained this way. "It's like a rock being dropped into a still pond and the ripples of the water move outward until they disappear and the surface becomes smooth and calm again.". That's my rash, the rash I've had for years on and off, intermittently for probably many years.

The visit to the Dermatologist appeared at first to be a waste of time as during the appointment when at first sight the Doctor had no idea of what it could possibly be! Then he offered to do a biopsy of one of the rash red spots and of course I said a quick "yes"! I just wanted to know what it was and get rid if it... so the biopsy was done and now all I could do was wait for a report.

Several weeks later I asked my Physician what the report said, and I was simply told I just have a sun allergy and I should be using a stronger sunblock and minimizing sun exposure. Made sense to me, and at the time I had not yet hit my "do not trust" limit with my Physician, so I just went along...... and yet again that may have turned out to be another of my extensive list of major mistakes with this Physician.

Today, I was looking through my medical files, which I have complete copies of and I found the Dermatologists report that said nothing about a sun allergy. What it does say as a diagnosis is: "Lymphocytic Infiltrate" with a differential diagnosis of, "Lyme Disease".

When I did my research the extremely similar symptoms of Fibromyalgia, another of my many, non conclusive diagnosis, sounded extremely similar to that of Lyme Disease. However, the most important symptom that quickly connects a diagnosis to Lyme Disease is the Lyme Disease rash; a rash described, intermittent and looking exactly like mine!!! Apparently the presence of that rash is one of the most confirming aspects of a Lyme Disease diagnosis.

So here I go back into research mode, the same type of research I had to do for my Rare Diagnosis of Symptomatic Tarlov Cysts. And what did I find when I started research on Lyme Disease? I found this Spectator article written earlier this year, and many other recent articles just like it confirming that I just might have another difficult time, within Canada, to get properly diagnosed and is once again controversial within the our borders!!!


I was once very proud to be Canadian, but there have been many times in the last year, such as right now, that I wish I could have private health care, be living somewhere else, somewhere less conservative in their Medical thinking. Some place more advanced in their abilities to diagnose, manage and treat these rare and difficult, not to mention detrimental to our health diseases!!!

So here we go again....... down the road of trying to get a rare test done that according to the attached article is not easy. Apparently Canadian testing is not capable of providing a definitive result. Again I may need to look south to get an accurate diagnosis.

There is however one thing that the Lyme Disease has going for it that I never had when diagnosed with Tarlov Cysts....... there is already a long standing, informed and educated advocacy group specific to Ontario and Canada. To me that's a huge positive seeing as with Tarlov Cysts there were no Canadian specific advocates already in place.... but I am still working to change that one. But with my health issues its great to know there's somewhere I can turn for advice, support and suggestions.

The facts I've discovered in this search leaves me with one really big question, "Where is Canada, and our internationally admired Health Care Programs, when I and other Canadian need you most?"

Again, I am forced to say once again. "No Canadian should have to do so much work, or fight so hard, while they are already suffering greatly, everyday, due to the illness they're fighting for recognition for?" 


As with Tarlov Cyst Disease, we Canadians deserve better when living with Lyme Disease,
Please, wake up, smell the coffee.... I'll even make it! But just wake up and see what is happening to us Canadians listed on the "DO NOT DIAGNOSE LIST"!!!!


Enjoy, welcome and I hope you can learn from my learning................... education truly is power!!!
Sherri Jones

Epidurals, Myelograms, Lumbar Punctures; Beware, it may come back to haunt you.. (Click here for video)

On May 19th, 2011, I posted a story supplied by Louise Cabonneau Vermeiren titled,

 "Please Help Raise Arachnoiditis Awareness"

Today, thanks to Sharon Gillece, an Arachnoiditis and Tarlov Cyst Patient, I'm able to connect you to a short, although maybe older, youtube video that helps describe the cause, symptoms and confusion surrounding a diagnosis of Adhesive Arachnoiditis.

Please remember, there are many things our Doctors don't tell us, and not everything comes with a warning label. I hope this post can help prevent you from ever having to suffer the possible, and devastating effects of Epidurals, Myelograms or any other type of Lumbar/ Spinal Cord Puncture. 

We are, and always must be, our own health advocate!  
Please pass it on.........
Sherri

Tarlov Cysts: Incidental Findings?

That’s what Tarlov Cysts are usually called. Incidental Findings; Something found that does not relate to the symptoms, which brought about the need for the diagnosing MRI or CT. Something unexpected, something found by accident.

When I came online and did a search for the meaning of “Incidental Finding”, the first thing that popped up was an article published by the Globe and Mail, dated September 28, 2010.

I have added a link to this article in the links column to the left of this page, which is exactly where I think this story, belongs.  Why? Because for Tarlov Patients one of the first things we hear when we’re told about the cysts growing on, or in, our spinal cord is, “there was a spinal cord cyst found in the MRI, but it’s an incidental finding. It’s nothing to worry about.”

Let me ask you, the common person, not the Physician or the specialist. If I was seeing a physician for severe neck pain and cramping, nerve pain and weakness in my arms, shoulders, neck and hands then I would think hey, maybe this is what’s causing my problems…Or if we did this test looking for an explanation of why I can’t sleep at night and when I do manage it, I wake up with an unbelievable headache, then I would automatically think that a cyst found on my spinal cord in the left, C5-6 area might have something to do with my symptoms. Especially if that cyst was located dangerously close to my left vertebral artery. If that was the case then I don’t think I would still consider this cyst as merely an incidental finding and, “nothing to worry about.” In my personal story that was exactly what happened. That was the case.

Once I knew I had this cyst, and I have to admit I’d never even heard the word before, I came home, did some research and found out that if you have one spinal cord cyst then chances are you have more.

When I underwent another MRI, this time for the Lumbar/Sacral area; again the report said, “Incidental Finding”. Again, I have to ask you. If you had over five years of low back pain, consistent nerve pain in your legs, bladder retention, bowel issues and weakness in the low back and legs, then would you not think these symptoms might have something to do with the giant Intradural Meningeal Cyst that was presently destroying your entire sacral canal? The same cyst that, according to the radiologist report claimed, “the cyst completely replaces the central canal, and nerve roots inferior to the S2 are not well visualized, likely displaced by this cystic lesion.”  Likely displaced?

During my trip down the Tarlov Road I’ve learned so many things that truly shocked me about our medical community. One of those major shocks came from medical terminology, and I’m not speaking about the complex medical names or procedures themselves, I’m referring to the not so simple use of the English language. Sometimes I feel that as I read these medical journal entries I am reading legal literature with terminology and procedures that detract from the laymen’s ability to comprehend what is actually being said. It’s like a word puzzle. Something simple said in a difficult way with the major goal of making you feel stupid and unable to question the specialists who will, or will not, speak to you about your diagnosis. Unfortunately, for myself and the many other Tarlov patients around the world, we’ve found many more Specialists who wouldn’t talk about this diagnosis, over the ones who would.

It seems that in Ontario, Tarlov and related spinal cord cysts are a topic that most Doctors within the medical community would prefer to avoid. Mind you, considering what I and others have been told when someone does take the time to talk, I think I’d rather them not say anything and wait for a proven, in practice specialist to speak to me about a diagnosis they’ve worked hard to understand.

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.