Diagnosed with a Tarlov, Perineural, Meningeal or Arachnoid Cyst?

Too many times Tarlov, Perineural and Menigeal Cysts are seen as an incidental finding on most MRI's or CT's. Most Radiologists and Physicians don't even bother to tell you a cyst was found believing they are mostly asymptomatic. Even if the cyst is recorded and mentioned in your MRI or CT report, which is not always the case, most Physicians assume there is no way this little cyst sitting on, in, or around your spinal cord, could be the cause of your developing, ongoing problems. Sometimes the Physician is right, but there's currently a long list of patients, including myself, who can prove that sometimes they're wrong. Sometimes that little, incidental cyst is exactly what is causing your agony. There are living examples, such as myself, who can attest to how these cysts can indeed be symptomatic and how they can detrimentally effect your life.


When I was first diagnosed I was totally stunned to learn that not one Physician I knew, and I know quite a few, had ever heard of these cysts. Then when I did finally find Doctors who'd heard of these cysts very few believed they were symptomatic and responsible for my ever increasing, excruciating and debilitating chronic pain.


I ended up having to dedicate the first year after being diagnosed trying to find out as much as I could about my spinal cord, human anatomy and physiology. I had to find out what they were, what caused them and what could be done to treat them. It wasn't easy to figure out what was relevant information, what was hypothetical jargon, and what was bias based on professional arrogance. Sometimes it can be very difficult to recognize the difference, but I'm going to give you some links that just might make your journey a little easier than the one I traveled. It can also make your journey easier than most of the TC sufferers, or Tarlovians I know.


Consider this a gift, but remember there are limits to every gift. You will still have a lot of work and learning to do on your own, but these links will help make the work and the learning a little easier to achieve.


I wish you luck on your journey and wish you all the best of outcomes.


Remember. Be positive, don't give up hope and always pay it forward. Just as I help you today, perhaps the day will come where your knowledge and experience may just be what a scared, unknowing, newly diagnosed sufferer may be in desperate need of. Sharing is the key. Be proud of what you've learned, share how you learned it and direct anyone and everyone affected by this illness to the best of what and who you know.


We are never alone..... we have each other. Please help us to keep it that way....

Ontario MVA Insurer Exams? A legal scam?

I hear a lot about what the insurers rights are, and what a claimants responsibilities are and even though I know we (claimants) have some rights such as;

1. The right to send the insurance company doctor other medical records and reports you want the doctor to consider.
2. The insurance company must arrange for your transportation to the examination if you request it.
3. The insurance company must make reasonable efforts to schedule the examination for a day and time that is convenient for you.
4. There are time lines that govern when they can ask you to go to an insurer exam.
5. The insurer exam must be conducted at a place reasonably close to your home.
6. You have the right to get a copy of the report.

but what about the other rights that we should have to protect our interests and to insure honesty in the report?


Why do all insuring Physicians say we are not allowed to have anyone else in the room for the assessment? What do they have to hide? What's the need for secrecy for if we, the person being insured, wants a person there to support them? If a claimant has asked for a person to be there with them then obviously they feel comfortable enough to be honest in front of them. Do insurers examiners really have the right to refuse, or is this just an assumed right that we follow believing they know something about the rules that we don't?


What about their oath? Does that just disappear when they take on insurance examinations?


What if they lie, or write their report in a way that is misleading? At some points some of their comments even feel like a personal attack on a claimants character. How do you address that? Is there any way to prevent them from ever doing that again? Like filing a complaint with the Physicians and Surgeons board?
I've had several insurer exams in the last year, and the results, and even some of the comments made make me think what they're doing and saying, cannot be legal under their oath.


I know my Lawyer will address the comments made in the assessments and it's my Lawyers job to fight against the assessors claims, but I honestly feel that some of the things said in the report, or during the assessment could easily fall within the realms of a viable complaint to the Board of Physicians and Surgeons.


If we all know that an insurers exam will always go against the claimant, why is that allowed to happen? Obviously someone is lying somewhere if the standard procedures as we know them; Insurers Exams are always against the claimant, Lawyer exams are always for the claimant. Where is the honesty in that process? Where is the accountability? Why aren't the shady way things are done addressed?


It's a rough road for claimants, especially claimants that truly are ill and in constant pain; like me.


My stress level is always high and every exam, every test, every report just makes the difficult life I'm living just that much  more difficult.


No wonder so many people don't go the legal route and fight for what they know is their right.


It's a broken system.... what can be done to change that?

Act One: scene one - Insurance denial...

Who knew???? The insurance sent me to a bunch of specialists who conveniently said, "there are no signs of any injuries that can be attributed to the specified MVA"...........  Interesting!!!!


I knew the results would be in from the insurance assessments today, and for the first time ever something arrived exactly when the claims adjuster claimed it would. I was impressed for a short moment before the reality hit me of what these assessments actually meant, or could mean to my life. In one quick turn of words, these results could momentarily control the route my life would take in the immediate and near future. Approve; quick effect. Deny; slow stressful effect.  Unfortunately the path I'm now on is the more stressful, later of the two, but thankfully I'm no longer reeling from the shock. Now I'm back in battle mode with confidence fueled by anger, a feeling of unfairness, even perhaps a hint of descrimination and a determination to fight for what is right.


Even though there may be many times when I feel, as I felt today, that God has abandoned me, or chosen me to suffer, he hands me a gift I couldn't currently live without; strength and determination. Everyday for the past year I thank God for the gifts he has given me that enable me to face this fight with confidence. A passion and respect for the power of words, a belief in fairness and personal rights, a quick comprehension and the mental capacity to face whatever may come my way.


I've always believed that everything that happens in life happens for a reason and my current lot in life is a perfect example of that belief. I may currently be weakened by my physical disabilities, but my mental abilities seem to be increasing with each limited achievement. In this situation even little successes mean a lot. During this journey I have experienced a massive amount of small successes some of which include; new friends who understand my illness and the barriers it brings, friends and family who support me and assist me in my battle, finding and being accepted by a Lawyer who gives determination and skill new meaning, and a limited number of specialists who have given me their time, for free I might add, to help educate me on what is happening to my body, how it happened, the factors involved, and the possible outcomes of several different treatment, or non treatment, options. Every lesson learned is one more success to add to the list and I am grateful for every one.


Today I was denied what was right by a system that misleads it's consumers, but tomorrow I will take up the battle once more on the path to proving accountability.


There is no question to whether or not I will win and get what I need and deserve, it's just a matter of when.

Another Day in the life of a Canadian

Today is Wednesday, March 9th and it's the day before I get the results of nine medical assessments. Neurosurgeons, Neurologists, Orthopedic Surgeons, Rhumatoligists, Psychologists, Occupational Therapists, and on, and on, on. They've all been given the power to decide if having the spinal cord surgery I so desperately need will be easily accessible, or just another enormous, never ending battle.


Just the thought of tomorrow makes me very nervous, but I know that at the end of the day, no matter what may come out of that long list of medical assessments, it is what it is. There's nothing I can do about those results except keep trying, keep fighting and keep believing I deserve better than I've gotten so far from the Canadian Medical community. I deserve treatment.


Having a rare diagnosis brings about an extensive list of obstacles. Most of the obstacles don't even make sense and are often contradictory, but all of those obstacles include one common factor; fear. Fear of pain, fear of ongoing and developing damage as my illness is left to run amok without care. Fear of surgery, fear of not having surgery, fear of not being able to have a choice between surgery or no surgery. Fear of my future, fear, fear and more fear. I'm sure I could go on for an hour, but I won't.


How do we overcome fear? In my experience a person may not be able to overcome the original discomfort or the mental and physical impact of the initial sense of fear, but we do manage to overcome fear as long as we are determined enough to face it and march right through to the final result. I, like most others, have no choice but to face fear head on. If I didn't face it, or wasn't willing to face it then I might as well just give up, find a short pier and take a long walk. Thankfully I'm not willing to do that, so I face it and just keep on marching. Even if that march is done with a limp and slow deliberate steps.


Tonight I went to see the one and only Physician I ever met who has ever heard of, or dealt with my type of illness. He's a walk-in Physician at a local clinic and he's great. He actually takes the time to ask you questions, find out what's really going on, and figure out what he should or could actually do to help you with it.


Tonight he was seeing my son about a torn ligament from a bad slip and fall. He treated my son, then I asked him if he remembered me. He sat back and looked at me and said, "you look familiar." That's when I reminded him of who I was just by naming my diagnosis, Tarlov Cyst. He smiled and looked at me with a warm, hesitant smile and asked how I was and if I had gone for surgery yet. I told him no, but I said I was booked for surgery this June with Dr. Frank Feigenbaum. He was surprised to hear that name as he'd never heard it before. The only name he knew was Dr. Henderson in Washington. After a few short minutes of informational conversation I asked him one question just before he walked out the door. "Would you ever be willing to go on camera to say what you know of this illness and talk about the lack of treatment available in Canada?" He smiled again, and considered it for a minute then said, "sure, but I can't break patient confidentiality. But yeah, I'll do it if you need it. Things have to change here " I knew he was referring to Canada.


He had told me a long time ago that he had a patient diagnosed with the same diagnosis as me. He had done some research on the disease and then referred her to Dr. Henderson, another Neurosurgeon who specializes in Tarlov Cysts in the States. Before surgery this patient couldn't even stand up straight and was in constant, excruciating pain. After surgery she slowly got back to normal and is now back at work, living a full and productive life. Now that's a story that should be told!! The stories that prove this surgery can and does work. The stories that prove Canadians need and deserve access to this treatment.


All I can say is thank god for this Doctor and his dedication to his patients. He is one of the rare Physicians that has experienced and researched this illness hoping to help his patient find a way out of her Tarlov Cyst hell. This dedication to to this patient, with her best interest at heart, managed to find her a way out. Unfortunately, the only way out for patients in Canada is in to fight for surgery in the States seeing as Canadian specialists don't even know what to do or say about this illness, and this is what needs to change.

Multiculturalism and Medicine; Wherever the two shall meet.

In a culturally diverse society like Ontario, Canada, cultural influence is seen on every face, every corner, in every shop window and almost every conversation taking place on our Canadian streets. We, as born and bred, multi-generational Canadians are to be included in this ever expanding mosaic of Canada’s Multicultural image. Multi-generational Canadians maintain our own cultures and belief systems, which from one group to another can differ widely. No two are the same.

I was born in Corner Brook, second largest city in Newfoundland, but, even on our little Island diversity has shown its face; from Baymen to Townies, we all had our differences. We may not have always agreed with each other, yet, for the most part we learned to coexist in peace.

In my mind, and I admit I may sound a bit idealistic, Ontario and even the broader spectrum of Canada could learn a lot from our little island. Understand, accept, live and let live. We are all a small part of what is called the human race, the one and only term that unifies us all.

Unfortunately for all of us even Canadian Health Care hasn’t been spared in the battle for cultural right or wrong. From naturopathic to ancient and into traditional medicine, the influence of our separate backgrounds and beliefs are witnessed. We’ve all probably experienced it at one time or another, even if we didn’t recognize its influence.

Canadian Medical Schools address the issues facing Medical Practitioners and addressed the issue in a six part series titled, “Multiculturalism, Medicine and Health”. In Part one, the author, Dr. R Masi, stresses, “the importance of understanding community needs, cultures and beliefs; the active interest and participation of the patient in his or her own health care; the importance of a good physician-patient relationship; and the benefit of an open-minded approach by physicians and other health-care workers to the delivery of health-care services”. Can Fam Physician. 1988 October; 34: 2173–2177.  My own personal experience has made me believe this topic should be part of a regular refreshing program for physicians.

In 2009 following a series of tests, one being for Cholesterol, I was told my Cholesterol levels were well above what’s considered to be a healthy range. My ex-physician, a believer of the ancient religion of Jainism, which holds that all forms of life are sacred, took a path I never would have expected in addressing this new health concern. Instead of discussing possible treatment options or management, he quickly without discussion turned to his computer, looked up a website and after writing it down on a yellow sticky note handed me the address saying, “this website will teach you how to become a vegetarian”. I have to admit, I was in shock at realizing this Physician, one I’d been seeing for almost ten years, was not concerned with respecting my cultural beliefs or practices, but, instead chose to influence my behaviors with his own beliefs. I have since changed Physicians and stress the importance of respecting my beliefs, my cultural background and me.

If Multiculturalism is ever going to work, and I know that’s a constant, ongoing debate in Canada, we have to learn to respect each other, even if we don’t agree, understand or support each other’s cultural choices. We are of one race; the human race and I strongly believe that if Canada is to succeed as a Multicultural society, it’s the acceptance of this thought, this understanding that will see Canada through to success.