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

Sometimes We Have To Stop And Smell The Roses.

A Link To Some of the Most Amazing Beauty Our World Has to Offer...

THE AURORA

Please Enjoy Then Share. 

Put a smile on someone else's face.

For Americans in Pain please support this US Petition: First Do No Harm: The DEA targets Physicians who treat their patients pain.

Canadian chronic pain sufferers aren't the only ones suffering from the new, and often excessive prescription controls that are currently threatening Physician interest, or willingness to provide proper pain management to those in need. According to Science Daily the US is also following suit; or perhaps we're following them?  

Either way, pain management for patients living with multiple levels of chronic pain are being attacked by Government policies in an attempt to crack down on illegal drug use by way of prescription drugs. 


As a chronic pain sufferer this is definitely the last thing I, or anyone suffering the tortures of painful, often untreatable disease needs. Not only are we forced to suffer from horrendously painful diseases that no one seems capable of explaining or understanding, but now the only recourse left to us is being monitored to the point of fostering fear of recrimination, or undue stress leaving many Physicians to wonder if the possible impact is worth the effort. 


In too many cases patients in need of pain management already suffer through improper care due to personal attacks by being tagged as "druggies, or "addicts" looking for a fix! In addition, many chronic pain patients are tagged as "hypochondriacs" suffering from psychiatric illness and the recent increased prescription oversight is now adding to what was already a challenging issue. With these types of barriers where are legitimate chronic pain sufferers to turn? If neither Doctors or emergency rooms are willing to provide what the patient actually needs, where are pain sufferers to turn? What are we to do with this debilitating pain we're forced to live with? 


I have personally witnessed what addiction can do to a persons life, not to mention the effects the addiction has on the lives of those around them. Through experience I can certainly understand the need for some control, but where do we draw the line? Where is the accountability to the Physicians whose loss of professional ethics encouraged and allowed access to these highly addictive prescription medications? Who should actually be paying the price for these mistakes? I may not know that answer, there's certainly still work to be done, but to allow the chronic pain sufferer to suffer more than they already do is definitely the wrong way to go.


So please, sign the petition and add your name to the growing list of citizens who already signed thanks to their understanding of the issues. Please support chronic pain sufferers in their fight for fairness.

Petition 2 Congress: First Do No Harm

Societal Impact On Pain

"The Societal Impact of Pain in Europe" - 

Friday, 23 September, 2011

The World is slowly getting there. We're learning about patient realities, now if only we could get our governments and disagreeing medical professionals on board.

The Video above was for Europe,

The Video below was for Canada

COMING SOON!!

"The Canadian Pain Summit in Ottawa, ON"

April, 2012

Health Cuts Threaten Chronic Pain Clinics

As if we don't already have enough problems!!!!

Tarlov Cyst Patients across the Country have been fighting for Out of Country Care for many years, and while we still haven't gotten far in our effort for change, and increased options for relief we're forced once again by the McGuinty Government and Deb Matthews, Ontario's Minister of Health, to accept even more cuts to the only solution we have left?

Now they're targeting Pain Clinics and our chance at living a somewhat, normal life.

According to Simcoe.Com, an article written by  Chris Giorshev, MD Tariff Chair, OMA Section on Chronic Pain Medical Director, The Simcoe Clinic, Chronic Pain Care "Chronic pain clinics in Ontario may be forced to close due to new government fee cuts.  Patients will be abandoned and healthcare costs will rise. This is bad news for everyone. Chronic pain in Ontario is a serious problem." 

In addition, the letter states these changes will affect 15-19 % of the population making chronic pain more common than asthma and diabetes. He believes the consequences can be devastating when you add the increased rates of suicides and depression that chronic pain patients suffer.

According to the May 24th letter, "Canadian, workplace costs associated with chronic pain cost the system more than $37 billion per year and their healthcare costs are staggering at over $7 billion per year.  Fortunately chronic pain clinics exist to address these issues."

Please visit the article at the above link to read this letter in full.

Tarlov Cyst Disease patients are but a few of the rare disease, and chronic pain sufferers that will be affected by this massive round of cuts. So as Chris Giorshev says in his letter to Simcoe.Com, please do what you can to let the government know that chronic pain patients deserve to be treated properly.  

Contact your MPP. It’s in everyone’s best interest. 

Ontario Health Coalition: Ontario-Wide Tour to Visit 15 Communities Warning of Ontario Budget Cutbacks to Health Care

Ontario Health Coalition; News Alert!!


• Ontario-Wide Tour to Visit 15 Communities Warning of Ontario Budget Cutbacks to Health Care 
  Most Ontarians don’t realize that the McGuinty government’s recent “austerity” budget will catapult the health system into another round of cuts and restructuring. With this warning, the Ontario Health Coalition is launching a 15 city tour across Ontario to prepare citizens to stand up and protect local access to health care services. The government’s budget for health care is worse than even the most radical of recommendations. With the harsh new budget, the government is planning another major round of cutbacks and restructuring that will particularly hurt patients who need hospital care, nursing home placements, outpatient clinics and long-term care. We are holding a town hall meeting to discuss the government’s plans and what they might mean for our local communities. We don’t want to see any more hardship as a result of patients unable to access the care they need. With the town hall meeting, we will launching an action plan to protect each region’s health services from further cuts.
  
  
  Please click below for our full media release and *updated* details of the tour

http://www.web.net/ohc/may72012mediarelease.pdf

Sacral Meningeal Cysts Should NOT be Dismissed as an Incidental Finding

Why are Radiologists still saying Tarlov cysts are Incidental Findings on a MRI?

I would like to thank Irish Healthcare, Sharon Gillece for sharing the following research study.

General Spine

Peter _ Yoo, MD, Non ASSR Member
Shane Lee, BA, Non ASSR Member
Nikhil Bhagat, MD, Non ASSR Member
Huey-Jen Lee, MD, Non ASSR Member

Scientific Paper

Purpose

(1) To determine the incidence of extradural meningeal cysts in adult patients who underwent routine magnetic resonance imaging (MRI) of the lumbar spine for lower back pain. (2) To describe the current classification of sacral meningeal cysts and its postulated pathophysiology. (3) Literature review of the clinical significance and management of sacral extradural meningeal cysts.

Methods & Materials

A total of 584 MRI studies of the lumber spine were retrospectively reviewed. The studies were performed for the evaluation of lower back pain and were performed between May 2005 and November 2005. Pediatric and trauma cases were excluded. Ages ranged from 18 years to 80 years. Routine MRI of the lumbar spine was performed on a 1.5 Tesla GE scanner. The study consists of sagittal T1, fast spin echo (FSE) and short TI inversion recovery (STIR) sequences of the lumbar and sacral spine. Axial proton and T2 weighted images of the disc spaces between L1 and S1 are also obtained. Post gadolinium axial and sagittal T1 weighted images are only obtained in post-spinal surgery patients.

Results

A total of 7 sacral extradural meningeal cysts were identified (1.2 %). 4 of the patients were male and 3 were female with a mean age of 49 years (range 32 years to 70 years). 5 were determined to be type I and 2 were indeterminate. All of the cysts occurred in the sacral spine. 4 cases also demonstrated coexistent disc disease of the lumbar spine and 1 case demonstrated a compression fracture of L5. 2 cases demonstrated no concurrent disc disease. Of these two patients, one patient presented with sacral and lower extremity pain with paresthesia while the other patient complained of nonspecific lower back pain.

Conclusion

The prevalence of sacral extradural meningeal cysts in our study is 1.2%. Sacral meningeal cysts have been classified into three categories: extradural cysts not containing nerve root fibers (Type I), extradural cysts containing nerve root fibers (Type II) and intradural cysts (Type III). The exact mechanism of formation of sacral extradural meningeal cysts is unknown. It has been postulated that the arachnoid membrane herniates through a dural defect, which is most likely congenital. Sacral extradural meningeal cysts are generally considered to be incidental findings. However, there are several published case reports that have attributed symptoms to these lesions and these patients have undergone surgical intervention. In our study, 2 out of the 7 cases demonstrated no coexistent disc disease. Therefore, the clinical symptoms may be related to the sacral cysts. In light of these reports and our findings, sacral extradural meningeal cysts should not be easily dismissed as an incidental finding.

References

1. Acosta FL Jr, Quinones-Hinojosa A, Schmidt MH, Weinstein PR.: Diagnosis and management of sacral Tarlov cysts. Case report and review of the literature.
Neurosurg Focus. 2003 Aug 15;15(2):E15.
2. Nabors MW, Pait TG, Byrd EB, Karim NO, Davis DO, Kobrine AI, Rizzoli HV.: Updated assessment and current classification of spinal meningeal cysts. J Neurosurg. 1988 Mar;68(3):366-77.
3. Sato K, Nagata K, Sugita Y.: Spinal extradural meningeal cyst: correct radiological and histopathological diagnosis. Neurosurg Focus. 2002 Oct 15;13(4):ecp1.
4. Rohrer DC, Burchiel KJ, Gruber DP.: Intraspinal extradural meningeal cyst demonstrating ball-valve mechanism of formation. J Neurosurg 78; 1993: 122-125.
5. Robinson Y, Reinke M, Haschtmann D, Ertel W, Heyde CE.:.Spinal extradural meningeal cyst with spinal stenosis. Spinal Cord. 2005 Nov 22; [Epub ahead of print]
6. Muthukumar N.: Sacral extradural arachnoid cyst: a rare cause of low back and perineal pain. Eur Spine J. 2002 Apr;11(2):162-6. Epub 2001 Jun 23. Review.
7. Uemura K, Yoshizawa T, Matsumura A, Asakawa H, Nakamagoe K, Nose T.: Spinal extradural meningeal cyst. Case report. J Neurosurg. 1996 Aug;85(2):354-6.
8. Langdown AJ, Grundy JR, Birch NC.: The clinical relevance of Tarlov cysts.
J Spinal Disord Tech. 2005 Feb;18(1):29-33.
9. Kendall BE, Valentine AR, Keis B.: Spinal arachnoid cysts: clinical and radiological correlation with prognosis. Neuroradiology. 1982;22(5):225-34.
10. Boukobza M, Sichez JP, Rolland E, Cornu P.: MRI evaluation of sacral cysts.
J Neuroradiol. 1993 Dec;20(4):266-71
11. Bartels RH, van Overbeeke JJ.: Lumbar cerebrospinal fluid drainage for symptomatic sacral nerve root cysts: an adjuvant diagnostic procedure and/or alternative treatment? Technical case report. Neurosurgery.1997 Apr;40(4):861-4

Images

Tarlov Cyst Patient - Welcome to Sarah's Life

Once in awhile I do a random search for the words, "TARLOV CYST". I search on every search engine out there, including; YouTube. The attached video is one I found this morning on YouTube, after waking at 4am in agony; It's now going on 6am and finally the torture of sleeping on my stomach is beginning to pass.

Unfortunately, no matter what I try, I have no control over the position my body moves into while I sleep. Each time I'm woken by the pain of laying on my stomach means it could take anywhere from five minutes to half an hour to gradually push myself out of that painful position. If I'm lucky there will be someone around to slowly and carefully pull me out of bed. As my body moves I can feel every, disc, joint and connection that keeps my back and hips together crack slowly back into place. It's definitly not the best feeling to wake up too, but oh well.... such is my life.

The life of a Tarlov Cyst Disease Patient is never an easy one to live. Everyday, every night, every moment and decision is a lesson in pain, perseverance, fear, frustration and anger, but as you'll see from Sarah's video, a life suffering from Tarlov Cyst Disease can also be a very lonely one.

Many diseases present with constant chronic pain as one of the major symptoms and Tarlov Cyst Disease is certainly no different. The only difference that I and thousands of other patients have discovered is no one knows what Tarlov Cysts are and they especially don't understand what this diagnosis means to the life of the patient living with it. It's a diagnosis that comes with a very limited medical understanding.

Dear Sarah... and every other patient out there I want you to know, "you are not alone". There are many of us out here who suffer right along side you; we truly do understand many of the issues and challenges you live with.

I truly hope this post helps Sarah and many others 

connect with other patients diagnosed with Tarlov Cyst Disease. 

To the left of the posts are a long list of links that can connect any patient with existing and active support groups. There's also extensive medical information throughout this blog and of course, the Tarlov Cyst Disease Foundation; our champion of Tarlov Cyst Research, Education and Colaboration.... Feel free to contact the Foundation, myself and the other links to help you find a home in the safety and comfort of friends who know your pain...

As Sharon TCD Patient, and Tarlov Survival Moderator says, 

"With Love and xx Soft Hugs xx" . 

Come in and say "Hi!

Thank you for sharing Sarah......

Sherri
sherri.jones@live.ca

Please Support the Canadian, National Pain Strategy!!

Canaday Day

2011

"Without my pain management this would have never been possible. 

With pain management almost anything is possible!!"

Dear Family and Friends,

I am writing this email today to personally ask for your support. 

The Canadian Pain Coalition is working towards a National Pain Strategy to address the issues faced by Pain Sufferers across our great and beautiful Country.

I am sending this request as one of Canada’s millions who suffer excruciating amounts of pain, on a daily basis. My own personal diagnosis of Symptomatic Tarlov Cyst Disease, a rare and not easily treatable spinal cord disease, leaves thousands of patients around the Country and the World suffering with no end in sight. Many illnesses still lack treatment options and Symptomatic Tarlov Cyst Disease is just one of the many falling into that category, within Canada.

To date, there has been NO National Pain Strategy in place to assist Medical Practitioners with treating patients who suffer temporary, ongoing severe and extreme amounts of pain. This missing piece of the pain management puzzle is leaving too many patients with absolutely NO pain management to assist in their struggle to live productive, meaningful lives. 


Without this National Pain Strategy too many patients, including myself, are left to live their lives with severely limited mobility, or no mobility at all!

As Canadians learn daily through personal experience, main stream media, or social media about the ever-increasing challenges facing Canada’s Healthcare System, the importance of Pain Management increases and MUST remain in the forefront if Canada is to continue to support Rare Disease, untreatable diseases and Chronic Pain Canadians in need. With the current limited and quickly decreasing access to Provincially funded, Out of Country Care, treatment options disappear for many, leaving far too many patients, such as myself, with nothing more than a life of constant, unrelenting pain.

PLEASE support the Canadian Pain Coalition efforts to maintain hope, and a brighter future for all of Canada’s Pain Sufferers. Please read the below email and pass it along as much as possible. 

This is for all Canadians; for all we love.

Please visit: www.canadianpainsummit.ca and show your support by endorsing the Canadian Pain Strategy petition today!

My family, and I thank you.......

Sincerely,

Sherri L Jones
sherri.jones@live.ca
416-795-0617
www.canadiancitizendailybattles.blogspot.com

Living With A Rare Diagnosis: Plenty of Self Doubt and Millions of Questions

The following is an entry I wrote in response to an extensive Facebook conversation taking place between some new Tarlov Cyst Patient Facebook members, and some older, more experienced Tarlov Cyst Patients. 


Almost everyone who's had any experience with Tarlov Cyst Disease advocates for the Tarlov Cyst cause.


Why do I consider Tarlov Cyst Disease a cause? 


I believe Tarlov Cyst Disease and everything that can go with it, is a cause that needs a lot of attention because there are still too many medical professionals around the globe, who've never even heard the word Tarlov! This fact is a major part of the problem. 


If front-line medical workers don't know of this Disease, or the suffering that goes with it, then how can they diagnose their patient properly or be able to help them find, and receive the best care possible? This is, unfortunately a burden that all Tarlov patients share. We all have to teach the teacher when necessary or possible.


Some Tarlov Patients, friends and family members march forward intentionally spreading the news. Others pass on the news unknowingly just by talking to friends, Doctors, Nurses, family members and even sometimes the occasional stranger. Each conversation, whether intentional, or unintended is a conversation that helps improve awareness of the pain, disability and ignorance Tarlov Cyst Patients live with.


I pray these conversations never end!!


I had never intended to write such a long story about my own personal experience, but once I'd finished writing it I thought, "I don't think I've ever told this story on the blog!" But don't hold me to that.... I have a bad memory and with 47 posts so far it's hard to remember what's where....But here it is anyway.......


MY STORY:


Day to day almost every Tarlov Cyst patient asks themselves, "what should or shouldn't I be doing to help myself get better."


I and many others know that feeling and unfortunately there is no simple answer. It's more of a trial and error learning experience.


In my opinion the journey begins when the pain begins, but obviously we can't do much without a diagnosis. Many of us move on to researching and learning as much as we can about this disease, but there's one major fact you must accept and I can't stress this enough, "for the sake of your own health, you must become actively involved with your own healthcare"! It's the only way to protect your health and future from those who quickly dismiss your pain, even where there is no other reason found for your pain. 


Too many medical professionals are quick to say, "Tarlov Cysts don't cause pain" or "I can treat you!" Too many specialists and Physicians still dismiss your symptoms even when they know next to nothing about the specifics of this disease and the complications associated with its lack of treatment. You must always know enough to be able to protect yourself and your injured and suffering spine, nerves and even organs, from those who will harm even when they have the best of intentions.


Find out all you can about past and current research studies. Look into the Surgeons offering other treatments from everywhere around the globe and always ask as many questions as you can get away with. Most of all, find out their success rates on their type of treatment! If they won't or can't say then perhaps you need to keep looking. Speak to other longstanding patients, both treated and non-treated. Ask all the questions you can come up with, or just simply share your own experiences and request feedback. There are now a multitude of support groups around the world with a vast knowledge of time and learning to share. Many of those groups can be found to the left of this post. Otherwise just to a random Google search for Tarlov Cyst Disease and you'll find the extensive list of resources, with some offering support in your own area. Remember, most people love to teach, and most would love someone to listen to their stories, so listen, learn and ask.


We all must become informed medical care consumers, and that's what we are, consumers paying for a product, which in this case is healthcare. 


Unfortunately not every patients are surgical candidates, but until you know for certain that you have exhausted all available options, keep moving forward and fighting for what you and all of us Tarlov Patients deserve; Informed and experienced medical care.


As for the day to day feeling of needing to be doing something for yourself, find a way to stay active, even if it's in limited ways. 


It was that thinking that made me decide to get a Dog... His name is Rennie, which in Gaelic means "Mighty Little One". As time passed Rennie has proven over and over that he is definitely that, plus so much more. 


Rennie has made me walk at least once everyday. Whether it's a short, slow five minute walk in the rain, while staying very close to home in case I need assistance. On  one of the really rare, but good days our walk could be a one hour, slowly paced and maneuvered, hike in the woods. He's been a great motivator to ensure I keep my muscles as strong as possible while I searched for solutions and then fought for access to those solutions. 


There were many rewards to getting Rennie. He was great at making me smile, or keeping me warm on a cold day as I laid in bed and let the day, and my pain, slip away.


In addition, I started writing this blog, plus other personal writings, but they both had one common goal: To make me feel useful. I needed to feel like I had something to contribute even though I'm stuck at home, unable to walk, drive, or sit for long. 


Many of the things I've written have ended up here, then others in a private journal file, then some other, more professional ones ended up in the email, in-boxes of; Lawyers, Doctors, Neurosurgeons, Writers, Reporters, Producers and other also other patients. Writing helped to get everything out of my head and into the world. I think we all go through a type of shock when we're diagnosed and I know now, in hindsight, that mine was massive! 


I had an MVA in 2005 while a passenger in a friends car. Within a day or two following the accident I started experiencing excruciating low back pain so severe that at times I would be able to walk into Physio, and have to be carried home and placed in my bed where I'd stay sometimes for days, until I could move my legs without screaming or crying. 4 months later I was diagnosed with with Fibromyalgia and that gave my Doctor an out, enabling him to explain away every new symptom and pain. 


For the next five years I got used to not being able to stand for long periods of time. I got used to depending on people to help with lifting, moving, holding things, helping with laundry... all the things I once took for granted as a big, strong and independent woman. 


For five years I was unable to both sweep and wash my floors on the same day. During that five years I got used to being ignored and looked at like I'm a hypochondriac and a whiner. So much so that I just stopped talking about the pain and living within limitations became a new, but unfair norm. I even quietly accepted new pains and new complications, just because no one listened anyway. This was the new me and I started to get used to it, even though I never liked it for one second. 


Then in Jan 2010 I had another MVA. This time when the accident happened I was the one behind the wheel. This time I got to see close up what a Dodge Ram could do to a Honda Civic. I got to see that little car get pushed through the intersection and I got to see every window in that small car explode outwards, and I got to see a young man, a man who looked to be in his early to mid twenties, about the same age as my son, get out the car and look at me with an expression of total shock. I felt the impact, at least my knee did as I was pulled forward on impact, but I saw him move, I saw him walk and there was no blood and for some reason, in that second I took comfort in that. 


When I think about it now, it seemed like one day slowly merged into another with the first few days providing no sign of what was coming once the shock wore off. I was feeling the same old pains, then the world shifted and became so much more inaccessible as every move, every turn, every cringe, smile or tear hurt more than any pain I had ever experienced in my life!! I haven't been the same since. 


After three months of failed Physio I underwent my first MRI. That was when I was told I had 3 cervical Tarlov Cysts. 


As with most people, hence why this is a "cause", for me and many others. The word Tarlov meant nothing to me and I couldn't get into see my Physician for two weeks, so I began my research and found through the Tarlov Cyst Foundation that a specialist had recently moved to Toronto after working with an American Neurosurgeon at John Hopkins on Tarlov Cyst research and treatments.


I looked up the Doctors name and then typed it into google along with the Hospital name, specialty, and the word email contact. I found his email address quite easily then emailed him on a Sunday afternoon and enclosed a copy of my MRI results, asking if he had any ideas of what this could mean to me, or what I could, or should do. Surprisingly he replied pretty quickly and said I couldn't have cervical Tarlov Cysts, but he told me to drop off a copy of the MRI CD to him in the morning and he would look at it and get back to me. With that I dropped off the cervical MRI CD and then anxiously waited.


I did receive a letter several weeks later. It was handwritten on Hospital cover letter and it said, "You do not have a Tarlov Cyst. You have several perineural cysts. I would not treat them due to their location, in close proximity to your left vertebral artery. A main blood vessel supplying blood and oxygen to the brain". That was it, he sent me a letter that scared the life out of me and then never once returned any of my emails or phone messages. He left me alone, and reconfirmed my original belief that Physicians and now even Specialists didn't care about my health. Again my pain didn't matter, even when in my mind my diagnosis was capable of ending my life. 


After awhile I managed to convinced myself, "that's ok. Maybe they won't grow"! Then I received my sacral, lumbar MRI report that had been ordered to check for what had been causing many of the same symptoms that had developed following the 2005 accident. The old progressive symptoms were the same symptoms I was now experiencing in my upper body. My belief that my cervical cysts may not grow was totally destroyed when I read the report that stated, "this patient has a large sacral cyst measuring 5 x 1.6 x 7, causing major sacral bone erosion." I panicked and couldn't breathe as the tears came to my eyes and worked me into a panic. All that kept going through  my head was, "why me?", "Is this a joke? A bad dream?" My world changed and hasn't stopped changing ever since. It's still changing with every MRI, every new symptom, every new day where I could hardly move, let alone walk.


So that was it! I cried, and paced, then slept, but again I'd lost faith that I could find help, or be treated. That was until I found the National Organization for Rare Disease (NORD) Forums. I also reached out, like most patients do, to the American Tarlov Cyst Foundation and shortly thereafter I was contacted directly by Reta, the Founder and CEO of tarlov Cyst Foundation. 


Reta and I talked for awhile as I sat in the tub staring off into nothingness. As Reta spoke I became closer and closer to crying as I explained my specific situation. I knew that at any moment I was going to break as the fear, then anger built up while visions of the dreams I had for my future fluttered through my head.


So many of my hopes included my ability to be a supportive, loving and healthy Grandmother to my newly born Grandson, and a Mother to my one and only son who'd recently become a father for the first time, and a Daughter to my disabled Mother, who helped make sure she had what she needed.... shopping, banking. My Mom and I have always been close, but now I was unable to do even the smallest thing for her, or me.... 


I couldn't stop the other thoughts that always, and to this day still depress me. Questions always circled through my mind, thought I wish I could just erase and forget, but who can really ever stop wondering about theirs dreams? What about my dreams of travelling, gaining experience and ability in photography so I could take amazing photographs of the places I'd been and the people I met. 


I wanted to tell stories of Canadian beauty in beautifully descriptive articles that introduced travelers to the many glorious adventure spots within Canada, and anywhere else I went. I wanted to be a Writer, I wanted to be free to roam and experience the world first hand. I wanted to see the places I'd only read about and I wanted to produce documentaries that told stories and educated viewers on what was happening next door, within their City, Province, Country or World. But instead here I was sitting in what had become cold bath water, staring off into space as Reta tried to encourage me, and tell me that there's still hope and possible treatments. 


Reta informed me of how research and public awareness was advancing. She was so kind, so gentle, but strong and informed. She tried to share her wealth of experience and understanding, but all I could think of was, "what will happen to my son, seeing as I was the only parent he had. What about my Grandson? He had no Grandfather in his life. .... would Khellen lose contact with the Newfoundlander side of his heritage? Would he lose the opportunity to see his Grandmother be foolish and act like a kid, just so I could see him laugh as we made happy memories together. 


This diagnosis was threatening to take away everything that mattered, so what was there to live for? That's when I got really angry then unbelievably stubborn. 


I began a nightmare search to find a Lawyer to take on a controversial, rare disease made symptomatic through the two MVA's. Everyday I moved through a fog of pain, shock and depression, but everyday I made a new call, a new appointment until I finally found a strong, determined Lawyer to help protect my right to a future...


Then I called one of the few, highly recommended Neurosurgeons capable of properly diagnosing and treating Tarlov Cysts. His name is Dr. Frank Feigenbaum, and when I called his office to inquire on what was available, how it worked, and if Dr. Feigenbaum could treat what was diagnosed as an untreatable cervical cyst, and a large sacral cyst, I was met with kindness and hope thanks to his kind and supportive staff.


Through a two year lengthy battle, and a lot of begging pleading, arranging and convincing, I finally managed to get my sacral surgery in July of 2011 and I will never regret it. Even if this surgery ends up making me worse, or even the same, at least I can say I tried and sometimes all a person has left is an effort to try.


I'd said earlier that I am now 7 months post op, and for the longest time I thought I was doing great! I was getting excited about life's possibilities, and I'd even began to dream again when I finally got my post-op MRI that discovered something that could be a problem, but a easily repairable problem. Not a treatment issue, but a "my body's ability to heal" problem. I'm still waiting to hear from Dr. Feigenbaum, so I'll wait until we talk to share more, but even if this is a problem I still have faith that he has the ability to help me figure this out and get through this, but even more, I hope I have the strength to try, try, again.


There's a little story I was told by a Toronto, elderly and partially retired Neurosurgeon that has always stuck with me through all of this. 


His little explanation has helped me understand why one person may succeed and be renewed by a difficult surgical treatment, where another person with the same treatment may not respond, or recover so well. His story goes like this: 


Picture 10 men. All 10 men are the same age and in equal physical health when they're given the exact same diagnosis, that requires the exact same treatment from the exact same Surgeon. 


All ten men have their surgery then all 10 men are moved into recovery with the same post op surgical rules and medications. 


Within hours of waking 7 of the men are in excellent spirits, sitting up chatting and look forward to their release. The other 3 are not so lucky. They lay in their beds suffering excruciating pain with no relief from the medications, and their dosages are increased to help them manage the pain. 


The 7 men who came out of surgery and quickly recovered were released and walked out the door with no signs of the surgery they had just undergone. The other 3 men remain in hospital for several more days, but their pain doesn't improve. 


Two weeks later, the 10 men return for post op follow up. The seven men who'd done well were still in great shape and appeared to be healing properly.


Out of the 3 men who'd suffered following surgery, 1 appears to be doing better, but is still not where he expected to be in his recovery. The other 2 are still in extreme pain and appear to not be improving at all.


What is it that's making their surgical reactions so different when they are and were exactly the same prior to and during the surgery?


It's their own bodies ability to heal!


Everyone has their own way of healing and this story shows that we are all different, even though we may be the same in so many ways. We are genetically different beneath the surface, no matter how much we may appear the same on the outside.


This story has helped me to understand some of the unspoken risks associated with any type of surgery, and believe me, my eyes were wide open when I chose to undergo Tarlov Cyst surgery. To me, surgery means hope and I still haven't and probably never will ever give up on hope!


___________________________________________________


I will be linking this post to Facebook, Twitter and Linked-IN with the hope that this post will find it's way into the hands of a person, or group of persons, who are either experiencing similar situations and are in need of support for their own Tarlov Cyst diagnosis, or people who have something to offer in the form of adding to our need of mass exposure to every Tarlov Cyst Patients plight... 


We must have public support if there is to be change... that's the only way to  improve awareness and understanding. That's the only way to improve any patients access to care.


I will keep writing about this Disease and sharing information, research and experience, for as long as it takes to bring about change. 


We, the International Tarlov Cysters, and Brothers of the world will not walk away silently and hide behind closed doors just because it's the easiest thing to do. We could hide, quietly with our pain or keep quite to help the general public maintain their comforting, misleading beliefs that healthcare will always help them deal with whatever health problems they may ever have. But I hope that others will come to understand that we've committed to this cause, not only for ourselves, but for all patients that may follow in our path. 


This is not just a Canadian issue, this is an international issue that has people around the world crying out in pain, while praying for change.. 


Each of us hope that eventually our cries will improve the future for all. 


With Love for my Cysters who've given me so much!
Sherri