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!


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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