Ja'net, Calgary AB Canada

I acquired my Syringomyelia after a car accident too. I started getting numbness and tingling in my hands and arms a couple of months after my accident, on top of my whiplash stuff (sore neck, poor mobility, headaches, etc). Fortunately, my doctor was super proactive and sent me for a MRI when my symptoms got worse after heavy lifting. I have a Chiari Malformation and a couple of syrinxes (C6-C7 & T1). I had my decompression surgery in Dec. 2006 and my symptoms are relatively the same although I have less dizziness and less frequent headaches at the base of my skull. My main symptoms now are headaches, neck pain, reduced neck mobility, arm pain, tingling and numbness in my fingers and arms, muscle tightness in my back, neck, arms and hands. My energy level is no where near an average person or what it was before all this happened. I find I have to be very careful with not doing too much and my body is pretty sensitive. I manage my symptoms with physiotherapy, cranial sacral therapy and Yoga therapy and I find meditation helps me deal with stress. Posted 2008.
 
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Nancy, Woodstock ON Canada

Received February 16, 2009

I was diagnosed with syringomyelia in 2005, with a syrinx that goes from C3 to the conus, degenerative disc disease throughout the spine, and nerve impingement in various areas. I am unsure how my syrinx developed, but I was diagnosed back in 1988 with, “suspected encephalitis”. I am unsure whether I actually had encephalitis, though, because everything had happened to me after the birth of my daughter, and I often wonder if the straining during childbirth actually had caused a flare-up of my syrinx, causing me the extreme headaches, ringing in my ears, pins and needles, and loss of sensation, which the doctors suspected as encephalitis. But, hey, I am not a doctor. I had also been hit by a car as a teenager during a walk-a-thon, which could have contributed to the development of the syrinx. Oddly enough, some of my symptoms just became my normal, such as putting my hands under pure hot water and not feeling that it was pure hot water. Everyone else would burn their hands on the water, and although my hands would be really red, it was not hot to me. I would think to myself that there was something wrong with them, as funny as that sounds. Obviously I will never know how I got it, or why I got it, but I do have it, and must learn to deal with it. Here is my story:

One day, in 2005, on my way home from work I had to pull over because it felt as if someone had stabbed me in the head. It was a headache comparable to when I had the suspected encephalitis, which was more like an explosion in my head. By the time I got home I had tingling in my hands and feet, and then could not feel my legs. My ears were ringing, and I lost feeling down my arms. A turn of my head caused a shock to occur down my arm and into my fingers. When I would put my hands under the tap, I would feel as if I was being electrocuted. I even had an electrician in to look at whether there was some sort of problem, not realizing that it was my problem. It was so scary. The doctors of course had no clue what was wrong with me, and told me that it was a migraine headache. They gave me a shot of Demerol and sent me home. Two more visits to the Emergency Room, two more doctors telling me it was a migraine, two more shots of Demerol. A month later, a visit to a local neurologist, again a diagnosis of migraine, and now no sensory perception in my hands, arms, most of my back, and numbness in my upper legs. Thank goodness for a family doctor who cared enough to find out what was wrong with me, and knowing someone who could get me in for an MRI quicker than the neurologist I saw. The neurologist got me an appointment only to have my head done, which would not have shown anything, and the appointment was to be six months later. I knew that this was something far more than a migraine headache, for goodness sakes. It took a while to get a diagnosis, but it took far longer to get a neurologist that understood what was wrong with me. There were just far too many roadblocks. I was in extreme pain every day, and felt as if the doctors were not listening to me. I began to think that I was going crazy, but I knew my body, and I knew that what was happening was not normal. It is hard to be in so much pain and to have to fight for yourself, but people with this rare disease have to do it all the time. This is why I joined with Carion to start a group where people had someone to talk to, and to perhaps someday pass on information to the healthcare field about this disease, so that people like us do not get passed off as if we do not matter, Education is key to all of us getting the help we need when we need it.

Meeting Carion was one of the best things that could have happened to me. We seemed to inspire each other due to similar circumstances, and both knew what needed to be changed. We understood that when we did not hear from each other for a few days, one or both of us must be having a rough time. Carion, I am so happy to call you my friend. Your support has meant so much to me. Thank you.

 

   
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Eddie, Halifax NS Canada

Hi Nancy...you are the only other person I met with a syrinx that large, mine is also from about C3 to the conus...and a beneign spinal cord tumour at T9 and T10 feeding off T11. I was diagnosed in 89, MRI in  London, On. Canada. And functioned as an airline Captain till Nov. 2006, when my walking, balance, and foot position sense got too bad for me to continue. I have not had any surgeries as yet; the risk is very high to get a tumour out of the mid. inside of the cord. Hopefully, I will stay at this level, and try and enjoy an early retirement. I was based in Northen Ont. in 87 Thunder Bay, then Timmins On. 88-89...my symptoms started in 87. But, I was never anywhere near a neurologist, that was a Dr. that would visit the North once every 6 months or so. There I was, very few resources, and was ready to accept MS as that was all the family Dr.'s were eluding to. Then, I was able to transfer to London On., within one week; a GP set me up with Dr. Paul Cooper, chief neurologist at St. Joe's. He was very concerned after my first interview with him, and had me admitted for a week of tests. Before the uncomfortable ones came {lumbar puncture} the MRI showed the syrinx. It was a relief to now have gotten to the real cause, but, so scary, as no one could predict my future. I was lucky, and remained stable, with no further progression, and was able to continue as a pilot, with close monitoring by Transport Canada, for another17 years. Now, it seems that there has been a change, and I await further consults with more surgeons to make a decision on the possibility of removing the tumour. But, remove it or not, they seem to think that I will not be able to resume my career. Will let you know how it goes, next appointment is April 15...Take care. Cheers Ed
Posted 2008

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Robin, Kingston ON Canada

Received February 8, 2009

 

At the age of five I was starting to walk to school with my neighbor when I collapsed having a grand mal seizure. I was rushed by ambulance from the general hospital to Toronto’s Sick Kids hospital and after exploratory surgery (no MRI’s then) was diagnosed with not one problem but two, Arnold Chiari Malformation 2 and Syringomyelia and had surgery to correct both. The doctors discovered that the cyst was the full length of my spine and it drained like a tap when they reached the end. I was also diagnosed with scoliosis and wore a body brace for a year at age fifteen to prevent further increase in the curve. Later during my teenage years I started showing signs of sleep apnea even though it didn’t have that name then. Sleep Lab testing showed I had severe central and obstructive sleep apnea, the only treatment would be a trach which I received just before my 21st birthday and I use a ventilator at night time. In the most recent years I’ve been diagnosed with Nystagmus, Restless Leg Syndrome, Facial Nerve Damage, Leg and Arm Spasms. As a result of a fall two years ago, I now have Spinal Cord Injury Nerve Damage.

 

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Joanna, Calgary AB Canada 

I have Chiari Malformation and Syringomyelia.  I had always suffered from headaches and neck pain\discomfort in the past and I lost hot or cold sensations along with pain tolerance in my right arm and some parts of the right side of my body at some point in time in my teens.  I think it was one of those things that you do not really realize that is happening because it is gradual. I remember being in high school and going to take a shower and realizing that I could not test the water with my right hand any more because I could not tell if it was hot or cold.  Funny thing about it is that I think that I just thought to my self… huh that is weird but I did not really worry about it.  How crazy is that.  I had gone to a doctor as a child and they had thought that my problems had to do with the fact that my back muscles were not strong enough and they sent me to physio which did nothing to help of course, and after that I just kind of ignored it because to me this is what normal was. I worked at a Chiropractors office for a few years and through out that time I got xrays and all of the doctors (there were three) all thought that it was weird that I had so many problems but never really expanded on the issues as people came in every day with the same kind of issues that I was having and so they just figured that I had had some major nerve damage as a child as I had fallen off someone’s shoulders when I was really little as well as hit my head really hard on a slide at the pool when I was little, so they figured that I had caused nerve damage at that time.  Getting adjusted created a little bit of relief and I did massage and active release occasionally and that also seemed to create a little bit of relief.

I realized that there was something wrong in Oct 2005 when I lost complete feeling in my right arm as well as motor movement in my right hand.  I had been sitting on a chair listening to my husband playing guitar with my arm up resting on the back if the chair and when I brought my arm down I knew that something was wrong.  I went into the bedroom and attempted to pick a bottle of water and I could not grasp the bottle.  I kept trying little tests trying to get my hand to work they way that I wanted it too but it would not listen.  Needless to say I was totally panicking. I told my husband what had happened and I decided that I would call one of the Chiropractors that I use to work for and see if he would take a look at me to see if we could figure out what was wrong.  When I went and saw him, he said that he thought that I had something called Saturdaynightpaulsey.  They call it this because people go the bar on Saturday night, sit in a chair while drinking and keep their arm up on the back of the chair and end up causing the nerve in the arm to get extremely pinched creating loss of feeling in the arm.  He was only a bit concerned because of the loss of motor movement in the hand.  He started doing active release on the nerve and said that I would just need to keep doing treatments a couple times a week and it should get better.

Well it did get better after about 2-3 weeks, my motor movement slowly started to come back and it went back to the same amount of numbness that I had before in my arm and hand.  (it was so silly to see me try and drive standard or type or even try to control a computer mouse, I could not get my finger to “left click” the mouse) I probably would have just left everything at that but I had gone to see my MD in regards to some different test results and at the end of the appointment I just mentioned that this had happened to me in the past month and she was like “that is NOT normal” (it is totally God that I was even at her office because I am an once a year to the doctor kind of girl…. Or at least was before this happened) Within 2 days I had the hospital calling me to book me in for an MRI and after the first MRI they called me with in a week to book me in for the second.  Basically with in a week or two of that I had the neurosurgeons office calling me to book me in for a surgery consultation.  I had not even spoken to my medical doctor in regards to what was wrong with me and I was getting a call from the surgeon’s office.  I made the lady on the phone tell my why I was coming in to see him and that’s when she told me that I had Chiari. (over the phone eh… so nice.. but considering I was freaking out she probably did not feel that she had any other choice) I tried to get in with my MD after that to talk to her about it but she was on vacation and had a different doctor covering for her.  I went to go talk to this guy to see if he could at least talk to me about the MRI results.  I took my husband and my mom with me and when the guy came in the room he asks “so who is here to see me”… sooo not good, they guy had no idea what it was that I had and it was such a waste of my time.  I ended up going to see my surgeon before I could even see my MD, to which they said that they wanted to book me in for surgery as soon as possible as they did not want my syrinx to get any bigger and possibly, cause me more problems.  Actually they were quite surprised that I did not have more problems considering how big my syrinx was.  Well to make a long story short I was booked in for surgery in the next couple weeks.

After my surgery I was out for the count for about 8 weeks and to this day I still have a lot of problems.  I never did get feeling back in my right hand and arm, and I have a lot of twitches in my hand. (sometimes when I am working with a mouse my pointer finger will twitch and select things they I never wanted to or if I am holding the button down it will let go with out me wanting to) I also have a lot of problems with my neck being stiff and sore, and I have headaches a lot.  When they did my surgery they actually caused more nerve damage to the back of my head so I have problems with wearing my hair up and randomly the back of my head just hurts.  It is super annoying but you know what, I am just happy that things will never get worse that what they are now. This is my normal and I am figuring out how to live with it day to day and succeeding.  Not every day is a positive day but you know what, everybody had bad days! I just thank God that I am alive and pretty healthy for the most part. I just pray that it is not something that I one day pass on to my children as it is hereditary.  I am not sure which side of the family I got it from as know one else has been diagnosed with it, but at the same time you will never now until you get an MRI and well those tests are not exactly readily available. 

Anyways this is just something that I wanted to share as it is a major part of my life and who I am!
Posted 2008.

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Kathleen, Edmonton AB Canada

In 2001, I was a passenger in a 98 Corvette, coming down a mountain (Kelowna's Knox  Mountain), when the driver was passing another car, the wheels got taken into gravel by the side of the road, we hit a tree and the car rolled 10 times down the mountainside. When the car finally stopped I knew 2 things: 1. I couldn’t see out of my right eye and 2. I couldn't feel anything on my left side. Firefighters came and got me out of the car and carried me up the mountainside and I was rushed to Emergency. I had fractured 2 vertebrae (C6 & C7) and underwent surgery ... the took bone from my hip and put it in my neck to stabilize it and put titanium plating and screws to hold it together. I was put in a neck brace that was drilled into my head. 5 days later my C5 was unstable and they had to go back in. It did relieve the paralysis on my left side and am left with nerve damage on my left hand and arm. Realistically I learned 2 things from all of this ... 1. I teach special ed. children, so learned very much about dependence on others and 2. Surgeon's are underpaid for their work! In 2003, I began to notice that the neck pain was not going away and that tingling and numbness had never gone away since the accident. I underwent and MRI, and they discovered I had Syringomyelia and Chiari 1 Malformation. I underwent surgery and had a decompression. They say I am fixed but I have never felt the same - neck pain, numbness, tingling in my fingers, soreness of muscle tissue, tired, and unable to do anything really physical. Posted 2008.
                                 
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Charlie Milne: Hemiballistic Attack, Neurological condition - lesion on the brain. Affects left side. This is very mild attack, first attempt at getting it on film. Also have Syringomyelia, a syrinx inside the spinal cord. Am the only known person to have both rare, progressive, incurable neurological conditions... any help would be VERY MUCH appreciated.

Ms. Charlie Milne (right-Charlie and DJs Mighty Delicate before accident)
Nova Scotia, Canada
Received February 9, 2009

I had a serious horseback riding accident 9 years ago, September 11, 1999, (being thrown into a hockey arena wall), at which time other than my back being broken in two places, I was left undiagnosed. (Although this was the second time I had broken my back, and was paralyzed from the waist down for 3 days the first time (1980), I had no other symptoms, and thanks to my osteopath at the time I did not have to have a spinal fusion.) I had an extreme amount of difficulty walking as I could not control my legs, and also was having seizure-type attacks. All I kept hearing from all the doctors, nurses, and specialists was, "I HAVE NEVER SEEN ANYTHING LIKE THIS BEFORE", so I was sent home by ambulance several days later, still unable to sit up, and was left in the hands of a home-care Physiotherapist.  She was so shocked the first time she came to visit with me she immediately contacted my family physician and told her I should not have been sent home, rather, I should have been transferred to the Nova Scotia Rehabilitation Centre.  My physician had not seen me, and felt her hands were tied as it was the Neurologist that sent me home.
 
Once I was able to sit up and get in and out of a car, which took 3 weeks of hard work, I finally got to see my family physician. She too was shocked at my condition.  So she contacted my spinal cord specialist and told her I definitely needed more care than I was getting... and because of her I did get admitted to the Nova Scotia Rehabilitation Centre. To make a long story shorter, 11 months after my accident with after lots of hard work at physio behind me, I had one of the  "attacks" that lasted 6 hours.  To describe it... it is an uncontrollable flailing of my left arm, my head jerks to the left side, and my left leg jumps. Fighting it makes it worse, so I have to let it run its course and then I pay for it later as it totally exhausts my muscles!  Well, this 6 hour attack put me in the hospital for 136 days, as I ENDED UP FLAT ON MY BACK AGAIN, JUST LIKE THE DAY OF THE ACCIDENT; I HAD LOST ALL THE HARD WORK I HAD PUT INTO GETTING ON MY FEET AND HAVING THEM CONTROLLED ENOUGH TO WALK.  STILL UNDIAGNOSED, I got a computer and I started researching and asking questions.  I found a World Renown Neurosurgeon in Toronto whom I wrote to with my symptoms and sent a copy of my MRI's too and he diagnosed me with a rare condition called (TRAUMATIC) SYRINGOMYELIA (Syrinx inside my Spinal Cord) and also said that he thought I had a brain injury and he would work with my doctors here to find out what it could be. After more tests and MRI's low and behold I was finally told that I had another very rare condition called HEMIBALLISMUS, and the seizure-type attacks I was having were called "Ballistic Attacks".  When I did my research on this I WAS A TEXTBOOK CASE.  

I was then told... I AM THE ONLY KNOWN PERSON IN CANADA TO HAVE BOTH OF THESE RARE CONDITIONS AND NO ONE IN NOVA SCOTIA THAT I HAVE HAD THE PLEASURE OF SEEING KNOWS HOW TO TREAT THESE TWO CONDITIONS THAT ATTACK THE CENTRAL NERVOUS SYSTEM AND ARE PROGRESSIVE AND INCURRABLE. 
Due to my extensive research I found that I knew more about these conditions then my doctors did, and sometimes they would even disagree with me that some of the symptoms I was experiencing were real.  Next step... psychologists.  Being a very positive person and having accepted the fact that although I had been a Professional Horse Trainer/Coach/Judge/Breeder /Successful Serious Show Person and one of the top 10 Country Line and Couples Dancer/Instructor/Choreographer's IN THE WORLD and would never ride or dance again, I looked forward to persuing other passions.  Because of my positive attitude and the fact little is known of these two rare conditions I was told "it was all in my head", pardon the punn.  Tell me... how could I make up symptoms so imposing on my body when I did not even know what I had wrong with me?  I realize being traumatized and stressed can do wonders to one's body, but my body was acting on its own way before they finally diagnosed me.  I was even able to prove to my Spinal Cord Specialist that the use of my left leg had a great deal to do with the attacks being brought on.  My family and friends can verify this fact as well. Now my MRI's do not show the lesion on my brain (HEMIBALLISMUS) and this is just fuel for my doctors to say 'it is not real'.  I have therefore, once again, gone into the research mode and have found out that the lesion can dissipate after 6 to 12 months, yet the symptoms are still there and they are REAL.  A Neurologist at a Hospital in the United States has verified this information and is willing to set me up with a Neurologist/Neurosurgeon that has dealt with this before.... there are three he would recommend... but who can afford to go to the United States from Canada for treatments? Why don't the doctors in Nova Scotia want to learn more about these conditions and work with doctors abroad to help me HERE.  It is very frustrating to say the least. I have had to re-learn to walk 6 times in 9 years.  I am in the position now of "if I don't use my legs, I will not be able to use them".  I have all kinds of wierd symptoms, (ie. the neatest one... the feeling of trickling water down the back of my leg), and because of the fact they both attack the central nervous system I now have several other problems to deal with such as a Neurogenic Bladder, IBS, Leukopenia, GERD, and I have just been diagnosed with problems with my Trigeminal Nerve (the right side of my face, including 1/2 of the tongue is numb - not continually, but enough to be coming more prevalent and annoying and it lasted 16 months,) etc. My ultimate challenge is to find someone who is willing to do whatever it takes to help me get rid of the Ballisic Attacks.  I believe I can live with the cronic pain from the Syringomyelia and all of its symptoms and other conditions; even the leg spasms and spacticity I have that cause me to lose sleep due to unbearable pain, and I have a great deal of difficulty controlling my legs.  I have 2 walkers, 2 wheelchairs, 2 canes, 2 forearm crutches and a scooter... When I get out of bed in the morning that is when I choose my aid for the day.  I am not one to be kept down, life is too short!
 
I moved to Halifax two years ago to be closer to the hospitals and specialists.  I did get a new family physician when I moved here that unfortunately felt I took up too much of her time and she actually asked me to find another doctor.  Well, I looked for a family doctor that was willing to take on the challenges that my conditions present... and I was turned down by 8 doctors – they said they were unfamiliar with any of my conditions and would take up a great deal of their time.  But, thanks to 'www.doctorsns.com', I now have a new physician whom is helping me, even though he has never dealt with these conditions, time is not a factor to him. I have provided lots of researched material for him and he works with me.  God Bless Him! 
 He and my massage therapist found that it was the Trigeminal Nerve that is causing the side of my face to be numb, and we conquered it.  I had an MRI of thoracic spine and brain on June 30/08, and another on Jan 16, 2009. The June results showed no growth and I have yet to hear back from the January MRI results yet. I have also seen a new neurologist, once.  I believe it’s time to push for another appt. with him again.  My Brain Surgeon (who did have me scheduled for a stem cell regeneration operation years ago but as the time drew closer to the operation he cancelled it, with my permission, as he was not comfortable with the odds... and if your brain surgeon is not comfortable with the odds, then neither are you RIGHT?).  My Spinal Cord Specialist is wonderful and is helping all she can.  In fact, I have been having Syringomyelia symptoms above the Syrinx all along without explanation, which is not right… but I just found out that I have Arachnoidis, which solves that dilemma.
I do not dwell on my conditions, nor do I consider myself a victim.  Life happens... we have to deal with it.  The best thing I can do is look for all the 'fortune' in my 'misfortune'.  It's there, I know. I do have a list of symptoms and meds, but because of the two rare conditions overlapping, they may not be the same as anyone else's.  If you wish to see them I can provide them.
Thanks for allowing me to share my story with you.  The reason I did was in hopes that one or more of your doctors have KNOWLEDGE of (Traumatic) Syringomyelia and/or Hemiballismus that could help me instead of just keeping me “comfortable” as my doctors are trying to do. Particularly Hemiballismus, as this is so rare, and I just have to take the attacks as they come and deal with them, as no one knows anything about it and since the lesion doesn’t show on my MRI’s now some doctors have even told me it’s all in my head… and believe me I know different.

 

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Caroline, Trail BC Canada

After many years of mysterious and ever increasing symptoms I was finally diagnosed with Chiari malformation, syringomyelia, cranial settling, occult tethered cord, POTS and ? EDS last summer. I have started this blog to share my experiences and lessons learned in hopes of raising awareness and helping others find their way. "Click here" to read Caroline's blog. Posted 2008.

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Jason
London, ON Canada

Hi guys, my name is Jason Smith. I have an arnold chiari malformation and syringomyelia C 1/2 to T10. I had decompression surgery in May of 1995 when I was in 2nd year university. I was told to try going back part time but I went back full time and worked 40 hours a week that summer at ESSO. Then I finished my 4 year degree at Western and then my teaching degree at Windsor. Then I taught for about 4 1/2 years before my health got bad enough that i couldn't work. I am now a house husband who does cooking, laundry and grocery shopping when I feel well enough. Posted 2008.

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More stories coming soon!