need advice on employment possibilities

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need advice on employment possibilities

Postby Tanya2 » Mon Nov 21, 2011 7:59 pm

Hi everyone,
it's been a really long time since my last visit to the forums so I am not certain that many of you will recognize who I am or my story, however, I do recognize a few of you from the days when I was first diagnosed, and spent many hours on the forums trying to understand what was happening to my body.
I have Syringomyelia without Chiari. I also suffer from extensive osteoarthritis in my cervical spine and degenerative disc disease in the cervical area as well as the lumbar. I have been diagnosed with SM for six years now, after a long, and agonizing 12 year search for answers to my severe symptoms. My syrinx runs from C5 to T 12 it is long but very small in diameter at about 3 mm. Despite this, as many of you are familiar I have extensive loss of function that relates to the middle portion of my cord. Unfortunately, I have slowly been losing my hand function which is now making it more and more difficult to do it I am trained for. More on that in a minute….
No one is quite sure what has caused my syringomyelia, however, there are a few plausible theories. I will briefly let you in on two of them, when I was 14 years old I had a tree fall on my left shoulder during a camping accident. The tree was about 14 inches in diameter, needless to say my left arm is never been the same since. The other very plausible explanation for my SM is a head-on collision when I was about 22 years old. I previously worked as a home care nurse looking after people with serious physical disabilities, this involved the usual risks associated with heavy lifting over a number of years.
I would like to share little bit about myself that those of you who desire to build stronger connections in this online community. My name is Tanya I am married to a wonderful man named Dan and have been for 17 years. We have a beautiful almost 10-year-old daughter. We also have a dog named Charm ( she is a Shiatzu) and a cat named Sienna (she is my darling long haired Siamese). We share lovely home in Edmonton Alberta, Canada.
Now they all know a little bit about me I think I should probably get down to business.
I've been struggling a lot with new symptoms for the last two months. I work as Learning and Development Specialist, I specialize in the development of e-learning. I have an undergraduate in psychology and a Masters degree in educational technology. I graduated with my Masters degree only two years ago. I also run my own organization called KnowItAll Consulting Inc. which I set up as a consulting firm shortly after graduation. My job requires me to work with computers nearly 90% of the time I am working. Up until eight weeks ago I was doing this without much difficulty at all. This is not stated that I didn't have some symptoms in my hands but they did not exclude me from performing the duties of my job. Until eight weeks ago.
I was laid off two months ago, about five hours after, I had asked to have Dragon NaturallySpeaking put onto my computer, to support me in meeting the day-to-day typing requirements of my position, five hours later I was laid off permanently. I recognize the injustice of this situation, however, I was forced to settle out-of-court for financial reasons. I am bound by the signed confidentiality agreement to not reveal any more than these facts, so you understand if I am unable to elaborate further.
This does mean that I have lost my six figure salary and I am unemployed. To make matters worse I am rapidly losing more and more hand function. Until three months ago I didn't have a Neurologist overseeing my care. The one that my doctor had originally sent me to see, saw me once, told me he would see me any year and I have never heard from him since. I was not sorry I have not heard from him however because I was unimpressed with his bedside manner and his knowledge of syringomyelia .
Three months ago, I ended up in the ER because I was experiencing extreme lower back pain and sciatica complete with loss of bowel function. The on call neurologist that night, ordered an immediate MRI my entire spinal column. Not only did he do that, he took me on as a patient. He was clear when he said he didn't understand why it did not have a neurologist guiding my care. He was the most polite and well mannered specialist I had ever met. He even provided me with additional phone numbers where I could reach him in case of an emergency. He called my home to follow-up and scheduled an in office appointment at which time he spent 45 min. with me. He had a neurosurgeon look at my films in the ER and send me to its second neurosurgeon for an appointment.
Between appointments for the lower back symptoms I developed new arm symptoms. I finally got in to see to my family Dr. who promptly told me that it was not my SM that was causing the problem, that he felt that the nerves were compressed. Despite my May MRI not showing this at all, he sent me on my way after scheduling a nerve conduction study that wouldn't take place until April even though I clearly said that this was impacting my ability to do my job.
When I family needed to my new neurologist for follow-up, things have gone downhill. The Neurologist had sent me to a neurosurgeon. This man refused to treat my situation surgically because he felt the risks were too high, given my complex situation. Currently, the neurologist who is treating me is going to meet with him and move my date forward for the Nerve conduction study. He says that he is concerned that unless surgery is performed my hands will continue to deteriorate. I think I agree with him but the risks are really high and the payoff is uncertain. To make matters worse I have also been diagnosed with severe anemia we are still trying to figure out the cause.
I am now unable to type more than one hour a day and I am using assistive technology to type this message. It works well with all of the Microsoft products that there are limitations to the number of products that it works with. This is particularly true for all of the specialized pieces of software that I use daily. I think I'm going to be forced to change careers again. I am thinking about taking a Master’s degree in counselling because I have an undergraduate in psychology and this would be logical because it would be something that I can do without using my arms very much, and the technology needed to assist me with regular word processing already exists. When I am looking for right now would be stories from other people about what you are doing to earn a living with SM. Particularly those who have very limited arm and hand function.
Tanya Ferguson BSc. MET
SM-C5-T12
Osteoarthritis C2-C6 T8-T12
Central herniations C4, C5 ,C7
Buldging disc L4-L5
Tanya2
 
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Joined: Mon Nov 26, 2007 12:40 pm
Location: Edmonton Alberta

Re: need advice on employment possibilities

Postby LANERS » Sun Nov 27, 2011 10:35 pm

Hi Tanya,

Our condition is very similar to each others. I also have a syrinx from c5 to t 11. I have osteoarthritis and bulging cervical discs, as well as a herniated disc at L4-5 and L5-S1. I was diagnosed in July 2009 and I have had symptoms since Dec 2008. I have been a hospice nurse and I had to change from working with patients to working in the office. I have wanted something to help me with my typing for the last 2 years. I mostly read threads and hardly type as it is too hard and frustrating for me. I usually lie in bed on my side as sitting up causes too much back pain. I have been working in the office for the last year. It is very painful to sit for 8-9 hours each day but it is much better than lifting patients. I will write more later.
SM C5-T11/ Disc Buldge C6-C7 / Mild Scoliosis
DX July 2009
LANERS
 
Posts: 43
Joined: Mon Nov 30, 2009 9:14 am

Re: need advice on employment possibilities

Postby pseudotumor » Tue Dec 20, 2011 2:28 am

I'm originally from Alberta too, just outside Calgary. Small-ish world. I don't know what to say on the employment front, but in terms of your neurosurgeon I would definitely get a second opinion, and if the second opinion is drastically different, get a third. I had doctors tell me surgery would be good for me as well as an equal number saying it was too risky. Although my problems aren't the same as yours, I'm glad I sought multiple opinions and eventually did have surgery, with excellent results. Good Luck.
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pseudotumor
 
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Joined: Thu May 19, 2011 3:45 am
Location: USA


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