I had a long road to getting approved for long term disability. I have been totally off for about 8months now but I have worked on and off for the last 2 years. 2 years ago is when I experienced the beginning of excruiating back pain and the also the worsening of all my other symptoms. I have had minor symptoms for 15 years but not bad enough that I couldn't work.
So 2 years ago when I turned funny in bed and felt something snap in my upper back and fainted from the pain, I first went off of work from my job as a nurse. The upper back pain has lessened since that day but has never gone away. It is my only symptom that is a constant. The rest come and go depending on the day but the good ole back pain is my constant companion.
It took me over a year to even find out I had a syrinx. My family doc kept telling me that I was too young to have anything serious going on and I had probably just pulled a muscle. Finally after about 4 months of pain, she gave me a referal to a NS and rheumatologist. The NS ordered a CT scan and when that came back normal he refused to see me. So I carried on to the rheumatologist. I took 5 months to get in to see him and when I finally did he agreed that this was unacceptable that someone my age should have such severe and chronic back pain and ordered an MRI.
In Canada there is a wait list for everything. The MRI took 6 months but it finally showed that I had a long syrinx from C3-T9, with the widest part being right where my back pain was. Although it wasn't good news to get this dx it did feel good to finally have some answers as to what was going on. My docs had all convinced me that there was nothing really wrong with me and that I must just have a low pain tolerance.
So for over a year I had no diagnosis. Because of this I was denied Long Term Disability. I did try to go back to work twice on the advice of my doctor. Both times my symptoms got worse and worse the more hours I worked. I was also developing new disturbing symptoms at this time too such as tachycardia, dizziness, tinnitus, numbness and tingling to my face and extremities etc. So ultimately I had to go off of work.
It didn't help that both NS I saw wrote in the report "Her syrinx is too small to be causing her symptoms and we don't know what is" So I kept being denied and denied and was off of work without pay. What finally got me approved was my trip to NY and The Chiari Institute. I came home with real answers and a 17 page report. I believe this report is what finally got me approved. So 18 months after I initially "hurt" myself I was finally approved for LTD. I just received a big back pay check and I am now getting paid every month.
It is really frustrating though how long it took. It is just another injustice of being dx with something rare and little known. They send your file to their medical review panel but if none of them have ever heard of cm/sm then they are unlikely to approve you or understand how this could affect your life.
The good news is I am approved. The bad news is that after you have been on it for 2 years, you have to prove yourself again. Because I was only just approved the 2 years is coming up fast. April 2008 my payments will stop unless I can appeal my case and have it accepted further. For the first 2 years you have to be disabled from YOUR OWN job. After 2 years you have to be disabled from doing ANY job. So now I am gearing up to begin the battle again.
Some days it is all just too much. I have had to fight with NS, and NL to even get a dx or any treatment and now I have to fight with LTD as well. I refuse to take no for an answer though. It is not that I want to be at home and not working but I just can't imagine what I could possibly do. I am dizzy and nauseated most days. I don't do well driving and I get muscle spasms in my hands when I write for more than about 3 minutes. Some days my cranial settling really seems to act up and I have to lie down frequently through out the day.
Most days I am just barely managing to take care of myself and my girls. The job of keeping the house somewhat clean and cooking etc seems just barely do-able and I really could not cope with working on top of it. Now it is just a matter of relaying these facts to the medical review board.
I hope they don't make it as difficult as last time. We are just catching up financially from my being unpaid for 18 months and I really don't want to have to go thru that again.
For those of you that are also struggling, don't give up. Decide you are not taking no for an answer and keep seeing specialist and getting consult letters to send in until one of them makes a difference. My nurses union has also been very helpful in appealing their decision. April is coming fast so we have already started working on the next appeal. I hope it will be easier this time and their medical review docs can try to understand what I am going thru.
I had a long road to getting approved for long term disability. I have been totally off for about 8months now but I have worked on and off for the last 2 years. 2 years ago is when I experienced the beginning of excruiating back pain and the also the worsening of all my other symptoms. I have had minor symptoms for 15 years but not bad enough that I couldn't work.
So 2 years ago when I turned funny in bed and felt something snap in my upper back and fainted from the pain, I first went off of work from my job as a nurse. The upper back pain has lessened since that day but has never gone away. It is my only symptom that is a constant. The rest come and go depending on the day but the good ole back pain is my constant companion.
It took me over a year to even find out I had a syrinx. My family doc kept telling me that I was too young to have anything serious going on and I had probably just pulled a muscle. Finally after about 4 months of pain, she gave me a referal to a NS and rheumatologist. The NS ordered a CT scan and when that came back normal he refused to see me. So I carried on to the rheumatologist. I took 5 months to get in to see him and when I finally did he agreed that this was unacceptable that someone my age should have such severe and chronic back pain and ordered an MRI.
In Canada there is a wait list for everything. The MRI took 6 months but it finally showed that I had a long syrinx from C3-T9, with the widest part being right where my back pain was. Although it wasn't good news to get this dx it did feel good to finally have some answers as to what was going on. My docs had all convinced me that there was nothing really wrong with me and that I must just have a low pain tolerance.
So for over a year I had no diagnosis. Because of this I was denied Long Term Disability. I did try to go back to work twice on the advice of my doctor. Both times my symptoms got worse and worse the more hours I worked. I was also developing new disturbing symptoms at this time too such as tachycardia, dizziness, tinnitus, numbness and tingling to my face and extremities etc. So ultimately I had to go off of work.
It didn't help that both NS I saw wrote in the report "Her syrinx is too small to be causing her symptoms and we don't know what is" So I kept being denied and denied and was off of work without pay. What finally got me approved was my trip to NY and The Chiari Institute. I came home with real answers and a 17 page report. I believe this report is what finally got me approved. So 18 months after I initially "hurt" myself I was finally approved for LTD. I just received a big back pay check and I am now getting paid every month.
It is really frustrating though how long it took. It is just another injustice of being dx with something rare and little known. They send your file to their medical review panel but if none of them have ever heard of cm/sm then they are unlikely to approve you or understand how this could affect your life.
The good news is I am approved. The bad news is that after you have been on it for 2 years, you have to prove yourself again. Because I was only just approved the 2 years is coming up fast. April 2008 my payments will stop unless I can appeal my case and have it accepted further. For the first 2 years you have to be disabled from YOUR OWN job. After 2 years you have to be disabled from doing ANY job. So now I am gearing up to begin the battle again.
Some days it is all just too much. I have had to fight with NS, and NL to even get a dx or any treatment and now I have to fight with LTD as well. I refuse to take no for an answer though. It is not that I want to be at home and not working but I just can't imagine what I could possibly do. I am dizzy and nauseated most days. I don't do well driving and I get muscle spasms in my hands when I write for more than about 3 minutes. Some days my cranial settling really seems to act up and I have to lie down frequently through out the day.
Most days I am just barely managing to take care of myself and my girls. The job of keeping the house somewhat clean and cooking etc seems just barely do-able and I really could not cope with working on top of it. Now it is just a matter of relaying these facts to the medical review board.
I hope they don't make it as difficult as last time. We are just catching up financially from my being unpaid for 18 months and I really don't want to have to go thru that again.
For those of you that are also struggling, don't give up. Decide you are not taking no for an answer and keep seeing specialist and getting consult letters to send in until one of them makes a difference. My nurses union has also been very helpful in appealing their decision. April is coming fast so we have already started working on the next appeal. I hope it will be easier this time and their medical review docs can try to understand what I am going thru.