Guest guest Posted August 9, 2012 Report Share Posted August 9, 2012 Hi Kellie ~ I understand your frustration with trying to get on disability. I am from Canada and originally was off on LTD (long term disability through my workplace). They constantly phoned me for updates and had my dr fill out form after form. At the two year mark they cut me off and I had to get a lawyer to help me win my case. Lucky for me I had a discovery 10 months later and I won my case without going to court. My lawyer said it was the easiest case he'd won. But, then I had to apply to Canada's version of disability (required by my LTD carrier) -- CPP disability -- and I was denied, had to appeal, was denied again and had to appeal in front of a panel. But, a month before the tribunal they accepted my claim (this happened right after I sent in additional information to them for my tribunal). So I never had to go through the tribunal thank god. That was a 2 year process. It is not unusual for disability claims to be denied and denied again by both insurance companies and the state -- sadly, this is all too common. You are doing the right thing for getting a lawyer. As for a description of symptoms I don't have anything more than what you will find on the internet with a google search. From what I've learned, it seems critical that reports from you and your doctor are filled out in a certain way with certain wording when applying for benefits -- it doesn't really matter how much of a disability you have if you don't word these correctly. They are trained to pick any word or phrase out of a report to deny your claim. You have to clearly show how your disability prevents you from working in any job on a regular basis -- symptom by symptom, job duty by job duty. Your lawyer will know the ins and outs of all this. Having been through the process I would recommend anyone applying for disability benefits to get an advocate to help you fill out the forms and reports right from the beginning of the process and not wait til you have to appeal. Don't give up - I understand how frustrating it is as I lived through the process for years, never knowing if I would get benefits or living in fear they would be cut off. DeeTo: tetheredspinalcord From: redgecko97@... Date: Wed, 8 Aug 2012 21:33:56 -0400 Subject: RE: New to the group and would like to hear stories about others with tethered cord. Dee, do you know of a good written description and symptoms of TSC? I haven't worked since my surgery. The state has denied me disability for the second time stating that my symptoms are not permanent. I have a lawyer and expecting a court date in the near future. I'm so tired defending myself. Sorry for going on about this. :-) Kellie Dee Allaert wrote: > >Terry -- usually pediatric surgeons are more experienced with TC than other neurosurgeons but often won't take on adults -- so that is likely a good thing that you have a pediactric neurosurgeon. That is because now a days people are diagnosed with TC more often as a child (as compared to when we were younger and MRIs didn't exist). But it is also common for people to experience problems for the first time as adults. Dee > To: tetheredspinalcord >From: thowes1956@... >Date: Wed, 8 Aug 2012 16:24:10 -0700 >Subject: Re: New to the group and would like to hear stories about others with tethered cord. > > > > > > > > > > > > > > > > > > > > > > > > > > > Dee it sounds like you have more pain than I do. I had alot of pain about 2 months ago but it is mostly weakness in the legs right now. I live in RI and was diagnosted by 1neurosurgeon and she sent me to another one and while with him he sent for another one and she is the one who will do the surgery. She is a pediactric neurosurgeon. I'll find out about my MRI and the date for the operation on Friday. > >I am still working and some days it's really hard!! I do have better days and today wasn't too bad:) I'm sorry to hear your not having a good day. The surgeon did tell me my symptoms now might not go away it depends how much nerve damage was done. It's really to prevent any more nerve damage. > >I've had back pain off and on for years. I've also had years of headaches, dizziness and light-headedness so I guess that's what they are looking for in the MRI. By the way I am 55 years old and I work part time in a very busy doctor's office. Thanks for sharing your story I appreciate it. If I didn't answer all you asked just ask again. > >Terry > > > > > > > >________________________________ > > > >To: " tetheredspinalcord " <tetheredspinalcord > > >Sent: Wednesday, August 8, 2012 7:06 PM > >Subject: RE: New to the group and would like to hear stories about others with tethered cord. > > > > > >From what I understand, a lipoma is a more difficult surgery than simply cutting the filum, which is what was done for me. There are people in this group who have had surgery for a lipoma. I wasn't diagnosed until I was in my late 30's and had surgery at age 42. I have had chronic back pain since I was 18, left leg weakness/muscle atrophy, loss of dorsiflexion in that ankle, aching legs. I also had spondylolisthesis to complicate things even further. I had a spinal fusion 2 years ago for that. I was able to maintain a very active lifestyle til my early 30's. For me, I had a long recovery from surgery before I could say it helped. I do have a lot less aching in my legs and can walk further than before my surgeries. I can stand longer as well. But, still, activity increases my pain, rest relieves it and I do get flare-ups (sadly, am in one right now). There is no change in my nerve damage (I guess that's good as the goal of surgery is to > > halt progression of symptoms -- does not always relieve pain). I'd say I'm one of the luckier ones in this group that manages most of the time with little in the way of pain meds, but am not working -- if I try to do too much I get worse right away, so have to really pace myself and avoid a lot of activities. I also suffer from chronic headaches and other pain issues but I'm not convinced that's related to my TC. Some people have great success from surgery, others are worse off. I think everyone in the group would tell you to make sure you have a neurosurgeon EXPERIENCED in this type of surgery, and would also recommend getting a 2nd opinion. If you tell us where you are living someone may be able to recommend someone in your area for you to get another opinion from. You really need to way the risks of surgery vs the risks of not doing the surgery. For me, I wish I'd done it sooner to possibly have avoided the nerve damage in my left leg -- > > others will tell you they wish they never had the surgery. But, the biggest frustration with this syndrome is everyone's experience/symptoms are different -- there is no crystal ball that will predict the outcome of either choice. That is why you really need to discuss your particular situation with your neurosurgeon -- and preferably get a second opinion. If you are suffering from any bladder/bowel issues then there is not much choice but to go ahead with surgery -- as this can be irreversable due to nerve damage if left to long. Dee > >To: tetheredspinalcord > >From: thowes1956@... > >Date: Wed, 8 Aug 2012 15:49:38 -0700 > >Subject: Re: New to the group and would like to hear stories about others with tethered cord. > > > > > > > > > > > > > > I don't know all the lingo to say so I will read from my MRI of the L-spine. It says there is a large lipoma of the filum terminale reaching it's maximal cross sectional callber at the level of L3where it measures 10x8mm & extending approximately 13cm craniocaudally from the conus, which terminates in a low position at the mid L2 vertebral body level, caudally into the sacrum where it appears to terminate at the S2 level. The conus demonstrates normal signal. > > > >So that's what it says so I hope that answered your question. I don't yet understand alot yet I am just learning about this stuff. I am scared to have the surgery but feel I really don't have too much choice but to have it. > > > >I have weak legs with some pain and my big toe is half numb and the numbness seems to be moving a little down my foot in the last couple of days. > > > >What symptoms did you have? > > > >Terry > > > >________________________________ > > > > > > > >To: " tetheredspinalcord " <tetheredspinalcord > > > > >Sent: Wednesday, August 8, 2012 6:35 PM > > > >Subject: RE: New to the group and would like to hear stories about others with tethered cord. > > > > > > > >Hi Terry -- what type of tethered cord do you have? I had surgery for a tight/thickend filum about 4 years ago. I too had an MRI of my brain which lucky for me ruled out chiari. Dee > > > >To: tetheredspinalcord > > > >From: thowes1956@... > > > >Date: Wed, 8 Aug 2012 22:07:40 +0000 > > > >Subject: New to the group and would like to hear stories about others with tethered cord. > > > > > > > > > > > > > > > > > > > > Hi my name is Terry and this is my first post to the group. I've been told I have tethered cord and will definetly be operated on soon. I just went for an MRI of the brain, T & C-spine to see if I have Chiairi malformation. I go to she the doctor on Friday to talk about the MRI and to set up a date for the operation. I would love to hear stories from other people with the same thing. > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2012 Report Share Posted August 9, 2012 Thank you Dee. Good information. I'm going to see a new neurologist, just waiting for the approval. I'm hoping he's more proactive. We'll see what happends. Kellie Dee Allaert wrote: > >Hi Kellie ~ I understand your frustration with trying to get on disability. I am from Canada and originally was off on LTD (long term disability through my workplace). They constantly phoned me for updates and had my dr fill out form after form. At the two year mark they cut me off and I had to get a lawyer to help me win my case. Lucky for me I had a discovery 10 months later and I won my case without going to court. My lawyer said it was the easiest case he'd won. But, then I had to apply to Canada's version of disability (required by my LTD carrier) -- CPP disability -- and I was denied, had to appeal, was denied again and had to appeal in front of a panel. But, a month before the tribunal they accepted my claim (this happened right after I sent in additional information to them for my tribunal). So I never had to go through the tribunal thank god. That was a 2 year process. It is not unusual for disability claims to be denied and denied again by both insurance companies and the state -- sadly, this is all too common. You are doing the right thing for getting a lawyer. > As for a description of symptoms I don't have anything more than what you will find on the internet with a google search. From what I've learned, it seems critical that reports from you and your doctor are filled out in a certain way with certain wording when applying for benefits -- it doesn't really matter how much of a disability you have if you don't word these correctly. They are trained to pick any word or phrase out of a report to deny your claim. You have to clearly show how your disability prevents you from working in any job on a regular basis -- symptom by symptom, job duty by job duty. Your lawyer will know the ins and outs of all this. Having been through the process I would recommend anyone applying for disability benefits to get an advocate to help you fill out the forms and reports right from the beginning of the process and not wait til you have to appeal. Don't give up - I understand how frustrating it is as I lived through the process for years, never knowing if I would get benefits or living in fear they would be cut off. DeeTo: tetheredspinalcord >From: redgecko97@... >Date: Wed, 8 Aug 2012 21:33:56 -0400 >Subject: RE: New to the group and would like to hear stories about others with tethered cord. > > > > > > > > > > > > > > > > > > > > > > > > > > > Dee, do you know of a good written description and symptoms of TSC? I haven't worked since my surgery. The state has denied me disability for the second time stating that my symptoms are not permanent. I have a lawyer and expecting a court date in the near future. I'm so tired defending myself. > > > >Sorry for going on about this. :-) > > > >Kellie > > > >Dee Allaert wrote: > > > >> > >>Terry -- usually pediatric surgeons are more experienced with TC than other neurosurgeons but often won't take on adults -- so that is likely a good thing that you have a pediactric neurosurgeon. That is because now a days people are diagnosed with TC more often as a child (as compared to when we were younger and MRIs didn't exist). But it is also common for people to experience problems for the first time as adults. Dee > >> To: tetheredspinalcord > >>From: thowes1956@... > >>Date: Wed, 8 Aug 2012 16:24:10 -0700 > >>Subject: Re: New to the group and would like to hear stories about others with tethered cord. > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> Dee it sounds like you have more pain than I do. I had alot of pain about 2 months ago but it is mostly weakness in the legs right now. I live in RI and was diagnosted by 1neurosurgeon and she sent me to another one and while with him he sent for another one and she is the one who will do the surgery. She is a pediactric neurosurgeon. I'll find out about my MRI and the date for the operation on Friday. > >> > >>I am still working and some days it's really hard!! I do have better days and today wasn't too bad:) I'm sorry to hear your not having a good day. The surgeon did tell me my symptoms now might not go away it depends how much nerve damage was done. It's really to prevent any more nerve damage. > >> > >>I've had back pain off and on for years. I've also had years of headaches, dizziness and light-headedness so I guess that's what they are looking for in the MRI. By the way I am 55 years old and I work part time in a very busy doctor's office. Thanks for sharing your story I appreciate it. If I didn't answer all you asked just ask again. > >> > >>Terry > >> > >> > >> > >> > >> > >> > >> > >>________________________________ > >> > >> > >> > >>To: " tetheredspinalcord " <tetheredspinalcord > > >> > >>Sent: Wednesday, August 8, 2012 7:06 PM > >> > >>Subject: RE: New to the group and would like to hear stories about others with tethered cord. > >> > >> > >> > >> > >> > >>From what I understand, a lipoma is a more difficult surgery than simply cutting the filum, which is what was done for me. There are people in this group who have had surgery for a lipoma. I wasn't diagnosed until I was in my late 30's and had surgery at age 42. I have had chronic back pain since I was 18, left leg weakness/muscle atrophy, loss of dorsiflexion in that ankle, aching legs. I also had spondylolisthesis to complicate things even further. I had a spinal fusion 2 years ago for that. I was able to maintain a very active lifestyle til my early 30's. For me, I had a long recovery from surgery before I could say it helped. I do have a lot less aching in my legs and can walk further than before my surgeries. I can stand longer as well. But, still, activity increases my pain, rest relieves it and I do get flare-ups (sadly, am in one right now). There is no change in my nerve damage (I guess that's good as the goal of surgery is to > >> > >> halt progression of symptoms -- does not always relieve pain). I'd say I'm one of the luckier ones in this group that manages most of the time with little in the way of pain meds, but am not working -- if I try to do too much I get worse right away, so have to really pace myself and avoid a lot of activities. I also suffer from chronic headaches and other pain issues but I'm not convinced that's related to my TC. Some people have great success from surgery, others are worse off. I think everyone in the group would tell you to make sure you have a neurosurgeon EXPERIENCED in this type of surgery, and would also recommend getting a 2nd opinion. If you tell us where you are living someone may be able to recommend someone in your area for you to get another opinion from. You really need to way the risks of surgery vs the risks of not doing the surgery. For me, I wish I'd done it sooner to possibly have avoided the nerve damage in my left leg -- > >> > >> others will tell you they wish they never had the surgery. But, the biggest frustration with this syndrome is everyone's experience/symptoms are different -- there is no crystal ball that will predict the outcome of either choice. That is why you really need to discuss your particular situation with your neurosurgeon -- and preferably get a second opinion. If you are suffering from any bladder/bowel issues then there is not much choice but to go ahead with surgery -- as this can be irreversable due to nerve damage if left to long. Dee > >> > >>To: tetheredspinalcord > >> > >>From: thowes1956@... > >> > >>Date: Wed, 8 Aug 2012 15:49:38 -0700 > >> > >>Subject: Re: New to the group and would like to hear stories about others with tethered cord. > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> I don't know all the lingo to say so I will read from my MRI of the L-spine. It says there is a large lipoma of the filum terminale reaching it's maximal cross sectional callber at the level of L3where it measures 10x8mm & extending approximately 13cm craniocaudally from the conus, which terminates in a low position at the mid L2 vertebral body level, caudally into the sacrum where it appears to terminate at the S2 level. The conus demonstrates normal signal. > >> > >> > >> > >>So that's what it says so I hope that answered your question. I don't yet understand alot yet I am just learning about this stuff. I am scared to have the surgery but feel I really don't have too much choice but to have it. > >> > >> > >> > >>I have weak legs with some pain and my big toe is half numb and the numbness seems to be moving a little down my foot in the last couple of days. > >> > >> > >> > >>What symptoms did you have? > >> > >> > >> > >>Terry > >> > >> > >> > >>________________________________ > >> > >> > >> > >> > >> > >> > >> > >>To: " tetheredspinalcord " <tetheredspinalcord > > >> > >> > >> > >>Sent: Wednesday, August 8, 2012 6:35 PM > >> > >> > >> > >>Subject: RE: New to the group and would like to hear stories about others with tethered cord. > >> > >> > >> > >> > >> > >> > >> > >>Hi Terry -- what type of tethered cord do you have? I had surgery for a tight/thickend filum about 4 years ago. I too had an MRI of my brain which lucky for me ruled out chiari. Dee > >> > >> > >> > >>To: tetheredspinalcord > >> > >> > >> > >>From: thowes1956@... > >> > >> > >> > >>Date: Wed, 8 Aug 2012 22:07:40 +0000 > >> > >> > >> > >>Subject: New to the group and would like to hear stories about others with tethered cord. > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> Hi my name is Terry and this is my first post to the group. I've been told I have tethered cord and will definetly be operated on soon. I just went for an MRI of the brain, T & C-spine to see if I have Chiairi malformation. I go to she the doctor on Friday to talk about the MRI and to set up a date for the operation. I would love to hear stories from other people with the same thing. > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
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