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  • Congenital Spinal Stenosis and am told I need surgery

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    Old 09-06-2013, 06:39 AM   #1
    GeanieT
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    Congenital Spinal Stenosis and am told I need surgery

    Hi, I am 58 and was born with spinal stenosis, my spinal column opening is too small. I was a 3 pound premie, my mother gave birth to me alone, at home in a rural (country) area. I never knew I had this until the mid 80's when I took up running and soon couldn't walk. I learned then I was born with my knees out of alignment. I've had 3 surgeries on 1 knee and 1 surgery on the other. The final surgeries (both at the same time in 1999), I had a bi-lateral in where they severed the tendons holding my knee caps in place, so they float and stop beating up my knees. I was told that I would eventually need both knees replace. I was also diagnosed with rheumatoid arthritis when I was 21 and with osteoarthritis when I was 38. I was also told I have congenital spinal stenosis when I was 21 and that I would be in a wheelchair by the time I am 40. I just recently ended up in a wheelchair this year at age 58 (YAY it didn't happen sooner).

    But now my congenital spinal stenosis is getting the best of me. I started getting shots in my cervical spine in 2006 and have had 6 rounds since. My lumbar also needs addressed but since my cervical is worse and the lumbar "can wait", we've been addressing my cervical spine.

    I was able to continue working until January of this year (2013) and my spine specialist ordered me to stop working. I have applied for disability but was denied late June, stating they have all my records from my Primary doc, my spine specialist and the doc SS sent me too. I know all 3 docs reported I am disabled. However, SS denied me based on "my age" and my "level of education" (I have 2 assoc degrees). I immediately asked my attorney to appeal. That appeal is pending, but I'm not holding my breath.

    My cervical spine is in bad shape, so in my lumbar. My spine specialist has told me he will not give me any more shots as they only have lasted a year at the most each time and I'm beginning to suffer other problems from all the cortizone. He tells me I must have surgery. He wants to do an open door laminectomy on C3-C7, and after recovering from that, will need the same surgery on my L4-L7. I understand recovery from either of these is quite long. My problem is I have no insurance and haven't since summer of 2010 when my job then was outsourced and I lost my insurance. No employment since provided any benefits. Since I understand this surgery, particularly with the number of vertebrae to be done, is quite expensive, i,e,. appx $250,000 for the cervical and also again for the lumbar.

    In the meantime, until I can find a way to afford this, I am most definitely wheelchair bound. This is how I became wheelchair bound: I not only have nerves in my cervical spine being compromised, but at least one artery as well. Of course the nerves cause extreme pain in my neck, shoulders, arms, hands, buttocks, legs, etc., they also cause my arms to fling about uncontrollably sometimes as if I'm having an epileptic fit. The artery that is being compromised is what actually has me in a wheelchair now. I have fallen at least 5 times now from it. But only 1 fall actually caused physical damage. I have now lost most of the function of my left foot. It was so damaged by the "instant" fall when my artery became compromised that a huge portion of the bridge of my foot actually had to be removed due to necrosis and the healing of it has replaced the necrotic tissue with a lot of scar tissue.

    This put me in a wheelchair and even though the foot is almost completely healed, I will remain in the wheelchair as I can't even consider risking another fall that could result in even more damage to some part of me. My life now is basically just sitting and doing my best not to move my neck in any way. My spine specialist even just this week told me the longer we wait for the surgery, the more damaged my nerves and/or that artery will become and that while they can make my spinal column opening larger to relieve much of this compression, there will be nothing that can be done to correct any damaged nerves or arteries. And btw, I already know of one nerve that is damaged... it actually allows me to leak rectally if I am standing or walking for at least 15 minutes, and I can't even feel it happening. Guess being in a wheelchair has at least stopped that for now.

    I basically have 2 questions if anyone can answer them.

    1) Is Social Security actually expecting me to wait until either a nerve or an artery is actually severed before they approve me as being disabled? If so, that's pretty scary. A severed nerve could result in a simple finger being paralyzed, or, can even affect my swallowing or even breathing. A severed artery, well, that's just not even an option I want to think about. I know that SS states that "once" a person has 2 spinal surgeries for spinal stenosis they are automatically approved for disability... why only "once" the surgeries are done... why not approve based on the fact you NEED 2 surgeries instead of waiting for some catastrophic event due to a severed nerve or artery?

    2) Does anyone actually have any idea how much it costs, TOTAL costs, hospital, doc, anesthesiologist, etc. do perform an open door laminectomy on C3-C7? and about how long is the recovery on average?

    While I sit here and do pretty much nothing but focus on not moving my head/neck, while waiting on SS, I'm running out of things to sell to be able to afford the basic needs of living. And I can't imagine I have to sever something first. And btw... to type all this wasn't easy... the pain to do so is quite extreme.

    I appreciate any info anyone can give.

     
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    Old 09-07-2013, 02:43 AM   #2
    Whynowthis
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    Re: Congenital Spinal Stenosis and am told I need surgery

    Hi! I'm sorry about the pain you've been going through. I'll try to answer a few questions for you. To start with, even though you may have had three doctors state to SSDI that you are disabled, that really does nothing. SSDI pretty much throws that out the window, as they don't take Dr's statements, they look only at your medical records, and have their own doctors on staff review the records and decide if you are disabled. The reason is if someone was good friends with a doctor, and didn't want to work anymore, they could just get their good buddy the doctor to write a note on their behalf, and then boom they are getting thousands of dollars a year free just because a doctor wrote it down on a piece of paper. So really its to protect themselves.
    Also, I'm confused, you said you were needing surgery for L4-L7, but the lumbar level of the spine only goes to L5, there is no L6 or L7, so if a doctor told you this, I would run, not walk to another doctor!!!!
    Ok, you also questioned if SSDI is waiting for your nerves to be severed before approving you. Well, no they aren't, they don't wait for anything to happen before approving benefits, they simply approve or deny based on medical results. BUT, a severed nerve CAN be a good thing. In pain management practices, nerves are routinely burned (to essentially sever them) to end pain. So they wouldn't necessarily see this as a bad thing.
    Ive never heard that if one has two surgeries for spinal stenosis they are automatically approved for disability. Where did you get this information?? Generally surgery improves ones condition so they can return to their prior level of functioning, so that seems odd. Also, SSDI does not automatically approve ANY condition, other than the compassionate allowances diagnoses, and people with those diagnoses still have requirements they have to meet.
    I'm not sure how much the costs of that type of surgery would cost when paying cash. Most people probably wouldn't since most can't afford to pay for that without insurance. I would suggest calling around to the hospital, and doctors offices to see what kind of deals you could get for cash payment.
    I'm surprised they denied you based on your age, since you are over age 50 it is a little easier to get approved with the GRID rules. I'm glad you've obtained legal council, as I think they will be able to help you get this sorted out. Hopefully you can get approved without having to go before a judge! It takes 29 months from the date of disability to get Medicare, but since you need those surgeries right away, once you are approved I would apply for Medicaid, if you qualify financially. Then, If you qualify financially, you should be able to get it since you become eligible by being disabled.
    Good luck to you, I hope things work out for you!!

     
    Old 09-07-2013, 05:41 AM   #3
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    Re: Congenital Spinal Stenosis and am told I need surgery

    Whynowthis.... thank you for your response. You are correct, I did misquote the Lumbar vertebrae.... very difficult to focus with the pain. My lumbar vertebrae that need to be made wider are the L3-L5. While my entire spinal column is too small, only the "bending" areas of my cervical and lumbar will be made larger.

    As far as SSDI goes, I know how it works and that they don't just take a doctors word for it, which is the main reason they send you to a doctor of their choice, and yet they also ignore his findings as well.

    Also, while a severed nerve "could be a good thing", I hope if one of mine gets severed it would only affect a finger or a toe. But if a nerve to my esophagus or diaphragm or some other rather important part of my body isn't severed. I am fully aware that if left untreated, worst case scenarios can result in leaving one as a paraplegic and if it's one of my arteries, death. As I stated, along with multiple nerves being pinched, there is also at least one artery as well. When it gets pinched I drop like a rock if I'm standing and slump in my chair if sitting. That's why I don't stand or walk any longer as I'm still recovering from the injury of my last fall due to this artery.

    Which is why I was so surprised SS denied me initially and recommended I find employment in a different field when every move I make could mean disaster for me.

    Also, I found, on the SSDI site, their list of ailments they typically "fast track" and having had 2 separate spinal surgeries for stenosis, i.e., cervical and lumbar, was listed.

    Either way, until I can obtain some kind of way to finance these surgeries, they won't get done, unless or until, I do suffer the severing of either an important nerve or an artery. Even as a self-pay and negotiating down, with a cost that starts as much as these do, I still would not be able to afford it. And I believe once SSDI is approved, between my husbands SSDI he already gets, and what I will get, I will not be approved for Medicaid, especially since my state, OK, refused the Medicaid expansion. At this point I think I will only be able to finally get the surgery via the PPACA. And btw, my ortho specialist and I were already scheduling the cervical surgery when the company I was working for at the time announced they were outsourcing my job.. and there was no way to get the surgery done in time before I also lost my insurance (ended on my last day at work)... so we opted for the "quicker" round of shots, that was July 2010, shots wore off within the year and I've been suffering ever since.

     
    Old 09-07-2013, 10:11 PM   #4
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    Re: Congenital Spinal Stenosis and am told I need surgery

    Hi! When I mentioned that a "severed nerve" could be a good thing, what I meant was if it happened to you, I was hoping it would give you some pain relief because doctors do this everyday to give pain relief. I understand there are nerves in the cervical region that if severed could cause paralysis, but if you are that close to that happening, why isnt a doctor doing surgery on an emergency basis, even if you have no insurance?? That just seems wrong to me. Have your doctors spoken with you about how close you are to these nerves being severed?
    I have a lot of experience with SSDI, thats all i can say on here, and understand the "fast track", but again like I said spinal stenosis isn't one of the "compassionate allowances". You can go do a search of "compassionate allowances" if you would like to see which conditions can be "fast tracked". "Compassionate Allowances" are also usually terminal illnesses. I would give a link, but they don't allow us to give links on here.
    Keep in mind, Im not here to argue about your conditions, but I want you to have a frank discussion with your neurosurgeon about the state you are in because if you are truly that close where one wrong turn of your head could paralyze you, you NEED to have emergency surgery!! By someone else if your doctor won't do it! Go to the ER if you need to. And if you arent yet quite that close where you would need an emergency surgery, a frank discussion could give you some peace of mind. The reason I come on here is because I have knowledge of the system, and I like to try to help others out, because it is such a confusing, complex system, and is hard to navigate at a difficult time during people's lives. My goal is simply to help out where I can!
    I still think with what you are saying, and your age, you should have been approved, so I hope you are approved at this next level. And if you stopped working in 2010, you should qualify for Medicare as soon as you are approved, so you should be able to get that surgery! Good luck!!

    Last edited by Whynowthis; 09-08-2013 at 04:53 AM.

     
    Old 09-08-2013, 05:15 AM   #5
    GeanieT
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    Re: Congenital Spinal Stenosis and am told I need surgery

    Whynowthis.... I continued to work after receiving the last, sixth, round of shots in my neck in 2010. And as all others, the shots had worn off within the year. By then I had no insurance even though I was still working... again, as part-time with max hours at 24/wk and then reduced to 16/wk... couldn't afford insurance on my own. And to be honest,the only reason I was able to continue to work until Jan 2013 was due to the reduced hours... while it was not good financially, it was a blessing in disguise as it did allow me to at least work some. My ortho doc ordered me in January of this year to stop working. I immediately filed for SSDI.

    I just had my last visit with my ortho this past Wed to go over my latest MRI. He sat down, pulled his chair right up close to me and explained how important it was for me to get the surgery. He said "I know you understand the purpose of the surgery is to widen your column... but... there are more important reasons to do so.... the nerves and the artery that you are suffering from are being damaged... they are being pinched and they will continue to be pinched... the longer you wait for the surgery the more they are being damaged.... even after we enlarge your column... there's nothing we can do to fix any nerve or artery damage... those damages are and will be permanent".

    I told him I already knew that and that is why all I do is sit and do my best not to move my head or neck. I was fighting back tears. I told him, again, that he knows I no longer have insurance... I told him, again, that I also do not have the personal funds to pay for this.... I asked him, again, please tell me how I can get this done instead of waiting.... his response... silence. And all the while there was no denying the level of pain I was suffering just sitting there in the exam room.

    As far as getting the surgery done as emergency... I know the hospital has a charity program and would write the entire "hospital" bill off... but not the surgeon or anesthesiologist or any of the other costs that are NOT hospital costs. I would still have many bills I simply can't afford. The doctors know that and evidently aren't willing to "give".

    I am so willing to do just about anything, but to push myself to the point of actually severing something to get the emergency attention I need, just isn't one of the things I'm willing to do. I'd rather continue living like a statue and stave off any kind of paralysis, or death, than to push and face whatever tragic event it could possibly leave me with. For me, the PPACA availability just can't happen soon enough.

     
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    Old 09-08-2013, 07:50 PM   #6
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    Re: Congenital Spinal Stenosis and am told I need surgery

    I know doctors are in the business of making money, but I would think that occassionally they should do some charity work for people who clearly need it. It sounds like you clearly need it and are caught between a rock and a hard place. And I know they have bills too, but I don't see what it would hurt to try to sometimes throw a freebie out there for someone in your situation. It's got to be frustrating. I remember the frustration I felt when trying to get approved, and I had no insurance also and it was hard, but my condition is inoperable, so I didn't have that added worry of needing a surgery done ASAP and not being able to get it. It truly breaks my heart. I hope something positive comes your way soon!!

     
    Old 09-09-2013, 09:48 AM   #7
    GeanieT
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    Re: Congenital Spinal Stenosis and am told I need surgery

    Whynowthis... Thank you so much for the kind words. And believe me, I have hoped my doctor would actually do it as charity for me... and I'm sure he knows that as well with my constantly asking him how am I supposed to pay for this.

    Your thoughts and prayers are sincerely appreciated.

    I will do my best to post any updates as time goes along. Hopefully I will win this appeal and that it's done by at least early next month (October).

     
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    cervical, cervical surgery, spinal stenosis, spinal surgery, stenosis



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