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Yes, I'm a newbie!


I'm here out of concern about my cervical spinal issue.

I've read some of the posts here and I don't think mine is that bad, so maybe I shouldn't be whining, but at the same time, well I kinda need to whine.

I started having symptoms about 2 years ago now. Numbness, tingling in my legs, hands, and the left side of my face. That was the scariest symptom at first. Gradually, I have had leg pain, in both legs, shooting, electrical lightning like pain in my legs and also down my left outside of my arm that would shoot into my last two fingers. I have also had on and off, insidious as heck, and very random, heaviness in my legs, arms, and through the shoulder to upper back area. There is a lot of rice crispy type noise too, at my neck and it drives me NUTS. I cannot turn my head very far to the left or to the right and this is becoming worse, and I notice it more when i drive and have to turn back to look behind me.

Long story short, I have fibro and was sent to my Rheumy. He had a neck x ray done, that showed some degeneration, but enough that required an MRI and HOLY SMOKES...I had no idea! I have moderate stenosis in C5-C6 with osteophyte complex and mild foraminal narrowing. In C-6-C7, I have moderately severe canal stenosis, cord impingement and moderate foraminal narrowing and a large osteophyte complex. In C4--5 I have mild stenosis and a small osteophyte complex. My Rheumy suspected radiculopathy and/or myelopathy. sometimes, when I go to grab small items, like change, I cannot grab it right. I can't explain this. I drop things suddenly, as if I can't keep a hold of them. These are not constant, it is infrequent, but it makes it very difficult because I have often told myself that this is all in my head and not real. (well, it kinda IS all in my head lol).

But lately, I've been very concerned because now the pain has increased at the sight of the stenosis, at the base of my skull. It is becoming more and more painful by the day. Heating it helps somewhat and I do stretches, am a good, healthy weight and I eat right. It hurts when I turn my neck now and it hurts sometimes at night enough to awaken me. I'm a little frightened because of the cord impingment too.

I am poor and have state insurance. I can't tell you how much I have been jacked around by neurology. I can't even get into see them. A neurosurgeon did a med review of my case and said I definitely needed surgery but they wanted an EMG first before they'd even look at me. I think they're just hoping I go away. They say they have too many patients right now on state assistance in their care. WHAT? Many of these symptoms over the last year, have been debilitating to me. I asked my insurance advocate why they are pushing back so hard, do they believe my symptoms aren't real? that doesn't seem to be the case, it appears that my cord impingment is serious and that appears to be the problem. I can't even get an EMG done because they're fighting me on this too. meanwhile, my condition is worsening.

How much worse and how rapidly can this progress, particularly when my condition seems rather progressive to begin with? They said I have DDD, moderately severe in the cervical canal and I have it lower lumbar with a slight protrusion and annular tear, but the beginnings of DDD there. My lower back is bothersome but only when I do too much, and then there are times when the sciatica will act up and it's MISERY.

I'm very frustrated as I believe this surgery could very well give me my life back. I can't understand their hesitation. I can't get in to even ask a neuro QUESTIONS about my condition, how serious, what to expect....but this is concerning...

Thanks for letting me share here.


  • Hi Kay :) From 1 state insured to another let me be bold and say that YOU & only YOU will be your own advocate! If I were you I would find a GOOD hospital (look for reviews online) that has a awesome nuro clinic and grab your records and go there. Why? Well for several reasons 1. I have never been turned away from a big hospital due to my insurance (I have UMPC For You). 2. Some of the BEST Drs are working at these hospitals. 3. They stay up to date and know what is working/not working.
    4. They have connections. If they feel you can get good care from a local Dr they will recommend you & most of them know who takes what insurances.

    Even if you have to travel for hrs for the first several times, it would be a good place to start at :)

    Please keep me posted. I will be sure to check this thread to check for updates from you. If I can be of any help to you ai sure will try :)
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • RickilalasRRickilalas Posts: 559
    edited 11/18/2012 - 9:17 PM
    Hi I did not ever think I would be taking advice from a MsHumptyDumpty LOL but yes she is right.
    Reading your post was almost like my history. You need to get copies of what records you can.
    (To save time) and get them to a nuro or or tho in a county or teaching hospital.
    The issues you have may be serious and need to be looked at very soon. The University hospitals do a lot of work for people with no insurance. Some will even have a case worker see you to see if there is any way to get help for you.
    You have to stay on top of this. Don't give up keep pushing your way in.
    Keep us posted
  • tamtamttamtam Posts: 2,749
    edited 11/19/2012 - 5:31 AM
    First let me say welcome to spine-health. You are not alone when you say you have pain, and issues with your spine, with no insurance. However, you can buy insurance your considered not insured so you can buy it already, through the national exchange. Go to the federal department of health and human services and you will find links to it. The problem that you have with your insurance is that most spine surgeries are considered elective surgery. Yes I know many have cord impingements and so on and who would think that is elective. The problem is your life is not in danger so it is considered elective. If it would give you your life back, you can't almost not afford to go the federal way.

    So you understand the condition of myelopathy. Once they deem you have myelopathy, surgery is done to stop the progression but not to undo the damage that has been done. So without the surgery it will progress, how fast, no one can answer that question. I would watch what I lift and carry along with how you bend. You don't want it to progress more.

    Obvious the other thing you can try is to get on the state insurance company. You might have to go see the social worker and camp out in their office to get them to help you. The emg is a good tool and many surgeons want the test before performing surgery, it can give them a base line of if you have nerve damage or not, but addition it also helps them push the surgery forward. The surgeons know what it takes to get a surgery through the insurance companies and I would bet that is on the list, along with trying some conservative type treatments. Yes I know it bites you have to do it, however even those with insurance have to go through these same hoops, so don't feel like it is just state. If you still get no place, call your local elected officials, call the governors office and keep calling. Trust me they will get tired of you calling everyday and do something.

    Good luck and I hope you find away to get some treatment, Keep us posted. By the way I am fused from c3-c7 so if I can be of assistance don't hesitate to pm me. Once again welcome to spine-health.
  • I ditto the above, I went to Univ. Hospital they asked to see my taxes, and found out I had no $ to pay, I was layed off work and 3 months later I had horrible left arm pain. I was also dropping things, and had to lye down all the time:( no quality of life.
    They had a Charity Help Me :). I had to have a acdf 3 level. When I first heard the news of this I was in tears, I knew something was NOT right with my body.

    Good Luck and please keep us informed. This Is the right place for help, support and understanding.
    ACDF C4-C7 5/13/2010. Synthetic Bone Graft Failed Fusion.
    PCF C4-C7 8/13/13. Rods and Screws Fused in 3 Months with Autograft.
    C6-C7 Spineous process Surgically Shaved Off 3/11/14.
  • Hi and welcome, I also am on state insurance and already had my surgery and have copies of most medical test done since 2008. You have to take charge as no one can help you as much as you, I can't give you any better advice than you have already received. I was eligible because of my limited income as I am on disability and start Medicare January 1st, I hope you find relief and if and when you have surgery please do not expect to feel the way you did before. We all have to adjust our lives because of spine issues. God Bless, Joe
    ACDF C5-6 July 10, 2012 with plate and screws.
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