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Thread: Intro: Day 218 Headache in Missouri

  1. #21

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    The Neck and Spine specialist was a good doctor, but this step didn't help. He could see some degeneration, but there is not a "bulging disc" or a "bone spur" that would demand any sort of action. He added his support to my file.

    I am following-up with my Neurologist. He is at the VA most of the week and only at the Neurology and Sleep Clinic one day a week, where I see him. You can see how things can easily be delayed "another week". My hope is that he can perform the RF Ablation and deaden the nerve. Ablation is temporary but is supposed to be effective for about 11 months. With the pain stopped for that long, I should be able to get through the Physical Therapy to eliminate the problem. The Ganglionectomy is a permanent and expensive in-patient procedure, Ablation is an out-patient procedure.

    The only other route for treatment would be to check with the Laser Spine Clinic. Doing the surgery this way, should be less
    The surgical procedure costs the insurance company $81k. If I walk in with a bag of cash, it costs $38k. It's all about the money.

  2. #22
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    (((((((Greg)))))) ~

    Positive energy and prayer flowing your way that your neurologist will be able to see you sooner rather than later and that he will schedule you immediately for ablation, and that it will work for you, so that you can benefit from PT. And, most of all, be pain free!

    Yes, money drives the market in medicine. In everything.

    Healing prayers for you, Greg, and please keep us updated on your progress.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #23
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    ((((((Greg)))))) ~

    Hope you've been treated by now and are feeling better. Please check in when you feel up to it. Healing prayers on their way for you.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  4. #24

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    Day 483
    I got a Toradol shot today, this is the best I have felt in days.
    My shoulder has been hurting. Physical Therapy is the plan, being this active has aggravated my headache. PT has only served to irritate the "ITIS" in the joint and mess me up. Tomorrow, I will be getting a cortisone shot.
    The determination of the External Appeal is what I am waiting on. The deadline for them to have a determination is December 16, 2015. I talked to the guy and he said they would try to have it within a few weeks...last Friday was 3 weeks. Overturning the administrator decision would be nice, but the plan is pretty clear, "Occipital Neuralgia" is specifically not covered for a nerve excision or RF Ablation.
    I sent MCHCP, the plan administrators a letter. They don't want to override the plan until I exhaust all the appeals. So that is what I am waiting on, the result of the last appeal.
    My plan is to give MCHCP a two week deadline to make a decision before I "take the next step".
    Things will accelerate on that day. I will schedule an RF Ablation procedure, it's temporary but this is a procedure I can afford. I will file a complaint with the State Department of Insurance. I get a lawyer and we won't just be looking for medical costs. They really don't want to see this side!
    I have to get through one day at a time until I get to start living again.
    Greg

  5. #25
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    ((((((Greg)))))) ~

    I'm glad that the Toradol shot has helped you, and I pray that it continues to do so, as well as the cortisone shot.

    What a nightmare you are going through with the System refusing to help you, and delaying and delaying. I'm so sorry.

    Your plan sounds good. Do you have an attorney in the wings to take on your case, should that need arise? I would line one up as soon as you can, and before you have the RF Ablation. Ducks in a row ...

    I'm thinking of and praying for you ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  6. #26

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    Day 500
    The results of the External Appeal came back today, MAXIMUS upheld the denial of services. After speaking with my insurance administrator, they said the External Review is the final decision. Their response comes down to, "Get used to the pain or pay for it yourself!".
    With their program, I would have been better off with Brain Cancer.
    Their game is all about money. I guess it's time to take a seat at the table and win at their "game". Time to Lawyer-Up!
    I have an appointment with my NeuroSurgeon next week to plan the RF Ablation. Even if it is only temporary (11 months), I may be Pain-Free for Christmas!

  7. #27
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    ((((((Greg)))))) ~

    I'm so sorry that Maximus denied your claim. How horrible that the panoply of neurological issues is not covered by your insurance. I hope you find a great lawyer and win.

    Meanwhile, I hope that the RF Ablation is scheduled soon. The sooner you are pain-free, the better.

    Sending healing prayers for successful treatment and relief for you.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  8. #28

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    Thank you,
    Greg

  9. #29

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    Day 508
    Yesterday I had an unproductive consultation with my NeuroSurgeon. He explained how Insurance screws us over...if I were on Medicaid, they might pay for the procedure.
    I also had a consultation with a lawyer. He can write some letters after gathering more ON Studies and treatments. If it is successful, the insurance company may "waive" their policy in this case.
    I did set up an appointment with my old Pain Clinic Doctor for some injections. I have little hope of this helping.

    My plan to do my own research, learn everything there is to know about this problem, and come up with treatment on my own! I am going to present this to the insurance industry and change this damn system where the treatment is available and these insurance companies can get away denying it!

    Please forward all medical papers and studies of Occipital Neuralgia to me. I don't have details or a website set-up, but I will find a way!

  10. #30

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    I used a rolled-up towel to provide "traction" on my neck. The next morning my pain was gone! Day 518

    I'm not a doctor, but maybe this can help someone else. Most of the posts on this site sound much worse than my problem.

    My problem began from using a slumped-over posture at my job working at a computer. After years and lots of stress if finally caught up with me. I was exercising with my neck in that same position, the extra pressure compressed my C-2 nerve and the pain began. A stabbing pain behind my eye, around the ear, back of the head, and neck - all are the left side.


    No headache treatments gave any relief. Duh, the problem is in my neck. The problems with my doctors were silly, it took 9 months before a Neurologist actually gave the Occipital Neuralgia diagnosis. My insurance company, United Healthcare, doesn't cover treatment for ON. Going through the appeal process has been frustrating load of crap. So it's up to me to come up with a solution.


    At that point I had already done hours of research, but I didn't have a solution yet. The internet is a wealth of knowledge, but it can be a challenge to learn what is useful. After learning about sitting posture, sleeping posture, cervical biology, nerve anatomy, ON treatments, physical therapy, and headache pillows I had a plan.


    Having your cervical spine in line while sleeping allows the discs between the joints to relax and open-up. Sleeping on your back or belly is bad, turning your head keeps pressure on some of those joints. Traction is used to "force" joints open.


    My left C-2 nerve was compressed. I rolled up a towel and placed it along the bottom of my pillow. Laying on my right side, the towel supported my neck and the weight of my head gently reduced the pressure on the nerve. In a few minutes some tingling started to replace the pain in those areas of my head. I slept this way through the night. My neck was a bit sore the next day (I slept on a towel log), but the headache is gone. All day there were moments when moving my head would send a spike of pain. It will take some time for the irritated nerve to heal.


    I slept that way again last night, there wasn't any tingling this time. Today there was very little soreness. The towel may not be needed after this point.


    This worked for me, I hope it can help someone else. Nobody deserves a condition like this!

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