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Thread: Intro: Day 218 Headache in Missouri

  1. #11

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    My treatment doctor has scheduled to do an Occipital Nerve Block at the end of the Month. I'm sure the results will be different than December.
    I finally have a plan and a schedule.
    I see my new neurologist the day before.
    It's Day 234.

  2. #12
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    ((((((Greg)))))) ~

    Finally! Good for you. I hope and pray that all goes smoothly. Be sure to post here to let us know when you're having the procedure and then again to tell us about the results.

    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. #13

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    Day 242
    I had my initial exam with a new Neurologist. He gave me a shot (Occipital Nerve Block) and it eliminated the pain behind my eye and around my ear. These were the worst part of the pain. There is still the pain in the back of my head and my neck pain.
    I am so happy. He gave a diagnosis (Occipital Neuralgia) and we have a plan when the Nerve Block wears off. Ablation then possibly Neuectomy.
    Right now the pain is much relieved. I feel so much better! I may not be quite done yet, but we are on the home stretch.

    For everyone else enduring pain, try to keep your attitude positive and keep learning more about the problem and the solutions. You will find the right doctor who has the solution.

    Thanks again to everyone on the board.
    Greg

  4. #14

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    Day 292
    I had my initial exam with a Neurosurgeon yesterday. He planned the Occipital Ganglion Nerve Block at C2....for today!
    The shot was Lidacaine and a steroid. The local kills the pain at the skin level. When the needle hit the bone...that was a special room of intensity. I left a wet spot on the table, it was drool.
    The headache pain is gone. My neck still aches, it may be something to do with being stabbed with a sharp piece of steel. If the relief is only temporary, we are still closer to a permanent solution. We know the area to attack.
    24 Hour recovery. Life begins again tomorrow afternoon.
    Thank you to my doctors and everybody here for your support!

  5. #15

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    Day 356
    Five days after the block, the pain returned. After another visit, we decided to schedule an excision. This is cutting the nerve. I had very little decreased sensation from the block so this is the right plan.
    Three days before the surgery, the office calls to tell me the Insurance Company denied the procedure. From the letter, the joker at the insurance company didn't even bother to read the entire file. He said the procedure is not medically necessary, "the patient experiences some headaches". It is a good thing this...decision maker is eight hours away from my hands. It helps keep me from doing something stupid!
    I'm a bit disappointed with my neurosurgeon. He can submit an appeal of the decision, but I still don't have confirmation yet that is has been sent. He is meticulous, this is a good thing when he is working inside someone's head or spine. Writing the appeal has taken a month, it was probably good enough on the first draft. I have left phone messages and e-mails to the office and finally gotten a response yesterday. The appeal is supposed to have been sent then.
    We'll see!

  6. #16

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    Day 429
    The Appeal was submitted by my Neurosurgeon after waiting 13 weeks. The insurance company has everything to review, they have 30 days to make a determination. That will be October 14. The appeal ripped the insurance company a new one. The first line said this is a clear cut diagnosis. It goes on to list the types of meds, therapies, and the diagnostic procedures. Then it references a Journal Paper, authors, and determination of the procedure. He even asks for a scholarly response citing the specific papers.
    I found out I could have sent the appeal myself, the Neurosurgeon's office lied to me. My response may have not been as technical, but I came across that specific paper eight months ago. My appeal probably would have contained name calling and physical threats...maybe not the best plan.
    I have been suffering from constant pain like an ice pick for 15 months, my patience for people dragging this out is over.

  7. #17

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    Day 430
    The Insurance Company review of the Appeal - they are upholding their denial. They said cutting the nerve is experimental and not covered. I don't know what I am going to do. The pain is always there and it increases when I'm more active than just laying around. My neck hurts, especially turning to the left, it's getting worse.

  8. #18
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    ((((((Greg)))))) ~

    I'm so sorry that your insurance has denied your appeal for this surgery, and that you continue to suffer unrelenting, horrible pain. And that your neurosurgeon dropped the ball. Does he have any other suggestions for you? Can you see a different neurosurgeon for a second opinion on viable options to help you, in lieu of this surgery?

    I wish that I had an answer for you. Just know that I'm saying a healing prayer 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.

  9. #19

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    Rose, thank you.

    The source of my pain is some degeneration in my cervical spine. This compresses the occipital nerve and activates it causing the referred pain. Physical Therapy is good treatment for spinal stenosis, but doing anything physical increases the pain over the next several days. For several weeks last year I tried PT, I had to be on high doses of narcotics to get through the day, (nights were worse). Excision of the nerve would stop the pain and allow me get through it.

    I have an appointment in the morning with a neck and spine specialist. My neck is hurting and gets worse when I turn my head to the left. Treating the source of the problem should stop the pain. Blocking the nerve may be part of the treatment. Radiofrequency Ablation may be temporary, but that might be a step toward the solution.

    Greg

  10. #20
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    ((((((Greg)))))) ~

    Good, I'm glad that you're seeing a neck and spine specialist tomorrow. Sending up a prayer that a solution is found for you.

    Keep us posted.

    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.

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