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Thread: Intro: Day 218 Headache in Missouri

  1. #1

    Default Intro: Day 218 Headache in Missouri

    Hello, let me to introduce myself before I begin whining about my problem. I am Greg and for 51 very athletic and undamaged, at least until the headache put me on the couch.

    Although headaches have never been a problem, I had gotten into a bad habit of extending my head forward trying to read the computer. I sat this way at work all day and spent time in the evening in this position while being wound up with stress. When the headache began I was finishing a Leg Workout (same neck position). The MRIs and CTs show degeneration in several areas, so ON is a reasonable conclusion.

    There is pain in my neck, but mostly behind my eye and around my ear - only on the left side. It feels like something chewing it's way out of my skull through my left eye socket.

    I have been seeking treatment from the beginning, but Jefferson City, Missouri does not have a Mayo or Johns Hopkins. I have been through two Neurologists and 3 Pain Doctors - still no diagnosis from an MD. I don't want to talk about the last Neurologist, he did an initial exam and replied to two e-mails....

    The current plan is to get my primary to refer me to a Headache Center in St. Louis. Hopefully, we can test for ON and RF Neurotomy for the Nerves. It can all be done in an afternoon if I can find a Neurologist.

    Do you think it may be ON?
    Do you work with good doctors in the area?
    Am I missing something else?

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  3. #2

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    Hello BanzaiBeast!

    Welcome to BrainTalk!

    I don't know anything about ON, but seeing a neurologist was a good way to start finding out about your medical issues. I think the headache center is a good next step. I'm sorry about your poor experience with one doctor. Many of us have had the same experience and find that sometimes you have to go to many doctors and explore different avenues before you find someone that can help you. We don't "work" with doctors, but we do support you and give you our experiences with the medical community.

    Since this forum, Occipital Neuralgia, isn't very busy, I would suggest you also post your question in the Chronic Pain Forum, which includes all types of pain, http://braintalkcommunities.org/foru...9-Chronic-Pain

    Once again, welcome to BT and I hope you do post in the Chronic Pain Forum.
    Last edited by Moderator #7; 03-03-2015 at 10:45 AM.
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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((BanzaiBeast)))))) ~



    Welcome to BrainTalk!

    I'm so sorry that you are suffering with pain and haven't received a diagnosis yet. I hope that the headache center will help you.

    I agree with Moderator 7 and encourage you to post in the Chronic Pain forum, where your post might receive more attention.

    Have you considered exploring non-traditional options such as consulting a chiropractor, acupuncturist or naturopath? I tend to be a broken record with that suggestion, but I know many people, who found help/relief from a non-traditional treatment/practitioner, so I suggest it as another alternative.

    Hope you find the answers and relief you need ~

    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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  7. #4

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    One of my doctors finally gave me a diagnosis - Occipital Neuralgia.
    We are scheduled for the RF Ablation on Wednesday.
    This is the first time in months I have actually felt happy and excited.
    I know this is nothing like conquering Cancer, but I am going to be living my life differently from now on...
    Thanks for the support!
    Greg

  8. #5

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    Hi Greg!

    I'm glad you finally got a diagnosis! I hope your surgery goes well, you recover quickly and have a great quality of life!

    I hope you come back if you need any more support and please tell us how your surgery went. It would be great if you posted your experiences so that others with ON would be encouraged!

    Best wishes...
    Moderator #7

    It's really easy to put someone on ignore and it's strongly recommended that you do so with people whose posts you don't like.

    Step 1 - log in
    Step 2 - click on the "settings" link
    Step 3 - click on the "edit ignore list" link on the left side of the screen
    Step 4 - type (or paste if you copied and pasted it) the username of the person you want to ignore
    Step 5 - click the "ok" button on the right of the screen

    One important note though, this won't hide quoted posts. It's an oversight on the developers part and it's not an easy thing to "fix." So if someone quotes someone you have ignored, you'll see the quote.

    Alternatively when you click on a person's name and view their profile page, underneath their avatar, there is a option that says, "Ignore this person". Click that link and then click the yes button.

  9. #6
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    ((((((Greg)))))) ~

    Sending positive energy your way for Wednesday's surgery.

    Please do return to let us know how you are and share your experience with ablation.

    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.

  10. #7

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    I jumped the gun on saying "scheduled for Wednesday". My records have to be released from one office/hospital to the doctor doing the procedure. It's infuriating, after taking a couple of hours from work to drive 40 miles Thursday to sign the release, the hospital doesn't show the release request was ever received. Missing Wednesday means Monday or next Wednesday will be the soonest I can get the procedure. The person who took my signed release who was responsible for sending it will be in the office tomorrow. If there is no proof it was sent, I'm going to hospital records and taking the records to the doctor in my own hands.
    These people don't seem to understand I have an icepick in my head every minute until the treatment. Day 225
    Please excuse my rant,
    Greg

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    ((((((Greg)))))) ~

    Rant away! You certainly have reason to do so. And that is one of our many purposes here at BrainTalk.

    I hope that you don't have to hand deliver your records to the doctor. Just more stress for you, which you certainly do not need.

    Stay strong. Relief is on the horizon. Please let us know when your surgery is scheduled so that we can send you positive healing energy.

    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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  14. #9

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    The doctor finally called me back. He would not perform the procedure and recommended I go back to the pain doctor I had been working with for two months. I get the feeling he is covering his butt. While trying to make a diagnosis, he performed two medial branch nerve blocks in December. The pain relief did not last long enough to determine the blocks were successful.
    A negative result really makes things confusing, so my new doctor tried several more drugs and procedures to make a diagnosis. Throwing out that result, Occipital Neuralgia fits very neatly for the symptoms and the cervical degeneration. It only makes sense that the result was a false negative. I was in a lot of pain, I was on pain meds, and I was exhausted.
    Doctors have to be so concerned with Malpractice, they can't admit some procedure may not have worked right. Making patients better is not the first priority.
    I hope I didn't piss-off my last Doctor too much when I said I needed to seek other treatment.
    I have an appointment with a different neurologist in two weeks if I have to start from square 1.
    It's Day 233.

  15. #10
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    ((((((Greg)))))) ~

    Oh, my! I'm so sorry you're going through all of this, while contending with incessant pain. It must be awful. I wish that I could help you in some way.

    Let me just suggest again that you try posting in the Chronic Pain forum:

    http://www.braintalkcommunities.org/...9-Chronic-Pain

    Folks, who post there, understand pain and treatments for it, and they might have ideas to help you.

    Also, you may want to contemplate alternative medicine, like acupuncture, etc. as I mentioned previously. Probably can't hurt ... might help ... ?

    Prayers going up for you, Greg, that you get relief very very soon.

    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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