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Intro: Day 218 Headache in Missouri

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    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?

    #2
    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, Only registered and activated users can see links., Click Here To Register...

    Once again, welcome to BT and I hope you do post in the Chronic Pain Forum.
    Last edited by Moderator #7; 03-03-2015, 10:45 AM.

    Comment


      #3
      ((((((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, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

      Comment


        #4
        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

        Comment


          #5
          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...

          Comment


            #6
            ((((((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, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

            Comment


              #7
              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

              Comment


                #8
                ((((((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, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                Comment


                  #9
                  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.

                  Comment


                    #10
                    ((((((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:

                    Only registered and activated users can see links., Click Here To Register...

                    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, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                    Comment


                      #11
                      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.

                      Comment


                        #12
                        ((((((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, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                        Comment


                          #13
                          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

                          Comment


                            #14
                            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!

                            Comment


                              #15
                              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!

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