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Recurring Occipital Neuralgia

Brain & Nervous System | Last Active: Aug 25, 2022 | Replies (18)

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@jojo58

This is JoJo. I believe a lot of this is hereditary and also comes naturally as you age. I’m 60, so kind of young on the age spectrum. But also from what you did in your teenage years and twenty’s. I played a lot of sports (hit in the head a lot with LaCross). Helped my granddaddy on the farm hauling hay. My back is shot. Minor scoliosis, degenerative disc disease, osteoporosis, osteoarthritis, 4 spots (thoracic and lumbar) this is not bothering me at the moment. My whole neck is compressed with occipital neuralgia on right side, severe stenosis, and bulging disc. I’ve had shots in the occipital nerve that last about 3 months. Now My whole head hurts, neck and upper back and shoulders. Neurosurgeon wants to fuse C1-C-2 with a cage for the stenosis and repair bulging disc. I go to bed in pain and wake up in pain. My orthopedic gave me Duloxitine for nerve pain. It does help. The neurosurgeon was kind of nonchalant about it like no big deal. I do have a lot of medical knowledge and this is a serious surgery. It’s risky and still may not relieve the pain. But the stenosis needs to be fixed if I don’t want to end up in a wheelchair. I’ve put it off because I haven’t found a surgeon that I like. I have 2 beautiful grandsons I help with. I live with my son. But I’ve seen posts of taking a long time to heal and I can’t afford to be out of work that long. And I won’t be able to take care of my 10 month old grandson. I was also a gymnast till I was 18. My body used and abused. I smoked and drank beer. They blame it on that. My mother’s younger sister has same issues with psoriatic arthritis, I have exzema. She said I should see a rheumatologist. I live in SC. They refuse to see me. But in PA where I’m from they will because they’re linking psoriasis and eczema in the same group. And all these specialists want money upfront even though I have insurance. Another reason I’ve put it off. Nothing free here. Before Covid it wasn’t like that. You paid your part after insurance. Anyone else with any answers or suggestions to any of this would be greatly appreciated. I feel for all of you as people don’t realize how painful it is.

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Replies to "This is JoJo. I believe a lot of this is hereditary and also comes naturally as..."

JoJo here. I need to edit 4 spots of stenosis in my back. Currently not bad enough to have surgery

Hey there @jojo58, I'm Rachel, it's nice to meet you. You sure have a lot going on and what I've gathered from your post is you are an overachiever, active and dare I ask....a little bit of a perfectionist? If I'm right, well, it takes one to know one. 😉

Although I don't have experience with spinal surgeries, my fellow mentor @jenniferhunter does. Have you spoke with Jennifer yet?

You mention holding off on surgery. That's wise considering it should be the absolute last measure. My experience falls on the rehabilitation side of chronic pain management. I've graduated Mayo's Comprehensive Pain Rehabilitation Center. Are you familiar with the program? I'm wondering if that might be a good direction for you to go in?
Here's a link about the Mayo PRC:

https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

My draw to the program was based on past failed treatments like epidurals, nerve blocks ablations, physical therapy, chiropractic, acupuncture, MFR, Botox, migraine injections etc... I was physically deconditioned and emotionally stressed by my physical changes which recreated this new sucky life. Now I am self managing and in better control using my tools from Mayo. It's hard work but incredibly rewarding.

Jojo, you are beaming from here about your grandkids! I know what it's like to want to keep up with work and kids and lifestyle all while in chronic pain. Do you think a different approach such as pain rehabilitation would be beneficial for you? Just a thought. I look forward to hearing back from you.