sorry no never have a spinal tap.
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.
Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.
First of all, I doubt this is a genetic disorder. Secondly, headaches are difficult to treat, particularly if misdiagnosed. It is impossible to tell you if what you have are migraines or another headache type, but I would like to bring to your attention a few other headache variants. These are cervicogenic headache and occipital neuralgia.
Cervicogenic headache is a headache that is "referred" to the head from bony structures, muscles, and other soft tissue in the neck and shoulders. Symptoms are usually one-sided and include: precipitation of head pain by neck movement or awkward neck positions, head pain when external pressure is applied to the neck or occipital region, restricted range of motion of the neck, and neck, shoulder and arm pain. Treatment for cervicogenic headache includes physical therapy, medications, behavioral therapy, and other modalities.
Occipital neuralgia is caused by irritation or injury to two nerves that run from the upper neck to the back of the head. The irritation could be due to neck trauma, pinching of the nerves (by muscles or arthritis), and other causes. Symptoms include a piercing sharp pain that travels from the upper neck to the back of the head and behind the ears. It is usually a one sided pain but can be on both sides of the head. Treatment includes physical therapy, medications, and in some cases injections, "nerve blocks", during which a physician injects the irritated nerves with an anesthetic.
Based on what you wrote, the MRI does not seem to be the cause of your headaches. You do mention that you have had a prior surgery which makes treating pain syndromes more difficult.
If your headaches are not controlled with the current medications, you may need to be referred to a neurologist who specializes in headaches or be referred to a chronic pain physician.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
Did you ever get a lumbar puncture I got steroids epidural 2 weeks ago and have leaking spine fluid which is causing headache vomiting and neck pain .I also gave fusion L
/5 and C/3 C/4