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Confused, in pain
Jan 5, 2019
Buckle up, folks.....and thanks in advance for reading all the way through :).

I have always had a sore neck. I've been through PT, which helped temporarily, but have had many a chiropractor, doctor, orthopedic doc, massage therapist, etc...... comment on my awful, tight neck muscles and reversal of cervical lordosis.

Fast forward to late 2017, I began to have weird muscle fasciculations in my forehead and some persistent "foggy headedness" got worse. I was referred to a neurologist that ordered a brain MRI, which was fine. Fasciculations and cognitive issues continued, always getting worse in the afternoon/late evening. Freezing cold hands/colder than others around me.

In June of 2018, I took a short (1 hour) flight. When I landed, I was in misery. I thought it was a migraine, but the pain was completely unresponsive to any meds. I soon added vertigo, nausea, GI issues, random muscle weakness and random muscle twitches. I flew on an airline I usually try to avoid, because their seats have always caused neck pain in the past.

My headache (primary pain symptom) was unrelenting. Trip to ER resulted in a CT, also normal. Pain level a pretty constant 8/9, until I went to bed at night. I had relief then, only to have it start again when I got up (or if I tried to sleep on my back).

My neuro jumped on the "it's a migraine"-train. Threw a bunch of beta-blockers, gabapentin, new triptans, etc... at me. Got some fun new side-effects, but no relief. I finally got her to agree to a cervical MRI (I'd been telling her it originated in my neck from day 1). She told me to have the MRI, immediately get the disk (before it was read) and take it to her office.

She reviewed the disk, said "oh, you have reversal of spinal lordosis/"military neck", I'm sending you to PT". I did PT for about 60 days, which often made it worse.

I started with a new neuro, who ordered an MRI (brain) with contrast and referred me to pain management. This MRI was also fine, but showed signs of degenerative disk/arthritis. Pain management initially tackled the headaches as occipital neuralgia, but trigger point injections did nothing.

Next, they tried an epidural steroid injection. Eureka! I thought I had my answer. I had several mostly pain-free days! Then the bottom fell out and my pain level went right back to 8/9. A second injection. Some pain relief (not as profound as the first round), same sudden stop to the relief, but at least it got me mostly through the holidays.

Because of the positional nature of my headache, they've scheduled me for a blood patch in case it's a cerebral spinal fluid leak.

Friday, I called the neurologists office to ask about some anomalies I could see in my cervical spine MRI. They told me they didn't have a record of me having one........the first neurologist did not release it to them. It was at that time that I realized I never received a copy of the radiologists report from that MRI (to this point, I thought my new neuro had the info), so I went and got a copy.

Paraphrasing the results: diffuse posterior disk osteophyte complex causing thecal sac deformity and diffuse flattening of the ventral cord. This is occuring at C4-5, 5-6, 6-7. It is eccentric to the right with uncoverebral hypertrophy.

Mind you, I really have no idea if this is significant or not. It sounds not normal, but the results have never been addressed with me.

I'm confused at this point. My symptoms worsen as the day goes on. Driving is very difficult (I begin to have a sudden increase in pressure and pain within 10 minutes of getting in the car, whether as a patient or driver), as is sitting for a long period of time. Sometimes walking/standing helps. My pain level is not a constant 8/9 now, it tends to be lower when I get up in the morning. Depending on the activity of the day, it can get to 8/9, but usually hovers around 5/6. Still nothing helps the pain.

When the pain is high (8/9), I get vertigo, muscle weakness (my knees will randomly give out), nausea, diarrhea, visual disturbances (if I turn my head to the right, my vision will tunnel), confusion, cognitive decline, etc.... When I get up the next morning, I'm fairly normal again. If my pain hovers around 4/5'ish, I may get one or two of these additional symptoms, but not all of them and not as severely. BTW, I'm told it's a "coincidence" that these other symptoms flair at the same time as the head pain.

If it's raining or the barometric pressure drops, I'm guaranteed an awful day(s).

I will be sending these results to my neuro on Monday and have an appointment later this month. Do I go through with the blood patch? Are the headaches even related to the MRI findings?

The intensity of the pain has blind-sided me. I feel like something degenerative should creep up slowly, not change my life during a 60 minute flight. Is this my life now? Will I never enjoy what I did before? I'm 45 with two kids......and this has been incredibly unfair to them. We've had to cancel family vacations, my ability to go do anything fun is hugely impacted.

Thoughts? Suggestions? Hope?

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