[Douglas]

It has been a while since I have posted here. There hasn’t been much progress or change, just allot of waiting - until now. Sorry for the long post in advance.

The CT scan revealed that my fusion had not fully healed eight months out. (CT scan wasn’t till the end of December) Before this my new doctor had talked about removing the AD. Now he changed his tune completely and decided that the headaches, confusion, and mid-back pain was all due to my fusion not being complete and it was moving. He said there is a surgery he can do where he can place rods to stabilize it. He said to come back and see him in mid-April which would be about a year out from surgery and he would check the fusion status then.

I went home and started drinking milk and taking calcium supplements religiously. I did not want another surgery. I was keeping the pain at bay with Naproxen. It wasn’t eliminating the pain but it was taking the edge off.

For the next weeks it was difficult to do my job as a computer programmer. My headache would get progressively worse throughout the week where it would be at its worse by the end of the week. It would start with pain between my shoulder blades that at its peak would radiate out into my chest. There is always soreness in my neck area. Then this would seem to radiate into my head and culminate in a headache in the top of my head. Then there was difficulty concentrating and sometimes blurred vision and muffled hearing. Note that this has been the case ever since the anesthesia wore off from the surgery.

February came and I got stomach flu that lasted weeks. I couldn’t keep anything in me let alone Naproxen. My pain got out of control. By the weekend my headache was so off the charts that I was going crazy. I was taking 220mg Naproxen, two in the morning two at night. This was more than the label allowed but my orthopedic surgeon said that was how much he would prescribe so go ahead and take that much. It wasn’t enough. This lasted a month.

Mid-March I knew I couldn’t wait another month till my ortho surgeon visit so I called in and demanded to be seen sooner. He took an x-ray and said the ADR hadn’t moved and my other vertebrae were still at normal height so nothing had changed. The fusion had made progress and he thought that in another month it would be complete. He said the bad news was that there was nothing he could do for me and this was as good as it was going to get for me. He wanted me to come back when I was supposed to in a month for one final x-ray where he fully expects the fusion to be complete and then he would get me into a pain management program. He prescribed a six day taper of steroids, Dexamethasone, and a month of Celebrex.

What a relief that I don’t need surgery I thought. But this is as good as it’s going to get? This is the rest of my life?

Steroid side effects are brutal. I’ve been on them before. I get all the old familiar ones. This time however I just about fall over from dizziness right in front of a supervisor at work. I ask to leave early and drive home dangerously dizzy. The next day, same thing, every day more and more dizzy. Three days after completing the steroid, still dizzy, I call into my ortho’s office and the lady won’t pass a message to my doctor. She instead directs me to go see my primary care doc. I get in there that day. They do blood and urine tests and come back and says “good news, you’re not diabetic.” They determine that I am having a “severe reaction” to the steroid and it must still be in my system and to go home. They tell me that if it persists for a few more days to go straight to the Emergency Room.

When the dizziness comes I have difficulty concentrating. My vision starts to blur and my hearing is less acute. It feels like someone is dripping ice on top of my head, down my back, down my legs, and down my arms. I experience random pain all over in my knee, feet, arms, legs. When the dizziness subsides, my good old friend the headache comes back to replace it.

Two days later, still as dizzy as ever if not more, I go to the ER. This is five days since finishing the steroid, seven days of dizzy. They do a barrage of tests. They do an EKG. They take vital signs standing, lying, and sitting. They do blood and urine tests. This all culminates in a head MRI. Everything comes back normal. The only comment on the MRI is that they can’t see the vessels down below where my artifacts are. They conclude that five days out I am still having a “severe reaction” to the steroid and maybe the Celebrex, but not likely the Celebrex. I point out that I have been on steroids three or four times before without this reaction. They suggest maybe they were different ones. I go home and check, I have been on Dexamethason before, at a much higher dose.

I ask them if there is any way this could have anything to do with my neck and they assure me that there is no possibility of that. They say the nerve that goes to the inner ear doesn’t even go through my neck. It is anatomically impossible they tell me. The headache could be, but not the dizziness. They refer me to a “hearing and balance clinic” and send me home with nothing to help relieve the dizziness.

Finally after begging the lady that answers the phone at my ortho’s office she finally gets me an appointment with my ortho’s assistant. I get in there ten days out from finishing the steroid, twelve days of dizzy. I’m told by the assistant “Sir, we don’t deal with this here. We do back surgeries here. Take another week off of work. This is just a reaction to the steroid.” I ask him if numbness in my feet and hands are caused by steroids, what about headaches for almost a year, what about chills in my head and everywhere. He finally says let’s refer you to a neurologist. And while I’m standing there, holding onto the counter so I don’t fall over, waiting for checkout my ortho doc walks by and looks surprised and says “what’s going on here”. So this is the first he’s heard of it. So a doctor prescribes a medicine, I have what has been called by my primary care and two ER doctors a “severe reaction” to it and after several calls into his office, this is the first he has heard of it. He simply agrees that I need to go see a neurosurgeon and says “that is an unusual reaction to a steroid.”

My symptoms are worsening. Both of my feet are constantly tingling now. It used to only last a few minutes. Now it seems here to stay. The dizziness gets brought on with neck movement such as a car ride. Lying down in bed for hours will calm it down. Sitting at a computer for a long period of time brings it on. I’m getting dizzy about now from typing this. I’m simply waiting now to go see a neurologist and a hearing and balance center. This is because I’m told the two couldn’t possibly have anything to do with each other. The neurologist isn’t even scheduled yet and the balance center can’t see me for over a week. I can’t drive a car and wonder how I can work. I’ve only worked two half days in the past two weeks. I don’t know what I’ll do after this weekend. I’ve tried going three days without Celebrex and still get dizzy.

Now do you want to hear my theory? How about low blood flow to the brain? Let me explain. I think the ADR is flexing too much. My new ortho has never taken a flexion x-ray. That’s one from the side with my head bent all the way forward or all the way back. The previous one had and I saw it. My neck bends like a 90 degree pipe elbow. Ok, I may be exaggerating a little. Let’s just say it gave me nightmares for days after seeing it. He said “that looks normal” and my jaw dropped to the floor.

I think it bend so much that it puts pressure in not only my spinal column but also blood vessels. This causes headaches, trouble concentrating, and dulled vision and hearing. Why did it become more acute and add dizziness when on the steroid? This is because the steroid reduces blood flow in smaller blood vessels which enhanced the problem. I’m no doc but this is what I got from googling and finding “cervical vertigo” and reading about Dexamethason. I don’t like self-diagnosing with google, but what are you going to do after going to so many doctors with no answers?

I tested this theory yesterday by wearing my neck brace when I was up and about. No dizzy - just headache. I’ll go without today to see if the dizzy comes back.

What I’ve learned is that I should have gotten into a neurologist much sooner. Furthermore I need to describe all of my symptoms, every one, even the little ones when I’m talking to a doctor. I have so many that I usually just go in and point out the most major. For example I’ll go in and just say “I’m dizzy.” I need to say “I’m dizzy, having difficulty concentrating, with blurred vision and hearing.” That, along with all my neurological symptoms.