Here's the short version:
I have syringomyelia (also known as syringohydromyelia). You can read more about it here if you'd like, or you can just take me at my word when I say it's a cavity in my spinal cord that is filled with brain fluid. As a possible cause or result of this condition, I also have six bulging or protruding discs and some bone spurs in my neck.
After a battery of tests that included an EMG on my right arm and MRI's on my brain, neck and spine, I am now heading to see a neurosurgeon at the UW Hospital in Madison.
Now here's the long version:
Ever since I was in high school, I've had some sort of right wrist pain. I always chalked it up to frequent computer use and assumed I had carpal tunnel.
In the past few years, it has gotten worse. While my wrist had always been the primary source of pain, my right fingers and hand have gotten very stiff and painful, and my forearm got to the point where it constantly throbbed. It got bad enough at some point last year that I bought a wrist brace to wear at night, and I frequently even wear it around the house during the day.
Still, I never really thought much of it. The only thing that really crossed my mind was, "Eh, I have carpal tunnel. That sucks, but I'm not going to pay for surgery, so what's the difference?"
Anyway, Clara was born in January, so it didn't take long for us to hit our insurance deductible. Since I haven't had a physical since 2007 and the prevailing thought is that you ought to get two physicals in your 20s, I scheduled one in June with a physician I'd never met before.
Of course, I mentioned that I had hand/wrist/forearm pain and that I figured I had carpal tunnel. The doctor quickly shot down that notion due to the location of the pain. He folded and bent my arm in a few different directions, tapping on my arm all the while. When he folded it back toward me, my fingers felt kind of numb. He asked if they were numb, I responded in the affirmative, and I was diagnosed: Ulnar nerve entrapment.
I was a little bit confused because it didn't explain my forearm pain at all -- it's a totally different nerve that runs through my forearm where the pain is. That said, he recommended some physical therapy, and I started that in mid-June. Initially, I thought it was helping. Although my forearm was becoming more sore, I thought the wrist and fingers were a bit more limber if not less painful.
However, whatever progress I thought I was making disappeared fairly quickly. By my seventh appointment or so, my pain was way up -- I had started describing the pain as a "3 or 4" and had shot up to a "6 or 7." My right hand grip strength, which had started weak at 75 pounds (the male average for the dominant hand is 110 pounds, and my left hand was 100 pounds), was down to 65 pounds.
My forearm was atrophying.
My physical therapist asked another therapist what she thought I ought to do, and her recommendation was to contact my doctor and get referred to a physiatrist for an EMG to test the nerves in my arm.
I wasn't thrilled about this, but hey -- I figured it was progress toward nailing down the problem.
So I went to see the physiatrist -- Dr. Walby -- on July 22.
I described my symptoms and she immediately shook off the ulnar nerve entrapment diagnosis. This was no surprise.
I was surprised, though, when I left her office a few hours later without getting an EMG. Instead, I had an order for an MRI of my brain and neck. If she had to guess that day, her diagnosis would have been a brain tumor!
I had to wait 10 relatively nerve-racking days just to get the MRI, and then it was four more days to get the results.
As it turned out, I did not have a brain tumor. (Whew.) I was just happy that it wasn't the worst-case scenario.
Instead, I was shown MRI pictures showing something strange running down the middle of my spinal cord. As it turned out, this was syringohydromyelia (again, a.k.a. syringomyelia). I also was shown six bulging or protruding discs in my neck and upper back.
Anyway, as Dr. Walby explained it at the time, my symptoms were probably being caused by some combination of these two things -- the pressure from the syringomyelia pushing outward and the pressure from the discs pinching down on the nerves as they protruded.
Still, again, this was generally good news. It sure beat a brain tumor. That's not even close to the end of the story, though, because I needed another MRI, this time on my T-spine, to determine how deep the syringomyelia went -- the brain/neck MRI set only showed down to my T-2 vertebrae, and it went at least that far. They also wanted to look for anything -- like a tumor, again -- that might be causing it.
I didn't have to wait as long for the MRI this time -- only three days -- but in the meantime, I was prescribed a painkiller (Tramadol) to dull the pain. I also did some research on syringomyelia.
Syringomyelia is pretty rare -- only 8.4 cases per 100,000 people. Most of these cases are a result of something called Chiari malformation, which is essentially where the bony space at the rear of the skull is smaller than normal and brain tissue actually gets pushed downward into the spine.
I, however, do not have Chiari malformation. With that ruled out, the other possibilities are that it's caused by genetics (highly unlikely), a tumor (unlikely), nothing (idiopathic -- somewhat likely), or trauma (most likely).
In my case, trauma is most likely because, well, I have the upper back and neck of a 60-year-old. Those six bulging or protruding discs in my neck and upper back, along with the handful of bone spurs in my neck, are unlikely to have come from nothing. Whether it was a lifetime of football, a baseball to the back of the head, or screwing around in the ocean in Australia, I can think of a fair number of trauma events to my head and neck that could have easily been the start of all this. I've never thought I have any particular neck or back pain, but pain is a funny thing -- you just get used to a lot of things. I can't believe the pain I feel, for instance, when the painkillers I'm now on wear off.
Anyway, after the MRI, I had to wait eight more days to get back into my doctor while wondering if I had a tumor in my back.
Fortunately, the result was, once again, no tumor. As for the syrinx (the term for a fluid-filled cavity within the spinal cord), while syringomyelia comes in all different shapes and sizes, my particular case extends all the way down my spine to my T-12 vertebrae and is about 1-2 mm.
Dr. Walby finally gave me the EMG I never got a month ago, and as she initially suspected, it came up clean. As of 5 p.m. yesterday (Aug. 16), the plan was to wait until November to get another MRI to see if it the syrinx was changing in any fashion. That would determine, theoretically, if they would operate on it to stop it from doing any more damage, or if they would continue to just keep an eye on it and medicate me to relieve some of the pain.
This approach was frustrating, but I understood why she was taking it. Depending on what you read or who you talk to, syringomyelia is either not a huge deal or completely life-changing. Some people have syringomyelia forever and never even notice it. However, when you have symptoms like I do, it's more toward the completely life-changing end of the spectrum.
Anyway, I also mentioned at the appointment yesterday that I've been having some additional symptoms in the past week or so. I've been frequently dizzy -- which isn't necessarily a surprise since it's a common side-effect of Tramadol -- but I've also had a lot of twitching muscles all over my body. Probably like anyone else, I've gotten twitches and minor spasms occasionally throughout my life, but in the past 3-4 days especially, something is twitching literally every couple of minutes.
My doctor seemed somewhat perturbed by these reports, and said she would run them by the neurologist at Agnesian after I left. She thought the neurologist at Agnesian might want to see me in the interim (before the November MRI) or even run some diagnostic tests right away.
Well, my doctor and the neurologist reviewed all of my symptoms and MRIs once more. As it turned out, they both advised that I ought to go ahead right away and get a surgical opinion on it from a neurosurgeon at the UW Hospital in Madison.
The nurse reported that instead of the bulging discs being evidence of trauma that may have caused the syringomyelia, the neurologist posited that they could be bulging because of the outward pressure the syrinx is applying from inside my spinal cord.
Anyway, it's obviously all guesswork, and you could certainly take this as either good or bad news. From my perspective, I think it's good news because we're taking active steps to solve the problem now rather than taking a wait-and-see approach. The worst part, so far, is that I was told I can't lift more than 50 pounds. I'm not yet sure if I'm going to abide by that or not.
That brings us to the here and now. I'm not yet sure of when my appointment with Dr. Robert Dempsey at the UW Hospital will be -- didn't get a call back from the clinic yet -- but hopefully it's not too far down the road.
At this point, my understanding is that the operation would insert a shunt in the back of my skull that would drain the brain fluid into my abdominal cavity. Dr. Walby has been making this sound like a fairly simple operation, and in some ways I guess it is, but I'm also reading that you have to lie flat on your back for 24 hours following the operation. Even after that, it appears that you're stuck in the hospital for 3-7 days afterward! Great!
Other possible surgical options would appear to consist of some sort of decompression, but that hasn't been mentioned yet. If Dr. Dempsey decides not to operate at this point -- and that's still certainly a possibility because these shunts carry plenty of risks with infections and blockages -- my understanding is that they would basically just keep me on a steady cocktail of drugs and a steady diet of MRIs to make sure nothing is changing.
So, that's that. You can still feel free to ask questions ... I've just grown weary of telling that entire story to each new person that finds out.
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