I’m having a minor neurological surgical procedure Monday morning to hopefully relieve some Trigeminal Neuralgia-related head and facial pain I’ve been having. This will be at least my eighth such procedure since summer 2011. Some have worked and some haven’t. I had three last year and none of them worked at all, but one I had in 2012 worked for nearly a year. However, no matter how successful this is, I don’t think it will help my overall pain level that much and that is frustrating. Let me explain.
For the past year, I have been in a great deal of pain. I have had Trigeminal Neuralgia Type 2 since September 2010, but it had improved with surgical procedures and medication. However, about a year or more ago, I started getting another type of head pain, a bizarre almost normal, but incredibly severe, headache that responded to virtually no pain medication whatsoever and attacked me at all hours of the day. Since I have severe insomnia and average about three hours of sleep a night, this meant I have been having 9-10 out of 10 pain levels 20-21 hours a day every day for a year or more. Combine that with the occasional and increasingly frequent TN facial attacks, which are 10/10 minimum, and it’s agonizing. To make matters worse, about 10 months ago, out of the blue, I developed agonizing back pain. It was also 9-10 out of 10 pain, daily, for nearly the whole day. I’ve had some back problems for the past three years, but they haven’t bothered me a great deal, at least not without some movement, and this was just from sitting or standing or doing nothing at all. It was bizarre. Nothing helped. So between the two to three types of pain — head, facial, and back, all 9-10 out of 10 — it’s been a damned brutal year. I went to my orthopaedist some time back and she took x-rays and looked again at my old MRI and sent me to physical therapy. I also went to a rheumatologist I had to wait seven months for an appointment for. She did extensive testing and took more x-rays and between the two of them, they informed me that I have spinal stenosis, which I knew, degenerative disk disease, which I also knew, massive amounts of osteo-arthritis throughout my entire body, and a broken tailbone, which explained the coccyx problems I had been having awhile ago. I was told I would need to have my tailbone removed via surgery, although three of my other doctors have strongly recommended I not do this, that I’ll probably have to have two hip replacement surgeries in the not too distant future and there’s also a decent chance I may have to have spinal fusion surgery. Great. After four months of physical therapy with virtually no progress and pain still at 9/10 out of 10, my doctor sent me back for four more months, which is where I’m at now. If PT doesn’t end up significantly reducing my pain, it’ll probably be surgery and I really am not looking forward to that.
Meanwhile, back to my head pain. I have been to several doctors, including my main doctor, my pain management specialist, a neurosurgeon, and a few neurologists in different cities and I have four head pain diagnoses. In addition to TN, these include tension headaches, severe migraine headaches, and cluster headaches. For those of you who don’t know, Trigeminal Neuralgia is extremely rare and extremely painful. I believe only about 40,000 Americans have it and only about 10,000 have Type 2, which I have. It’s hard to diagnose and harder to treat. It’s also considered by many to be the most painful disorder known to mankind. Look it up. The last time I looked at Wikipedia, it referred to it as “the suicide disease.” Likewise, the cluster headache is ALSO considered by many to be the most painful disorder known to mankind. I guess it depends on what your resource is. But look it up. So I’m essentially doubly cursed and basically screwed. And the thing is, I don’t think that’s all of it. I think there’s more that they’re missing. I know there are a number of rare neurological head pain disorders, many TN-related, which go undiagnosed, that could more realistically explain my head pain. Cause I’m possibly willing to believe cluster headaches and I know I have tension headaches, but I’m not willing to believe severe migraines are causing the kind of 21 hour a day daily head pain I’ve been having for a year, as the head pain isn’t consistent with typical migraine characteristics and responds to absolutely no migraine medications I’ve been given. None. So I think it’s something else. But my doctors are reluctant to go that route. One former neurologist thought I might have something called Pseudotumor Ceribri and I had to have a spinal tap to test it. I was very, very close but he decided I did not. My present, local neurologist is giving me Botox injection treatments, which is common and expensive, and next month may give me facial steroid injection treatments, but after that and one more Botox treatment, if I don’t respond, he too may send me for a lumbar puncture to see if it’s that. I don’t want that but am willing to undergo that again just to see.
In the meantime, on Monday I have to go back into the operating room. It won’t take long, maybe 45 minutes. A few hours in recovery. Outpatient, home by mid-afternoon. Unfortunately, my wife has to take a lot of time off from work since I obviously can’t drive myself due to the anesthesia. And it always takes a long time for it to wear off for me. Like a week. I will drag all week. That sucks. But hopefully it will help some, because lately I’ve had quite a few vicious TN attacks and that’s got to stop. Cause I’ve got to focus on getting rid of all of this other shit. Please wish me luck. I definitely need it.