Dear ANA discussion forum friends,
Thanks again to everyone who responded helpfully to my initial post seeking advice about giving up MRIs for CT Scans if I should receive a pacemaker/defibrillator implant., I feel reassured now that a properly-calibrated CT Scan at high resolution and possibly using some injected dye would be considered sufficient.
The reason I'm not posting back and forth here as readily and congenially as everyone else is because I'm legally blind and using a screen reader (text to speech) program. While such a program is very powerful, and I'm generally a skillful computer user and Web surfer, and subscribed to a number of mailing list groups on which I'm very active, this site and its message functions are extremely difficult for me to navigate and use. This is because of issues of page design and page element coding. Add to that the exhausting symptoms I'm about to describe, the difficulty is just a bit too much to handle except for figuring out how to post an occasional message and find responses to it. I don't have the energy and powers of concentration required to plough through these problems very often. Thanks for your understanding. Please be aware that directions won't help unless they're from another blind computer person.
Now, here's the main medical issue that brings me here looking for some perspective. I'll run through the history as concisely as possible:
Left side acoustic neuroma diagnosed at House Ear clinic here in Los Angeles, 2005. After months of online research and informative participation in a very active acoustic neuroma mailing list, I decided on radiosurgery instead of microsurgery, in hopes of having a better chance to retain useful hearing in that ear compared to the chances even with the best microsurgical approach I was told could be done with the tumor given its size and position. "Translab" was first advised, which of course would have immediately caused total deafness in that ear. Middle fossa approach was not available given the tumor's position. And even though one neurosurgeon offered to do sub-occipital, which offers at least a statistical chance of saving some hearing, that chance was a pretty small percentage compared to those suggested by studies both of standard single-session Gamma Knife and even more outshone by multiple-session FSR (fractionated stereotactic Radiation) modalities like Cyber Knife.
I wound up getting cyber Knife at USC Hospitals here, February 2006. I'd found that they had Cyber Knife equipment there, which would have been a lot less of a project than somehow getting up to Palo AltoStanfard and staying there for a week or so. My travel options and finances not being easily amenable.
But the neurosurgeon, hearing that I might need to be fully sedated for the several Cyber Knife sessions in order to stay still, convinced me that Gamma Knife would be fine in my case, and they could fit an anesthesiologist and his equipment into the room where that was, whereas they couldn't in the Cyber Knife room.
So I accepted the doctor's reassurance that Cyber Knife would be good enough, in terms of the concern I explained to him about my hearing.
Now for the post-treatment story.
As early as my first post-treatment call-back with the neurosurgeon, I felt that something must be the matter. My balance was still worsening steadily instead of leveling off or showing even slight signs of improvement. My hearing was quickly declining; within a few months, hearing in the AN ear would be all but useless. And worst of all, I'd begun to feel as if there were a heavy weight inside my head that shifted back and forth with every movement I made. I told all this to the doctor on that first visit. Self-confidently, he told me that my balance would eventually return to normal so long as I remained physically active so that my brain had the chance to adjust. I understood the principle of this. But I could see it wasn't going to happen that way for me. The hearing, he said nothing about. He didn't know it would completely die in a few months, anyway, just as I had no idea .
But most troubling of all was this. I tried to tell him something unexpected and very bad was happening, aside from any other concern I'd been prepared to deal with. I told him I felt as if my head were a fishbowl, nearly full of water, and that the water was shifting back and forth with every movement of my head.
Oh, don't worry, he said. There's no water inside your head. I tried to explain that's not what I'd meant, but he simply didn't understand. He'd never heard of such a thing. He also, apparently, was only able to imagine that I might have heard something about CSF leaks post treatment and that's what I'd meant. There was no getting past this. "Surgeons tend not to be very good with metaphors," said my ex-wife when I described the incident and my frustration about it to her. I resolved to try not to use figurative language anymore when asking a doctor about this sensation, and discovered the phrase "intracranial pressure," which sounded sort of related but very dry, for one thing, and also it kind of presumed that I knew, or imagined I knew, the physiological cause. Which I didn't. I have no idea what's causing this. But I added "intracranial pressure" to my lexicon when talking to doctors, anyway. Just so they'd know I didn't imagine that my head was full of escaped cerebro spinal fluid, or something. Like actual water, for instance.
That was nearly three years ago. As I said, the next few months would see the near-disappearance of all hearing from my left ear. But that is something many AN people have suffered, either early on even without treatment or as a consequence of treatment. I wish this hadn't happened, but if that were all, even though it puts me on the road to Helen Keller city, I might not be complaining.
But the rest is the problem. My vertigo-like balance problem just got worse and worse instead of recovering, and the bothersome feeling of weight shifting inside my head became a feeling as if my head has a 16-lb. bowling ball rolling inside it, my forehead and cheeks are throbbing as if I'm being slugged in the face by a skilful middleweight who's holding back just enough to not knock me down, and as if my head's being squeezed in an industrial vice. Every waking moment. Worse some times of day than at others, but never ceasing. I stagger when I move about, no matter how hard I try not to. The head pressure and vertigo are so fatiguing that it's very difficult just to remain functional in daily life and not collapse.
One after another, I consulted other neurosurgeons, neurologists with experience in vestibular issues, even with one highly-regarded researcher at a nationally prominent local teaching hospital who I've seen quoted in New York Times Science Times articles. Not a single one had any idea what could be the matter with me, as they listened to my presentation and looked at my most recent MRI of the tumor, which from what I've been told, I think has not grown since the treatment. I was referred to only one of these doctors by my primary care physician. The rarest I had to find by Googling and looking at their profiles on the Web sites of local hospitals and med school faculty pages. None of them even referred me to anyone else except for one, also at that teaching hospital, who referred me upward to his superior, the head of neurosurgery. Who also had no idea at all what could be the matter with me, and said he'd resection the radiated tumor and simply cut the vestibular nerve if I wished, but he couldn't even suggest, let alone promise, that this would have any beneficial effect.
Many of them, upon learning that I was legally blind and seeing my long white cane, came a little too easily to the idea that my impaired vision was more than likely the cause of everything. I know quite well that the vision is the most important backup system to the vestibular system, but first of all I'm not consciously confused about what position my body's in, ever, and also I came informed about my retinal degeneration and the pattern of my visual fields, and eagerly asked if lack of sight or acuity in this area of my fields or that one could be contributory factors. But none showed any interest in this, which led me to distrust a lot else about their responses.
So that's where it stands, three years after treatment. Head throbbing in a way that would make a person scream if it happened to them suddenly, staggering about, feeling very dizzy with every turn of my head or even just my eyes, even sitting down. It's exhausting and very, very discouraging. Debilitating.
Assuming there aren't likely any doctors on this forum who are ENTs or neurologists< I'm not asking for diagnostic hypotheses if no one has any. But has anyone experienced anything like what I've described? I know it all may sound trivial compared to some of the horror stories I keep learning about post-microsurgery patients who've lost control not only of their balance but of their faces, eyes, and much else, although I guess in all the mailing lists and patient archives I've been around I never did hear of this pressure thing.
Please, if anyone has or knows of anyone with a similar experience, tell me about the situation and whom you've consulted with or been treated by.
Thank you very much for your time and attention to this admittedly long post. I hope it hasn't been too daunting to plow through.
Sincerely,
Joel
interrest Any Ay hceck naigatehavigate.
