Feb 25, 2012
As I mentioned in my last post, I had an MRI and MRA done. The MRA came back completely normal, and my vertebral arteries are fine (phew!).
However, on the MRI of the spine, there was a significant discovery: severe foraminal stenosis on the right side at the C4-C5 vertebra. Now I had no idea what that meant, but my physiotherapist (who is great by the way) explained it to me. Essentially, there are nerves that come out of the spinal vertebrae through little holes on the side called foramena. When the vertebrae become unstable, the body starts growing some bone back to try to stabilize them (which also leads to osteophytes, also called bone spurs, which I have a few of on my C4 and C5 vertebrae).
So this excess of bone starts to grow into the foramen (this is the stenosis, which basically just means ‘narrowing’), causing it to get blocked and impinging on the nerve that comes out through that hole. The nerve gets pinched and this causes various symptoms, including tingling, weakness and pain (all of which I’ve had in my right arm and shoulder for about the past year). Here’s a picture that may help:
Oct 24, 2011
Since it’s been over two years since I last posted, I figured I’d take a bit of time and update everyone on where things are at with me. I’ve got some more information on what’s been going on with my balance, but it’s more that I’ve narrowed it down rather than really heard a definitive diagnosis.
About a year ago, I had another round of vestibular testing — including VEMP (vestibular evoked myogenic potential) testing, hearing testing and caloric testing (where they flush hot and cold water in your ears). Guess what? All the vestibular tests came back completely normal — for the second time.
So this has lead me and the doctors I’ve been seeing to conclude that the problem may in fact be neurological — which would completely explain the lack of success I’ve had in the past with vestibular treatments. I had an MRI in the past, and it had also come up normal; so now instead I’ve got an MRA (magnetic resonance angiogram) scheduled.
Jul 27, 2009
I haven’t posted here in quite a while, since I’ve been busy with a bunch of life changes (bought a new home and changed jobs, which have both kept me quite busy). First off though, I wanted to thank everyone that has left a comment here over the past little while — I think it’s great to see that we’re not alone in feeling this way.
Unfortunately, there hasn’t really been much progress for me in the past half a year however. I’ve been feeling pretty much the same (except for a few months after my doctor had prescribed a migraine medication which I had a bad reaction to — which was pretty much hell).
Yet another visit to my neurotologist suggested that something called ‘overbreathing syndrome’ might be worsening my already-existing balance issues, and although I’m not entirely sure about that. It seems to me sometimes like the doctors are grasping at straws to explain away how I feel.
Nov 17, 2008
If you suffer from any sort of balance disorder, you’ve probably come to realize that stress plays a big part in how good (or bad) you feel. For me personally, it’s taken me quite a while to realize the intimate connection between these two forces, but once I came to recognize it, it allowed me to better control when and where I feel dizzy.
As I said in my last post, I took a great vacation, and was able to unwind for a few days. I felt tremendously better (I did have my usual daily dizziness, but it was actually much better than usual). The lack of work-related stress really seemed to have a positive impact on how I felt.
I find exercise has the same stress-relieving effect — and it usually lasts for several hours after I exercise. And alcohol, while it certainly relieves stress in the short term, actually makes me feel more stressed in the longer term.
So while alcohol may be a quick fix for stress, it has a negative cumulative effect, and can often leave you feeling more stressed later in the day or the next day. Not to mention that alcohol is usually a motivation-killer as well.
As I’ve told myself many times, I need to avoid alcohol more, eat better and exercise more regularly (good advice for anyone, balance disorder or not). But for me (and anyone else with balance issues), the effects of not doing these things are not just felt in 10 or 20 years, but instead almost immediately.
Nov 8, 2008
It’s been a while since I’ve written here, and I hope no one thought I was gone forever! Things have been very busy at work, and of course quite stressful as well. This hasn’t really helped the dizziness in the past little while, and it’s been a bit tough to deal with. Even walking to and from work can be a chore some days.
So I’ve decided to extend this weekend, and take Monday and Tuesday off as well. I’m planning on traveling somewhere (it’s noon on Saturday, and I still haven’t decided where yet, I think it’ll be fun to just get in the car and go somewhere).
I’m looking forward to this much-needed break, and I’m hoping that I’ll come back rested (and less dizzy!). As I said in my last post, I’ve got my appointment with the new neurotologist at the end of the month (which I’m feeling hopeful about), so I’m hoping I can allow myself to feel a bit better before then!
On a side note, I did only 20 minutes of biking yesterday, and felt absolutely terrific after. I didn’t feel great while doing it, but for several hours afterwards, I thought: why don’t I do this all the time? I guess you can never really go wrong with getting more exercise.
Oct 25, 2008
So it’s been about a month since I’ve written anything. What’s been going on the past month? Well, quite a bit actually (unfortunately none of which has allowed me to see a positive change in my symptoms).
I had another visit to the neurotologist (which I mentioned last time) — and I asked to have VEMP testing done. While the testing wasn’t much help (since it came back normal), I decided to ask the woman doing the testing if she knew of a good neurotologist.
She suggested one of two doctors, both of whom I haven’t seen before. They came highly recommended from her, so I’m starting to think it’s time to go and get a second opinion about what’s happening with my balance issues.
Sep 24, 2008
I had my appointment with the neurotologist today, and much to my surprise, neither of the doctors in neurotology had ever heard of the BrainPort, nor did they know what it did. If this is the latest advance in vestibular treatments, how come neither of these doctors has even heard of it?
This would me to one of two conclusions: either the BrainPort is not as great as its makers would have us believe, or both of these doctors aren’t keeping up on their reading about advances in treatments. But how am I, the patient, supposed to determine which is the case?
I’ve been using the BrainPort for about two weeks, and I haven’t really noticed any difference at all in my symptoms — does that mean the BrainPort doesn’t work?
Sep 22, 2008
It’s now been almost 2 weeks that I’ve been using the BrainPort, and I haven’t really noticed any difference so far. I’ve been sticking with the 20 minutes twice a day as prescribed by the physiotherapist, and have only missed the second session on a few days.
I certainly don’t feel any different after doing the BrainPort exercises (except for being a bit sleepy from keeping my eyes closed for 20 minutes), and I haven’t really noticed any improvement in my symptoms over the past few weeks.
Since I have a hard time keeping my eyes closed for 20 minutes (I get really bored), I’ve figured out that an episode of Seinfeld is about twenty minutes long without ads, the intro and closing credits (I’ve got them on DVD). So I listen to the episodes while I stand there with my eyes closed (I only turn the sound on, not the picture, so I’m not tempted to open my eyes to watch the show).
Sep 11, 2008
I got the BrainPort today, and I’m going to be trying it out for a month. Basically the BrainPort is a plastic box, just a bit bigger than the size of my hand, that has a cord attached to it on one end, which goes around your neck (leaving the BrainPort to hang and rest on your chest).
It has a long, flexible plastic protrubance on the other end with a square, gold-coloured set of electrodes at the end, which rest on your tongue. The front of the box has a button and a dial on it, which turn the device on and off, as well as regulate the level of electricity that flows from the electrodes to your tongue.
I’ve been instructed to use the BrainPort for 20 minutes twice a day, which I have to do in a ‘challenging balance position’ — which for me is standing heel to toe (like a tight-rope walker). It’s really hard on the legs and feet though, because you spend the 20 minutes swaying back and forth trying to keep your balance.
When using the BrainPort, it gives your tongue a little shock (nothing serious, it’s certainly not painful in any way) when you go off-centre. It’s supposed to somehow condition your tongue to understanding where your head is at in space. I’m going to try it out for the whole month, and I’ll report back on how it goes as the month progresses. I hope it works.
Sep 3, 2008
I went back to see the vestibular rehabilitation therapist, and they said there’s not really much noticeable improvement — so now we’re going to try to complete overload the vestibular system and see if it causes it to improve.
I’m still supposed to do the exercsises with the business card and moving my head horizontally back and forth, but now I’m also supposed to move my hand horiztonally back and forth in the opposite direction. It tends to make me feel a bit nasty.
I’ve also got to do what is essentially tight-rope walking with my eyes closed — just without the tight-rope (I do it across the floor in my apartment). I have a really hard time staying in a straight line, which the therapist says is normal with bilateral damage.
The last thing I have to do is stand on one foot while brushing my teeth (both in the morning and at night), which I also find tough. I’m hoping that between all these different exercises, we’ll start to some improvement. If not, then it’s going to be the BrainPort route for sure.