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:

So what’s causing the bone to grow in the first place in my case? It seems to be caused by degenerative disc disease at the C4 and C5 vertebrae in my neck (which I understand can also cause some neck pain).

Now the real question is, does this cause dizziness or vertigo? The answer seems to basically be ‘not directly’. All the medical professionals I’ve seen since this diagnosis seem to agree that if the degenerative disc disease were present at C3 or higher, then this could definitely cause dizziness since that area is connected to the vestibular system.

I’m quite convinced that this cervical spine disease is at the root of my dizziness and vertigo symptoms, which would explain why all of the previous tests I had (being mostly vestibular function tests) came back normal. In case anyone’s interested, here’s a great page on cervical vertigo and its potential causes.

I have an appointment with the neurologist on April 5 to talk about potential treatment, but it sounds like surgery is going to be the most likely option (since I’ve tried physiotherapy for about a year without success). I’ll post more once I know the treatment options available.

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.

I was also taking a diuretic for a while (several weeks), which seemed to make me feel worse than I already did. While the neurotologist suggested eventually doubling the dosage of the diuretic (he prescribed it since he thought I might have Meniere’s, and it would rid my inner ear of any excess fluids), I had to stop taking it because it made me feel that bad.

I didn’t really realize how much even a small dosage of a diuretic dehydrates you — I was drinking a ton of water every day, but I still constantly felt nauseous and dehydrated. Not to mention that my balance problems were not any better when taking the diuretic.

Now that I’ve also concluded my experience with vestibular rehabilitation therapy, I’m not sure what the next steps are to me feeling better. Both the neurotologist and the vestibular rehabilitation therapist told me that they think there’s really not much they can do for me at this point.

While I know she meant for this to give me some hope, the therapist’s suggestion that I would see “significant technology improvements” in my lifetime which may improve my symptoms actually had the opposite effect. It made me feel like there really wasn’t much hope for feeling better now, which is kind of a tough pill to swallow.

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?

When I got the device, I wondered how there would be any way to tell whether the BrainPort was actually causing improvements, or if it was just standing there for 20 minutes with your eyes closed (which you’re supposed to do in a ‘challenging’ position, thereby sort of acting as a vestibular rehabilitation exercise).

Not to mention that the BrainPort device itself costs $10 000 — and that it’s not covered by insurance. I’m going to see if I can dig up a bit of research on the device (hopefully something that hasn’t been done by the company — I’ll post anything that I find).

On another note, the doctor suggested I try out a diuretic medication for 3 months, in order to eleminate the possibility of my condition actually being vestibular Meniere’s disease. While I’m doubtful that that’s what it is (and I think he’s doubtful as well), I’ll give it a shot.

I’m also going to have the VEMP testing done, just to see if there’s anything that comes out of it. I expected a bit more pushback from the doctor over getting this test done, but he seemed fine with it. I’m not sure when exactly they’re going to get back to me, but hopefully it’ll be soon — I’d always rather know the results as soon as I can.

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).

The physiotherapist says I should stick with the BrainPort for another week or two, and just see how it goes. As I get to try it out for free, I don’t have any problem sticking with it for another few weeks just to see how it goes.

Sometimes I feel like I feel better, but I’m never sure what exactly leads to that (obviously, things like more sleep, eating regularly, exercise and avoiding fatty foods and alcohol make me feel better — but those things usually make everyone feel better). So I can’t really attribute anything definite to the BrainPort.

I’ve got another neurotologist appointment on Wedsnesday, and I’m going to bring up VEMP testing, since I’ve never had it done. While I’m anticipating that the doctor won’t be too keen on it, I’m going to push for it, since I’d rather have as much information as possible. If anyone has any experiences with VEMP testing, I’d love to hear it.

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.

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.

Well, in the past week, I have to say I may have started feeling better. Notice I said may — because I’ve felt better in the short term before, and it’s not always stuck around. I’m hoping that this time I’ll feel better for longer.

I’m wondering if there’s anyone who has had any substantive improvement from VRT, and how long it’s taken them to feel better. I’ve heard that’s it around the 4-6 week mark that improvement is often shown.

It’s not that I don’t trust the therapist, it’s just that I wonder if there’s anyone out there who can back this up with their own experience. I’m a little worried about this for two reasons: the first that it’s been so long since my initial vestibular loss, and second that I’ve got a bilateral vestibular loss. If anyone reads this and feels like posting their own experience with VRT, I’d really appreciate it!

The therapist said that not having any subjective improvement (i.e. me feeling better) after only 2 or 3 weeks is normal — that I shouldn’t really feel the effects of the VRT until about the fourth week.

The good news however, is that I have improved in one area. When I first went into the therapist, she asked me to read an eye chart, and then shook my head from side to side and asked me to read it again. Between the no-head-shaking and the head-shaking, I lost three lines (I had to go three lines up to be able to still read the letters).

We tried the same test again last time, and I now only need to go up one line. She said it’s possible she just caught me on a good day, so we won’t know for sure until I go in again, but it may be some kind of sign of improvement.

This is what the therapist described as an ‘objective improvement’ — while I may not feel any better, I still show improved abilities when it comes to how my vestibular system is functioning.

She also let me know that if none if this works, we may to resort to the BrainPort balance device (I embedded a video of the device at work in a previous post) — which connects to your tongue and you have to use for 20 minutes every day (it’s also $10 000, which is far more than I can really afford).

Let’s hope the VRT works.

I told her about some positional discomfort I have when lying down on my stomach, and she asked if we could try a few more tests with the goggles with the infrared camera. I never mind more tests, since I’m always hopeful it will provide more answers.

So we went through the head-shake tests again (where the therapist shakes your head and then asks you to look to the right and then to the left), and then I watched the videotaped results again.

Much to my surprise, the nystagmus (abnormal eye movements indicating a loss of vestibular function) was present on both sides — meaning that while my right ear is worse, my left ear’s vestibular system is likely also damaged.

While obviously this isn’t really great news, the therapist said it does explain quite a bit. Usually, the full-functioning ear will kind of ‘take over’ from the deficient ear, and then your balance ends up being pretty normal afterward.

But in my case, since the second ear is damaged as well, even the compensating ear is having trouble. So not only am I getting mixed signals from my eyes and damaged right ear — I’m also getting them from my damaged left ear (no wonder my brain is confused)!

The physiotherapist advised me to stop with the balance exercises for now, and just focus on the gaze stabilization exercises (shaking my head from left to right and trying to focus on a letter on a business card held at arm’s length in front of me).

She also let me know that the movement of my head was too extreme from side to side — that it’s better to use small head motions, as this gets your eyes to do the work, not your head.

She also gave me a new exercise — holding a pen in each hand, which I then have to focus on, then turn just my eyes to focus on the other pen, then follow with my head.

This new exercise (and doing the other exercise properly now) make me very dizzy. I really don’t like doing them, but I’m willing to try anything at this point. She said if they don’t work, that they have another machine that we can try, but that that therapy is quite expensive.

Well, now that I know I have a bilateral loss as opposed to a unilateral loss, I’m hoping that the therapy can be tailored further to help me out. As usual, I’ve got my fingers crossed.

So I basically have 3 exercises that I have to do 3 times per day. She said we’d move on to some more challenging exercises once these become easier.

The first exercise is to stand heel-to-toe in a doorway with my eyes closed (it’s harder than it sounds, but maybe just for me). I guess this is to retrain my brain to rely more on my feet for balance than just using my vestibular system.

The second is to look at a business card from arm’s length away while shaking my head faster and faster. This one made me particularly dizzy — but again, that’s supposedly a good sign for the potential for improvement.

The third thing I have to do is to put my head down between my legs in a sitting position, and then bring my head up really fast (I mentioned this one last, but I’m actually supposed to do it before I do the other exercises to overload my vestibular system).

I’m prepared to feel worse for a little while doing these exercises if it’s going to help my longer term recovery. And the therapist is so nice about everything, she really makes me feel hopeful.

Oh, and the last thing I had to do was to stand on a kind of foam mat and try to balance myself with my eyes closed. Again, really hard to do for me (especially when I had to do it standing on one foot!). I have another appointment next week, where she’ll assess how well I’ve been doing with the exercises.