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.

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.

I’ve got another appointment this Wedsnesday, but to be honest I dont’ really have much hope that there’s going to be much they can do at this point. It’s been 4 years already, and I despite managing my dizziness a bit better, I don’t think I’ve really actually felt any better.

I’m hoping that things will improve as time goes by, but it’s often difficult to keep up hope after such a long time dealing with this. Just wanted to provide everyone an update on where things are with me — and remember, you’re not alone in how you feel with your balance problems.

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.

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.

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.

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.

I just came across a post about Cheryl Schiltz, who constantly feels that she’s falling (here’s the link to the original Telegraph article) because she has lost 95 to 100 percent of her vestibular system.

A case like Cheryl’s would normally be completely hopeless. But due to a specially-fitted construction hat that’s connected to her tongue (yes, you read that right, her tongue), she’s able to actually regain her sense of balance while wearing the hat.

Here’s the Wired Science report on how this device actually works (which I originally found through Dr. X’s Free Associations post on the same subject):

The physiotherapist videotaped my eyes using some goggles (they resemble scuba goggles, and this is the third time I’ve had to wear them for this particular type of test). They’re very tight-fitting and a bit uncomfortable, and they make things very dark.

Apparently there are infrared cameras inside the goggles that record your eye movements; so after the physiotherapist shook my head back and forth with her hands, I had to look up and to the left, and then up and to the right.

It made me feel a bit dizzy, but not too bad. But when we reviewed the tape, I could clearly see that my eyes were beating toward the left, and then drifting back to the right side. She told me that this means that the right side is where I have a deficiency.

I really hope that she’s able to get things back to normal in that short of a time (6 weeks). She said that if I do my exercises every day, I should be feeling much better in just a few weeks. I haven’t felt this hopeful about things for a long time — today was a great day!