Thursday, June 30, 2016

How I cope with Spasmodic Dysphonia

So a few years ago when I just started working, I realized there was something "off" with my voice.

Can't remember how or exactly when, but there was a day when I could barely let out my voice without it sounding so "creaky" - that even having daily conversation was such a chore, and on that day, a colleague made a comment "you should get it checked" that really struck a chord with me. At first, I thought it was psychology - I thought it was all in my mind. Or maybe health. So I started taking care of my throat better; no caffeine, regularly take mints to clear my throat, etc.

Still, nothing works. Even the few ENTs I went to couldn't figure out what my problem was, but they could see that there is something wrong with my voice when they could barely hear me talk properly. The problem gotten worse whenever I had to take calls, or read a few sentences out loud, or do a presentation (which requires me to speak louder).

Then, this one ENT specialist refers me to another specialist, Prof Dr Abdullah Sani in HUKM.


So I took a day off to meet him.

He said hi, and asked me what my problem was. He's such an easygoing doctor that you feel intimidated but comfortable at the same time, which eased my nerve.

It wasn't even past 15 minutes when he confirmed that I have spasmodic dysphonia.

What is spasmodic dysphonia?

Spasmodic dysphonia (SD), a focal form of dystonia, is a neurological voice disorder that involves "spasms" of the vocal cords causing interruptions of speech and affecting the voice quality. SD can cause the voice to break up or to have a tight, strained, or strangled quality

Pretty much what I'd been experiencing for a few months prior.

I've Googled about my symptoms before the visit, so I've come across the disease several times - so hearing it from the doctor was some sort of a liberation for me. I knew I had problem, and it wasn't all in my mind.

This was back in 2013. And it was such a huge life-turning event for me, that now I feel the need to pen it down here, for memory's sake. Took me 3 years to actually write this!

Getting diagnosed


This was a crucial, yet a depressing phase - imagine going in and out those ENT clinics with every single one of them believed you have a problem, but couldn't provide a solution. I cried day and night, wondering if there's someone could just tell me what's wrong with me; I was going mental and it affected my daily life and work, especially.

Didn't help that I just started working, where the workload and expectations were high.

First appointment


The day I found out about Prof Sani is the day I'd remember forever. He diagnosed me on the spot and I was relieved; knowing I found the right person to see my problem. He told me a bit on his previous patients who suffered the same thing as me, and apparently I'm his 5th patient of the same disease IN MALAYSIA.

No wonder those specialists couldn't figure out my problem.

So as he went on to explain, he told me that my case isn't so severe - I'm probably the most mild one, compared to others he's seen. One patient practically speaks with no voice; just air coming out which sounds like she's just whispering, instead of talking.

Was quite relieved. But he then went on to say,

"And there's actually no cure, as of yet. No one knows how the problem comes and how to make it go away because no one knows the root cause of the disease. So we can just offer some treatments, but the effect is not long-lasting and you'd have to do the treatment again"

Probably the last thing you'd want to know about your condition, but I've made peace with it. Keep telling myself that God won't test you if He knows you're not capable.

I just nodded. Surprisingly, I didn't even cry - I just wanted to know the truth.

The treatment


Then, he talked about treatments available in his clinic - and one of the most effective ones, he said, is Botox injection. No, it's not the cosmetic injection one - it's an injection of Botox INTO your throat, specifically the muscle near your voice box called larynx. This is the muscle which vibrates and produces your voice. Apparently in my case, the muscle doesn't vibrate as normal person's would and it would get abnormal spasms, which explains the creaky voice. This would make your voice sounds off-putting, hoarse, and just..not normal.

After giving it a thought, I told him I agreed to the procedure. He said that since the injection procedure is quite tedious, there maybe a chance that it won't work and I'd have to be injected again until it works.

At least I tried, I thought. After all those months of suffering, I'm not giving up even if I have 50-50 chance of getting the treatment work.

So I had my first injection. (You can Youtube it, just look for the disease) It was probably the most painful thing I've ever done; I was not allowed to swallow or talk during the injection so it was so uncomfortable! Before the injection, I was injected with the drug to make my muscle numb before the actual Botox injection. The good thing was it was a short procedure, it was over in about 20 minutes.

Then, the doctor asked me to go home and rest. He briefed me about the side effects.

Post-treatment

After the numbness gone, it was painful even to swallow my saliva T.T

Couldn't eat anything except porridge, and plain water. I had no voice for a few days post-treatment - which was as per the doctor's explanation, a common side effect before the drug really takes effect - so it was quite funny at first. I sounded like Minnie Mouse -_-



After more than a week, I recovered - and my normal voice is back. The creaky voice is gone! (and the Minnie Mouse voice too hehe)

So after that treatment, I was required to do checkups at least once in every 6 months. I've been getting a few injections during those checkups whenever the dose is finished and the creaky voice is back because the injection's effect is only temporary.

Last treatment

It was a few months after I've gotten married, and I just found out that I was pregnant. During the checkup, I told the doctor that I was worried about the side effects to pregnancy - he assured me that it's fine, but I can stop if I want to.

Which means I'd have to live with the creaky voice if I chose to stop the treatment.

So I stopped. It was getting too painful anyway, and I decided to stop depending on the injection. Don't get me wrong, I agree that the injections somehow helped me cope with the condition - I'm grateful for them, but it was too painful to bear. Shahrul witnessed the procedure once, and even he was terrified of the whole thing (watch the Youtube video, you'd know) so imagine what I went through!

But but, after several injections (or several checkup treatments), I noticed that I could control it a bit better. The creaky voice is still there, but after those treatments, I've learned how to make it less obvious, though certain times I have no control over it, I try to make the best out of it.

After the treatments, I started making recordings of my voice, too. I used to record my voice day-to-day basis; to see if there were any improvement especially a few days after the treatment. It was liberating when I listen to those recordings - my voice used to be so hoarse and creaky that I'd understand if people cast me weird looks.

Now, if you talk to me you'd sometimes notice the hoarseness, but not all the time. Especially when I'm singing.

I started recording my singing, too.



This is one of the recordings I made on Smule, just because the boy's voice is so cute haha. This is how I imagine would be like if Rayyan is old enough and we'd have a duet! (you can still hear in the recording where my voice would go hoarse at certain points)

Ok. Jokes aside, this phase of my life has taught me valuable lessons :

+ nobody is perfect. You might see some people look very normal and have a good life, but you never know what they're suffering of - so be grateful for your life, even if you think it's not perfect
+ sickness is a test from God, but He doesn't test you with something you can't handle
+ be humble always, everyone has their own problems
+ see the silver lightning in every storm - I'd never have the guts to record my own voice and post it anywhere if it weren't for this sickness. But they're only for my own entertainment, I don't intend to be a serious singer XD

I know I'd never be cured from this (no cure is found as of now), but I'm grateful with the progress I've made from the last few years. So I hope by sharing this, other people who are suffering from the same disease (probably 3% of the whole population) would find some strength to overcome their condition and ease them a bit.

Nobody is perfect.

6 comments:

  1. My sister has the same disease. Thank you for sharing this, now i know she's not alone...

    ReplyDelete
    Replies
    1. Hi Dinah, thanks for leaving a comment :) It means a lot. Hope this helps somehow.

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  2. Thank you for your sharing, I guess it do bring courage and strength to whose share the same condition :)

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  3. May I know how much the cost needed for the treatment? Thank you in advance :)

    ReplyDelete
    Replies
    1. Hi, the Botox injection costs RM100. But that was back in 2014 I think, not sure about the current one. Depending on your condition, Prof Sani will advise on the frequency of injection you'd have to take. I'd suggest you make an appointment with him to get a better estimation :)

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