I guess a new Preston plan deserves a blog post?! After all, I’ve been waiting on Preston to try and help me for 3 years now…or there abouts!
Today I had my 29 millionth nasendoscopy. Feels like I’ve had that many anyway! Probably only had about 10-20, but the more I have them, the more pointless they seem. Why do they insist on checking I still have vocal cord dysfunction so many times when they aren’t going to do anything about it? I had one a few weeks ago during my last admission in Aintree. They’ve never seen my VCD before with the scope so they had a go, and guess what, I’ve got vocal cord dysfunction! Shocker! It’s so depressing constantly battling to get help with my health, having such frequent admissions, losing my job, taking loads of medications and literally getting nowhere, with everybody trying to pass the book to someone else and nobody really seeming like they want to help.
Today was in Preston again. I’ve recently completed my third round of speech therapy or “intense therapy” as they call it. When I started this round a few months ago, we upped how often I do my vocal exercises (and no, it’s nothing like Sharpay on High School Musical…thankfully!). Infant, I’ve only been “caught” doing them 3 times in the last few months I’ve gotten that good at doing them as I go and not drawing attention to myself. So I used to do the exercises two or three times a day like my last speech therapist advised. This time, I was told to increase that to doing the exercise five times, 20 times a day! As I’ve said before, my VCD pretty much comes back as soon as I stop during an attack, its the same when I’m just maintaining things. Doing the exercises and my airway is nice and open, stop and it takes 2-3 breaths for it to start tightening up again.
So onto today, nasendoscopy 29million, I refuse the local anaesthetic spray because that is the worst! Then they put the camera up your nose and into the back of your throat until the camera sits just above your vocal cords and they can be seen on a screen next to the bed. I couldn’t see the monitor though during the test. They asked me to just breathe for a bit, and then on a scale of 0-10 how would I rate my VCD. Clearly a 0, I did’t feel any different to normal. Then I had to count from 1-10 out loud, say eeeeeee and a few other things, and again they ask on a scale of 0-10 how is my VCD. Again it was 0, no different to how I normally feel in everyday life. Next step was counting from 1-10 but getting gradually louder until you are shouting by 10. Then on a scale of 0-10 blah blah blah, still 0. The speech therapist in the room then asked my consultant if they could push me further and use some deodorant to see how I responded. He asked was I symptomatic or wheezing and the speech therapist said no not at all. She sounded a bit surprised but they went on and sprayed the strongest mens deodorant my nose has ever experienced. I purposely breathed it in through my mouth in the hopes I would react to it. I was so not ready for a negative test after all my admissions lately, I was not getting told everything was ok today! And then they asked after a few breaths of the grossest smell ever, on a scale of 0-10….I said about 3. They told me to turn my head to look at the monitor, “are you sure its a 3/10?” and I could see my vocal cords really tightening up on the monitor, but it definitely felt like a 3, it didn’t feel that bad! We then went through all my exercises so I can see it on the screen that when I do them my vocal cords do open up to let air in, but then we could see after a few breaths it does start to reverse again. Apparently my 0/10 when we first started was worse than what most call a 3/10 and so they said if I wait for 10/10 before I give in and go to A&E they aren’t surprised at all because it would be some major tightening to get me to that level. I do wait until it’s bad, because for the last 3 years everyone medical has been telling me I should be able to control my VCD myself, without need for hospital or any intervention. I wait until it’s an 8+ when I’ve got a stridor and you can hear me before you see me! I know at that point I can’t control it myself, that I do need help. And it seems like they finally understood that today.
So everyone agreed, my VCD is worse even after speech therapy again. I am starting on some tablets that effect the nerves in your body with the hope that my throat and vocal cords will become less responsive over time. As soon as my GP gets this report I need to go and see them so that I can start on that, and then the dose will be increased a few weeks later. In the mean time I have to go back for another round of “intense therapy” and then after that have my 29 million and 1st nasendoscopy to see how I respond to it all. If it’s not improving enough, or at all, then they will discuss further medical interventions. A lot of people have been asking me if they will consider botox in my vocal cords but my consultant mentioned it today and said he doesn’t like doing that, and does’t think the benefits outweigh the risks. If they opt for the botox option it would be injections every 6 months which would progressively just paralyse my vocal cords/throat and I would eventually lose the ability to swallow, but not before I started regularly aspirating and developing frequent chest infections and pneumonias and therefore worsening my asthma. So it’s not a decision he will take lightly. And hopefully that means theres a different option he’s just not even mentioned that will be my little miracle cure and sort me out!
But for now I’ve got to buckle down and get on with it! Increase the number of times a day I do my exercises even more, trial the tablets and more speech therapy sessions. Apparently it’ll be another 3 years or so before I get control over it all properly, and thats if everything goes to plan! Let’s hope I can do as I’m told for once in my life hey?!