Dealing with dysarthia

In a few short weeks time, I won’t be able to speak.  I won’t be able to chew.  I won’t even be able to swallow.

So, today, we met my speech pathologist, Dr Compassionate.  She spent more than one-and-a-half hours with us.  She wanted to hear my story from the beginning.  She was sympathetic, helpful and generous with her time.  Exactly who you’d want to be there with you through the hard yards of recovery.

When she’d call to set up the appointment, I’d explained quite how little information I had from Dr P on my speech pathology needs.  She had since called Dr P and knew more, but still asked me to run her through what had happened to bring us to this point.

Oh were there tears.

You see, on the way to our appointment, I’d just called J at Dr P’s office to ask follow up questions about the hospital admission paperwork.  She didn’t know when the pathology tests listed on the paperwork would take place, but the hospital will probably arrange all that.  Probably?  Perhaps on the night before surgery when I’d probably be admitted.  Will I?

You really DO need to know what to ask.  I asked J on the spot if I could schedule a pre-op consultation with Dr P for all my questions.  It could be difficult to find a time before 1 August, she demurred, but I could put my questions in an email for her to forward to Dr P.  He is checking his email and is good at responding.  Yes please.  I’ll take whatever I can get.

So Dr C’s mere hint of compassion brought on tears.  I do need to ask questions and be comfortable, she agreed.  If I couldn’t pin down my surgeon for a Q&A session, she directed me to people I could ask.  The hospital or J at Dr P’s office, she suggested, should be able to put me in contact with the clinical nurse specialist or consultant who will be looking after me post-op.  I can ask to meet her pre-op to ask questions.  They should also be able to put me in contact with the dietitian who’ll look after me.  I should raise with her my weight loss and milk allergy.

And Dr C, of course, will help me as my speech pathologist.  I’ll have what they call dysarthia, she explained, otherwise known as a motor speech impairment.  While in many cases the cause is cognitive or neurological, my dysarthia will be a physical result of the surgery.

In part, the cause is temporary.  I may have intubation trauma from the tubes they insert to allow me to breathe during the 10 hour surgery and I may have residual hoarseness.  Then there’s the nasogastric tube (NG tube) that will feed me, the tracheostomy that will enable me to breathe, and the wiring of my jaw that will help to protect my fibula flap while it heals.  In part, the cause is permanent.  The surgery removes the mandibular branch of my facial nerve and I’ll have sensory impairment of my chin and lip.

This is the diagram she used as she led us carefully and thoroughly through what will happen.

Speech pathology diagram - 8 July 2011

The nasogastric tube, Dr C said, will be inserted through my nose, behind my soft palate, down the back of my throat (pharynx), down my esophagus, into my stomach.  This will affect my speech because you close the soft palate to shape some sounds.  It can cause some discomfort, some ‘pharyngeal sensation’.

It’s the tracheostomy tube that will be the real culprit.  They insert it below my voice box (larynx) so I can breathe directly into my trachea without using my nose or mouth.  Tracheostomy is a matter of ‘routine’ for my team because of the several facial swelling in this type of surgery.

When you speak, air is pushed up from your lungs through the vocal folds in your larynx.  This makes the sound and how you move your mouth shapes that sound.  If my tracheostomy tube has a window (fenestration) in the top that allows some air to pass through, I may be able to make some sound.  Otherwise, I won’t.  Even once it’s removed, my voice may be weak and breathy.

We will start working on my swallowing after they remove the tracheostomy tube.  My notes from our consultation with Dr A suggest this is 24 to 48 hours after surgery.  I’ll start on liquid puree, exactly as Alannah first did all those months ago.  As I eat more, my dietitian – in consultation with Dr C – will dial down amount I’m fed through the nasogastric tube.  And as with Alannah, they’ll increase the consistency of the puree as I can get more down.  I’ll be able to move on to very soft foods probably about six weeks after surgery when they remove the wiring from my jaw.  Steak and apples are a very distant prospect.

Once I can swallow well, we’ll work on speaking.  I will learn, slowly, to compensate for the sensory impairment from the loss of the nerve.  I’ll see her in hospital and later as an outpatient, perhaps weekly in late September and October.  We’ll do jaw, lip and tongue exercises.

In the meantime, of course, I’ll need to communicate.  Most simply about my pain levels or needs while in ICU, but about other matters as well.  While I’ll want the good old pen and paper, she said, the iPhone has some great apps that have revolutionised her practice.  She pointed us particularly to two Lingraphica apps: ICU and small talk.  Perfect.  And free.

Before we left, Dr C did some video and sound recordings to use as a baseline for my speech recovery.  I read the Grandfather Passage, a common reading used for speech evaluation. She gave me a picture and asked me to describe what I saw.  I completed a variety of tests against a dysarthia profile checklist.  The tests cover respiration, phonation, facial musculature, diadochokinesis (repetition), reflexes, articulation, intelligibility, and prosody (rate).

I’m so very glad Dr C will be on my team.

The Grandfather Passage

You wished to know all about my grandfather.Well, he is nearly ninety-three years old. He dresses himself in an ancient black frock coat, usually minus several buttons; yet he still thinks as swiftly as ever. A long, flowing beard clings to his chin, giving those who observe him a pronounced feeling of the utmost respect. When he speaks his voice is just a bit cracked and quivers a trifle. Twice each day he plays skillfully and with zest upon our small organ. Except in the winter when the ooze or snow or ice prevents, he slowly takes a short walk in the open air each day.We have often urged him to walk more and smoke less, but he always answers, “Banana Oil!” Grandfather likes to be modern in his language.

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Comments

  1. Banana oil is a great answer to any question…

  2. Sheesh.
    What makes you more scared?
    The actual surgery or the recovery?

  3. Letty, I’m most scared of the relentlessness and the disorder. I’m scared they are going into surgery almost half cocked. I’m scared that I’m not prepared for what is to come because I can’t get straight answers. I’m scared that there are questions I won’t have known to ask. I’m scared they may have missed something because they haven’t even thought to look.

  4. I did not realise how incredibly invasive this surgery is goingto be. Not just surgically but the whole speaking & eating issue must be absolutely terrifying. Don’t put that fear away in order to stay strong. Have you looked into baby sign language? It is a simple and fun way for babys & toddlers to communicate with their parents before they can actually speak. Maybe it is a way for you and your daughter to communicate when you can not speak. No idea of course as I don’t have kids but I read about it yesterday and thought of you.

  5. It’s funny, isn’t it? The natural distrust of doctors and surgeons.
    I felt that way when we were at St Vincents Hosp. – like they weren’t paying enough attention to Vince – that they were somehow distracted.
    I think that is the nature of most hospitals – especially if they are big hospitals.
    You just feel like a number – like cattle.
    All that changed when we went to Peter MacCallum – a dedicated cancer hospital.
    The “vibe” was totally different .

    I remember what made me feel better when we were at the big hospital was to make
    connections with the other people at the hospital. You know the ward clerks, the orderlies (or whatever they are called now), the pharmacists, the coffee lady and of course, the nurses – I felt like they “knew” us and therefore you feel more supported – like if you miss something – other people have your back.
    Maybe you could visit the ward you will be on and have a good look around and a little explore and meet some of the nurses who will be looking after you and the same with the ICU.
    Oh and a good idea is to meet beforehand the young resident doctors on your ward. They are like your day to day contact and have the big doctors’ ears.
    And coz they are new and fresh – they are conscientious and eager to do what they can for you.
    Actually the more I think about it – those young doctors were really great at making you feel cared for and would spend the time explaining things in detail. I remember one of the surgical residents was allowed to sew up Vince’s head after one of his surgeries and when we saw him 4 years later somewhere else he remembered every little thing about Vince.

    And of course there will be questions you will not have thought to ask, because they are so far out of your frame of reference and you just can’t imagine them.
    And of course you CAN’T prepare yourself for everything.
    Weird stuff happens – good and bad.
    You just have to have faith in yourself that you will know how to handle things as they arise.
    But look at you!!!
    Surely, you must know how capable you are?

  6. You know hun, sometimes we need to just trust in the process, these doctors are obviously the best, they have you running for tests, making sure all bases are covered, trust that the process is exactly how it shoul be, if there is a quetion u havent thought to ask then you probably dont need to know, all these dr’s have your back (or should i say jaw hehehe), trust that u will be well cared for and i have no doubt you will! Sometimes there are things we need to know but not until we need to know them, does that make sense!
    You are in the best of hands, drs arent usually know for there bedside manner but what counts is how they perform in the operating room.
    Not sure if that brings you calm but i hope maybe a little!
    P.s. Gotta love iphone, how awesome is that!!!!!

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