So why can't i speak and how do i communicate?
This is an excellent question. Like most people, i didn't pay much attention to the precise anatomy of my mouth and neck. So, I thought i'd cover some nuts and bolts about my new anatomy and my speaking devices and the future of my speech.
In normal anatomy we create speech but using air passing through our larynx, causing vibrations, and then shape this sound using our lips, teeth, and TONGUE.
In my case, air no longer flows in and out of my mouth/nose. The esophagus (the pipe leading from mouth to stomach) and trachea (pipe from mouth to lungs) are now fully separated. There is no larynx to make vibrations. There is no tongue to shape those vibrations into sound. The tongue was replaced with a chunk of my thigh. This is what i call my 'thongue'. It has no operational capacity and only serves to take up space so i dont have a giant pit in my mouth. The hole in my neck, aka stoma, is directly into my trachea. Usually your nose and mouth filter the air going into your lungs. To take the place of that, I have what is called an HME that covers my stoma.
The HME (arrow is pointing to it in this pic of me!) is basically a little piece of plastic (that cost like a ridiculous $2-3 a pop so we can make some execs rich) that holds what looks like a little sponge that helps filter the air and keep humidity in my trachea... like our nose and mouth would normally do.
Now, people with JUST a laryngectomy often have the ability to speak again. You know, that froggy sounding speech. How do they do this? A small puncture is made between the trachea and the esophagus. Then a little plastic valve (a TEP) is inserted in this puncture. Then they can press on the HME to close the airflow in and out of neck and press on the TEP valve opening it up, so the air goes through the puncture and up the esophagus out the mouth. Then the air can be shaped into words by the mouth. Some laryngectomees use an EL, electrolarynx, instead of a TEP to cause vibrations that then they can shape with their mouth into speech.
YES, i can get a TEP. However, without a tongue its super difficult and perhaps impossible to make intelligible words (illustration above is showing a TEP in someone with a tongue, remember i just have a 'thongue'). There are very few TOTAL glossectomees out there in the world, I can't find quantitative data on how many. Lets touch for a moment on what it means to not have a tongue at all. I certainly never thought about how big the tongue is. It's not just the part you see, its got a whole muscle under it also. Sort of like you are seeing the tip of an iceberg. They took ALL of that muscle out, and shoved a lump of my thigh (I call this my Thongue - THigh tONGUE) in there to fill in the hole. (look back up at the second illustration shown here) I do not have feeling or any movement on the floor of my mouth, no taste buds of course. By the way, if you are ever interested in seeing what it looks like in there just ask. I'm more than happy to show you, its not that scary and sort of an interesting curiosity (like a circus act). I do retain taste buds elsewhere in my mouth, but my taste is significantly different than before. Now, there are actually few total (badass) glossectomees out there who HAVE been able to learn to speak using a TEP and a palatal obturator.
The obturator (looks like a fat retainer) drops down the top of the mouth to help narrow the space between that and my 'thongue'. My doctors told me that i am a good candidate for this. However, it would most likely take years of hard work to make intelligible speech. Even then it might only be good enough so family learns to understand me. So honestly i have been like 95% on the NO side of the risk/reward fence.
Enter stage left, Dave. I just met Dave, although i had heard of his mystical presence...he has some of my same doctors and same SLP (speech language pathologist). He too has a laryngectomy and total glossectomy. I was FLOORED when i heard him speak VERY INTELLIGIBLY. He may officially be my new role model. It did take him years of practice to do this and my doctors have said even with practice not everyone can necessarily achieve this. Temper expectations. But it gives me some hope and now i'm 95% yes, take the gamble. We will see. In the MEANTIME, a girl gotta talk!
When i learned that i would not speak again i quickly scrambled doing research. How could i talk using technology? I will pause to mention that there was no mention of any options by my medical team - i sought this out alone. I discovered there are multiple apps for your phone that do text to speak. At first i thought, okay guess i will have a sweet Australian accent! Then i discovered there are companies that can take recordings of your own voice and synthesize them into speech to be used in apps and programs for texting/typing to speak. I was like, hot diggity! I only had several weeks before surgery so i went into high gear. I recorded with multiple companies simultaneously because it would take weeks to hear the results, and i wanted the best chances of having a voice that sounded like me and could be used in multiple applications. This process is known as Voice Banking. It wasn't easy because it was getting more and more painful to speak. I created other recordings of myself reading childrens books and phrases as well. This process is known as Message Banking.
Some of the synthesized Sonya voices were not great...One sounded like i was100 years old, one was nails on a chalkboard cringe-worthy, but one was pretty good (www://www.speakunique.co.uk/). I have two ways of using the synthesized version of my voice. Either a phone app (i like the SpeakUnique app) or a program (Tobii communicator 5) on my microsoft surface. I use a bluetooth speaker with either of these devices to get enough volume to be heard. I mean, they are pretty good. However, the communicator program often drops the last word of my sentence. My voice is staccato with no expression. The pronunciation just off a bit on certain words. Listen - don't get me wrong, I'm super happy to have it and even 10 years ago it wouldn't be nearly so good or easy to do. Its almost me, almost human, but no...not really.
HOWEVER, another very exciting thing that i have in the works is ANOTHER voice/program. I have been super fortunate to be working with a company called SpeechMorphing in developing their app Smorph. This company works mainly in AI, creating voices for entertainment, or for business applications. You would be familiar with the type of technology from things like Deep Fakes. Scary stuff right? How about LIBERATING STUFF! When i heard the first draft of my voice from them, i literally broke into sobs. I actually never liked me voice much. Until i lost it. Then i suddenly realized how much it was part of me and made me feel well, like ME. Check it out!
Please always free to ask me questions!
*note, a laryngectomy is NOT the same as a tracheostomy. Trach patients still have a larynx and tongue.
Didn't know that a laryngectomy is different from a tracheostomy? Guess what, neither does X% of medical staff - and that is scary because the difference can mean life or death for laryngectomees!