I saw the speech pathologist last week for speech finally, since my swallowing is fine. I can eat almost everything (really crunchy or chewy food would be too challenging). I am not happy with my speech at this point. It's not awful but I have a definite lisp, and difficulty with certain letters. Friends say I sound like me, but to me I sound funny. I only had about 25% of my tongue removed so Speech Path was thinking that the speech impact as well as the extent of my ability to manoeuvre my tongue to clear food was a bit disproportionate to the tongue loss / flap. However, she noticed on her own that I have some facial nerve impact; the left side of my mouth doesn't go down when I open my mouth. It has improved some since Apr 10th surgery. Speech Path is thinking that some of the impact is therefore due to this facial nerve, and not just to the tongue flap. I have a bunch of exercises to do, but I wanted to see if anyone else had this kind of nerve damage after surgery and if it got better. Thank you.

Are you still in your chemo and radiation? That will make a difference, too.

I ended up seeing a speech therapist / OT but waited a good year or more after my final treatments. (I was just too darn tired to pursue it sooner, and kept thinking things would get better. Maybe they would have, actually ... it wasn't awful, but I was getting frustrated, and decided I needed help. Also, broke my shoulder in the interim and the PT slowed down all the other stuff I needed to do. Life is fun.) Anyway, the speech therapist has been wonderful. She's trained in a LOT of different things I never would have thought of ... not just speech, but swallowing exercises, special massage techniques for my radiated neck, my tongue, you name it ... all to loosen up the scar tissue and get things flowing again so it's not so tight and congested all the time. It was SO much more than just speech they helped me with, that I wish I'd been able to start sooner. We've kept at it longer than I expected, too, because it keeps on helping. We've taken a break as I had to go through oral surgery and am awaiting dentures (and I figure that'll reset some of my speech needs), but if you think you might want the help, find one that has that extra bit of training and can do more than just speech, because it will SO be worth it. However, if you're still in treatment, wait till it's all done, because massaging that radiated neck isn't going to feel good just yet... ((hugs))

Prior to bringing in someone to help you learn how to better use your new tongue talk with your doctor to make certain you are clear to begin any kind of PT.


PS... Your photo has been removed. Im sorry, seeing pictures does not help us help you. Being that our members are OC patients/survivors and caregivers we each have our own unique situations that may or may not be anything similar to what your photo showed. We do NOT have years of medical training/education, we would not know what is normal and what isnt for your specific situation. When viewing a picture over the internet even someone with a medical degree may not be able to help or worse could result in wrong info being given. There is so much more that goes into making a diagnosis than seeing a photo. Medical professionals examine the patient, read their full medical history and ask clarifying questions, see all notes from previous office visits, check their test results, etc before giving a diagnosis.

Hi Kristen, thanks for the input. I have only finished 7 of 30 rads and 1 of 3 chemos so I have a ways to go. My Speech Path is thinking it will get worse before it gets better so I am hoping to just stay on top of things as much as possible.

Hi Christine, thanks for the input. Sorry for the photo then, I was thinking it would just show what I was talking about. My RO is the one who sent the referral to the Speech Pathologisy.

If you're still in treatment, then Christine is right and you need to wait on clearance for the therapy. For most of us (not all, but most) it does get worse before it gets better, and you need to spend your energy healing. The one best exercise you can do right now is keeping up your swallow reflex. The rest can be worked on later. Rads continue to work even after the treatments stop, so it'll be some time after that before you're likely to be ready for formal therapy. But at least you've already got somebody lined up ... that's got to be a good thing! Will be thinking of you!

Kristen