Tongue Physical Therapy - tongue muscles not responding

Weathering
Weathering Member Posts: 7
in Head and Neck Cancer #1

Hi, I had surgery on the left side of my neck to remove 39 lymph nodes, my submandibular gland, 2/3 of the SCM muscle, and a melanoma tumor (former lymph node wrapped around SCM).  That was in early February.  Following the surgery I had physical therapy for shoulder issues (extreme muscle tightness, so much so that my arm wouldn't go above horizontal).  I also did 8 sessions of speech therapy because my tongue muscles on the left side do not respond.  Since then my tongue muscles seem to respond but act like my shoulder muscles and are too tight to function normally.  My speech therapist only wanted to help me speak normally, but was not interested in helping me with my tongue muscles.  Physical Therapy was great for my shoulder and wanted to help with my tongue (they even contacted my speech therapist - they are all in the same health system) but it wasn't something they were trained/certified to do - it was the realm of speech therapy.

Does anyone know of places I could look for more information on tongue muscle issues (e.g. online forums/groups, specific speech therapists who work on tongue muscles, physical therapists who work on tongue muscle issues)?  

Anyone else have tongue muscle issues following surgery? (I've seen some references of tongue cramping/spasms, but my issue is persistent so far after 5 months from surgery).

Thank you so much.  I am trying to 'get back to normal' and this tongue issue is the last big thing (then I'll be able to speak normally again and will be more comfortable in public / social gatherings).

Dan

 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    speech

    Hi Dan,

    I hear you, I had speech therapy and was given a number of exercises, some with hard rubber chew toys (I don’t know what they were called) for strengthening my jaw, long straws and all kinds of verbal exercises.  It helped me a lot.

    I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).

    Matt

  • MGC
    MGC Member Posts: 72 Member
    edited July 2017 #3
    Tongue

    Hi Dan. 

    I also have tongue muscle issues. Actually there is nothing wrong the Tongue itself in my case and likely yours to. The tongue, being a muscle is controlled via nerve impulses from the brain like any other muscle in your body. The nerve that controls the tongue is called the Hypoglossal nerve. This nerve is one of the cranial nerves on the side of your neck. Because I had radiation treatment on my neck from SCC of the tonsil and BOT the Hypoglossal nerve was damaged. It did not present until five years after treatment. The result according the doctors is that nerve is starting to die from the radiation. It is not a common side effect but does affect some.

    The result for me is basically half my tongue does not function normally and does not look normal either. Swallowing and chewing is challenging to say the least and I am always the last one to finish eating at the dinner table. I have learned that I must chew and chew and chew before attempting to swallow. I have been to speech therapy and they have several giving me several exercises that are designed to strengthen the good side in an effort to over compensate for the weak side. My speech is good for the most part but occasionally I slur a bit almost like I have had one too many to drink. Thankfully, the tongues is split down the middle and the nerves on the other side are still good. I am now 7 years post treatment and I do not think there has been a lot of change from the last 2 years so I am hoping that the dying nerve does not get worse. The doctors claim it could get worse or could stay the same forever. Getting worse would be bad because it would eventually mean a feeding tube and or the inability to talk.

    Hope this helps.

     

    Ps, I did not have any surgery but did have multiple lymph nodes involved in addition to the tumor.

  • SASH
    SASH Member Posts: 421 Member
    edited July 2017 #4
    Speech Therapists that deal with swallowing might help

    Speech Therapists that deal with swallowing might help.  https://www.swallowingdisorders.org

     

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