Hi my husband has just had a full glossectomy and laryngetomy and has been told he will never be able to speak again...I have seen various threads on here but can anyone advise if this is at all possible? and if so what he would need to be fitted with for this to happen? Thanks Kathy

Hello Kathy,
My husband Kris had his total Glossectomy and total laryngectomy 5 years ago ( next week).
Kris had had prior radiation, so our team wanted him to wait 6 months before they put in the TEP speaking valve.
It works. For us anyway. As he has no tongue it is very difficult to enunciate words. However, if he speaks slowly I understand 90% of what he says. As do our children and a few close friends. If he has just had a drink, he can sound like he is underwater. Yes, it can be frustrating at times and Kris gets cross if I don't understand, but it really does work for us and sure beats writing everything down with pen and paper.
He can't go into a shop and hold a conversation. It is quite a different way of speaking and I liken it to listening to a very thick foreign accent. Once you have got " your ear in" you understand.
We wouldn't be without this mode of speech.
Ask your team about a TEP ( Tracheo esophageal puncture ) and speaking valve.
This works by making a passage between the trachea and the oesophagus. He would then occlude the Stoma with a finger and "talk". This then forces the air through the valve where it resonates in the tissues of the oesophagus making sound. He will need the help of a speech language therapist to master this. Kris said " hello " clearly straight away. It did though take him some weeks of practice to be more fluent.

I wish you both the best with this. Believe me , speech certainly is possible. Dont let your team tell you otherwise.
Tammy

Welcome to OCF! Im sorry to hear about your husband! You are in the best place for up to date, correct medical info and support.

I have seen many of our members who have had partial glossectomies speak after their surgery. Those with a full glossectomy and laryngetomy arent as fortunate. With the voice box removed it takes away the ability to speak using vocal cords. Your husband may need an obturator which is a mouth prostethis used to cover a hole in his palate. Your husband might be able to speak using esophageal speech, I dont know if this would be possible. The Web Whispers organization has more info on this. I also would ask your husbands doctor. One important thing to remember is everyone is different. Every patient is an individual and will respond in their own way to medications, medical procedures and recovery.

Patients recovering from a full glossectomy/laryngectomy can have a long road. Many have considerable swelling and pain. Theres also the mental aspect to coping with such a major lifestyle change. Many patients will benefit from having a professional help them come to terms with finding their new normal. Ive included a couple links at the bottom you may find helpful.

As a caregiver, you also have a very difficult task. Make sure to take time for yourself even if its just a walk around the block to clear your head. You may find its helpful to read thru hundreds of posts related to what your husband has been thru.

Best wishes to both you and your husband.

Main OCF site --- Understanding Oral Cancer, complications of treatment

Web Whispers

Thank you that is lovely to hear and very encouraging....it is very hard and it is a slow process...and did relate to an earlier post of yours about the silence....we have dogs and now it's me and them making all the noise...very odd we have also started to learn Makaton.... he did manage to bank his voice although towards the end it was difficult for him to speak however at least we have that option but we need to the correct Ipad and App to make this all work porperly....Tony only had his op on the 3 Feb so we are in very early stages of getting sorted with all this....thank you i value your comments and support.... Kathy

You're welcome. Im happy I could bring you some encouragement.

I had a close friend who lost her voice box. My friend had cancer recurrences many times. She couldnt make any sounds at all. Theres an ipad app she used and it worked great. Its called "Speak It" and will say whatever he would type. Using the text to speech app even worked when she wanted to make a phone call.

My friend lived a full life even without a voice box and the ability to talk. She reunited with an old high school pal and they fell in love and got married. My friend went to the OCF walk/run events with me and had many friends. She traveled, bought her "mid life crisis" convertible that she always wanted and was the same great, happy person as when she could still talk. Even though she didnt make any sounds, we would laugh and and have lots of fun together. She typed on her ipad and the app said what she typed, we had many long in depth conversations.

Im telling you all this so even if your husband isnt able to talk, he can still do many things he enjoys. It will just take some time until he feels better both physically and mentally. A therapist, maybe some meds can help? Acceptance has no timeline, Im speaking first hand about this. I ended up disfigured after my 3rd round of OC. By the time I left the hospital after my 2 month stint, I had come to terms with what my new life was all about. I couldnt hide my deformity but I did have control over how I felt about it. I was still the same person inside and nobody could take that away from me. Being only a few weeks post surgery, your husband still has lots more recovering to do. I suggest if he hasnt already seen a speech pathologist to find one who is very experienced and who has worked with OC patients. You never know, maybe they can help him, (at least Im hoping they can) he can at least give it a try.

Good luck!!!

PS... Sorry for rambling on. Being new here you havent been here thru many of our active members histories so I shared some from a dear friend (sadly she has passed away) and myself.

Hi Kathy, recovery from this surgery takes many , many months. I think the main thing is to remain upbeat and positive.
Please feel free to Pm me anytime if I can help you both.
Tammy

Thank you it is lovely to find someone to ask...none of it is easy...do you know how long the coughing lasts? we have been told it takes 6 months or so for the lungs to settle down and over producing mucous.... I can see it is hard for Tony with the constant suction and nebuliser use but I guess its part of his life now
Kathy

Tammy (or someone who went thru it) would have better info about something like than than I would. My friend had mucous and coughed for several years after her surgery. She always carried tissues and wiped the phlegm from her stoma site. I dont know if it ever lessened for her.

I would check with his doc about giving him some sort of cold or allergy type medication, something with guaifenesin to help with the mucous.

Unfortunately the coughing goes hand in hand with this as his lungs adjust to the new way of breathing. Normally our lungs produce over 500mls of mucous a day which we swallow without being aware of . Now of course it just all comes out of the stoma. I remember Kris coughing and sputum flying across the room! I then had to hunt it out to clean it up.
I hope Tony has been given HME filters to wear over his Stoma. These little filters do the job of the nose which is now bypassed in breathing. They filter , warm and humidify the air that is breathed through the Stoma . We have certainly found that they do help to reduce the amount of mucous and coughing. Otherwise he is breathing in cold ( not 37degrees C) dry air which is a huge irritant to the lungs. Hence more sputum production.
Certainly sputum production does lessen with time and becomes more manageable.
I think the most important thing in the long recovery is remaining positive and being involved in life. I would make Kris get out of the house by taking him for walks through a park or along the beach. We went to see a movie every week. Even though the coughing did disturb Kris I pretended not to notice which I think helped not draw attention to him.
Once he had fully mastered swallowing, I insisted he join me at Cafes where he would have a coffee.
After a few months Kris joined a gym and after a few sessions, he went alone. I was not needed anymore. As his confidence grew, so he became more independent and started going to the library by himself. The day he went to town armed just with his IPad and the Speakit app I was so proud.
Kris also used the nebuliser, at least 4-6 times daily and even now he uses it once or twice a day. It is an invaluable tool in helping to thin the mucous thereby making it easier to cough out. We even have a tiny portable nebuliser which fits in my handbag . We take this with us on our overseas trips. We have been to Australia, Malaysia and Vietnam. Have nebuliser and blender will travel.
Life of good. Tony and yours will be too.
Tammy

Thank you Tammy - I really appreciate you positive and encouraging responses. I showed Tony these and it really made a difference. This is Tony's second primary cancer the first was in 2013 when he had nasalphyrangeal cancer...which was hard he had intense radio therapy and chemo and had a PEG fitted then...when it was fitted he contracted MRSA to such a degree it became life threatening and that was before he had even started his cancer treatment.. then when he had this removed he had a heart attack and then was very seriously ill with bacterial meningitis ....and now he has had a second primary ...so been quite an adventure to say the least...I am very thankful to have found this forum...as this is life changing on so many fronts and I understand from our consultant here that this is a still a very rare operation...even the day before we were questioned if he still wished to go ahead...thank goodness he did.. I hope you and Christine don't mind if we keep in touch... best wishes to you both...Kathy