My brother underwent a total glossectomy in September. He is having a horrible time recooperating. Has anyone gone through this. I am desperate to learn how to help him and give him peace of mind.

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hi and welcome

could you be a bit more specfic do you think,then we may be able to help

liz

My brother was diagnosed 2 years ago with squamous cell carcinoma of the tongue. He went through two operations to remove parts of his tongue. He also went through chemo and radiation (May and June 2007). Afterward, they found the tumor had returned and had to have a total glossectomy (September 2007). His face is very swollen on a daily basis. He tends to choke many times throughout the day. He does have a trach. He suffers from daily headaches. He can not sleep because he fears the choking. He is also unable to lie down. We have tried recliners, pillows and foam but nothing works. He just recently ordered a "hospital bed". The doctors have stated that all these problems are normal. I guess I would like to just talk to someone who has gone through this so that I can give him peace of mind. He used to be extremly active and loved his job as police officer. Now he feels condemed to the living room where his frustration level has exceeded his ability to relax. Thank you for your reply. I have read many posts from different people and know that this is a sacred place for many.

Wow that is some surgery.I have a friend on the oral cancer foundation called miss kate,and she is 33 and had a total glossectomy i will see if i can get a contact address for you to e-mail her.you could log on to the oralcancerfoundation.org and read here blog.

love liz

Thank you very much. Any help is greatly appreciated.

I wrote to kate and she is happy to help.hopefully she will be in touch soon,she couldnt find your thread last night,so she may send me am e-mail address for you to get in touch direct

liz

Dear Cookey,

I am happy to say that I did find kate on OCF site. She has written me and given me so much hope and peace of mind. I thank you for your help. I will keep you in my prayers. It's unfortunate that this disease exists but it's a blessing to have such a warm and understanding community that is willing not only to help but to fight it together as it takes us through emotional and physical rollercoasters.

thats brilliant.All the best.

liz

Hello little sister

Please see: Scott Carlisle's improvement in speech over time after his total glossectomey (surgical removal of his tongue).

I hope you find it inspiring.

Best wishes
Vinod

Thank you for the site. Unfortunatley, in the past few months, the cancer has returned, chemo has been given and the tumor refuses to budge. He will begin experimental treatments later this month to prolong his life. This site has been a bitter sweet find but I am glad for Cookey and Ananth whose wisdom, comfort and prayers have given me a small but important peace of mind. You have a good thing here Dr. Joshi and I will keep all in my prayers.

I am so sorry to hear that sis.dont go away you will need somewhere to help you get trough what is to come,and we are all here..
love liz

Little sis, I have undergone total glossectomy on April 16 08 and now trying to adjust myself to different ways of eating and speaking. I am able to enjoy food to a certain extend. Life without tongue has not been easy because my job is teaching. My future seems bleak bcos the only people who can understand me are my family and close friends. I would like to communicate with your brother because we are in the same boat.

Thanks.

Dear Sharifah,
Hi - my name is Ananth and Little sis and I somehow shared a good rappot. I am sorry to say that her brother Brian passed away a few days ago.
However, there are many more here who will be of a lot of help to you. Repost this post as a new subject under general chat as most people go in there first.

I from my side would be pleased to be help you at and whenever required - though I am not too familar with what you have been through.

Take care,
Ananth

Hello Sharifah

Apa khabar. Dari mana di-Malaysia? You are among friends! A total glossectomy is not the end of the world. I have a patient who is more than three years post-glossectomy and managing well.

Speech is a bit slurred in the beginning and gets better with practice but is never 100% and you will need to speak slower and might have to repeat yourself until your friends get used to your new pronunciation!

Swallowing might be difficult as you no longer have a tongue to push food back into the throat to initiate the swallow. Get your dentist to construct for you a palatal augmentation prosthesis that effectively lowers the roof of the mouth closer to the tongue. If you have teeth, the plate will be held in with wire clasps It also helps improve speech. Here is an example of one for a completed denture wearer. .

You may find this chapter on Maxilloacial Prosthetic Rehabilitation useful: http://erbak.com/famona/OTOHNS/Cummings/cumm080.pdf

If you have had radiotherapy and have a dry mouth, start caring for your teeth to prevent them from rotting away owing to the lack of protection from saliva. See this post about Teeth and aftercare

Hope that helps.

Best wishes

Vinod