#61477 08-17-2007 12:52 PM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | Jim --
Work, work, work on those swallowing exercises -- the epiglottis not closing is not uncommon because it is a dependent organ -- that in, proper closing depends to a large extent on proper functioning of the many muscles and nerves that contribute to the action of swallowing. Also, the epiglottis itself may be physcially damaged (scarred) -- but still strengthening of the swallowing muscles should be a primary goal.
My husband had aspiratuion (in fact, he had an aspiration pneumonia right after treatment ended) & was given about 8 exercises to do by his therapist -- they involved suction, forced (or "hard") swallows, pushing tongue against resistance, and several others. They were supposed to be done 3-4x a day and at least 4-5 times each at each session. When he started the suction, which involved using a straw and using mouth suction to pick up bits of paper, he had to start with bits of tissue. Gradually he was able to move to a (small) post-it note, and then larger and finally, to a post-card-sized piece of paper. This took about 5-6 months and even at a year, the latter was not always easily accomplished. And he ate all the way through treatment, so he was better off than many who were not able to swallow things towards the end.
The moral of this is that it will not be quick, or easy, but it can be accomplished with lots of work. Do not be afraid to ask your therapist for help and if you are having probems as there are many exercises for specific problems, the ones I mentioned abaove are only a smapling.
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#61478 08-17-2007 02:19 PM | Joined: Aug 2007 Posts: 51 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2007 Posts: 51 | Gail I am doing Mendelson toung between teeth and swallow, Hard swallow wil tensing muscles and retracting toung as farback as possibel in mouth. Then Shaker exercises lie on back lift head to see toes and hold for 1 minuite 3 times a day.I never heard of the suction one. I would be interested in the others too. Could you provide me the therapists phone number and location I am in Chicago and these are only exercises they have mentioned to me.
Jim W. DX and treated May 1997 stage 4 tonsil cancer 40 radiation 2X daily at the same time 8 weeks IV chemo cocktail 5 types on 5 days off 2 days refuesed neck resection. 10 years clear now swallow function ceased May 07 after pneumonia.
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#61479 08-17-2007 07:03 PM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2007 Posts: 525 | Heavy, thick milkshakes are Hard to drink and need a lot of suction to evacuate the liquid. This give good exercize to the muscles and opening and closing as wided as posible is very important to do this. You just have to make it routine, as it always has been. Petey 
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method. ***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#61480 08-18-2007 12:46 PM | Joined: Aug 2007 Posts: 51 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2007 Posts: 51 | Petey in your email you mention opening and closing. Are you refering to opening and closing your mouth real wide?
Jim W. DX and treated May 1997 stage 4 tonsil cancer 40 radiation 2X daily at the same time 8 weeks IV chemo cocktail 5 types on 5 days off 2 days refuesed neck resection. 10 years clear now swallow function ceased May 07 after pneumonia.
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