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#126089 12-12-2010 06:32 AM
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My husband, Randy was diagnosed with squamous cell carcinoma on this tongue in February. They removed the half (right) of his tongue in March and had 35 radiation treatments (ended mid July), his tumor was 6cm and contained.

He was hospitalized last Sunday as he could not keep down any food and had severe pain in his jaw and ear. They completed a swallowing test and during it they found that his epiglottis is not working, all liquids are going directly into this lungs. He is scheduled to have a feeding tube put in tomorrow. Our family doctor said he should be able to eat again with therapy.

I have two questions:

1. Has anyone had an issue with the epiglottis not moving and if so where you able to swallow food again?

2. My company is going to send him for a second opinion in the US. In your opinion, if you have a choice, which hospital would you go to?

Thank you,

Tammy

Tammy4Randy #126090 12-12-2010 06:52 AM
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Hi Tammy - I'm so glad you found this site, - you will find lots of information and many who have had similar experiences to that of your husband. Until someone with more direct experience with the epiglottis gets to you, perhaps you could check this list of recommended U.S. hospitals:

http://health.usnews.com/best-hospitals/rankings/cancer

Wishing you and Randy all the best in his recovery. Please keep in touch and let us know how you both are doing.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Anne-Marie #126139 12-12-2010 08:55 PM
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There is much more to aspiration than the epiglottis itself. I have silent aspiration, and routinely in barium swallow studies liquids end up in my lungs (not 100% but enough to cause problems). I do not have a problem with solids.

I do get aspiration pneumonia regularly when I am sick in bed with the flu or anything that prevents me from standing regularly. My body seems to eliminate most of the water etc. that gets in there, unless I am in a supine position for days.

The inability to close off the trachea completely after these treatments is common, and multifaceted. The nerves that control many of the muscles of the swallowing mechanism are permanently damaged by radiation, and this is very variable from patient to patient depending on the type of radiation, quantity of it, and location it was delivered to.

As to the epiglottis not moving, that could be the case from nerve damage, but in my case it was completely destroyed, shrunk to a tiny nub by the radiation treatments, so I have none at all. This speaks to it only being one facet of the problem. I manage through a learned process of consciously holding my breath when I drink or swallow to close the opening to the trachea. For me this is a learned ability, but in most people happens naturally because the have good sensory proprioception in the back of their mouth and throat, and their body/subconcious reflexes know they are swallowing, and it is time to close the door.

This page of the OCF web site

http://oralcancerfoundation.org/dental/e_s_issues.html

speaks to some of this though it is not about aspiration entirely.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #126203 12-14-2010 03:39 PM
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I can recommend the hospital and surgeon who took care of me. He is outstanding and has a lot of experience in head and neck cancer including tongue cancer. This is Dr mark Urken at Beth Israel in NY NY.
I Brook MD

dribrook #126414 12-17-2010 09:12 PM
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Thank you for the information. The links were very helpful.

Tammy

Tammy4Randy #126618 12-21-2010 07:17 PM
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I recommend my husband's surgeon, Dr. Gregory Weinstein, at the Hospital of the University of Pennsylvania in Philadelphia.

Best of luck to you!
Anita


Last edited by AnitaFrances; 12-21-2010 07:17 PM.

Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections

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