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Dry mouth, swallowing, choking #199952
03-17-2020 07:20 AM
03-17-2020 07:20 AM
Joined: Sep 2003
Posts: 7
East Moline
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catwoman3420 Offline OP
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catwoman3420  Offline OP
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Joined: Sep 2003
Posts: 7
East Moline
I am 16 years post treatment and very thankful for recovery. I am dealing with long term effects of radiation. Very dry mouth, difficulty swallowing and choking often -- even on water. I believe radiation has damaged nerves since I have progressive difficulty forming some words. I don't have full control as I once did of my lower lip on the side where I had the tonsil tumor. I have a crooked smile and speak more from one side of my mouth. It is much more obvious to me than others. I have another strange effect I believe may be from radiation. My neck is tight from radiation and when I look up too long, I get lightheaded. I can stop the lightheadedness by looking down for a few seconds. My question to all of you is whether anyone has experienced anything similar.

Re: Dry mouth, swallowing, choking [Re: catwoman3420] #199962
03-20-2020 12:36 PM
03-20-2020 12:36 PM
Joined: Jan 2020
Posts: 5
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JohnY Offline
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JohnY  Offline
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Joined: Jan 2020
Posts: 5
How long has it been since you finished treatment?

Re: Dry mouth, swallowing, choking [Re: JohnY] #199979
03-25-2020 08:22 AM
03-25-2020 08:22 AM
Joined: Sep 2003
Posts: 7
East Moline
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catwoman3420 Offline OP
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catwoman3420  Offline OP
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Joined: Sep 2003
Posts: 7
East Moline
I completed treatment in November 2003. My experience seems to be problems are increasing with time.

Re: Dry mouth, swallowing, choking [Re: catwoman3420] #199988
03-26-2020 08:38 AM
03-26-2020 08:38 AM
Joined: Jun 2007
Posts: 10,475
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,475
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Unfortunately theres a great many long term survivors who struggle with a wide variety of late effect issues from their OC treatments. Issues with heart, kidneys, blood pressure, thyroid, poor circulation, osteoradionecrosis, baroreceptor failure (blood pressure regulator), motor neuron disease (ALS), are a few of the more common issues long term survivors notice but theres a great many other ailments doctors attribute to OC and its treatments..

If you had a neck dissection or surgery to check lymph nodes that could be whats behind your lightheadedness and range of motion issues. Almost every person who underwent that kind of surgery has similar issues along with limited motion on the side of the surgery. Biggest noticeable issue is the arm is not able to be raised making getting dressed a daily challenge. Stiffness with limited range of motion are difficult to improve even with doing lots of PT. Ive dealt with this since 2007 and I actually feel pretty lucky to not have much else popping up besides my regular daily challenges.

As far as looks go... everybody gets older and in time will eventually lose their looks. Even the "amazing" older people we see on tv who look decades younger than they are show the effects of aging. Even the best looking people only have their good looks on a temporary basis. I forced myself to believe this while I was stuck in the hospital for my 2 month extended stay after the mandibulectomy with complications caused me to become disfigured. It was NOT easy to face the truth but I went into the hospital one person and came out another. After waking up from 3 weeks of a medically induced coma, I didnt recognize myself but luckily I had weeks before I was well enough to go home and able to tell myself over and over.... looks fade, everybody ages and doesnt look the same as they get older. Im willing to bet, your crooked smile is not even close to what you think it is. We are ALL our own worst enemies and are the hardest on ourselves. Remember everyone is different and has their own quirks.

Best wishes with everything you are currently going thru!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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