| | Joined: Sep 2007 Posts: 20 Member | OP  Member
Joined: Sep 2007 Posts: 20 | I have just had a button tube put in on July 5, 2012 due to 15 bouts of Aspiration Pnumonia in the last year. I am still trying to eat small amounts of food, which I can still swallow ,that don't get stuck in my throat (mostly fatty meats). I have had difficulty with pain in my throat since my treatment was completed. As my swallowing declined, the pain in my throat increased. If I talk a lot the pain becomes unbearable. Now during the last month, I have developed a feeling of tightness/numbness on both sides and above my Adams Apple. I went to the Doctor and they scoped my throat, but did not see anything alarming. At my insistance they are doing a PET Scan this week. Just curious if anyone else has experienced this sort of tightness/numbness in their throat. It's almost like I'm being strangled and it's very uncomfortable. It feels better when I lay down and tuck my chin on my chest.
Last edited by Steven; 08-26-2012 01:59 PM. Reason: spelling
SCC Base of Tongue
Stage IV T2N2bM0
IMRTx32, Cisplatin x3
Diagnosed 1/25/07
Treatment Completed 4/20/07
Scans all good as of October,2011
| | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | Sounds an awful lot like your throat is deteriorating due to lack of use.
The doctor might have only been looking for signs of cancer so only reported lack of anything alarming in terms of a return of the tumour and completely ignored/missed any other issues that might be back there.
Whilst the doctor is reporting he/she sees no cancer ("nothing alarming"), what you are experiencing needs treatment.
What about going to a speech pathologist who is more likely to be sympathetic to your issues, can recommend a barium swallow to see what is going on and possibly able to give you exercises to strengthen your throat?
Alex, also suffers from a painful throat - esp after talking too much. Interestingly, he was advised by the speech pathologist(our angel through this entire ordeal)to talk more and was given daily throat exercises. the SP is also working with us to get him back to eating which is still not happening after over 2 years.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Yup! Good advice above. If you don't use it you lose it. 
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Steven you should get a swallow test to see what is happening when you eat. I would be surprised if you hadnt had several of these with so many bouts of pneumonia. Good luck with your scan!
ChristineSCC 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 | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I sure agree with Christine. My thraot is always tight and it is my tongue that gives me problems. Not that I can eat. I'm a tube person like some here are and am used to it after almost a year in Oct. I can swallow water if I quirt it to the back of my throat with my head tilted back. I wish you lick.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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