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#195960 - 03/27/18 05:51 AM Strange aftertaste since lingual tonsillectomy  
Joined: Mar 2018
Posts: 42
CM57 Offline
Contributing Member (25+ posts)
CM57  Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 42
I have had the usual problems with the heavy mucous since the TORS lingual tonsillectomy March 23rd.
I think the mucous is thinning out, I have been rinsing often. But I have two main issues, sleeping, and this odd aftertaste in my mouth. It seems like the taste is getting stronger and stronger. It kind of reminds me as if I was getting sick from too much chocolate or coffee.
Yet, I only had one chocolate shake, and one coffee, both a couple of days ago.
Could this be acid reflux, and the medication I am tasting?
Right now, I am just staggering Ibuprofen and Acetaminophen. For the first few days, I took Oxycodone, but I stopped using it, thinking that was the strange taste.
Also, I am like a saliva fountain, it feels like I produce more saliva, then fluid that I take in. So this has kept me from sleeping much, I keep a spittone bucket, and tissues right on the floor next to the bed, so I don't have to get up multiple times.
But just now was the worst, I actually got to bed for a full hour, but woke up with all the saliva, and that weird aftertaste, stronger then ever. It really freaked me out. I am fine now, I'm just in the living room sitting up.
It never seems bad if I sit up, or even better if I walk around.
Does anyone have an idea if this is normal? Is it the tissue healing? Is is reflux? Something other?
Thanks for any insights. It is now just a tad over 3 1/2 days since the surgery.


Enlarged left cervical lymph node in neck on 1/9/18. Male, age 60. Had retired from working as a computer technician and a project manager for almost 38 years, on 7/1/17.
Node was removed 1/16/18 and found to have SCC P16.
Chest xray clean.
Since then, PET/CT, slight activity left parotid, possible malignancy left lingual tonsil. MRI clean.
3 endoscopies, nothing seen.
2/26/18 Larryngoscopy,primary not found.
TORS 3/23/18 lingual tonsil biopsy.,biopsy negative.
Chemo/rads started 4/18/18.
#195965 - 03/27/18 01:44 PM Re: Strange aftertaste since lingual tonsillectomy [Re: CM57]  
Joined: Jun 2007
Posts: 10,035
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,035
PA
Im so sorry you are going thru this!!! You must be absolutely miserable and exhausted. Your side effects are not something Ive experienced after any of my surgeries. Since it came on out of the blue after your surgery I'd say its related. I would definitely call your doc and get checked. Im surprised you were sent home so quickly after your surgery! TORS surgery patients usually fare better than someone with a regular surgery. Ive read about super fast recoveries and less side effects with TORS. I hope your quick release wasnt due to an insurance company rushing you out the door and that it was due to your own speedy recovery after surgery.

The mucous actually sounds like what Ive had after finishing rads. The first few weeks post rads were horrendous (for me, not everyone)!!! The thick gunky mucous was so hard to get out of my mouth. A portable suction machine works wonders!!! Ask your doc to write you a prescription to get one from a medical supply company. When you see your doc, they should easily be able to see what you are talking about in the back of your throat. ENTs offices always have a suction machine so get the nurse to use it to get rid of your extra mucous.

As far as the funky taste goes... it must be related to the surgery too. Ive only had one person over the years have serious problems with their taste and that was after rads. During rads our sense of taste is affected, for some it takes a very long time to adjust back to normal. Whatever was done during your surgery it seems to me your salivary glands were affected and are now working overtime. Yes, it could be something to do with reflux. I just think all of this just starting means its an after effect from the surgery. All the poking around looking for the primary could have everything swollen and temporarily not working properly. Of course this is just my UN-educated guess. See your doc and hopefully they will have some answers as to what happened to cause this and how long it will continue.

I suggest sleeping propped up on at least 3 pillows, if possible raise the head of your bed or sleep in a recliner if you have one. After everything I went thru during my 3 rounds of OC, my sinuses are permanently damaged so its like I have a head cold 24/7. Im not sick and Ive adapted to this so it barely is an issue anymore. I take childrens liquid benedryl to help with the post nasal drip. Ask your doc if this would help with your mucous. Dairy products make sinuses and mucous worse so try to temporarily avoid anything dairy. Cream in your coffee shouldnt be a big deal but a milkshake or sitting down to a bowl of ice cream definitely will make things worse. Maybe a humidifier would help? All these suggestions check with your doc and see what they think if it would help you.

Please let us know how you make out and what the doc suggests to help your issues. Hang in there!!!


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
#195971 - 03/27/18 04:37 PM Re: Strange aftertaste since lingual tonsillectomy [Re: CM57]  
Joined: Mar 2018
Posts: 42
CM57 Offline
Contributing Member (25+ posts)
CM57  Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 42
Thanks Christine.
I'm not really sure why I didn't stay overnight, I was planning to. Actually, I thought it could be up to three nights. And I don't think it was the insurance.
As far as the aftertaste, this may sound somewhat speculative, but I think whatever is in my bloodstream at the time, is somewhat being perceived as a taste in my mouth.
Either coming from the mucus, or maybe just some slight seepage at the surgical site. So I am tasting the food and medicine somewhat.
I just got nervous last night when I woke up, and felt like it was something more then the mucus.
The big issue now is the sleep, I'm groggy, I didn't want to drive to the store, so I just used Tussin expectorant that I had on hand, and set up a humidifier. The house is extremely dry now.
And I will definitely try the pillows, I tried two, but I think I was leaning backwards too much. I need to be perfectly vertical. I thought I was turning the corner yesterday, but I guess some setbacks today.
I may hear from my doctor, I am awaiting a call back from his office on my followup visit. Biopsy results are probably Thursday.


Enlarged left cervical lymph node in neck on 1/9/18. Male, age 60. Had retired from working as a computer technician and a project manager for almost 38 years, on 7/1/17.
Node was removed 1/16/18 and found to have SCC P16.
Chest xray clean.
Since then, PET/CT, slight activity left parotid, possible malignancy left lingual tonsil. MRI clean.
3 endoscopies, nothing seen.
2/26/18 Larryngoscopy,primary not found.
TORS 3/23/18 lingual tonsil biopsy.,biopsy negative.
Chemo/rads started 4/18/18.
#195980 - 03/28/18 01:47 AM Re: Strange aftertaste since lingual tonsillectomy [Re: CM57]  
Joined: Mar 2018
Posts: 42
CM57 Offline
Contributing Member (25+ posts)
CM57  Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 42
I spoke with my surgeon before, he said my symptoms are normal, everything can take up to two weeks to heal.
He said to use a salt rinse for the mucous. So I'll stick with the formula we use here, it works well.
But, the other reason he called, my lingual tonsil was negative for cancer.
So my next medical visit will be back with the Radiation Oncologist. I will probably have 33 weeks of rads with chemo, once this surgery heals. I'm guessing April 16th.


Enlarged left cervical lymph node in neck on 1/9/18. Male, age 60. Had retired from working as a computer technician and a project manager for almost 38 years, on 7/1/17.
Node was removed 1/16/18 and found to have SCC P16.
Chest xray clean.
Since then, PET/CT, slight activity left parotid, possible malignancy left lingual tonsil. MRI clean.
3 endoscopies, nothing seen.
2/26/18 Larryngoscopy,primary not found.
TORS 3/23/18 lingual tonsil biopsy.,biopsy negative.
Chemo/rads started 4/18/18.
#195987 - 03/28/18 11:45 AM Re: Strange aftertaste since lingual tonsillectomy [Re: CM57]  
Joined: Jun 2007
Posts: 10,035
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,035
PA
I think you meant you'll have 33 radiation treatments, not 33 weeks of rads. Most of us have had 30-40 treatments.


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
#196010 - 03/30/18 06:34 PM Re: Strange aftertaste since lingual tonsillectomy [Re: CM57]  
Joined: Mar 2018
Posts: 42
CM57 Offline
Contributing Member (25+ posts)
CM57  Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 42
Yes Christine, 33 days.
I keep saying weeks. Ugh!
33 days sounds so much better.


Enlarged left cervical lymph node in neck on 1/9/18. Male, age 60. Had retired from working as a computer technician and a project manager for almost 38 years, on 7/1/17.
Node was removed 1/16/18 and found to have SCC P16.
Chest xray clean.
Since then, PET/CT, slight activity left parotid, possible malignancy left lingual tonsil. MRI clean.
3 endoscopies, nothing seen.
2/26/18 Larryngoscopy,primary not found.
TORS 3/23/18 lingual tonsil biopsy.,biopsy negative.
Chemo/rads started 4/18/18.
#196175 - 04/18/18 09:53 AM Re: Strange aftertaste since lingual tonsillectomy [Re: CM57]  
Joined: Apr 2018
Posts: 4
spede Offline
Member
spede  Offline
Member

Joined: Apr 2018
Posts: 4
I went through something similar. During and after the treatment I had a lot of candida-like problems. I tried salt and whatnot.

Then I tried eating (live) yoghurt, that helped a day or so.
After a while I gurgled(!) with sauerkraut, that helped me! when I was able to chew and swallow I continued eating sauerkraut, which I believe did the trick.
Probably the Chemo had killed all good and bad gut bacteria, sauerkraut built good bacteria again. At least that is my theory. Mind you, it has to be proper sauerkraut, not made with vinegar or similar.


Peter

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