Author Topic: bad taste  (Read 4902 times)

nanlt124

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bad taste
« on: October 27, 2010, 10:23:54 am »
hi to all    i am 4 wks post op and doing fine    my issue concerns my throat     i can feel something way back in my throat - like something is stuck and i know it is not     whenever i swallow i can feel it and it is really annoying   the other issue is that nothing tastes like it should    i can smell food and taste it when i first put it in my mouth but, when it hits my throat it loses flavor and i can't explain what it becomes   all i know is that i have had nothing that satisfies me since surgery and i hope that it is temporary   it is such a disappointment to have a good meal and have to turn it away     my son has been my caregiver and he has run out of ideas for what to feed me      thanx    i do realize how lucky i am that this is the worst of my recovery problems    it is just annoying and frustrating      nancy from clearwater

Jim Scott

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Re: bad taste
« Reply #1 on: October 27, 2010, 03:16:02 pm »
Hi, Nancy ~

I'm pleased that your recovery is going well but I'm sorry to learn of your taste issues.  This is most likely associated with the 'trigeminal' nerves, specifically the 7th cranial nerve - that affects the sense of taste.  This will likely resolve by itself but until it does, it's certainly going to be frustrating.  Oddly enough, I experienced a severe loss of taste prior to my AN diagnosis and subsequent debulking surgery followed by FSR (both quite successful).  As my appetite decreased due to everything tasting like cardboard (to me), my stomach literally shrunk, and I felt 'full' with only a few bites - of anything.  I lost close to 35 pounds over a six-month period and although that brought me down to my ideal weight (which I've maintained), it also alarmed my wife and her concern motivated me to see my PCP who ordered an MRI and the rest, as they say is history.  I  jokingly called it 'my AN diet'.   Fortunately, my appetite returned within a few days of my debulking surgery and I've changed my eating habits so I can maintain my proper weight.

I'm not a doctor and cannot offer you a 'medical' opinion but I suspect that post-op swelling has affected the 7th cranial nerve, affecting your sense of taste.  As I stated, I believe that will eventually resolve on it's own but if not, you'll probably want to speak to your doctor to seek his advice.  Again, congratulations on your successful surgery and continuing recovery.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Funnydream

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Re: bad taste
« Reply #2 on: October 27, 2010, 06:43:07 pm »
I'm a bit over 4 weeks and have the same issue.

Cokes and milk chocolate ice cream don't taste the same at all. As do tons of other foods.

What is working fine. Seedless grapes, apples, eggs, milk, salty nuts, water, apricots, watermelon, oatmeal, pancakes, vanilla ice cream (not as sharp taste as before), sprite, and I'm sure there is more. But not coming to mind.

I find it annoying. Because milk chocolate ice cream was my favorite. And vanilla ice cream is it right now.

Hope this helps. I'm sorry your going threw this taste nightmare too.
« Last Edit: October 28, 2010, 07:53:19 pm by Funnydream »
Age 42, AN left, 2.8cm
left hearing gone, balance getting better.
16 hour Surgery 9-27-10 CSF leak fix 10-4-10 3 hours
Miracle I feel my left face and tongue again.
If we evolved from monkeys into humans? When do we stop being human and become something else? What would that something else be?

Tod

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Re: bad taste
« Reply #3 on: October 27, 2010, 07:59:23 pm »
Nancy, I'm 10 months post and my experience was somewhat extreme, so take what I say as something of worst case. I'm not a doctor, I'm a patient like you, but I can suggest that the feeling something may be caught in the back of throat may be a result of nerve trauma or swelling around the nerves resulting in problems with your autonomic swallowing. The way I understand my situation is that the smooth muscles involved in pharyngeal and esophageal swallowing are not working much at all for me. So what happens is that the normal "flow" of mucous protecting these passages just kinds of stops and I have to spit or cough it out.

Possibly, you have a lesser version of this and the mucous just kinds sticks noticeably. Again, I am not a doctor, but this what I understand to be my situation, which does seem to be improving a bit.

As for taste, I could taste very little the first weeks post. Salty and savory tastes came back in just a couple of weeks. Unfortunately, I can taste precious little in the way of sugars. Tonight I was ate a small Butterfinger and could at least taste that it was in fact a Butterfinger. That was a small slice of heaven....I still can't taste a Snickers bar.

This past weekend I made barbecue. I was so busy cooking and multi-tasking, I forgot about my taste limitations altogether. When we sat down to eat, my wife told me it was almost to sweet to eat. On a scale of 0 - bland  to 10 - a spoonful of raw sugar, she said it was a 7.

I echo Jim's advice and suggest you talk to your doctor about it. Fortunately, these things seem to pass. At least I hope so....I miss chocolate.

I hope this helps,

Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

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leapyrtwins

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Re: bad taste
« Reply #4 on: October 27, 2010, 08:16:34 pm »
I had "metallic" mouth - where certain foods didn't taste the same - for many months post op.  It eventually went away.

At the time, someone suggested I start taking zinc.  Apparently some have had success with it - and it really can't harm you - so you might want to try it.

Just a thought,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

nanlt124

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Re: bad taste
« Reply #5 on: October 27, 2010, 09:07:45 pm »
again, thanks for everyone's input   this is really frustrating    everything i have tried has been awful    i see dr danner next friday so, if no better, i will bug him about it     i have done so well that i am greedy and want all of this to go away     i will try to be patient and think of it as a diet also       will let you know if i find out anything new       nancy from clearwater

moe

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Re: bad taste
« Reply #6 on: October 27, 2010, 11:48:31 pm »
Yes,
Keep the patience. You are still pretty fresh post op. As long as you are drinking lots of fluids, and maybe some nutritional drinks just to keep the calories in, just eating what you "think" may sound good is the best you can do, I guess.
I had the weird bitter taste which would just happen suddenly,  and it subsided within a year.
The seventh cranial nerve is the facial nerve, which does control those tastes. My facial nerve was totally squashed and had to be resected, yet I could still taste foods post op. Weird.
(The 5th cranial nerve is the trigeminal nerve-sorry Jim :-\ , felt the need to correct that!)
Hope the swallowing thing is nothing to be alarmed about. Let us know. :) Glad to hear your recovery is doing so well, otherwise!
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Funnydream

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Re: bad taste
« Reply #7 on: October 28, 2010, 07:56:30 pm »
I had "metallic" mouth - where certain foods didn't taste the same - for many months post op.  It eventually went away.

At the time, someone suggested I start taking zinc.  Apparently some have had success with it - and it really can't harm you - so you might want to try it.

Just a thought,

Jan

Jan,

       Do you remember how many months it took for you to clear up? I been testing. And it seams more like its the sweet buds are out. Anything with sugar. Can't taste the surgar.
Age 42, AN left, 2.8cm
left hearing gone, balance getting better.
16 hour Surgery 9-27-10 CSF leak fix 10-4-10 3 hours
Miracle I feel my left face and tongue again.
If we evolved from monkeys into humans? When do we stop being human and become something else? What would that something else be?

Funnydream

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Re: bad taste
« Reply #8 on: October 29, 2010, 05:51:29 pm »
After doing some web searches.

Looks like its something that is very common after any kind of surgery. Anything with sugar will not taste the same. Even honey.

I didn't find any post about it being permanent.

I'm trying to narrow it down. Anastasia, antibiotics, etc? I just can't find any exact information on the subject.

Looks like I found a good link on the transplant forums about taste.
http://www.transplantbuddies.org/tbx/messages/5/128505.html?1265398289
« Last Edit: October 29, 2010, 06:38:03 pm by Funnydream »
Age 42, AN left, 2.8cm
left hearing gone, balance getting better.
16 hour Surgery 9-27-10 CSF leak fix 10-4-10 3 hours
Miracle I feel my left face and tongue again.
If we evolved from monkeys into humans? When do we stop being human and become something else? What would that something else be?

leapyrtwins

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Re: bad taste
« Reply #9 on: October 30, 2010, 08:38:58 am »
Funny -

I had my metallic mouth for about 6 or 7 months post op.  It went away about the time I started to take zinc, which truthfully may have just been a coincidence; I'll never know.

As far as anesthesia goes, it's not generally known to cause side-effects related to taste.  Anesthesia is definitely one of the things related to fatigue post op.  Generally the longer you're "under" the longer the fatigue lasts.  I heard this from my doc, as well as from many people I worked with at the time (CRNAs - Certified Registered Nurse Anesthetists - who put people to sleep for a living).

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways