Author Topic: an unusual symptom  (Read 5616 times)

beancounter

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an unusual symptom
« on: November 02, 2007, 11:37:19 am »
My MRI saga began with a trip to an ENT due to suddenly losing my ability to taste.  I have yet to read anywhere that loss of taste was a reported symptom of AN, and am wondering if any of my friends in ANville experienced a loss of, or a blunted sense of taste as an initial symptom.  Thanks, God bless and have a great weekend.   
Newly diagnosed 3x2 mm .... waiting to see what my options are

Charlotte Lady

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Re: an unusual symptom
« Reply #1 on: November 02, 2007, 12:16:34 pm »
Beanster-
Try Wikipedia.  That's the only place I found anything about change in taste prior to surgery.  The medical sites I went to preop didn't mention anything about taste except in terms of possible post op side effects. 

Donna
1.5 cm AN removed 9/25/07.

Jim Scott

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Re: an unusual symptom
« Reply #2 on: November 02, 2007, 01:22:54 pm »
beancounter228:

For what its worth: I experienced a significant loss of 'taste' pre-surgery, so it was absolutely a symptom for me.  So much so that I lost over 30 pounds due to my diminished appetite.  Fortunately, I was a good 20 pounds overweight at the time so the loss was not a serious problem.  My loss of taste (everything tasted like cardboard) began about 8 months prior to my diagnosis. 

Apparently, if the taste fibers of the 7th nerve are affected by the AN, taste can be impacted and loss of appetite is not uncommon.  Some AN patients develop a metallic or salty taste, which is problematic.  Some only experience this alteration of taste when eating certain foods.  It often subsides, but not always.

My loss of taste was practically reversed following surgery.  My sense of taste is just about normal, today, 17 months later.  Fortunately, although I re-gained some of the lost weight, I've managed to remain at a healthy weight level (22.8 BMI) and plan to stay there.


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.

4cm in Pacific Northwest

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Re: an unusual symptom
« Reply #3 on: November 02, 2007, 01:36:22 pm »
Jim is absolutely right and has completely debunked my theory of the metal head vs fat head craniotomy fill theory. I have researched this too and it has much to do with the pressure on that nerve or swelling of post treatment (radiated or craniotomy).

I think we should start an “AN myths� thread…

Also the amount of hours in surgery you should count that many weeks in recovery is an “old wives taleâ€? ... my surgeon informs me. (I guess at 44 I am part of the old wives –   ::) smirk LOL)

The taste thing does improve however I can still not stand the taste of coffee (yet)… with the consumption I used to have gee maybe Starbucks will go bankrupt LOL

I cannot believe I have had 10 weeks with almost no caffeine since surgery…

Gee maybe that is what the post-op headache was all about LOL

Cheers,

4
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

mindyandy

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Re: an unusual symptom
« Reply #4 on: November 02, 2007, 04:06:03 pm »
I have taste disturbance. I am currently watching and waiting. I have had taste disturbance for months. Things taste like metal sometimes (depending on what I eat.) You are not alone.
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

leapyrtwins

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Re: an unusual symptom
« Reply #5 on: November 04, 2007, 12:51:11 am »
I didn't lose my ability to taste before surgery, but I did lose it post op.  My first 3 days in the hospital I couldn't eat anything - due to extreme nausea that no drugs could cure; the docs tried everything.  On day 4, I was finally able to eat but the bland diet they insisted on serving me didn't appeal to me at all.  My solution was to simply not eat, which got me a visit from the hospital nutritionist/dietician.  She told me I could have anything I wanted, but everything I asked for had no taste.  Even food from the "outside" had no taste.  On day 2, my kids brought me a Hershey bar - one of my few vices - and it sat on my tray table for the entire time I was in the hospital (6 days).

Once I got home, my taste buds were out of whack for about a month; nothing tasted good; nothing tasted "right" to me.  Little by little things started to get better, although I had a fairly regular issue with "metallic mouth".  Today, approximately 5 months after surgery, I still get a metallic taste in my mouth although I haven't been able to link it to any specific type of food; it just shows up without warning on occasion.  One thing is consistent, though.  If I eat anything with salt on it, all I taste is the salt.  I'm hoping that one of these days, I'll get past that problem.  It would be great to be able to eat popcorn and french fries again.
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

Patti

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Re: an unusual symptom
« Reply #6 on: November 04, 2007, 08:11:40 am »
I am 7 years post-op and have no taste or sensation of half of my tongue.
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

4cm in Pacific Northwest

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Re: an unusual symptom
« Reply #7 on: November 04, 2007, 08:47:37 am »
Patti, (another “4â€?   ;D)

I am incredibly curious did you have the translab (TL) or the Retrosigmoid (RS) surgery approach. With all the nerve damage I am still awaiting to resolve (granted I am only at 10 ½ weeks) and I still have paralysis in half of my tongue. Coffee and other foods with tannins still taste awful  :P . I am wondering if I made the best choice… the old TL vs. the RS debate on a 4cm tumor… will always be questioned by me… being that I deliberated over this all summer long.

4
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Boppie

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Re: an unusual symptom
« Reply #8 on: November 04, 2007, 09:01:54 am »
leapy, My tumor was 2 cm and the taste problems were persistent for one year.  I still get a numb spot flare up on my tongue once in a while, but I coax it away with chocolate and other pleasant familiar tastes.

Immediately post op I had constant tongue pain and numbness.  The taste bud variations were a constant annoyance.
I use biotene mouth moisterizing drops and this helps a lot.

leapyrtwins

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Re: an unusual symptom
« Reply #9 on: November 04, 2007, 09:05:23 am »
Boppie -

glad your taste issues only lasted 1 year - hopefully I just have 7 months to go :)

I'm using Biotene products for my dry mouth and they are helping a lot.  Maybe they're also helping my taste buds and I just didn't realize it.

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

4cm in Pacific Northwest

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Re: an unusual symptom
« Reply #10 on: November 04, 2007, 09:10:03 am »
Thanks Boppie

I had never heard of it until you just mentioned Biotene

Here is the first link I goggled AN forumers
http://www.drugstore.com/qxp15434_333181_sespider/biotene/oral_balance_dry_mouth_relief_moisturizing_gel.htm

I tell you folks -the pharmaceutical market is THE place to invest stocks. I better head to Home Depot and pick up yet another medicine cabinet for my bathroom – oy ya ya…

Off to buy more goop – only this time not for the eye or nostrils but the mouth. Does this goop purchasing business ever end? I bet all those neurotologists have stocks in the pharmaceutical companies (tease LOL)

Cheers,

4
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

yardtick

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Re: an unusual symptom
« Reply #11 on: November 04, 2007, 09:40:33 am »
This is not an unusual symptom.  I'm 14 months post op trans lab and I still get the metallic taste.  When I'm stress, very tired, or just feeling like poop, it's there.  Kinda of depressing.  I'm Hungarian and my husband is Italian and let me tell you it is all about the food.  I took that quote from my 20 yr old son;D 

Actually I never know when it's going to sneak up on me.  Sometimes I do not know how I survive, because when everything has that taste I hardly eat, but I make up for it when my taste buds  return to a some what normal state.  I find I have a tendency to really spice it up with fresh garlic, parsley and pepperincino. Thank goodness my husband and sons enjoy seasoning as much as I do. 

I drink a lot of water.  I seems to dilute the metallic taste.  I also suck a lot of mints.  Maybe that's to mask the fresh garlic :P  All kidding aside, this is a quote from my beloved mother-in-law with her broken English.  If I no enjoy my eat I finish.  Ma, I agree!!!  She's 74 and her family was the town baker back in Italy, so she can cook.  You have to be patient and experiment.  Eat what you enjoy when you can.  Drink your water. 

Okay, that my advice on this subject.  Did any of the Drs inform anyone about this?  Mine didn't.  Opp's another oversight I guess.

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Dana

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Re: an unusual symptom
« Reply #12 on: November 04, 2007, 12:00:12 pm »
Since GK in July, I've had a subtle switch in taste from preferring sweet things to preferring salty things.  Don't know if it's a result of the tumor, the tumor swelling, or the GK.  I feel very lucky to not have had any more extensive taste problems -- I come from a long line of Pennsylvania Deutsch ICE CREAM LOVERS, so this taste-preference-switch is sort of odd for me! 
Dana
1.5 cm AN diagnosed June 2007.   GammaKnife July 19, 2007 at Univ. of Washington/Harborview GK Center, Drs. Rockhill, Rostomily. 
After yearly MRIs for 5 years, it hadn't died. So I'm now leaning strongly toward surgery.

Victoriah1999

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Re: an unusual symptom
« Reply #13 on: November 05, 2007, 06:18:28 pm »
I've got the metal thing too. Mine waxes and wanes.  Last week it was HORRID.  This week I barely notice it and all I notice really is the dry mouth.  Biotene is good.

Good Luck!

Pembo

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Re: an unusual symptom
« Reply #14 on: November 07, 2007, 09:12:35 am »
bean - What I've discovered is that the docs have no idea all the strange symptoms we An'ers can have. I had IBS symptoms that all went away after surgery. My tumor was pressing on my vagus nerve, thus stomach issues. The doctor thought it had no correlation. I disagree.........
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006