Author Topic: taste  (Read 3369 times)

stevecms

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taste
« on: November 28, 2009, 05:23:23 am »
Hi,12 weeks on this taste does not want to go away.No food tastes the same and eating mints by the bagfull.This metallic taste seens to make the mouth so dry it makes me cough.Do you ever get used to one sided hearing,fed up. :(
4 cm acc neuroma 99.9% removed queen elizabeth hospital 6 sept 09 by dr walsh.thought it was trigeminal neuralga,lots of facial pain for 18mths,now deaf on rh side little taste and ear pressure.13 hour surgery.

Shekhar

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Re: taste
« Reply #1 on: November 28, 2009, 05:28:24 am »
Hi Steve,

The taste does go away but it takes a lot of time, maybe upto an year.... and yes, we all get used to one sided hearing, again does take time getting used to but even longer, depends on each individual.

I had a GK in Aug 2005 and its only now that I have got used to the hearing part but the awful taste in my mouth has gone.

Do not worry, everything will be fine, just keep smiling and keep your chin up.

Best
Shekhar

leapyrtwins

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Re: taste
« Reply #2 on: November 28, 2009, 09:11:51 am »
Steve -

by all indications the metallic taste should go away, but it's hard to say when.  I think mine lasted about 6 months; however, everyone is different.  I was told that zinc helps it go away so I took it.  I can't say for sure though whether mine went away because of the zinc, or if it would have gone away without it.  It's definitely worth a try though.

Some patients adjust to being SSD; some don't.  I was one who didn't.  It annoyed, frustrated, and depressed me.  I opted for a BAHA (bone-anchored hearing aid) which has worked extremely well for me.  The BAHA isn't for everyone but those of us who have one generally love it.  You should ask your doctor about trying the BAHA; there is a demo. 

If you aren't interested in the BAHA, the TransEar is another possibility for those who are SSD.  Like BAHA wearers, those who have the TransEar generally love them.

There are numerous posts on the forum about BAHAs and TransEars; just search.

Good luck,

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

Jim Scott

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Re: taste
« Reply #3 on: November 28, 2009, 01:15:04 pm »
Hi, Steve ~

On the off chance that you needed a third opinion on your questions about taste and SSD, I'll offer mine.  

Many AN post-op surgical patients experience the 'metallic taste' phenomenon.  As prior posts indicate, this usually abates and disappears in time.  How much time is impossible to state, even for a doctor.  It's a matter of nerves 'coming back' and that can happen relatively quickly for some, slowly for others.  The good news is that the metallic taste usually does go away.

Getting used to hearing out of one ear is problematic for many.  My hearing slowly disappeared over a few years, allowing me to adjust gradually. Those losing relatively good hearing basically 'overnight' often have a much harder time with adjusting to the condition.  As Jan mentioned in her post, there are BAHA (Bone Anchored Hearing Aids) available that can alleviate the problem for the most part.  They are pricey and require a minor surgical (out-patient) procedure but the vast majority of BAHA users (like Jan) are delighted with their unit and find them invaluable.  

Unfortunately, acoustic neuroma surgical recovery requires patience - and we don't all react the same.  I hope your taste issue resolves quickly and you can adjust to being SSD or obtain a BAHA unit that can help you better deal with your hearing loss.  

Jim
« Last Edit: November 28, 2009, 02:14:17 pm by Jim Scott »
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.

stevecms

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Re: taste
« Reply #4 on: November 28, 2009, 02:10:16 pm »
Thank you all for your kind words of support.Its nice to know you guys are there to sound off to.You dont feel so alone. :)
4 cm acc neuroma 99.9% removed queen elizabeth hospital 6 sept 09 by dr walsh.thought it was trigeminal neuralga,lots of facial pain for 18mths,now deaf on rh side little taste and ear pressure.13 hour surgery.

leapyrtwins

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Re: taste
« Reply #5 on: November 28, 2009, 02:19:39 pm »
They are pricey and require a minor surgical (out-patient) procedure but the vast majority of BAHA users (like Jan) are delighted with their unit and find them invaluable.  

Jim is correct, my Divino (BAHA processor) cost about $4,000 but oftentimes BAHAs are covered by insurance - unlike conventional hearing aids.  In my case, my insurance company paid for the entire cost of both the implant surgery and the Divino.

The surgical procedure is nothing like AN surgery.  It's outpatient and generally lasts about 90 minutes from start to finish.  Most docs give you the choice of local or general anesthesia.  In addition, recovery post BAHA implant isn't like post AN recovery.  Most heal very quickly and with few, if any, problems.

If you'd like to know more about the BAHA, just ask.

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

Palace

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Re: taste
« Reply #6 on: November 28, 2009, 07:41:16 pm »
Stevecms:


I went through about a year of the foods, lipstick and liquids tasting of metal flavor.  It's not the greatest on a holiday either with no reprieve.

This is funny; at first I thought my makeup was bad and maybe too old.  I through the lipsticks away and they cost good monies.  I learned the cause, later on after diagnosis, etc.

We AN people are sometimes forced to avoid crowds and loud places.  We can't understand what people are saying part of the time.  It's an adjustment we all have to deal with.

We are here for your support.  You'll be at this resting-place that some of us older AN people settled into.  I see you giving the advice in months to come.

I wish you luck.  I can't swallow right from the tube being down me two weeks at the hospital, just recently.  (Meningitis and Mastoiditis)  So, I don't know if the tube could permanantly damage me but, foods and saliva go down the wrong way.  My throat hurts and I lost my voice!  (back to the ENT yet, again)

Hang in there and I told you all this so you know as you said, "We're here and you're not alone."



Holiday support,



Palace
« Last Edit: November 28, 2009, 07:46:25 pm by Palace »
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

Denise S

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Re: taste
« Reply #7 on: November 28, 2009, 07:55:24 pm »
I am learning Jim  Nailed it on the head:  surgical recovery takes patience    AND man I am I learning that the hard way!!!!!!     I've also noticed I do actually feel less presssure, etc. when I pretty much don't do anything.   A walk is fine, but taking my time.   

W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI