Author Topic: My tongue feels weird  (Read 10178 times)

ombrerose4

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My tongue feels weird
« on: March 16, 2011, 06:06:27 pm »
 I am now 18 months post op and the last two weeks the left side of my tongue has been feeling weird. Originally before I was diagnosed, what brought me to the doctor was a burning, numbness of the left side of my tongue. The first few months after surgery I remember everything tasting strange on that side of the tongue, especially salty foods. It went away after 4-5 months and has been fine until recently. I'm trying to figure out how to describe it- it's kinda like a hot, tingly, raw sensation. I guess I'm going to have to go back to my neurotologist, but I was wondering if anyone else has experienced something like this this far post op? I haven't changed any meds or started anything new ??? ??? Any thoughts? :-\
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

Angie UK

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Re: My tongue feels weird
« Reply #1 on: March 17, 2011, 06:31:30 am »
Hi there!  I'm from the UK, and part of the BANA forum, for British sufferers.  I havent had my op yet (another story!!) but I have regularly seen posts on BANA from folks who are post op & suffer these kinds of issues.  I believe it has something to do with damage to the facial nerve, as this supplies sensations & some taste buds to the tongue.  People seem to go for months without any problems, then bam! Suddenly they have burning, soreness, salty tasting sweet & vice versa etc. 

I have had these sensations too, even before the op, my tongue & the inside of my lips was red raw & it was really painful to smile!  I looked like I was baring my teeth rather than smiling, but it didnt last too long, (about a week if memory serves me correctly - & that's another challenge too - memory! Hah!) 

Anyway, I'm no doctor, & simply recounting the previous experiences of others I've seen, but it seems to me that even when the "squatter" is evicted, it still leaves its mark...

Keep smiling  xx

wendysig

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Re: My tongue feels weird
« Reply #2 on: March 18, 2011, 07:55:26 am »
Hi Lauren,

Sorry to hear you are having new problems after all this time.  My first thought was a facial nerve issue, so I agree with Angie.  It's good to know that you plan to check it it out with Dr. Choe.  I can give you his e-mail address if you'd like -- he might be able to give you his opinion quicker, and if necessary, get you in to see him more quickly too.  Let me know.

Hugs,

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

ombrerose4

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Re: My tongue feels weird
« Reply #3 on: March 18, 2011, 12:57:42 pm »
Hi Wendy,

Hope all is good with you. I would really appreciate getting Dr. Choe's email address- that would make it easier, thanks. You can send me a PM or I think you have my email address. I hope you will try to join me at our meeting at NYU on 3/26. It would be great to see you:)
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

Mark241

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Re: My tongue feels weird
« Reply #4 on: March 18, 2011, 01:02:22 pm »
I'm 5 yrs post-op, and every once in awhile the right side of my tongue will feel feel strange, then go away, the same as the side of my face. I never really gave it much thought since it comes and goes, and doesn't' get worse.

Mark
4cm C1  16hrs                 Barrows, Jan 06      NF2
3.5 cm  Right AN retro       Barrows, Oct 06   
Cranial Plate removal           UNM Nov 07
LP                                   Barrows  Jan,2011
Wound revision                 Barrows Feb, 2011
5mm left middle Fossa,  (2) 2mm spine w&w

wendysig

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Re: My tongue feels weird
« Reply #5 on: March 18, 2011, 04:23:39 pm »
Hi Lauren,

I e-mailed Dr. Choe's e-mail address to you.  I hope this problem turns out to be a minor glitch that is quickly resolved.  Please let us know what Dr. Choe h as to say and how things are going for you.

Best wishes,

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

sterry

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Re: My tongue feels weird
« Reply #6 on: March 18, 2011, 10:13:17 pm »
Yeah, another weird tongue person, mine is always salty!!  It feels like it seeps salt all day long. I don't have to salt anything. It is very annoying.  I can  only figure that is some sort of nerve damage. I have no facial problems. I'm about 17 months post-op from a translab  when I wake up in the morning my mouth feels pretty normal, but as soon as I drink something, even water, the salt taste begins, at first I thought it was coffee causing it, but it is not.  On most days by the end of the day I ready to cut it out, but if I go to sleep, it settles down. I told my husband after surgery that I had a tongue trans plant because it shorter and thicker than before surgery:)  It is on the left side like surgery.  I've tried quite of few things to make it "better", today I put some baby oragel on it and it help with some pain,but not the salt.  I'm pretty sure it has been the reason I've lost 25 pounds which is not a bad side effect.  But I will watch for your next post to see what you learn.  I guess since I've had it so long, I figure it is not going away anytime soon.

Susie
Left AN 3.7 cm. 10-23-09 
HEI Dr. Friedman, Dr. Schwartz
Translab
Doing well

ombrerose4

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Re: My tongue feels weird
« Reply #7 on: March 25, 2011, 12:34:48 pm »
Just want to report on my Dr's explanation for my weird tongue sensations. Here is what he said " The "irritation" on your tongue is from the nervus intermedius, which is one of the nerves in the internal auditory canal.  You would not see anything on your tongue -- this is all occurring at the level of the IAC.  It is not uncommon to get some sporadic irritation of that nerve after surgery, even this far out.  Should go away in a few weeks."  It sounds logical, just another one of those wonderful, always cropping up,  AN side efects. As to what causes the "sporadic irritation" , who knows :-\
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

kmancini

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Re: My tongue feels weird
« Reply #8 on: March 25, 2011, 01:12:04 pm »
I have had the weird sensation and salty taste from day 1 after the surgery.  That was 3 years ago.  Some days are worse than others.  I wish it would go away.  I tried different vitamins but nothing.  I have no facial damage.  So I am thankful for that.  I will gladly have the tongue thing going on.
An surgery 4-8-08
lumbar drain 4-22-08
csf leak repair 5-30-08 7-11-08 10-6 -08and 10-24-08
BAHA on 10-24-08
university hosp in Cleveland
Dr Megarian and Dr Selman

sues1953

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Re: My tongue feels weird
« Reply #9 on: May 04, 2011, 09:23:05 am »
It's been a long time since I have posted mostly because I just want to forget ond move on.  My tongue and Tinnitis issues have gotten worse.  I figured I could get some information here, I have gotten so much support in the past.  My tongue feeling weird is the first symptom I had with my AN and was lucky enough to be diagnosed very quickly.  It's been almost a year since I had my Translab surgery and at first my tongue was the same as pre opp.  Now it is much worse, just as you describe, burny, painful, it's awful.  Some days are better than other days and I can't figure out why that is.  If it is somthing I can control, I would do anything.  It is better when I have brushed and swished my mouth with listerine and eat nothing.

I have been unable to have an MRI due to the fact that I have been unble to pay the deductable on my last 2 pre opp MRI's.  I do wonder if since my tongue was the first symptom I had if it could mean the tumor is growing.  Anyone have any thoughts on this?????

Sue
3.2 cm AN Right side diagnosed 12/4/09
Translab surgery May 2010 with Dr. Jack Kartush and Daniel Pieper at Michigan Ear Institute.
Successful surgery .5mm left on facial nerve.  Full facial movement. SSD, Tinnitis, tongue and lip numbness.  No headaches.  Back to living life.

ombrerose4

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Re: My tongue feels weird
« Reply #10 on: May 04, 2011, 10:35:42 am »
Hi Sue,

When I was diagnosed my only symptom was my tongue, just like you. When I was first post op it was feeling strange, but by 2-3 months it felt normal again. Then a few months ago it started with that same weird burning, irritated feeling with some strange tastes. I spoke to my neurotologist who felt it was just an irritation from the nerves and said it may be and on and off symptom that may or may not go away. My GP wanted to be sure there was nothing going on so he sent me for a MRI and thankfully it was clear. I have days where it doesn't bother me at all, days when it starts bothering me after I eat something and then gets worse as the day goes on. Sometimes by bedtime I am ready to rip my tongue out :'(   I think certain foods make it worse but I haven't been diligent enough to track it down. I guess it is just another reminder of the whole AN journey :)
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

Jim Scott

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Re: My tongue feels weird
« Reply #11 on: May 04, 2011, 01:50:47 pm »
Lauren ~

I'm not a doctor but I believe your neurotologist was correct.  The 7th facial nerve includes a branch ('chorda tympani) that affects most of the taste sensations we receive through our tongue.  When the nerve is disturbed (AN growth, surgery) it will normally react and for some AN patients, tongue/taste issues arise.  I have a small 'numb' spot on the side of my tongue that never went away.  Although I'm always aware of it, it is not painful, doesn't affect my sense of taste and so, is not a problem , but, as you characterized it, a reminder.   

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.

kenneth_k

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Re: My tongue feels weird
« Reply #12 on: May 05, 2011, 01:20:54 am »
Ditto on the tongue thing. Annoying - but manageable most of the times :P

Wanda

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Re: My tongue feels weird
« Reply #13 on: August 16, 2011, 10:28:23 am »
I've just had the second radio knife procedure and in the last year my tongue is weird. It feels burned and hard foods really irritate it. Taste is not good, my husband tells me when food are hot so as I don't burn my tongue. I've fallen in love with old fashion ice pops. Have one before I go to bed to numb the tongue so as to fall asleep . Does anyone out there have this issue.