Author Topic: Stupid Questions - CSF Leak / Funny Taste in Mouth  (Read 18161 times)


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Stupid Questions - CSF Leak / Funny Taste in Mouth
« on: July 03, 2007, 10:43:51 pm »
Is is a continous drip from the nostril?   Is it only the nostril on the side of the AN operation?   I'm just wondering.   

I'm so paranoid about my blowing my nose...  Since my face is numb on that side, and my sinus on that side is a little collapsed, I always feel like I need to blow my nose on that side.   I found that wearing Breathe Right nose strips help keep that nostril open and that relieves the feeling.   

My jaw, teeth and tongue are feeling better (not 100% yet), and I'm able to open my mouth more; however, I've noticed a funny taste in that side of my mouth.  It's a bitter taste...   Some days are better than others, and it comes and goes through out the day.   I went to my ENT for a status check and he said it might be a symptom from my facial nerve recovering.  I'm going to my dentist on thursday for my annual checkup, and will ask him too.   Does anyone else have a bitter taste?   On one side?   


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Re: Stupid Questions - CSF Leak / Funny Taste in Mouth
« Reply #1 on: July 04, 2007, 12:25:41 pm »

Actually many people have that metallic/salty/bitter taste on the AN side, whether you have sugery or not. I have it and I had GK.  I had it before I knew that I had an AN, now that I think about it. This was one of the symptoms I told my ENT about....I said I had a "taste" in my mouth.  He said..."Well, I don't know what that is." Which is why I am STILL a little ticked at the ENT that I had.  Anyway, do a search for any of those words..."metallic taste" and plenty should show up.

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Re: Stupid Questions - CSF Leak / Funny Taste in Mouth
« Reply #2 on: July 04, 2007, 12:51:44 pm »
Hi Oto,
   I have the metalic taste too.  My neurosurgeon said it was from the surgery (for me they had to scrape part of the tumor off the facial nerve).  Some days it is better than other - and now it is only on less than 1/2 my tongue - which is an improvement.  My Dr. said it would go away eventually.  Hang in there.
   Oh yes,  my mouth opens further toonow.    With middle fossa they cut the muscles for the jaw and it takes a while to get better.  I'm still not 100% to where I could open my mouth before but it is getting better.
P.S.  How is your hearing?  I hope you still have yours.  I did end up loosing mine after surgery even though my tumor was small . But I had lost some hearing in that ear before surgery  so my hearing nerve was already "sick" as my neursurgeon put it (and thats why I went in to check out my hearing in the first place).  I am getting more used to SSD.... but it is a process.
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !


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Re: Stupid Questions - CSF Leak / Funny Taste in Mouth
« Reply #3 on: July 04, 2007, 02:03:56 pm »
OTO, My neurosergeon said the metallic taste is a tongue "sensation" or response to healing nerves.  The dentist said "It might go away, and it might not". 

My tongue sensations and tastes straightened out around 12 months...sorry to say it took so long.

Today at 19 months out the salty taste is back, but I think it is sinus confusion too.  I am not smelling properly today, either.  Taste and smell are bound together.  You might notice that certain smells make your taste buds "off ".  Any time I have taste issues crop up, I try to get a little chocolate.  The sweet mellow taste is well known by my tongue  ;D  and this seems to get me back on track.
« Last Edit: July 04, 2007, 07:07:33 pm by Boppie »


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Re: Stupid Questions - CSF Leak / Funny Taste in Mouth
« Reply #4 on: July 04, 2007, 06:32:55 pm »
Hello Oto,

I'm still doing my research to decide between surgery and radiation, and one of the questions I asked the neurosurgeons was "were I to have surgery and deveop a csf leak, how would I be able to tell it wasn't just a runny nose?"  He answered that mucus is sticky, while csf is not.  Good to know.  He also said there's a simple test that can differentiate between csf and everyday mucus, but I didn't ask if it was available over the counter.

I have the tongue thing too, but it's hard to say whether it's more of a bitter taste or a sensation, or both.  For me, it can be a warning that a severe vertigo attack is going to happen.  Or it can linger for a day or more and make me talk a little funny.  The doctors I've mentioned this to seem surprised this is happening since my tumor is small.  I hate it when they say "that shouldn't be happening", as if I'm making it up.

Sometimes it helps to drink something really cold.  My theory is that it shocks the nerve back to normal, but it doesn't always work.
Boppie, I'm going to try the chocolate thing right now!!  (Practicing for next time my tongue gets tingly!)


15mm left side AN, diagnosed 4/25/07, radiosurgery via Trilogy 8/22/07.  Necrosis & shrinkage to 12.8mm April 2009


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Re: Stupid Questions - CSF Leak / Funny Taste in Mouth
« Reply #5 on: July 05, 2007, 03:52:21 pm »
I had a CSF leak almost 5 years post op due to blowing my nose too forceful. What had happened was I was choking on a piece of bread and for some odd reason while beginning to choke it felt like I had inhaled the piece of bread, so after getting the choking under control, I began to blow my nose many times and as I said too forceful. All was fine, went to sleep, only to be awakened by a very wet pillow. My nose was flowing like a faucet every time I bent my head ever so slightly. I could also feel it dripping down the back of my throat. Went to the doctor and it was determined to be a CSF leak. I was given antibiotics and sent home to spend the next several days lying flat on my back. The flowing stopped around day 4, but I ended up staying in bed for 3 more. It also tasted salty, I normally experience the metallic taste, but this was much different. I have been fine since, but very careful when blowing my nose.

3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
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Re: Stupid Questions - CSF Leak / Funny Taste in Mouth
« Reply #6 on: July 05, 2007, 07:53:45 pm »
I had two CSF leak surgeries and my nose never ran, my leaks came from my incision which is located behind my ear. In fact my head leaked a great deal. However, I did have some weird sinus issues for about a month or so and they eventualy went away.

Also, when I woke up from my surgery my sense of smell improved dramatically. I could smell perfume, deodorant, and other strange smells that I had not been able to smell for sometime. My sense of taste was not very good in the first few of months of my surgery but now it is about 90% back to normal. I have some numbness and dry mouth every so often but I can at least tolerate most foods and enjoy eating again, of couse food still falls out of my mouth and I have to drink a lot of fluids with each meal and I am always the last one finishing my meal.
« Last Edit: July 05, 2007, 07:57:26 pm by TP »
4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision


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Re: Stupid Questions - CSF Leak / Funny Taste in Mouth
« Reply #7 on: July 06, 2007, 10:27:42 pm »
Hi There,

I had CSF leak post surgey.  I was put in a lumbar drain and bed rest (in the hospital) for 3 days and everything cleared up.  I am now 3 months post surgery and have not had any issues related to the CSF leak.  As I see it, CSF leak is not a major issue and according to Dr's it happens only about 4% of the time.  No need to worry.  I still have some days where I have a funny taste in my mouth.  Either I have gotten used to it, or it is not a problem at this point.  Up to 4-6 weeks post surgery it was more of an issue.

Good Luck...
1.7 cm removed at HEI by Dr. Brackmann and Dr. Schwartz on 4/12/07.  CSF leakage, lost hearing.  Getting better every day.


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Re: Stupid Questions - CSF Leak / Funny Taste in Mouth
« Reply #8 on: July 07, 2007, 05:08:19 pm »
Had AN surgery on 5/31/07 and still have a funny metallic taste in my mouth.  Neurotologist has been unable to tell me why.  Ten days after surgery he said it was just my taste buds and they should "recover" in a few months.  At next post-op appt (approximately 3 1/2 weeks after surgery) he told me that the metallic taste may be permanent.  Guess I'll just have to wait and see.  Some days the taste is worse than others, but it's still with me.  Someone I work with suggested taking Zinc, but I'm not sure if that's a solution. 
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

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Re: Stupid Questions - CSF Leak / Funny Taste in Mouth
« Reply #9 on: July 08, 2007, 01:32:14 am »
I had surgery in January 07.  Had the funny taste for 5 months consistently.  Now it comes rarely.  Don't know if it is the healing process or a change in diet to more veggies.  Anyone's guess!!!
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1.8 x 1.6 x 1.7 AN Left Side
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