Metallic Taste???

[Jwh]

Hi!
Question for you all......I'm 15 months post op and started experiencing a metallic taste in my mouth on the AN side.  I had it right after surgery but it went away.  Why would it come back so long after surgery?

I just had my follow up MRI and the doctor said it was clear.  Now I'm wondering if that was right?  How do I know that the scar tissue he saw wasn't regrowth which is creating this taste again?

Thanks,
Jen

[28Lisa]

Not sure but Im into 34 months about post opt and certain foods such as chocolate, peanuts or apple juice amongst others have a different taste than (pre opt).  Maybe someone can explain why....

Hang in there

[Jim Scott]

Lisa,Jen ~

This entry from Wikipedia should help explain the source of problems with taste that some AN patients have to deal with.  http://en.wikipedia.org/wiki/Chorda_tympani   As you can see, its complicated. 

Jim

[Jwh]

I guess my question is should I be concerned or is it rather common? 

[Jim Scott]

I guess my question is should I be concerned or is it rather common? 

Jen ~  The latter.

Jim

[Jwh]

Jim even though I'm so far out of surgery?  I had it right after surgery and it went away a couple of months later.  Why would it reoccur?  Any ideas?
Thanks,
Jen

[Jim Scott]

Jim even though I'm so far out of surgery?  I had it right after surgery and it went away a couple of months later.  Why would it reoccur?  Any ideas?

I'm not a doctor so my best advice would be schedule a consultation with your AN surgeon, if possible and pose your concerns to him.  You may want to request a 'fresh' MRI to assure yourself that a remnant of tumor hasn't begun growing.  That having been dutifully stated, if you type 'metallic taste' in the Search box (upper left corner, under your profile) you'll see a bunch of threads from the past few years with posts from AN post-op patients complaining about that 'metallic taste'.  I skimmed a few of those old posts (seeking a cogent answer to your question) and one person stated they had the metallic taste thing going on nine years after their surgery.  I think it has something to do with the cranial nerves being disturbed and never totally recovering.  Jan B. (posting as 'leapyrtwins') suggested taking zinc tablets to help combat the metallic taste because they seemed to work for her - but she couldn't prove they were the reason her 'metallic' taste eventually disappeared.  Another poster commented that taking zinc did nothing to alleviate their metallic taste problem, making the efficacy of zinc pills to combat the metallic taste issue somewhat problematic. 

I had a small 'numb' spot on the side of my tongue just before and immediately after my debulking surgery.  I still do, 4 years later.  However, I never suffered from that metallic taste thing, although prior to my surgery I practically lost all sense of taste (and 30+ pounds...involuntarily).  Since the surgery, I believe my sense of taste has actually become sharper and things taste better, which curbs my appetite somewhat (because I'm easily sated) and I've been able to maintain a healthy weight.  That small numb spot on my tongue is pretty much inconsequential and has no effect on my lifestyle.  It was likely due to the AN messing with the trigeminal nerve cluster that never quite recovered.  Considering what other AN patients sometimes have to deal with, I can't complain.

Meanwhile, I hope your annoying metallic taste problem resolves soon.  If not, I hope you can get an explanation from your doctor and, perhaps a remedy.  Perhaps other metal taste sufferers will see this thread and chime in with better advice.  I regret that I can't offer you a definite explanation/solution - but a talk with your doctor and, possibly, an MRI, may help. 

Jim

[kenneth_k]

Hi Jen.

I know this is inconclusive, but my taste issue returned 1½ years post-op at the same time I felt increased pressure and developed a CSF leak.
My doctor couldn't give me a solid answer, but increase in middle ear pressure and maybe even a small infection could influence your taste.

Even farther out would be a symptom of a CSF leak itself, where you can taste CSF on you tongue.

Do you have a cold or headaches?

The best advise comes from Jim as always..... Talk to your doctor.
These symptoms and especially recurrence can drive us nuts.

Best regards, Kenneth

[jerseygirl]

Jen,

I am honestly confused. You just had an MRI and the doctor said it was "crystal clear". Now you are saying he saw scar tissue, that means in my book "not crystal clear". Scar tissue is something to watch to make sure it does not grow and become a tumor. If MRI shows neither the tumor nor scar tissue, then the next one can be a little later and everybody worries about it less. Then MRI just becomes a precaution. Let's hope your doctor is right and it really is a scar tissue and he can really distinguish between regrowth and scar tissue.

As far as metallic taste goes, 15 months out of surgery is not fully recovered yet. Symptoms  might recur many times before they finally go away. In addition, if you are talking about scar tissue, then it can also impede circulation thus causing symptoms. When the scar is on your skin, you can massage it to soften it but no such luck when it is inside the head!

Anyway, I would get back to the doctor and ask him:
1) where is the scar tissue
2) how big is it? Can it be measured or is it just a line or a spot that is enhancing? If it is big enough to be measured, is there a mass effect, in other words, is it pressing on anything?
3) How can you tell by looking at MRI that it is really a scar tissue and not a beginning of another tumor? Does scar tissue have a distinguishing feature therefore ruling out a possibility of a new tumor? The thought of regrowth causes me great worry and anxiety.

When I was in the process of choosing a form of treatment 3 years ago, doctors could only tell a difference between the scar tissue and a regrowing tumor only if it increased in size, therefore demanding to see "evidence of growth" on serial MRIs. Maybe they can now tell with certainty which is which and you won't need to worry. Good luck and keep us posted.

                                             Eve

[Jwh]

Thanks to everyone with your responses.  Eve my doctor said it was crystal clear.  when i asked him about scar tissue he zoomed in on the computer and showed me the fat they put in.  i just assumed that there would be scar tissue after two surgeries in the same area.  Am I wrong?  i supposed I should be happy with what he said and move on with things.  unfortunately that is easier said then done.  i still have that taste in my mouth.  i've read a couple of posts on here that said it's the healing of a nerve ( can't remember which one exactly).  i guess i'm afraid to call him back and ask. ugh i just need to get on with my life.

[yardtick]

I am almost 4 years out from having a facial neuroma debulked and I still periodically have the metallic taste in my mouth.  The first 20 months were terrible, I was always sucking on mints.  I find now when my sinuses are full that taste has returned.

Hang in there,
Anne Marie

[jerseygirl]

Jen,

Fat and scar tissue are two different things. The first one will be there forever and can disappear in time as it is reabsorbed but the scar tissue can only grow   and turn into a tumor. You can e-mail Dr. Roland and ask what he saw but if he said "crystal clear", I would presume it is fat. Once you get a clear answer, you won't worry so much. I always find it calming to know where I stand and any kind of ambiguity is anxiety provoking, that is why I always press for exactness and certainty. Otherwise, I can't sleep!

                                       Eve

[kenneth_k]

Hi Jen.

The doctors will have to manipulate your facial nerve (number 7) during translab surgery. Not necessarily cut it, but gently push it aside.
The Chorda Tympani Branch in your middle ear is probably responsible for the metallic taste. If it had a small bruise in surgery, it will take time to heal (several months), perhaps with on/off sensations.

If you had your mind set up on getting a special message, and your doctor told you otherwise, it is okay not to feel happy, regardless of message content.
I just had a CSF leak fixed by a lumbar drain. I was convinced, that I needed surgery again. The lumbar drain worked, at the doctor told me, that he wouldn't re-operate. I should be happy, but I was dissapointed because I thought surgery was the right and necessary thing to do.

Now im tip-toing around the house and still not confident that I will remain without leaks.

Kenneth