Could this be AN related? May seem minor but maybe it's not?

[lauralynn]

Hello AN family,

I have not been in here in a while but a good AN friend encouraged me to post when I feel I needed to.  So, I feel I need to.  Not sure this is AN related or not but I don't know what it could be.  Over a week ago I noticed my tastebuds were very sore.  I know I've had the awful metallic taste ever since the AN was removed in 2009.  Never have I had a problem with my tastebuds.  Things have always tasted the same as they did previous to AN surgery.  Now my tastebuds are so sore, eating is the last thing I want to do.  I'm not even sure I really taste anything anymore.  I've tried swishing (which is alot of fun when you can't completely close your mouth!) with salt water but that doesn't seem to help.  I figured I'd ask my AN family before I make a dentist appt.

I know that regrowth of an AN (my Neurosurgeon left a small portion to preserve the facial nerve) is unlikely is most cases but when I have new symptoms or worsened symptoms I can't help to think that little bugger is growing.  Within the last month I have experienced much more weakness/numbness in my face/mouth and I noticed several months ago a noticeable numbness on the outside of my left lower leg.  I have told my neurologist about everything except for this most recent tastebud thing.  Needless to say my neurologist says there is nothing he can do for me. 

Newbies, please don't let this discourage you.  Please don't let my AN journey lead you to believe that you too will have endless struggles.  I pray for everyone on this forum and that God provides you with knowledgeable and compassionate doctors.  Mine left me crying in his office after he told me he couldn't do anything for me and that I should take a vacation.  Needless to say I am still searching for a new neurologist. 

Despite everything, I am staying strong (emotionally and in my faith) and though I continue to have struggles, I will stay strong.  My neurologist can't deny me that.  To all that have read this, God bless you and where ever you are, I pray that you have the love and support that is needed to get through each day.

God Bless,

LauraLynn

[JAndrews]

When did you have your last MRI? I had that bad taste too for a while.

[lauralynn]

My last MRI was this past June.  I've had the metallic taste ever since the surgery.  Now it seems something different is going on with my tastebuds.  Still have the metallic taste but my tastebuds hurt and I am not so sure I'm able to taste anything, can smell but not taste.  Never had a problem with tasting before.  That is why I was wondering if it was even related to the AN surgery...I have no idea.

Thank you for your reply JAndrews

LauraLynn

[opp2]

Forgive me for this but when you say your taste buds hurt, do you mean your tongue hurts? I would go back to the GP and see what they say. I'm sure there is something going on, and I find my GP is very good at investigating.

[CHD63]

LauraLynn .....

These new symptoms have to be very distressing.  My advice would be to check back in with the surgeon who removed your AN.  Neurologists do not deal with the surgical aspects of neurological issues.  Your PCP should be more caring with suggestions ..... try him/her if your neurosurgeon is unavailable.

I'm assuming the MRI in June was unremarkable.

Many thoughts and prayers.

Clarice

[lauralynn]

opp2,  the only way I can describe it is it feels like I ate a bunch of candy and my tastebuds are sore.  I didn't eat anything out of the ordinary.  I've noticed my gums on the right side of my mouth seem to be sensitive but I have no feeling on the left so not sure it's sensitive there...though my tastebuds on both sides seem to be sensitive (by appearance, can't feel the left side).  I'm finding out that if I eat anything, and I mean anything...it makes it worse. 

CHD63, I will be in contact with my Neurosurgeon's office, though I have been trying to get in touch with someone there for quite some time.  I have an appt. with my primary next week so I may have to wait it out.  What do you eat when your tastebuds hurt?  This is so weird, can only pray it goes away on it's own and that it's nothing to worry about.  My last MRI showed no new growth w/ the remaining AN.

Thank you both for your responses, they really mean alot to me.

LauraLynn

[Kaybo]

Lauralynn~
SO good to hear from you - sorry it is because of a problem, though!

I don't have any words of wisdom except that I found this great mouthwash that seems to help with whatever in my mouth.  I often forget about it, but when i do finally remember to use it for a problem, it really does help.  I have no idea if it will help in this situation but can't hurt.  It is really great for when I bite the side of my mouth that I do not feel.  It is Orajel Antiseptic Mouth Sore Rinse - you might give it a whirl!

So sorry for your pain!

K   

[lauralynn]

Thanks Kaybo!

I will give that a try, I will let you know if it works.  I will try that before I make a big fuss to doctors. 

LauraLynn

[Brewers7]

"Take a vacation."  Unbelievable.  You win the insensitive remark contest.  We should start a thread.  Back to your symptoms.  I have had a salty taste in my mouth for months.  I have mentioned it to my neurologist and, although he did not suggest a vacation, he did not seem concerned from a medical standpoint.  Also, I have read many posts from those who have the metallic taste.  Apparently, it is very common and not necessarily related to regrowth.  At least that is my perception.  Since it is a new development, you are wise to get it checked out.  God bless you.  Susan

[mk]

Just a thought, do you suffer from dry mouth? There are some AN patients who experience dry mouth and nose, in addition to the much more common dry eye. My AN side nostril is very dry, and this causes some minor bleeding and my nostril feels constantly irritated.
I am thinking that similarly, for people experiencing dry mouth, decreased saliva production could account for the irritation that you are experiencing.

Marianna

[lauralynn]

Hi Marianna,

My mouth doesn't seem to be dry so much but I am thirsty all the time.  The left side of my nostril always feels plugged and is usually dry.  What us ANer's go through...huh?  Thanks for your response and I will keep everyone posted.

God Bless,

LauraLynn

[sunfish]

Just wanted to comment on your symptoms.  My AN was treated with CK.

I would consult primary care physician about your mouth.  You could have a little infection, and prescription mouth wash might fix this quickly

On and off, I have a numb spot on the outside of my left leg, too.  I was freaking out about it, until the neurologist told me I have classic meralgia paresthetica.  Trying googling the name of the disorder, and you'll get lots of info.  Just a fancy name for the fact that I have a nerve which gets pinched a little, and causes the numbness.  It's not back related, and it doesn't affect my movement.

So your problems might not be AN related at all.  I certainly do relate to the fact that every time we get a new symptom, we're more likely to believe that somehow it's related to the AN.

[lauralynn]

Thank you Sunfish,

I will check out the description of the numbness of the leg.  I'm hoping to get into see my pcp this week about my mouth/tongue.  I really hope it's something minor and that can be healed quickly.  Sore tastebuds is no fun    My neurologist did a nerve test regarding the numbness that I have in my left leg (AN side) and he told me that my central nerve was damaged from the AN surgery and that is hard to diagnose.  So his thoughts were that it was from the AN surgery and that's all that came from that.  This is the neurologist that told me to take a "vacation" and who practically throws sample medications at me as I'm leaving.  I will keep you posted.

God Bless,

LauraLynn

[lauralynn]

Susan,

Thank you for your response.  You like my neurologist's advice to take a vacation huh?  I told him a vacation?  I have not been working, I don't need a vacation...I need help to feel better.  I have had the "metallic" taste since I had my AN surgery.  The new symptom is for whatever reason my tastebuds are super sensitive.  Even water hurts.  I will let you know the outcome.

God Bless,

LauraLynn

[sterry]

Just saw this post. I'm two years post translab, my last MRI clear and I get 2 years before the next one.  Now back to topic, I have had a salty tongue on the left side, same as AN for two years now.some days it feels like it is on fire by the end of the day!  I have noticed the raspberries ,tomatoes  will make it hurt more by the end of the day. I like sweets, as they give some relief to the salt. Water too irritates my tongue and I am thirsty!  I described it to the doctor and he thought it was nerve damage.  Sleeping helps it to return to  the new normal and if I do not eat or drink it feels much better, but unrealistic.  I use some mouth rinse for dry mouth sometimes also I have used baby oragel to relief some pain too.  Like the tinnitus, keeping my mind occupied helps to forget. Sounds like I can try the mouth rinse from above post.  The other thing I noticed with my tongue, is that it doesn't seem to fit right in my mouth any more...weird.  I understand your frustration, it so annoying at times!  I hope yours improves for you, I am hopefull that some day it will just disappear:)
Susie in Wyoming