asking for help

[deea]

I am about 5 months into this AN journey, awaiting middle fossa surg. later this summer.  I have sm. (9mmx7mm) left AN. 
Dizziness, nausea and balance have been problems which at times are pretty tough.  It seems to improve, I start feeling like a normal person and then it comes back.  I have lost almost 30# since Jan. due to nausea.  This past week I have started having weird taste sensations.  Either I have no taste, extremely salt taste, or most often a terrible metellic taste.  Does this make any sense...I have read about taste loss or metal taste post op but not before.  This is driving me crazy.  Any suggestions?

I hope someone has some helpful ideas.  Thank you.
Deea

[Raydean]

The changes-symptons that you mention combined with the weight loss is significant enough that it would be best to check in with your treating doctor.  It's always better to error on the side of safety
please call you doctor and report these changes and please keep us updated.

Best to you
raydean

[Betsy]

Hi Deea,

Welcome to the forum...you're not alone on your journey.  From what I've gathered from my doctors and from reading the posts here, it's not common to have odd taste sensations, but it does happen.  This is the way it happens for me....first I get a bitter taste/tingly sensation along the sides of my tongue then within a couple minutes the vertigo hits and I go down.   Once I'm down, the nausea comes along with waves of heat and what I call "eye jitters".  The bitter taste has probably saved me from serious injury because it gives me a minute to get somewhere safe.  It wasn't a mild taste/sensation either; it was so intense it actually woke me up once.

Oddly enough, the severe episodes stopped the week before I got the diagnosis.  One doctor's theory is that the balancing nerve on the other side of my head is compensating.  Another doctor thinks it's migrane related...not AN.  I'm not sure, but I'm glad it's not happening anymore.

I wish I had some helpful ideas for you.  The fact that you're having new symptoms is significant though...what did your doctor say?

Again, welcome to the forum.  The folks here are great!

Betsy

[zjane]

Check with your doctor.

Any specific reason why you have to wait to till later this summer for surgery? 

[lori78]

Hi Deeaa
I was 28, having severe vertigo and nausea for  YEAR before the MRI that revealed a huge AN.  Since then I've had 30 hrs total of surg, and Gamma knife.  I find out in October if the radiation worked.  I also had the metallic taste, cant feel my left side, and lost 20 lbs cuz eating was hard (tho fitting into a size 2 has been nice!)  My biggest issue was SEVERE depression, but it'w being managed.  I could stand on one foot last night and had my first highway drive, so I can tell u, as a nonbeliever, it gets better, I promise.  Hugs, Lori

[Jim Scott]

Deea:

Hi.  Welcome to the site and the forum.  You didn't indicate the size of your AN but if you're having surgery and all these symptoms, I'll assume it's either fairly large and/or positioned in a way that affects the cranial nerves quite severely.  I'm sorry you have to deal with this, but we all know what you're going through.

The weird taste sensations you're experiencing are part of some AN patients symptoms.  So is nausea, along with dizzyness and loss of balance. .The AN tumor disturbs cranial nerves and can have all kinds of negative effects on the patient.  Prior to my AN diagnosis and subsequent surgery (and radiation) I suffered from a total lack of appetite and lost over 30 (unneeded) pounds.  However, I had a very large tumor and did not experience nausea.  I would certainly contact your doctor and let him know that you are experiencing these difficulies.  Just a suggestion but you might want to consider having surgery a bit sooner, before too much nerve damage takes place.     

Jim

[Pembo]

I started with dizziness about 2 months before they found my AN. By the time I had surgery I was constantly dizzy and nauseous. I could hardly eat anything. I didn't have the taste problems but I had facial numbness. My guess is your tumor is pressing on the nerve that goes to the tongue.  After surgery my dizziness and nausea were completely gone. I hope the same happens for you. Stay strong.

[Joef]

Yep .. I've seen all those before .. about the weight loss ... before Dx'd I was eating us out of house and home .. and not really gaining weight...  I later realized that because of the balance issues ... I was just burning more calorie's to keep balanced !!..

[deea]

Thank you one and all for your willingness to reach out and help.  I can tell you have the tender hearts of someome who understands and  cares.
Been there, done that...and life WILL get better, thats what I need to hear.  It was a really lousey weekend and I was definately feeling sorry forself.  I think it was serving a purpose.  Making this whole tumor thing real.  Letting the tumor, my docotors, and not MY summer plans make the decisions as to the schedule.
 
My son was married a couple of weeks ago, I have 2 family gradultions in two weeks, and then my youngest sisters wedding on July 7th.  After that I  am free.   Ready, and at this point in time,  more than willing.  I was'nt at that point, still doubting that such a little think could be such a problem, hey, I have things to do, don't you know.  I do believe God is speaking to me  and saying, I Told you So , Now  just listen.........and I am ready.  I Called the office yesterday and they called back within 1/2 hour.  Dr. was in surg. but said he would call this morning.  Now I am feeling better and I'm going shopping at Kohs.  I have a 30%of coupon which I refuse to waste!

The AN is small (9mmx7mm) so it must be the position on the nerves which is giving me the trouble.  This taste thing is miserable.  I had lost weight without trying , a whole new experiece for me, for sure.  I could stand loss another 25, but this is not the way to due it believe me.  You are hungry, just cant make yourself eat..not good.  Now with the" tastey"  taste buds stepping in I don't know where this is going.  Hopefullly I will fit into the packed away jeans.  Something good may come from this.  I may look normal, well not really normal with a shaved head, drooping mouth, ok, lets not go there.  The good news, is  I think I am going to get my eye brows waxed.  I am blonde and I've only done that once before (wedding) because I am cheap, and they don't really show because they are so light.  But if I am not going to have good hair, at least I should have nice brows right?

Thank you all.  I have gotten myself back into a better place.   I will pace my, do controlled outtings but not overdo.  This is the mom in me.  I must be in control!

I will keep in touch and let you what the Dr. says, and results of the testing.  Again, thank you for allowing me to ramble.  It's so much cheaper than therapy.

Deea

[Jim Scott]

Hi again, deea:

It was refreshing to read your basically upbeat post. if our responses contributed to your improved attitude toward the reality of having to deal with this AN thing, we are more than gratified.  After all, this is a support group!                                                                                                 

Personally, I like to be in control, too, so I can appreciate your frustrations.  I had to pretty much abandon my carefully-planned daily/weekly schedule for close to a month both before and after my surgery, in order to do what was necessary to deal with my AN, including a 4-day hospital stay, which is the epitome of losing control, especially in the ICU. Fortunately, immediately following surgery, you sleep a lot and don't really care (much).   On the bright side, this deep-seated desire to overcome the tumor and get my 'normal' life back probably aided in my fairly rapid recovery, as it likely will in yours.  I found it a great motivation.

Facial paralysis following surgery may occur - often temporarily - but that is not always the case..  I had a huge tumor (compared to yours) and did not experience facial paralysis, post-op.  By the way, they don't shave your head for this surgery.  They just shave a relatively small strip, which can usually be hidden if you have long hair.  My man's short haircut grew in and covered the incision site within six weeks.

Do stay in touch.  Keep us informed.  We understand - and we care.   

Jim

[Sam Rush]

Don't go crazy, that will make everything worse. The taste abn. is from involvement of a small branch of the 7th cranial nerve(facial)  called the corda tympani, which supplies sensory fibers to the front 2/3 of the tongue, and to a certain extent, the lips. If they can spare your facial nerve, this branch may regrow, or not. Where are you having your surgery? Are you having tinnitus?? Is your health otherwise good?.

[deea]

I did check in with my Dr. last monday and he started me on oral steroids.  Saw some improvement by tues.evening, 24 hr. later felt better than I had in a week.  Thurs. am the "icky" tastse was gone and I was walking straight again!  Had  prior scheduled balance testing set up for thur. 7th.  I was pleasantly surprised the test did not cause me much trouble.  Fleeting dizziness, but nothing terrible.  On the way home it hit me again and I was off to bed for the next 4 hours.  I don't sleep, just lie still and it seems to ground  me and after a bit I can function.  It seems to me that as the steroid dose lessens, the symtoms are reappearing.  i am not a happy camper!

As the week goes on there are periods when I feel great, actually thinking ok, balance is so much better, working in the yard and then...pow!   I am spending more time laying in bed.  As before, I don't sleep, just be very still, and after 1/2 hr. or so I can get up again.  The same problems as before are reappearing and now seem to wax and wane with no apparent relation to activity.  Not good!

Why is it that kids, pets, and AN patients always seem to get sick on weekends and after hours?  I'm not go to ER sick, just miserable again.  Worried, and trying to keep my spirts up.  Don't want to slip back into that dark place again.  I will call the offlice on monday and tell them what is going on and see about scheduling surg.  My next appt. is on the 21st.

The good news in all this is I am sleeping better, actually sleeping for 4-5 hours straight.  Thats good for me.  Unfortunately when I'm up between 3-4am I shop.....bought myself a rosewood cane online the other morning at 4 am.  I am awainting delivery, complete with free gift wrapping and gift enclosure!

Again, thank you for your concern, suggestions and insights.  It has been so helpful.

Deea



















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[pearchica]

DEEA: I am sorry that you are having a rough time- plus all the stress of May/June Madness- (my husband and I go through this everyear with graduations, family reunions, ect.) Plus it's always exhausting talking to family because if you are like me (which I assume you are given that you are NOT going to waste a 30% coupon at kohls!) you are acting as a cheerleader for your immedaite family and clan.. i.e. I'm fine really, just a little fuzzy....

The most exausting part of my experience was the reasurrance I kept giving eveyone else. Thank goodness my neighbor Joy caught me on it (she survived cancer) and told me to knock it off that this was the time that I take care of myself.  I tried but wasn't very successful, even my mother commented that I was a bit too cheery, which made her more worried! 

Any how, I think you should feel very comfortable venting on this site- that's what we are here (and hear) for ...know that you are in my thoughts.  And again, I'm really sorry that you are experiencing all these complications. Take care of yourself- Annie