It's official...

[ajgordish]

I have officially joined the AN club.  It took 2 MRIs but that little booger finally showed up.  It is .4 x .4 x .3 cm.  Very small, but boy does it pack a mean punch!  I have had vertigo attacks for over a year now.  I am fighting, yes fighting, dizziness every single day.  I have had to quit my job because I am not able to keep the dizziness controlled.  Just last month I had a vertigo attack that lasted 36 hours.  It was absolutely horrible.  The last 12 hours of the attack was not a fast spin, but this slow, round and round spin.  I took the meclinzine like I normally do and was able to control most of the vomitting, but for some reason the spinning would not stop this time.  I've had a hard time recovering from that episode. 

In addition to the AN, I also have a 1.1 cm mass in the Meckel's cave which most likely is a trigeminal schwannoma.  However, I have been to see a neurosurgeon who is not convinced it is a schwannoma.  He says it looks more like a meningioma.  The radiologist also missed a very definite meningioma near the brain stem.  It is also about 1 cm.  The neurosurgeon showed it to me on my images.  Because I was having some strange sensations in my back, he ordered a full spine MRI and would you believe yet another tumor was found on my spinal cord, in the Thoracic area.  It is .5 cm.  Also small, but starting to cause symptoms with tingling sensations and pain.

The neurosurgeon does not want to do anything just yet until I have been to see a neurologist for some more testing.  All these tumors suggest a possible genetic disorder Neurofibromatosis type 2.  I know the tumors will need to be approached differently if this is in fact what I have.

The good news is that there was a fear that all these tumors was cancer metastasis from another primary source.  A CT scan showed no other tumors, so that was a relief.

So, where I am at right now is 3 brain tumors, 1 spinal tumor.  And....there is just a tiny, tiny enhancement on the left acoustic nerve.  The radiologist didn't even mention it.  The neurosurgeon saw it and wondered that it may be the beginning of a left AN, which of course would then confirm NF2.  He is not ready to say that is the case, though.

I am overwhelmed to say the least.  I have no idea how to proceed.  I am trusting that the doctors are knowledgeable and will figure this out and then find a way to treat this.  In the meantime, I am suffering terribly with daily dizziness and then the random vertigo that just hits whenever it chooses.  I mention this to the doctors and it seems they just shrug their shoulders as if there is nothing they can do.  Is this true?  Is there really nothing they can give me to help with dizziness?  I now take 500 mg - 1000 mg of ginger root (same ingredient found in non drowsy dramamine)  I drink ginger tea as well.  Has anyone had anything prescribed to them that helps with dizziness?  I was so overcome with frustration the other day I just cried for hours, and then I was all snotty and felt even worse.  Crying definitely is not the best thing to do when you are dizzy. 

I have applied for disability, but because my hearing is still okay, i'm not sure I will be approved.  I know I can not work like this.  Most days I can not even drive.  My husband works and has good insurance, but the co-pays and 20% I have to pay for MRIs and all these tests is going to bankrupt us.  Big sigh. 

I am thankful there is a place to come and share my thoughts.  It's hard to explain to people what I am going through, even my family.  On the outside, I don't look any different, so it's hard for them to understand that I feel so horrible.

[ANGuy]

I don't have any advice regarding NF2, but non-drowsy dramamine is meclazine.  OTC or prescription they are both 25 mg meclazine.  I don't see how having a gram of ginger everyday can hurt anything, but it is not dramamine. 

FWIW, meclazine worked well for me, but it takes a few hours to kick in.  Those can be long miserable hours.  Zophran pretty much instantly stopped any nausea and vomiting.  It is an oral dispersable tablet which is a fancy way of saying "chewable".  You put one under your tongue or suck on it and it dissolves almost instantly.  The nausea subsides before it finishes dissolving.

Diazepam and other benzos work well for dizzyness but they will zonk you out and are not for long term use.

FWIW, I was told my dizzy issues would subside and sure enough, it's been two years since I have had any (knock on wood).

[ajgordish]

There is a product made by Dramamine...all herbal non drowsy that is just ginger root.  i have bought it at Target.  Now I just by Ginger root supplement.  I get more in the bottle than I get in the product by Dramamibe.  I also bought Bonine, which is meclizine also.  It makes me drowsy though, so I can not take it during the day.

[ANGuy]

There is a product made by Dramamine...all herbal non drowsy that is just ginger root.  i have bought it at Target.  Now I just by Ginger root supplement.  I get more in the bottle than I get in the product by Dramamibe.  I also bought Bonine, which is meclizine also.  It makes me drowsy though, so I can not take it during the day.

Now I understand.  Yeah, it's a choice of drowsy vs dizzy.  My dizzy attacks were limited to a few days each and only every once a year or so, maybe a dozen attacks total.  So I just drugged up and stayed home for a day or two.

We have to make the same choice with our kids and their hey fever.  They play soccer and when it is hot, dry and the air is full of pollen, which is pretty much every day down here, the non-drowsy meds don't do enough with all of the running and and falling on the grass etc.  If we give them benedryl, which works, they are too zonked out to play well.  If we don't give it to them they are just a pile of snot and sneezing and their eyes darn near close up and they can't play well.

[Cheryl R]

I am sorry to hear of the NF2.     My NF2 has only been an AN  and also a facial neuroma on one side and the AN on the other.     Spinal MRI x2 showed no spinal tumors.        I read that they spinal one is only treated if causing severe pain issues or causing some sort of damage.        You need to find a dr who is very experienced in NF2 as sometimes treatment can be different to preserve hearing.     Your AN is small to be causing so much dizziness.     I am not well versed in clinics who specialize in NF2 but know they are out there.            Google the NF2 if you have not done so.   The childrens tumor foundation site is also where NF1 and NF2 info can be located.    Mine was older onset as first AN did not have surgery till I was 49 and the tumor on the other side showed up over 2 yrs later.      I see neurotologist at Univ of Iowa. Dr Bruce Gantz.               I wish you with this as time and care goes on.                Cheryl R       

[Patti]

I feel so bad for you!  I don't even know what to say.  I will pray for you!

[ajgordish]

I am sorry to hear of the NF2.     My NF2 has only been an AN  and also a facial neuroma on one side and the AN on the other.     Spinal MRI x2 showed no spinal tumors.        I read that they spinal one is only treated if causing severe pain issues or causing some sort of damage.        You need to find a dr who is very experienced in NF2 as sometimes treatment can be different to preserve hearing.     Your AN is small to be causing so much dizziness.     I am not well versed in clinics who specialize in NF2 but know they are out there.            Google the NF2 if you have not done so.   The childrens tumor foundation site is also where NF1 and NF2 info can be located.         

Ironically, we adopted a little girl 15 years ago who has NF1.  She has had many complications, and was even granted a MakeAWish when she was 8.  So, if nothing else, I know more about NF than I do about just about anything.  Now trying to learn as much as I can about AN.  One thing I have read is that AN can cause vertigo and dizziness in the early stages when they are quite small.  About 20% of people will have this symptom.  However, the left side of my brain should have started to compensate but it's not.  There was a very, very small enhancement on my left acoustic nerve.  The doctor mentioned that it was possible another AN was forming and then, of course, NF2 would be confirmed with bilateral AN.  This is just a possibility though, but would explain why I'm struggling daily with dizziness.