Please tell me I'm not crazy !!!!??!!!

[mdallas]

 I'm new here so please excuse me if I discuss something that has already been discussed before;  I just can't possibly read everything that has been posted before I registered.  Forgive me.

Okay this is my story.................I am from Georgia and was diagnosed March 2nd with AN,my regular ENT referred me to another ENT specialist in North Carolina.  He said he would suggest me to either go to Los Angeles or Charlotte, so needless to say, uhm, I'm going to the one closest to home.  I have my first appointment with my new ENT this upcoming Wednesday and we're already planning the surgery.  He said that I have a small tumor, but because of where it is located IT MUST COME OUT to avoid facial paralysis; it's already pressing on my facial nerves.  Anyway, I work as a pharmacy technician and for about a year or so I (along with my boss) have noticed that my mind had started to come and go.  I don't know how to describe it, it just seemed like it would just quit working and there was nothing I could do about it no matter how hard I tried.  Just since this past December I noticed that my RIGHT eyelid started twitching ALL THE TIME, NON-STOP, and I also began to get very clumsy, ie..spilling pills----NOT GOOD!!!!, dropping things, spilling gallons of milk, ...everything ! My ear felt full, but I didn't think much of that.   I have bad sinus problems so I don't usually think much about it when my ears get kinda stuffy.  I just take some decongestants and keep on keeping on.  However, I do alot of my work on the phone speaking with customers and one day I noticed that with my LEFT ear  I could not understand a single syllable the customer was saying on the other end of the phone.  I quickly switched ears and it was clear as a bell.  Well, I put off going to the doctor thinking it was just fluid in my ears from my sinuses, and I had missed lots of work with my child out sick.  Finally I did go, and the GP said that he couldn't see anything wrong in my left ear, but since I had trouble hearing for so long, something MUST be wrong so he gave me a ZPak.  It did nothing.  Finally I decided to make myself an appt. with an ENT and he said that my ear looked as healthy as anyone would want to have.  He said it had absolutely NO fluid, etc.....etc....  Well, he did confirm that I had significant hearing loss in my LEFT ear.  He gave me prednisone for 10 days, still nothing. I went back to him again.  My hearing loss had decreased much more just within 10 days.   For the past month, I have had about 3 bouts with massive migraines with nausea and vomiting.  i don't get migraines.  These were debilitating.  I had to leave work because of them.  Anyway, before I went back to see the ENT, I had been reading my medical books as I so love to do, and diagnosed myself with AN.  I suggested it to him and he said "naw, it's a different KIND of hearing loss."  Yeah, right.  Sure 'nough, that's what I had.  The day I went for my MRI I woke up with a double case of pink eye and the worst sinus infection I have ever had.  I treated that and during that week of treatment my  RIGHT eye (remember, the one that twitched all the time) got a bursted blood vessel all of a sudden.  Maybe it was from all the sinus pressure, but it all just seems so strange and coincidental. I don't know.

Now, my thing is this....    FIRST OF ALL, i want to know if any of you have ever in your life heard of your eye, opposite the side of your AN, twitching and blood vessels bursting, etc.?  I mean, since AN is a nerve disorder, and there are nerves that cross over from your eyes to the other side of your brain....like in stroke victims (paralysis on the opposite side of the site of the stroke).  Can this be in AN also?  Have ANY  of you experienced anything like this?  Please tell me I'm not crazy !  In my lifetime I have had my eye to twitch before, but it would eventually quit after a day or so.  Not this time !  This has been going on for months.  The more I thought about it, I noticed it before my hearing loss occured.

SECOND OF ALL:  In all the literature I have read on AN, I haven't seen much about PAIN.  Yes, I've seen where some have migraines, and there is some pain after surgery, but I haven't seen much about PAIN as a symptom.  Just within the last week or so, I will have a spell every now and then with pain in my affected ear and side of face.  It woke me this morning.  It went away without meds, and about 5pm came back again stronger than before.  Is this normal?   Has anyone ever experienced this?  I just haven't seen anyone say anything like some of the things I've experiened.    I just wanted to know if I'm just that weird or if it's psychosomatic, or what???  Please tell me I'm not weird or crazy....please.

sorry this is so long, but you didn't have anything else to do but eat and watch reality shows, right?  lol

Have a great day !!!

--mdallas

[Kathleen_Mc]

mdallas: nope I don't think you're crazy, I do believe there is likely a physical cause for all of the problem you describe. Are they all related to the known AN? I don't know. I have never heard of eye twitching with AN, headaches yes and facial pain yes. I assume you have had a recent MRI to know that the tumor is there and they found nothing else, have you had nerve conduction studies done? (that was how I found out my auditory nerve wasn't functioning properly). The human body is an amazing thing and what one person experienes with a certain illness may be different than another and there's always the first person to have a different symptom with AN
Kathleen

[Joef]

I have "odd"  twitch  for 20 years (but it was on my AN side)... never thought too much about it .. then I found my AN ... have it removed 7 months ago, and not a  twitch since!! you not crazy .. but we are 

[cookiesecond]

Hi.
You are in the right place for answers as lots of people here have researched and researched.
I had eye twitching on my AN side and now 7 months post op I still have a little. My doctor says the nerves are just waking up.Good Luck on your research.
Take care,
Lynn

[Battyp]

mdallas you are not crazy I think we all agree on here that a lot of times the doctors don't listen to us! Everyone seems to have different symtpoms pre and post from their AN it all depends on where it is located, how big it is etc...so some symtpoms could be unique to one and not affect another. 
When is your appt in NC?  Do you know how big your tumor is?  Please keep us posted on how you are doing. Where are you in GA? Atlanta isn't closer for treatment? 

Hugs,
Michelle

[ppearl214]

Hi mdallas and welcome!   Watch your wallet around here... the wenches are looking for bail money for mischief they are plotting!

I'm going to chime in along with everyone else in their thoughts... no, you are not crazy.  I can share with you that my AN is left sided but I have right side facial numbness. My neurosurgeon and primary care physician and neuro-oncologist can't explain it.  Then I start to get thoughts of... "dang, do I have a right AN as well?" (recent MRI has ruled that out).  It does sound like you are doing all the right things and I can share that as soon as I got my initial diagnosis, I became more "in tune" to my symptoms. I believe, for me, emotional stresses of the AN do seem to enhance some of my symptoms (most recent, dizziness) but since my AN is growing at a steady pace, it could be the AN reminding me that "hello, I'm here!" kind of thing...

FYI... not only is my dad a pharmacist, but have to ask where in GA you are? My family is all Northside Atlanta!

Again, welcome to our little AN world. Pull up a barstool, drinks are being served.

Hang in there!
Phyllis

[Captain Deb]

Hey, M!
First of all, Are you a wench or a swashbuckler?  Got to get that straight as I boo-booed on that one once.  Has anyone given you an idea of the size of your tumor? It makes a huge difference in your treatment choice. I live in Boone NC and I took the trouble of going to LA to House Ear clininc because  the docs there treat hundreds of ANs each year.  They have surgeons there that do just about nothing else and it is a "center of excellence" in the field of AN research and treatment. I, too put saving my facial nerve on the top of the list of priorities. I did end up with headaches for several years, and balance problems, but my face was unfazed.  I also lost the hearing in the affected ear, which is a nuisance, but not really a problem.
 
I've had a twitchy eye off and on before and after the surgery, they trade sides from time to time! I also had migraines which got progressively worse right before my diagnosis, and really kicked in after the surgery, but have gotten WAY better in the past year.  Check out the pre-post op migraine thread and also the headache thread for some other folks experiences.

If you would like a real chuckle and to escape reality for a while, check out the good morning thread--it's a wild ride! It will prove that if you think you're crazy, you are in the right place!

Captain Deb

PS Watch out for the  crew of the Princess Batty Wench--they have been known to shanghai newbies!

[Karla83401]

Hi Mdallas,

You most certainly not crazy. In fact it is so good to hear from somebody else who is/has struggled with some of the same issues that I have. I find that I will be going along just fine and then all of a sudden just drop what ever is in my hand. In the past 4 to 5 months I have taken 3 nasty falls and had no idea why. And headaches and head pain...don't even get me started. I am now dealing with a long bout of nausea and feeling weak. I firmly that having a tumor growing inside ones head has the ability to have far reaching effects on the person.

Keep smiling and we will all get through this together. I am not much ahead of you in what to do for treatment. I live in southeast Idaho and we have limited doctors here so they are sending me to the House in LA to have my tumor removed. I am waiting to hear from the house before I decide too much about treatment because the doctors up here are not able to agree on anything other than it is growing rapidly and needs to come out.

Karla

[mdallas]

okay, i'm back.  

yes, atlanta would be closer, but my ent said that they just didn't have near as much experience doing this procedure as the folks in north carolina.  so, if i have to ride a few hours to get more experience, then so be it.  it's just a little over 3 hours.

i think it was phyllis asked about what part of georgia i'm in, b/c her dad's a pharmacist.  i'm around the augusta area, in the BIG CITY of  lincolton, ga.  we have 3 red lights and two drug stores(independent), one hardee's, one papa's pizza, and a  zillion convenient stores.  my boss is the only pharmacist we have.

about the size of the tumor....  all i have been told at this point is that it's SMALL.  no one has given me any specific measurements at this time.  i guess i'll find out when i go wednesday to charlotte and see my new ent.  and as far as i know right now, that is the only thing they found on my mri on march 1st.  it's very possible that i have some sort of nerve problem, like neurofibromatosis.  my father was diagnosed with, not that, but another disorder called, "relapsing polychondritis, " which is an auto immune disorder that affects your nerves and cartledge.  so, yeah, i may very well have  some sort of nerve disorder.

i haven't been scared up to this point.  it seems like everyone around me is more affraid than i am.  i've got faith that moves mountains, but last night and today i've started to get a little scared.  i even dreamed about it last night.  i dreamed about a nurse prepping me for surgery.  i'm an only child, and divorced, with one 5 year old son.  i have parents that live two doors away that are going to help.  and you would not believe the support of the whole comminity my family and i are getting about this.  i'm on every church prayer list in the county, and receiving cards, and money like you wouldn't believe.  lincolnton, ga is small,  and they might be the first to gossip about you, but they are also the first to help you up when you're down.  i love 'em ! you just can't beat good ole country folks.  but i still can't help but to get scared.  i'm always scared that something out of the ordinary is going to happen,because my family and i only experience what .5 % of the total population experience. we always have the rare conditions...if there's a 1% chance of something, WE are in the 1 %.  if it's rare, we get it.  

anyway, gotta bail for now.  hope to hear from you soon. 

thanks for your replies. have a great day !
-m

[thecakes]

  OK, your not crazy!!!!??!!!!

[Battyp]

mdallas having that support and faith will get you through this.  You sound pretty darn sane to me, now Capt Deb and Phyl on the other hand I'm not so sure about 

[Larry]

Mdallas, welcome to our club. The jury is out regarding the causes and effects of AN's. the more I read about peoples experiences, the more I kinda think, these AN's are benign but pesky little things. After you see your ENT, make sure you get opinions on both surgery and radiation treatment. there are lots of threads here for info and tats on various studies done.

Oh and to clarify batty's last comment, Capt Deb and Phyl are definitely over the edge. Capt Deb walks the plank for fun and Phyl thinks she's Willy Wonker (chocoholic)

Laz 

[cookiesecond]

mdallas,
I live in SC but went to NC for my surgery. I had a wonderful team of doctors. Dr. Calvin Cunningham is my primary doctor. He is a neurotologist. He works with Dr. McElveen that is very experienced with ANs and along with Dr. Takanori Fukushima that is a world renown neurosurgeon.I had a 3cm tumor and they removed it in August 2005 with no facial complications.The decision making process is the most challenging but you are in the right place for support and information. The people here  are very helpful.
Before making your decision, check out these doctors and The Carolina Hearing and Ear clinic. Others on this site have had great sucess with this team. People travel from all over to see Dr. Fukushima and I have never met a doctor as caring and understanding as Dr. Cunningham.
Take care and God bless you during this difficult time,
Lynn

[Captain Deb]

MDALLAS: Who have you been referred to in Charlotte? We live just outside Charlotte, and interviewed doctors there. There are a few people in NOrth Carolina who do have substantial acoustic neuroma experience, as in hundreds and hundreds of cases, but I don't know of any in Charlotte, so I would be curious as to who you're being sent to and what they are calling substantial experience. My husband had surgery last year, and we did quite a lot of research on the docs. If you want to send me a personal message or an e-mail, I'd be glad to let you know what we learned about doctors in this area in our AN journey. Jennifer -- e-mail jbecknell@heraldonline.com

[Captain Deb]

MDALLAS: Who have you been referred to in Charlotte? We live just outside Charlotte, and interviewed doctors there. There are a few people in NOrth Carolina who do have substantial acoustic neuroma experience, as in hundreds and hundreds of cases, but I don't know of any in Charlotte, so I would be curious as to who you're being sent to and what they are calling substantial experience. My husband had surgery last year, and we did quite a lot of research on the docs. If you want to send me a personal message or an e-mail, I'd be glad to let you know what we learned about doctors in this area in our AN journey. Jennifer -- e-mail jbecknell@heraldonline.com

Hey Jennifer, I live in Boone, NC and visit my step-son and daughter-in-law in Huntersville pretty regularly.  Maybe we should get together sometime. Where do you live.  Send me a personal message if you'd like.
Capt Deb