newly diagnosed

[Leslie]

I am a 42 yr old female, and just found out that the vertigo and loss of hearing in my ear was not due to allergies, ear infection or water in my ear canal as my doctor had diagnosed.  After 4 months of different types of decongestants I finally got him to agree to refer me to an ENT.  I had my MRI last week, and was told that I have a 3.5 tumor.  My doctor is referring me to a specialist to have surgery, I am awaiting a call to find out when this will take place. 
I am kind of in shock,  and realized that I didnt ask alot of questions,  so I am kind of in the dark about this whole thing.  I think what shocked me the most was the idea that I will be permantly deaf in one ear.  I am kind of anxious about the whole procedure,  and would like some info/advice anything that i can or should expect with regards to surgery, recovery, etc.
Actually any advice at all.  I also have been tired for the past 6-8 months,  and figured that it was due to lack of exercise, so i joined a gym.  It has helped some,  but still feel like i can never get enough sleep,  could this be a symptom of this also?
Any advice at all will help,  while i am waiting to see the specialist

thanks

[Battyp]

Hi Leslie and welcome to out little club.  So sorry you are joining us!
Yes, the tiredness can be a symtpom of the an...at least for me it was.  I found I could hardly get out of bed before I was diagnosed.  Not sure the reason just know I had a problem.

Have you copletely lost your hearing in your an side?  Translab and retro will give you a chance to save what little hearing you might have left.  Also, there are several types of hearing aids on the market to help with ssd.  several of us are in the process of getting them or have gotten them and will be more than happy to share what we know. 

best advice I can give you as a newbie is request a copy of your mri and medical records and hold on to them.  You will need them for any consults you will get and can send copies of them to get consults from places that might be far from you but with great reputations like House in LA. 

What part of the country are you in?  (assuming you're stateside) we do have several here from UK or Oz and Canada.

Please know we're here to help you with any questions you might have.  We're a very friendly bunch    Did you request any of the AN brochures from the ana?  They are very informative and helpful too.

All my best to you,
Michelle

PS...remember to take a deep breath as this is treatable!

[Patti UT]

HI Leslie,

   So sorry it wasn't allergies. 3.5 is pretty big.. Find out if it is pressing on your brain stem. If it is, there may be reason to look to surgery sooner. Otherwise, these tumors are typicaly slow growing, so take a deep breath, you have a little time to research, and start collecting all the info you can. The fatigue I would guess is what I call, "sensory fatigue" When your straining to hear, and you hearing effects your balance, and your having vertigo/balance issues from the tumor, your brain is working extra hard to compensate for all of this and thus making you fatigued.  That's my take on it anyway.(or at least the excuse I give myself for being fatigued all the time) If I'm not mistaken, it's the Translab surgery approach that wipes out the hearing, the Middle fossa and the Retro will preserve some of it. Look at the Pre surgical option section for answers and descriptions.  having not seen the ENT specialist yet I am sure you are quite in the dark on all the Acoustic Neuroma lingo. Be picky about who does the surgery, numbers mean a lot. make sure the surgeon does many, many of these a year. ALthough some of the info on here might frighten you from some of the post op issues people have, Please try to focus on what you can learn from everyone. We have all been through the journey you are now beginning and know what you re going throuhg. The shared stories give you a good insight on what you can expect and what is posible. Some people breeze through this pretty well and it is encouraging to read about their successs. Others, not so well, but it's nice, without thinking negative, to know what could be.  There is lots the doctors don't tell you about, and you will find lots of that info here. Feel free to post ANY question you have. There's usually someone who will have a good response. At everyone is freindly and supportive.  Unfortunately, now that you are diagnosed, as you go through the research process, you may find you get even less sleep. You may want to talk to your Doc about a sleep aid for this trying time. it really helps to get some good sleep.
Welcome, and Try to think positively.

Patti UT

[Joef]

Welcome Leslie!!

I had a girlfriend name Leslie as a teenager (about 25 years ago) !  ... believe it not, losing your hearing on one side is not so bad .. its when your in noisy places like restaurants where it becomes a pain, and you wont be able to tell were sounds comes from! . my wife has to tell me .. and finding the cats at night becomes a real challenge!!!!!

Battyprincess is giving you good advice!!.. get copies of your MRI and send them around to get other options.. after your not getting a wart removed .. you want (need) the best working on you!  We are a friendly bunch ask us anything ..

oh yea ... fatigue is a problem .. in last weeks before my surgery, I was hard to do anything!  I remember I needed to shovel some mulch that was on the driveway .. it took 2 shovel fulls .. and I needed to go in and rest.. it was at that moment (about 1 week before my surgery) that I fully accepted that I was in bad shape .. But thats all gone now!! .. I'm back to work... I still have some dry eye and facial weakness issues ..but  life has returned to normal ..   

  Joe

[Palace]

Leslie,


I wrote an post for you but, sent the reply when some other people did.  It got knocked-out and went away.  I have to leave for my second doctor appointment of the day.

My story is similar to yours.



More later.........there are fabulous people here to help,



Palace

[Leslie]

Thanks for the responses, right after i wrote the post i took a nap ,  i figure related to the AN or not I needed it.   I am from Northern California,  and so far have not run into anyone that has this,  of course other than this forum.   My ENT told me that there is no in in my town that does this type of work, so he is sending me to either UC San Francisco or Stanford.  He told me my tumor was "large", and therefore the type of surgery I had to have would cause me to lose my hearing. he said he was going to expedite getting me to the specialist to have it removed. When he said i wasnt going to be able to hear out of my left ear i said "for how long" and then he said permanantly. After he said that I think i went into shock.
For the past several months, as you may have also experienced, it feels as though I went swimming and never got the water out of my left ear.  It has been frustrating.  The vertigo is getting worse. it used to be intermittent,  but now over the last couple of months it is every day.  I do not have ringing in my ears though, which i am grateful for.  The thing is that i kept saying to myself, is that i cant wait to figure out what this is and get it fixed so i can finally hear normal again......
I am still going to

[Pembo]

Leslie, Your symptoms sound very similar to mine. I was 36 and my tumor was 4 cm. I went to the ent because of a little facial tingling and vertigo. My ear felt like I needed to pop it, like on the airplane and my phone was getting quieter. I was also very tired. I could fall asleep whenever and wherever. I'm happy to report that after surgery I hardly ever have to nap and the vertigo is completely gone.  My hearing is gone now thoug but more on that later. Since you are in California, look into the House Ear Clinic in LA. It is the best.

Keep posting and I sent you a private message....

Barb

[matti]

Leslie - I am from northern California and had my surgery at Stanford 8 years ago. If you are thinking of having surgery up here, then I would suggest The California Ear Institute in Palo Alto and I would highly recommend Dr. Joseph Roberson. He was my surgeon and has a lot of experience with AN's. My AN was also 3.5 centimeters and pressing on the brain stem. I did end up losing my hearing, but have managed quite well. There are hearing devices available for single sided deafness. I know how scared you are, and please know we are all here for you!!!

I will send you an e-mail with more info about my experience at Stanford.

hugs,
Cheryl

[Obita]

Hello Leslie and welcome:

I am so glad you came on here right away.  I did not find this forum until waiting (stressing) for my two year MRI results.  I felt so alone when I found out I had an AN. I had translab surgery in May of '04 for a 2.5 cm AN and other than loosing my hearing in the left ear, I am just fine. 

I too (along with tons of other people on this forum) was mis-diagnosed with fluid in the inner ear.  I was put on allergy meds, nasal steroids etc....from mid. Nov. until mid. Mar. when I was finally diagnosed with the AN.  I must admit I was perfectly fine thinking it was fluid as I had read about ANs while researching my symptoms and skipped right over all the info about them.  No way could it be a tumor.

I am very glad your ENT is trying to expedite your surgical consult.  Once I met the surgeons, set the date etc... I relaxed.  The unknown is stressful.

I wish you well and you can email me anytime if you have any questions.  As others have said, single sided deafness is a pain in the butt in loud situations but very managable in day to day life. 

Best of luck,  Kathy O'Brien - Minnesota

ps:  the fatigue is indeed the AN.  Your good side vestibular nerve is doing all the work to keep you upright so your brain gets tired. 

[Palace]

Hello Leslie and all,


Leslie, you can reach me by having the forum forward email privately and this way I don't have to make my email addy public. 

I'm at the same stage as you only slightly further in a possible treatment date.  I could give you my phone number privately and maybe be of some help.

Right now I have my own dilemma.  I went yesterday morning for a flu shot (and BTW, there was a mercury durivitive in it and had to sign a paper/release for that) plus, I got my blood drawn to see if the kidneys can handle radiation. 

I went home for lunch and then had an afternoon scheduled appointment which was with my regular doctor.  (who has BY THE WAY been out on leave for 8 months)  I told her the news of my newly diagnosed 22mm AN.  She felt that radiation was "nasty," as she put it.  Now, she is calling my ENT to talk with him personally and is hoping I will cancel the rad appointment and go with the full surgery!  She gave me the Valium for my neck and sleeping.  I did get a good night rest.  (7 straight hours sleep; hasn't happened since last Spring)  I feel rested but, my neck isn't better.  I will use the other ideas the forum suggested since I have all those things I could use for the neck.  I have everything I need, even the hot-tub which I use morning and nightly.  I don't get my neck in the water, though.  I have long hair and put it up.

Anyway, I'm still connected with Stanford and it sounds like I live near you, Leslie.  You may call me and I will give you my phone number privately, if you like.  I'm in No. CA., also and a Stanford connection.  I'm ahead of you only by a slight bit, in this.  (have had the cons with the surgeon, a radiation doctor, (both Stanford) spoke with a holistic doctor who schooled at Stanford and last night talked with my physician! 

For the forum people.......I took 5 mg of the Valium last night and quit all other drugs and of course, quit the 2 ounces of red wine.  Now, it is Imitrex for the migraines and the Valium at night until I get through this.  My physician wants me to cancel the Ct. scan and the rad appointment and go the full surgical route.  I have no clue what will happen next so, I'm not booking the San Diego trip to meet the other forum members.  (also, this thing is costing my part about fifty thousand dollars before I'm through and maybe lots more if I change plans mid-stream and go the full surgery.......and not just the radiation)  If you all have anything thoughts on this latest development, please let me know.

In shock again at the thought of not the radiation but, full surgery.  I have waited months for this date I have at Stanford at the end of the month and now, I may cancel that.  My physician will call the ENT doctor and discuss my case.  (then call me next week)

I put all this down here in this topic for Leslie so, she can see how this can go, before she gets too deep into all this, at my stage of the game.



Cheers,



Palace

[BevM]

I too am in northern California and feel very fortunate to have Stanford available.  I chose the Cy berknife radiation but Stanford also does open surgery.  I hope you will consult with them about their recommendation for your particular situation.  I had a very good experience at Stanford!  Please feel free to contact me if you would like more information.

Bev

[Palace]

Bev & Leslie,


Where do you all live?  Maybe we could meet for breakfast or lunch.  The Cash Store is open again at Davenport.  It is north of Santa Cruz and on the beach.  If any of you would like to discuss TX and other things, we could have a mini-meet-up.  It is right on the highway and we could walk the beach to talk after breakfast.  It is just an idea since, I can't make it down to San Diego and some of you might benefit as Newbie's to discuss it in person and meet.



Just a thought.....



Palace

[richard]

Leslie

I've known for about a month that I have an AN.  It's been an emotional roller coaster that no amusement park could ever compete with.  With the help of this site and google I have somewhat stabilized.  When you say 3.5 I am assuming cm.  I originally only thought of surgery, but I'm going in for a second opinion about radiation on Nov 6.  Check out this site www.anarchive.org/myths.htm.  I don't know if radiation is the thing for you, but please check it out.  I'm still struggling with what to do myself.

Richard

[Palace]

Richard,


I just checked the www.anarchive.org/myths.htm and that about did it for me.  Now I'm thinking I'd better stay with my radiation dates.  It sounds like a AN person can have radiation a second time if the tumor were to grow and need more attention.  (correct?)




Palace

[Windsong]

I don't think many people with Ans who have had radiation need a second treatment any more than those who had surgery (open skull).  I say this  after looking at stats and posts for over a year. (and googling all sorts of sites).


I had fsr and so far so good. I'd do it all over again if I had to but I don't think I will have to.

The best thing is to research/read/ decide (if one has that option), lsiten to what you hear, and then go with what makes you feel best from all that. It is a personal decision in the end. There are good stories from all modes of treatment.

Windsong

Richard,


I just checked the www.anarchive.org/myths.htm and that about did it for me.  Now I'm thinking I'd better stay with my radiation dates.  It sounds like a AN person can have radiation a second time if the tumor were to grow and need more attention.  (correct?)




Palace