Normal hearing but crippling vertigo attacks and headaches

[ShoeGalBecky]

I am quite confused regarding treatment for my AN. If any of this sounds familiar to anyone, please advise. I have been having severe vertigo attacks with vomitting and excrutiating headaches that leave me bedridden for about one week per episode. Dizzy and off-balance for about three weeks. My hearing tests are normal. My only ear complaints are a plugged feeling and occational "whooshing" tinnitus. My MRI shows a small AN (5 mm x 8mm). The physician calls my case "rare" in that I have no hearing loss. Because I am relatively young (38 yrs old), he wants to do microsurgery and get rid of the tumor completely and hopefully preserve my hearing and cure the vertigo. However, he is afraid that maybe the vertigo is migraine induced and not due to the tumor at all. In which case, the surgery may make my headaches and vertigo worse not better. However, if the tumor is indeed causing the vertigo and we do the GK route, then the vertigo may not be cured. He does not recommend that I wait and watch because of my age and because I have normal hearing. I am concerned because I feel like this whole thing is a gamble. What if I choose the wrong option and destroy my normal hearing and still have the vertigo? I am sorry this post is so long and confusing. I tried to explain it clearly. If anyone has any advice, I would truly appreciate it. Thanks much.

[mary07]

I am quite confused regarding treatment for my AN. If any of this sounds familiar to anyone, please advise. I have been having severe vertigo attacks with vomitting and excrutiating headaches that leave me bedridden for about one week per episode. Dizzy and off-balance for about three weeks. My hearing tests are normal. My only ear complaints are a plugged feeling and occational "whooshing" tinnitus. My MRI shows a small AN (5 mm x 8mm). The physician calls my case "rare" in that I have no hearing loss. Because I am relatively young (38 yrs old), he wants to do microsurgery and get rid of the tumor completely and hopefully preserve my hearing and cure the vertigo. However, he is afraid that maybe the vertigo is migraine induced and not due to the tumor at all. In which case, the surgery may make my headaches and vertigo worse not better. However, if the tumor is indeed causing the vertigo and we do the GK route, then the vertigo may not be cured. He does not recommend that I wait and watch because of my age and because I have normal hearing. I am concerned because I feel like this whole thing is a gamble. What if I choose the wrong option and destroy my normal hearing and still have the vertigo? I am sorry this post is so long and confusing. I tried to explain it clearly. If anyone has any advice, I would truly appreciate it. Thanks much.

Hello, All I can say is I know what you are saying i'm kind of in the same shoes I am 47 .I need to make a decision soon  becouse my AN is growing my hearing is good  but I get headaches and dizzy at times the tumor is 1.4 cm  as of Nov. now March I will get another one and then see the doc in April .I am doing alot of research on both surgery and radiation  and will one day soon have to make a decision . I know  sooner or later I will loose most of my hearing if not all so that I have to accept. Good Luck to both of us ....
Dont feel alone .
                              Mary

[nannettesea]

Shoegal,
It is not that unusual to have little hearing loss--it's very individual.   Some people had big tumors and little loss--mine was medium, and minimal loss, except for speech discrimination.

The vertigo and dizziness may very well subside if you give it time.  The body adjusts.  Surgeon is right that you have a better chance of preserving hearing if you do radiation or surgery.  But it could take a LONG time for your hearing to be more affected.  The location of tumor is important--it gets dangerous the closer to the brainstem, but yours is still small.

From one who jumped into surgery too soon, thinking the dizziness was due to tumor (it wasn't), and now dizziness is debilitating post-op, you may consider being patient, let the body adjust for a while, and think about radiation.  Just because you are young and can handle surgery, it is not to be taken lightly.  If you really want the tumor OUT, the surgery is good option.

Really depends on how you feel.  If you can travel, I highly recommend Dr. Tim Hain in Chicago, whom I ended up seeing post-op.  He can help you determine if migraine is problem, or tumor.  He says (after seeing me--a coincidence?) that tumors are often "silent" and that other things may be causing problems, ie. migraine.

These are just my opinions,
Nan

[ShoeGalBecky]

Really depends on how you feel.  If you can travel, I highly recommend Dr. Tim Hain in Chicago, whom I ended up seeing post-op.  He can help you determine if migraine is problem, or tumor.  He says (after seeing me--a coincidence?) that tumors are often "silent" and that other things may be causing problems, ie. migraine.

These are just my opinions

Thanks for the reply nannettesea. That is very useful info. I really wanted to know if other people had symptoms that were not caused by the AN and how a physician can tell the difference. It really makes a big difference as to what treatment one chooses. I am sorry to hear that your dizziness is debilitating. I wish the best to you. And yes I am trying to be patient and not jump into any thing too quickly. It is just hard to not want the "sucker" gone.
Thanks and good luck to you too, Mary07!

[irish211]

Hello to all:

I have a unique situation requiring HELP! 

I was treated for inflamed eustachian tubes by an ENT, given too many nose sprays to mention, no hearing test, but eventually prednisone seemed to work prior to getting on a plane and going off to St. Marten for one week.

I noticed while there and away from allergy factors present in Connecticut that I felt little relief of this plugged up ear feeling.

Upon return, took myself to an allergist because I was confused....thinking it could possibly be a reaction to two adopted long haired cats... until the trip.

Shock...I am not allergic to anything, changed ENT'S and was given a hearing test and an MRI...

The rest is probably about the same as all of you...

I have an acoustic neuroma which is 1.3 cm by 1.5 by 1.9 in width...clearing pressing into my brain stem and causing the plugged up feeling....no other symptoms at this time with the exception of a sometimes tight feel in face or  in my throat...

I need advice  ...went to NYU..was  told I could wait it out but to consider brain surgery due to my longervity in the family...I am 55 and still raising two of 3 children alone...but Yale said get it out....but another Dr....  says consider radiation.

I have researched and found Skull Base Center in LA,  a Dr. Jho in PA and I live in Connecticut.

I am LOST , very panicky, alone as a single parent, with no sense of what is the right thing to do.  I am self employed, need my eyes to work with magnification, cannot take mos off to recover, and feel rejected by family who acts like this will go away.

Does anyone know of a facility to remove this by endoscope on the East cost as Skull Base claims to be exclusive to?

I hate to give up hearing (am above 30 in bad ear, except first three decibals are around 35) yet in a crowded room can't hear on that side.  Mild sound of a sea shell...not terrible ringing.

Feel fine, slight tightness at times in jaw line, but no vertigo or really bad symptoms...

because I have no financial or emotional  help...I just don't know which procedure or how to decide what I can do....

Does anyone know of a  Dr. who preserved hearing and can do this as invasively as possible.  I am worried about facial problems which is the big push on brain surgery....but have heard of people getting migraines, neck problems, blance issues and facial paralysis...the Drs. cover their bases.  My family Dr. says always do least invasive with least symptoms...well what is that supposed to be? 

I do not know who I can believe.  Went to Yale, NYU, called Skull Base, have Anthem which is 40/60 for out of network and feel  frightened and very alone.

Talk to me!

[Joef]

Hey there .. I'm a connecticut person too (Fairfield county)... and I also started this "fun" at Yale .... you are NOT alone .. we are all here!    With your tumor still a small size radiation is still an option ! , also Mass general has a good rep of with lots of people having surgery/radiation there ...  Try to releax (I know its hard), but with a tumor of smallish size .. there is no hurry ...

note there is a thread where the "NE" bunch are getting together for lunch on April 29 .. ( we have done this several times already)  your welcome to come! You can see for yourself, we have ALL gone thu the panic stage  .. I we have all lived to tell our tale !  I could even give you a ride if you need !

[ShoeGalBecky]

Hi Irish. I am new to all this just like you so I can't really answer your questions. I mainly responding just to say that you are not alone. There many very intelligent people who are currently or have already dealt with many of the same issues as you. Hopefully someone in your area will be able to answer some of your questions more specifically.
I am in the same boat as you to being very confused as to what is the best treatment option for my situation. I am afraid of making the wrong choice and doing more damage than good to myself. However, I have found comfort in that this is non-cancerous. I am being treated at the University of Wisconsin Hospital and they have a large Children's Hospital there. I see children in strollers going outside for walks. They all are being treated for cancer. When I see them, I am so impressed by their strength and I am so thankful that my child is healthy. After that, I really don't feel too sorry for myself.
I feel for you that you are a single parent that can't take time off work. Talk to your doctors about your situation. Get a second or third opinion regarding treatment options until you find someone who you are comfortable with and who understands your circumstances.
Your family (like mine) is in denial about situation. Maybe once they realize the reality of the AN and your treatment, they will step up to the plate and give you some help. I know my husband treats me like this is something is just going to disappear and that it will not change our lives at all. He NEVER speaks of it and changes the subject when I bring it up.
At any rate, I wish you the best and I am sorry not to be able to give you any answers to your questions. I am a newbie but there are plenty of others with far more experience and knowledge than me.

[flier58]

Hi Irish,
Please don't feel alone.  There are many of us on this site that will keep an eye on you, share whatever we've learnt along the way therefore feel free to plug in pretty much 24/7 someone seems to be always checking the site including Europe.  My 2 cm AN is also touching the brain stem but my symptoms were very mild (mostly sensation in the lips,gums,tongue).  I had CK done in Nov. and did not lose any workdays except those that I planned for my trip (I am from Chicago and went to Stanford).  I have a 4y.o. very active son and but I'm managing just fine.  The size of your AN allows you to consider all the options which is very comforting.  You will find wealth of info on this site including links to other sites, medical research and very real experiences of those that went thru it. 
Families often have a hard time to realise that symptoms of This bugger are very real and don't go away.  We often don't present visible signs - often just overly tired but who isn't nowadays.  Kids probably are even less emphatetic as one of the beauty of the youth is the feeling of invincibility (I'm sure you can remember it ).  Keep us posted, knowing that most of us went thru the initial period of panic, anger and disbelief but we all survived and inch or leap forward.
Best regards
Flier58

[jtd71465]

Irish211,

Whom did you see at NYU?  I had Dr's Roland and Golfinos for my January 10, 2007 surgery.  I had hearing prior to surgery but a present only have approximately 12% speak recognition hearing in my AN ear.  That's not to say you wouldn't have different results...not sure anyone on this board and in the medical community can "guarantee" anything regarding treatment for an AN, just the nature of the beast.

Keep looking on the forum, you will find people that have had similar experiences, find them and ask your questions.  Once your comfortable with your decision trust it and move forward...

If you need to ask me any questions regarding anything at NYU please send me an email at jdombrowski@comcast.net.

Best Wishes,


Joe-

[southjersey636]

Removing the tumor or letting it stay will probally be the hardest choice in life you ever take but if it makes you feel better I had mine removed at the age of 18 which is very young and I can say to this day that ya it sucks having some balance issues and not being able to hear out of my one ear but its not the end of the world. When I had my tumor removed I lost all my hearing but I was glad to know the thing was gone and to this day years later I moved on and ended up buying a motorcycle, partying just doing what any young guy in his early to mid 20's would do. If i had to go back and make the choice I would still do what I did and have it removed since the thought of it being in there scared me to death.

[Evan]

Since you are in Ct., you may want to try a few others in NYC.  Today I went to see Dr. Sisti at Columbia.  He does both Radiation and regular neurosurgery.  Based upon what he told me, if you do not have a tremendous amount of symptoms (in terms of loss of hearing, vertigo, headaches) and based upon the relative small size of your tumor, he may recommend radiation.  At least, since he does both, he may be able to give a fairly unbiased view in terms of both radiation and surgery.

I know that Joe saw Drs Roland and Golfinos who are excellent.  Also in New York you can check out the Cranial Base Surgery Center at Roosevelt, under Drs. Costantino and Dr. Sen, both extremely well regarded.

Finally, in New York Dr. Selesnick also comes highly regarded.

From what I have seen, every AN is somewhat unique in terms of its symptoms.  But we also know that it is slow growing.  Don't panic, do some homework, use this forum and try not to overwhelm yourself.  You will be fine.

Evan