Severity of symptoms pre-surgery

[geekmama]

I was diagnosed February, 2010 after going to my doc with vertigo.  I have now been to numerous doctors and have chosen Dr. McKenna and Barker at Mass General Hospital for my surgery on April 23, 2010.  My issue is how severe my symptoms are right now.  I've been reading these boards and it seems like many, if not most, of you have few symptoms before surgery.  I, though, had to quit my job as a high school teacher because the vertigo is constant and makes it very difficult for me to move around and I'm exhausted many times during a day.  I use a cane to get around for short distances and a wheelchair for longer distances.  I feel pretty much nonfunctional.  Is this normal for an Acoustic Neuroma?

I'm a little scared at the severity of these symptoms. Did anyone else have this and feel much better after surgery?

---------------
Aileen
Diagnosed 2/5/2010
3.2cm X 2.3 cm
Dr. Mckenna and Dr. Barker at MGH
Surgery scheduled for 4/23/2010

[Kaybo]

Aileen~
WELCOME - sorry that you have an AN, but glad you found us!  You have a good sized tumor so it is no wonder that you are having some symptoms!  Everyone's story is so different - there are some that have a HUGE tumor and NO symptoms and some that have a tiny tumor and can hardly function.  It is really about where it is located, what it is pressing on and how your body reacts to it!  I was a teacher also (& very young - 25) - I didn't have to stop teaching but I had a LOT of symptoms but I was just young, naive and BLOND!!    I had horrible balance and "stumbled" back a lot if I were in a group chatting (standing) but I just didn't think much of it!  I always wonder, now that I am older and not "invincible" if it would be different!  Please feel free to ask any questions of us on here or if you would like to chat on the phone, PM me your number!

K   

[ksiwek]

Hi Aileen....

I too just found out about my AN.  Our tumors are about the same size.  I have definite clumsiness which I chalked up to being pregnant.  I am sure some of the that comes from being pregnant, but now I know not all of it does!  I also have hearing loss and some facial numbing/weakness.  My doctors all said that symptoms can vary greatly regardless of the tumor size.  The good news is that you know the cause and are around the corner from being on the recovery side of the journey.  I feel that I notice symptoms more now, just because I know about the AN as well.  It's amazing what you can chalk up to pregnancy side effects...

Stay positive!  I have to wait to end of June/July for surgery....so I know how stressful it is waiting for surgery when you have symptoms.  Just make sure to keep your doc posted on any changes in symptoms especially if you have brain stem compression(per the MRI)!  If you would lilke to talk offline about dealing with the news, just send me a PM.  I can relate as I am going through it all right now too!

Hugs to you,

Kris

[ppearl214]

Hi Aileen and welcome.

well, as a "Bawsten Brat" (I'm on the Northshore of Boston), I can tell you that for this area, you are with the "cream of the crop" in local AN surgery with MGH/MEEI and Barker/McKenna.  They do fab work.

suggestion..... the week before your procedure, me (and jcinma) host an AN Discussion Forum brunch in Worcester. This link provides the details:

http://anausa.org/forum/index.php?topic=11640.0

Now, I can tell you that based on the RSVP's noted in the thread, there will be MANY that had their AN surgeries at MGH/MEEI.... and you will see firsthand how everyone is doing. As you are learning here.... "strength in numbers..."... and meeting these folks, face to face, in a very casual environment, may be of great info (and peace) to you as you can quiz folks about their treatments at MGH/MEEI.  Just a suggestion and would love to have you join us.  If interested, please note the RSVP there (as I need to keep a headcount for the restaurant) and hoping that by meeting these folks may just bring the comfort you need going into your treatment.

Again, welcome.
Phyl

[AIteach]

Hello,
I am also a newbie.  I was diagnosed in February 2010 and had gone to the doctor due to vertigo as well.  I am on wait and watch at the moment, but may be moving to treatment soon.  My tumor is only 6mm, but my symptoms include some severe episodes of vertigo, hearing loss, tinnitus and a fullness in my left ear.  (BTW- I am a teacher too.)  I have had to miss work days because I couldn't stand up and that certainly hasn't been good for my employment record.  (That is why I'm thinking of scheduling surgery for June)  I know of people who have many fewer symptoms with a much larger tumor.  As stated before, size does not matter.  At least you know that treatment is coming soon.  Hopefully you will have a lot of relief from your symptoms, after surgery.  Unfortunately there are no guarantees but, it sounds like you found a good surgical team.  I'll keep you in my prayers and wish you the best.  
Lauren

[Jim Scott]

Hi, Aileen ~

Welcome - and thanks for posting your question. 

Your concern is quite understandable but as Kay pointed out, these benign tumors and the symptoms they produce are different for each patient.  My AN was large (4.5 cm) and although I had definite symptoms, they were not as severe as the ones you describe.  My balance was noticeably off, I had stabbing pains at (what I later learned was) the AN site, my sense of taste had disappeared (and my appetite along with it).  In addition, I was unnaturally fatigued.  However,  within less than 24 hours of my AN debulking surgery, all of these symptoms disappeared.  Oh, I had some temporary (3 days) double vision, a 1-day headache and continuing fatigue, but they all dissipated within days.  I still tire more easily than I once did but I'm 67, so, despite my wanting to think I'm much younger, I have to factor in that reality.  As Phyl noted, you have great AN doctors and my guess is that you'll certainly be better after the surgery than you were going in. 

If you can make it to the N.E. ANA Discussion Forums brunch at Maxwell's in Worcester, Massachusetts at noon on Sunday, April 18th, you'll very likely find it to be encouraging.  I'll be there with my wife, the Lovely and Gracious Tina (her official title) so if you come, please introduce yourself....we'll be happy to meet you.  I have a very positive 'AN story' that I can share, if you're interested.  Besides, the food at the brunch is outstanding!

Jim

[leapyrtwins]

Sometimes big ANs cause small problems; sometimes small ANs cause big problems.  You never can tell.

The main thing - and it sounds like you've already figured this out - is to seek treatment when the problems interfere with your life (if not before).

My symptoms @ diagnosis were a feeling of fullness in my left ear and diminished hearing.  I also had balance issues that I was unaware of until my first visit to my neurotologist.

Good luck with your surgery.  You're in good hands.

Jan

[Sue]

Hi and welcome.

For some people, like me, my balance system started to compensate years before I knew I had an AN.  I have had very minor balance issues.  For some people, that doesn't happen and I think that it's just like a sudden shock to the system when your balance suddenly falls into the deep end.  You are left flailing around, struggling to maintain control.  As the other side begins to take control of the situation, the balance issues will lessen over time.  How long that is depends on the individual.  You may opt for some kind of vestibular therapy after your treatment.  I am so sorry this has thrown you out of balance, quite literally.  It's an awful feeling.  You may want to read this:

http://www.hearinglosshelp.com/articles/balancesystem.htm


Sue in Vancouver, USA

[hendi51]

Aileen, my husband was diagnosed in May of 2007 with his AN. He staggers like a drunk person because his balance is so bad, he has lost all his hearing in his left ear and now he has spinning vertigo. He was originally told that Gamma Knife was best for him but now they are leaning toward surgery because of the spinning vertigo. However due to other health problems, he just had stents put in his heart for the third time last week, he is still living with his symptoms. My understanding is that the symptoms are caused because of the location of the tumor. Lynn's started as far in the IA as it could and has quadrupled in size since it was found.

[geekmama]

Thanks for all of your information.

I started to read up on antivert/meclizine and am taking that daily and it seems to help some.

I guess I'm just going to stay home mostly and hang on until surgery, CAN'T WAIT!

[skamper]

I'm sorry you are having such severe side effects at this time.  I am scheduled for my surgery this Friday and am hoping I come out of it okay.  I hope you will be better after your surgery as well.  I have occasional off balance moments, never fallen though.  I feel wonky headed a lot lately.  The ringing in my ears is getting worse.
I hope you do well and be sure to keep us posted.
Welcome to the forum!
Susan

[mandy721]

Aileen,

As others have said there is no normal for  symptoms.  My husband's symptoms, which he had for years, were partial numbness of the lips and tongue and a gradual loss of hearing in his right ear.  They didn't get in the way of his daily life, so he lived with it and finally after me and our daughter bugging him for 5+ years, he had his hearing checked last May and was diagnosed with a large AN.  Coming out of surgery, Ken had more issues than he went it with and 7 months later, he is in pretty good shape, but is dealing with the facial issues and ssd.

I have read so many good things about your surgical team and know that you will be in good hands.  They are one of the teams that we looked at, but decided to stay local.

Take care,
Miranda

[moe]

Aileen,
Welcome to the forum.
Hopefully after your surgery, those pesky symptoms will be a thing mostly of the past.
AN's can be so sneaky. I had a med-lg one against the brain stem with insidious symptoms for many many years.
I'm sure you'll feel better after the surgery and recovery. Hang in there.
So you "can't wait" about brain surgery.   Isn't that the truth. Only on this forum... Just get the thing out so you can get back to your life.
Keep a calm/positive attitude, you've got great docs. Trust in them.
Maureen

[Lynn Mc]

Aileen,

Hi & welcome.  Hopefully when you get this behind you you will start feeling better.  Also wanted to let you know I had the same surgeons & really love them both.  I am 9 weeks post op and doing really good.  I am probably back about 90%.   Fatigue being my biggest complaint.  I also reached the point where I said "CAN'T WAIT"!!  It sounded pretty absurd BUT!!!   Good luck.  My thoughts and prayers are with you.

Happy Trails,
Lynn