Headaches, Balance, Dizzyness, Tinutis

[aciccare]

Hi fellow AN veterans . I had my neuroma removed in April 08. After a period of a month or so I was progressing but then the headaches really kicked in. I have been on steroids 2x, Mechlazine 1x for Veritgo like symptoms, and the ringing in my ear is so loud it drowns out hearing on the good ear.

This continues to be the hardest thing I have ever gone through and the doctor says I am one of the lucky ones. The physicians at Thomas Jefferson Hospital in Phila have been great.

Another really frustrating thing is the balance issue- I have fallen several times, comes out of nowhere and my left leg
'disappers." I have been doing vestibular exercises for 2 months but the balance and dizzyness continues. The dizzyness is constantly present with the Tinutis, its quite a cocktail.

If anyone has  / is going through this I would love to hear from you.

Anthony

[Kaybo]

Anthony~
sorry you are having to deal with these issues.  Just curious, why does the doctor say you are one of the lucky ones?  I thought that we were all LUCKY/special to have one of these in the first place!!!     I still have a lot of balance issues, but mainly when I am tired!

K

[leapyrtwins]

Anthony -

you mention that you are doing vestibular exercises, but has your doctor suggested referring you to a physical therapist?

I did vestibular exercises on my own pre op, but post op my doctor gave me the option of continuing the exercises on my own or referring me to a PT.  I opted to continue on my own because I was making good progress, but lots of AN patients go to PTs.

Jan

[aciccare]

Hi Jan. I have been working with a PT for 2+ months now and I feel comfortable working at home. thanks for your response.
anthony

[Jim Scott]

Anthony:

I'm sorry to learn of your troubles with headaches, disequilibrium and intense tinnitus.  You have my sympathy and prayers for getting better, soon.  Like 'Kaybo', I'm puzzled as to why your doctor thinks you're "one of the lucky ones".  Frankly, considering your suffering and the fact that other post-op AN patients experience none of these problems, I find that statement to be both ignorant and insensitive, which is a toxic combination.  My advice is: don't give up.  You aren't married to your doctor.  Seriously consider consulting another physician who has a better grasp of Acoustic Neuromas and the complications that can accompany their surgical removal.  Again: you have my hopes and prayers for better days ahead.

Jim

[bltfollis]

anthony ,hi my name is bill and my surgery was 3mos ago,same problem balance,dizzy,vertigoand terrible buzzing i also think we have something in common our surgeon @jefferson  hosp because the two man team its their specialtie unless one of the other neursurgeons did it,do the initilals T.W and J.E sond familar , my pt has been very helpful i accredit her for where i am know but lots of progress to go keep plugiging along

[Captain Deb]

Anthony,

I have certainly beeen in your shoes.  The only way to retrain your other balance systems to compensate is to force them to do so by getting out and walking regularly and that, for me, triggered my headaches.  This really delayed my balance compensation and my physical therapy sessions usually ended up with me going home crying with a splitting headache.  I finally found out that I was suffering from post-craniotomy migraine syndrome  and was put on a drug regimine which included several preventives which enabled me to get outside and be active again which certainly imroved my quality of life and along with that, my balance.

My advice for you would be to get your headaches under control first by seeking help from a headache specialist--I went to a headache neurologist at a headache clinic who really helped me. Isn't there one at Jeff run by a Dr Silberstien? Look into it.

Capt Deb

[JudyT]

Hi...........Headaches.....balance.....dizzyness......tinnitus.........sounds like me. I am 4 years out from CK.....and still having these issues. They are annoying. energy consuming and fearful of the future. When I feel better I tend to overdo....to catch up.....then they are back. It's an ongoing situation with seemingly no answers. For me fatigue is also annoying.
I am sorry you are experiencing these things...........it is frustrating to say the least.

Judy

[Static]

I totally understand when someone says the tinnitus interferes what they hear in their good ear because that's my problem also.  I had my surgery at Jeff too, wondering if there is a pattern......  It's very frustrating and I haven't been able to hold down a decent paying job since my surgery.  Every day is a struggle for me and I have also been diagnosed, since the surgery, with fibromyalgia.  Dizziness comes whenever it wants, I don't know how much more PT I can stand.  I also use a Wii Fit and when I try to do the balance exercises, it's basically a joke.  That thing shows exactly how much I waver and can not stand still not matter what!  Currently hoping to find a way to ease the tinnitus.  It gets worse when the weather is changing, maybe I should try to be a meterologist!

[aciccare]

Karen, thank you and everyone so much for opening my eyes to the pain and hardships we are all dealing with. My boss said in my review that I could not handle pressure situations. I think knowing your headed to Brain Surgery ( yeah Brain Surgery ) and that you probably will experience a loss in hearing, balance, headaches, facial drooping etc, and still have to hold your end of the family up, that is pressure. My Deloitte supervisor, a rookie, probalbly never dealth with life and death issues as I have.

I pray for all of us, that we find a happy medium amongst the daily challenges presented and compounded by our health issues. Me, well, I just finished 3 days of infusion therapy for Headaches and Inflamtion, and I am sick of feeling drugged.

Best Wishes,
anthony

[yardtick]

Gees Anthony I thought I was the only one who received a rotten review.  I was so livid when I received mine.  I got very annoyed and I countered back to my manager.  She claimed she "understood", since she suffers from migraines.  Well I too suffer from migraines, but a brain wreck is a whole different ball game. 

I worked for 17 months after surgery, with headaches, facial pain, balance issues, fatigue, depression and vision issues.  I honestly felt that my review didn't add to my coping skills.  I really felt defeated.  It should be outlawed to make negative comments on a person's review when they have documented medical issues.  Last January my self esteem went down the toilet.  I felt like the "bosses" were waiting for me to screw up. 

Oh well that was a year ago, nasty memories that's for sure  Coping is letting the negative go and concentrating on the positive.   

Wishing you well,
Anne Marie

[cin605]

Nope...you are definatly not alone.I had my surgery in 6/08 i fall down,get major migrains ,tinnitus that increases as the sound in the room does i can't bear to have the fan or humidifier running or any noise even scooping a spoon funn of soup from the bottom of bowl annoys the crap out of me.
I have been doing vestub.rehab for 3 months & exercise on my own.I had the crystals reset in my middle ear that helped w/
alot of the vertigo.Its all just so exausting.
I had acleaning buss. i had to basically give away.
some days i am rewally nauseous.
It seems i will just start to think i am coming out of it & it returns w/ a vengance.
Doc. says its all par for the course.
Hang in & know you are not alone.
Cindy

[Captain Deb]

Cindy--just a question--how do you have the crystals reset in your middle ear?

Capt Deb

[golden]

I went back to work 4 months after my surgery. I too have the same issues headaches, balance ,dizziness, tinutis one sided deafness ect. ect. I worked for about 12 1/2 months as a receptionist, in a out patient surgical center. Everything with my boss was great compassionate and understanding, so I thought. After about 10 months of being back at work she started nit picking wanting to know what my problem was. I thought to myself, what a stupid question. DUH I had brain surgery. After dealing with her nit picking along with all the changes I had to accept post surgery I decided to take a medical leave of absence before she kicked me to the curb. On Jan 29, 09 I received a letter from my administrator stating that my 6 week medical leave had expired and at the end of the month all my benefits would be terminated. WOW, I felt like I was being thrown under the bus. Luckily I know my rights and protested. I have 6 months of medical leave. I have also, decided to apply for S.S. benifits so I can take the  time I need to recover and adjust to the changes that have occured post surgery. Being a single mother of 2 young children (the only finacial provider for my family) and trying to work and recover was a night mare. I am glad(but, scared) I made the choice to stop working and focus on ME.
 It appaules me to know that even individuals in the medical field can be so unethical, uncompassionate and ruthless!!!

[MamaGina]

I, too, have these same issues, plus a few more! For the tinnitus, try not to be in very loud environments: that seems to make it worse.  Walking, exercise and housework all make me feel worse, too.  It's pretty daunting.  I'm thinking an antidepressant may help-it's the only thing listed for coping w/Tinnitus.  The meclizine didn't work for me, but if it works for you-keep at it!  It's been such a long time for me, I think PT is useless now (I did vestibular rehab a while ago).  I think I'm as good as I'm gonna get, but anyone who is earlier in their post-op stage should continue.  The other nerve will compensate as much as it can, I suppose.  Headaches stink!  Just keep trying different coping methods until you find one which works.