ANA Discussion Forum

Post-Treatment => Headaches => Topic started by: aciccare on September 05, 2008, 04:21:19 pm

Title: Headaches, Balance, Dizzyness, Tinutis
Post by: aciccare on September 05, 2008, 04:21:19 pm
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
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: Kaybo on September 05, 2008, 04:27:45 pm
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!!!   ;D  I still have a lot of balance issues, but mainly when I am tired!

K
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: leapyrtwins on September 05, 2008, 10:12:49 pm
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
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: aciccare on September 06, 2008, 06:28:03 am
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
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: Jim Scott on September 06, 2008, 03:02:52 pm
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
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: bltfollis on October 21, 2008, 07:09:56 pm
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
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: Captain Deb on October 23, 2008, 11:46:38 am
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(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: JudyT on January 25, 2009, 09:20:17 am
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
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: Static on January 25, 2009, 04:11:29 pm
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!
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: aciccare on January 26, 2009, 07:23:06 am
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 :)
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: yardtick on January 26, 2009, 09:10:26 am
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
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: cin605 on January 26, 2009, 06:08:02 pm
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
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: Captain Deb on January 30, 2009, 10:32:05 pm
Cindy--just a question--how do you have the crystals reset in your middle ear?

Capt Deb
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: golden on February 05, 2009, 07:25:23 pm
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!!!
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: MamaGina on February 22, 2009, 01:22:33 pm
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. 
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: JudyT on February 23, 2009, 11:24:49 pm
I tried an antidepressant and all I got was FAT! I'm 4 years out from CK.....I am totally out of solutions other than just doing what the day allows......listening to my body....doing ALL the good things that I know how to do......if it works.....GREAT if it doesn't......go to plan "B"......if that doesn't do it......go to bed or here! Just flat don't know........some days are good.....some aren't. This is the only place I can find understanding and perhaps new ideas.......and HOPE one day the answers will come. The contributers here are as good as it gets.......none of my doctors get it.....kids etc. don't either sooooo here I am.  Perhaps a glass of good wine.....a warm bed......music are in order!

Judy
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: golden on February 25, 2009, 08:36:46 am
Judy,
I know how you are feeling!! I have been on anti-depressants since being a couple months post (I am know at 23 months). When I took a short term medical leave from work to try and figure out the new me I realized that anti-depressants alone were not enough. I found a individual therapist (she is wonderful) that is helping me cope with all the different emotions that I am going through. I thought hey the doctors removed the tumor so in a few months I would be back to my old self. Well I realized that the old me was left on the surgery table and I was a totally diffrent person physically, emotionally. Somedays I really miss the old me but, I am slowly starting to accept the new me and I can have a happy life being this new person that I am becoming. Oh believe me I still have my down days (we are entitled to grieve for our old self) but, I take one day at a time because life goes on no matter how we are feeling.
Maybe going to counseling to help deal with the emotional side of a AN will help. You will be in my prayers. Always remember here we can all relate to what you are going through and are always willing to listen and give what advice we can.
Golden
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: JudyT on February 25, 2009, 10:13:01 am
Hi Golden.....I do go periodically to a behavior therapist and she is great. I have been going to her since my husband died in'95. She has the same philosophy that I do.....gotta have a plan! Trying to fly by the seat of my pants doen't do it. The only thing that is really dibillitating to me are the headaches......the rest I can do. When my husband of 38 years died I had to re-invent myself. I married at 17....never having lived on my own, stay at home mom and making a "nest" for my husband and chidren. I have been re-inventing myself once again after CK. I know how to do it just not successful all the time. Accepting my circumstances is my dilema.....I want more and can't always acieve it.......Oh well......gotta keep trying.
Thanks for the encouragement.......

Judy
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: stoneaxe on February 25, 2009, 12:21:19 pm
4 years out from radiosurgery I was on the downward spiral. All the same symptoms. I had tried PT therapy both administered and on my own....boring and ineffective. Hardest part was frequently being unable to drive. I had gained weight because of inactivity...everything was headed in the wrong direction....then this happened.
http://anausa.org/forum/index.php?topic=8379.0

I'm on a low dose of Topomax for the headaches...does the trick for the most part. I still get them but less frequent and usually less painful. Still SSD obviously with constant tinnitus (my own little brass band) but I deal with it. My advice for balance is to find something you can enjoy doing and then push yourself harder than you ever thought possible. The great thing about standup paddleboarding is that it doesn't hurt when I fall so I was able to push, and push, and push.

I've lost a lot of fat and added a lot of muscle. I look and feel better than I have in 20 years. It's not only been effective in helping my balance but in making me healthier overall. I'm 50 and feel 30...all in less than 1.5 years. Everybody is different and this isn't going to be everyone's cup of tea. But we all can find something that will help us to some degree. My biggest epiphany...relying on the doctors alone to get you back to normal is not going to work. It's mostly up to YOU.
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: JudyT on February 25, 2009, 06:30:07 pm
Absolutely.........we have to be accountable....sometimes I am boosted by the fact I tried....maybe didn't succeed to the level I wanted but I tried. Just sitting idoly by doesn't change anything. Yesterday, I got a lot accomplished......today exhausted....long nap helped. Headache, nausea......dizzy......what's new? Can't let it get to me.......tommorrow is another day....try to make it better is all there is.

Judy
Title: Re: Headaches, Balance, Dizzyness, Tinutis
Post by: cin605 on February 26, 2009, 05:34:28 pm
Cindy--just a question--how do you have the crystals reset in your middle ear?

Capt Deb
Sorry it took so long to respond to this Capt.
The vestubular rehab woman i have is wonderful she has vetub.problems herself so she undeerstands more than any other Docs how i feel.anyway she laid me on my back W/ my head hanging over the end of the table,tilted my head up to right purposely bringing on the vertigo.The to the left.It was really grueling at the time but it did help w/ alot of the vertigo.
Now....if i could only get my balance to co-operate.also i  am having eye tracking issues.