5 Months 1 week post surgery and fruistrated.

[kzanana]

Well I was hoping to be better at this point. Still have terrible headaches in the back of my head several times a day. Ibruprofin seems to work OK. My head still "swims" with any movement and my balance seems to be getting worse instead of better. I do have good days but lately, more bad ones. I am going to fly for the first time this month and will admit I'm a little nervous about the pressure on the plane. I still have a difficult time even bending over and standing back up without staggering all over. I still look drunk when I walk. I have called my neurosergeon but what can he do ?? I'm not due for my second MRI yet and it's all in my head.I have No balance nerve anymore and my right side seems to be taking it's time compensating for it.  I sure don't want to even think something is wrong. I just want to be done with the pain, discomfort and all this other balance stuff. I just want to feel better !!!!!

[CHD63]

So sorry you are still dealing with bad headaches, but glad the Ibuprofen seems to be working for you.  I am so thankful I only have to deal with the occasional headache now.

As for the balance, as I am sure others will chime in ..... for some of us it takes a long time to not feel like a drunk and others have stabilized much more quickly.  After 14+ months, whenever I am tired I still walk like a drunk.  It used to really get me down that I did not seem to be getting better.  Now I can usually laugh and say, "There I go again!"  I've had to develop a thicker skin for when I am out among strangers.

..... and remember, there are many plateaus along the way so never give up ..... progress still occurs, but sometimes in spurts rather than gradual all of the time.

Clarice

[Jim Scott]

Kathy ~

I doubt that anything is wrong.  AN surgery recovery can take a lot longer than any of us going through it would like.  It seems as if you're no exception, even though I wish you were.  The headaches will likely subside, but I'm sorry that no one can honestly say exactly when that might happen.  Balance issues are always problematic and it takes both time and practice to regain decent balance once the nerve is gone.  Balance exercises can help, although they can be difficult to accomplish when you're starting out and have almost no sense of equilibrium.  I was blessed with a good recovery but found that regaining near-normal balance took months, not weeks, and I never regained 100% of my balance ability, although it is quite serviceable in most situations.  I'm almost afraid to mention the word 'patience' but it is a requisite to helping one deal with AN recovery, which can be maddening long and sometimes, difficult.  I'm sure you're fine, just frustrated - and you have good reason to be.  Of course you 'just want to feel better'. That is a perfectly normal response to the problems you're dealing with.  Please know that many good folks, most of them AN patients, will be thinking of and praying for you as we journey with you on your road to recovery and normalcy. 

Jim

[28Lisa]

Its been 19 months for me and counting and theres slow improvement so hang in there

[MAlegant]

Hang in there.  It is incredibly frustrating to feel that you're getting worse and not better.  I'll bet most issues will clear up on their own, but if not, call the neurosurgeon or whoever is following up with you.  So sorry you are going through this.  I hope things start to improve soon.
Marci

[bell]

Hi kzananna:
  Join the club, I am sorry you feel like I do.  I am 5 months post op and it is getting depressing because I am still having "issues."
My head and face are still tender to the touch.  I do not scrub my hair on AN side because it hurts.  My face is still very tender when I press on certain spots.
I still wear eye bubble and have horrible headaches.  My neck really is stiff and still seems to be swollen.  Almost everyday I have a dull ache.  I have horrible headaches about every 6-7 days, I took Percocet last week and had to sleep for 4 hours, finally went away but drained me for 2 days.  Balance is pretty good, but I do not move or get upreal fast.   My face stills swells every cuople of days and it is very uncomfortable.  I am trying to stay positive but it gets hard huh?   I can not wait until I can say I feel great.  I am getting better every week.  Let's keep our chin up ok, I was wondering the same thing "is this normal? "  Sorry to gripe.
   About flying, I am a Flight Attendant and flying is pretty good.  I just finished my first full month,  Had many trying days.  I think you will feel the pressure but it isn't to horrible.  I hope you are going on vacation!!!!!  Take care   and good luck, keep  posting on your progress.
  Bell

[Kathy M]

I'm sorry to hear you are still having headaches and balance issues.  I have not experienced headaches since the first 2 weeks post op, so I can't comment there but hope you find relief soon.  But...regarding balance.  Did you receive any rehabilitation after surgery?  What about specific exercises for folks like many of us who have had their vestibular nerves removed on one side??  It took me a good while to feel good enough to work on the balance exercises, but they really do make a big difference, at least for me.  Patience is very important as you do them, but they help retrain your brain to adjust to life without all the parts it was used to!  I attended an AN support group a while back and the speaker was an expert on balance disorders.  He said that even without exercises post-op, your brain will re-teach itself, but sometimes it teaches itself wrong.  This will perpetuate balance issues, but even if it has not learned the right way, with the right exercises, it can learn again. 

If you've already been down this road...ignore all that!!  But I would be talking to your neurologist or neurotologist to see if they can identify something that will help.  I know you must be so frustrated.  The recovery road can be long but hang in there!  Baby steps...

Take care,

Kathy

[jlamborn]

My migraines started about 1 month before surgery and continued after and got progressively worse where they would sometimes last up to 3 days, with Tylenol or anything else over the counter hardly touching it.  I mentioned this at my 1 year checkup with my neurosurgeon and got referred to a headache doctor (not sure what they're called).  Gave her my history and how my headaches felt and whey they seemed to be worse, better, etc.  Mine seem to go somewhat with the weather.  She gave me 3 different medicines to try to see which one worked best.  I ended up with Imitrex 50 mg tablets.  I can take one and the headache will subside within 30 minutes, not knocking me out, but feeling like there's a "blanket" over my head and still fully able to work.  Only rarely do I have to take a second dose after a couple of hours if it's still bad.  These have been a lifesaver for me. 

I still have my balance issues, but after 2 1/2 years, it's as good as it's going to get and not too bad.   People used to see me wobble at work and lose my balance if I was turning around, or walking and having to turn my head and end up walking toward the wall instead.  What can you do?  We just laugh about it; things could be much worse.  I'm so grateful that my left side has compensated as well as it can.  I just got a better attitude about it because basically there's nothing we can do but deal with it as best we can.  If I start to get up from a sitting position and lose my balance and sit back down, they just do it with me and say that we needed a rest anyway.  They've been great, and my family is the best.  Don't get me wrong; I still have my bad days and a "why me" thought, but then I remember that this was benign and I think about someone at work that was going through breast cancer diagnosis / surgery and radiation at the same time I was going through my tumor diagnosis / tumor removal surgey.  That puts things back in perspective for me.