Just not gettin any better :(

[susierg]

 I went last week for a follow up MRI after middle fossa surgery in July of this year. I continue to have major "Wonky Head" and balance problems.  So much that I am stilll only able to work half days.  My MRI results were good....tumor gone!  They did tell me that my cochlea was inflamed and put me on a round of steroids.  They are hoping that the steroids will help.  As the inflamation could be a part of it, I guess, I have had these problems for almost four months now.  I have taken vestibular therapy and even started taking yoga.  I have even had my "energy healed" a couple of times, which is a very unusual ritual, but actually felt a little better afther the first session.  After the second, had one of my worst days.

When does it get better???  I am beginning to get so frustrated and depressed.  I work on my balance almost none stop and nothing seems to help.  Sometimes I feel decent in the morning, but as the day goes by, things regress.  I almost feel as off balance and wonky headed as I did just after surgery.  Before returning to work, I would have good days and bad days....now all I seem to have is bad days.

Would greatly appreciate any input from anyone who has gone through this.  I'm considering checking into acupuncture as I'm willing to try anything to make this feeling go away!

Thanks in advance for your listening, suggestions and advice.

[LakeErie]

I was troubled with balance and other issues for 7 full months after surgery. Walking with head movements helped, but I did not overdo it. I did exercises morning, afternoon and night with rest after each session. We cannot force ourselves to recover, or to recover faster, than our brains and cranial nerves are able to. Feeling frustrated and impatient just adds stress to an already difficult process. Recovery isn't a race, it is recognizing small improvements and seeing progress. The rate of recovery varies for each person.
I am now just over a year and feel fine, though I still have moments of difficulty and experience wonkiness at times, but it  is very minimal compared to what it was a year, and even 6 months,
ago. Cranial nerve recovery can take up to 18 months according to both my surgeon and ENT. I am sure you will improve with time, most of us do. Good luck

[CHD63]

LakeErie is absolutely correct ..... much as we'd like, we cannot hurry the recovery process.  We just have to listen to our individual bodies and not push beyond a reasonable amount.

One thought ..... try eliminating all caffeine (coffee, colas, and yes, even chocolate) and see if it improves.  It makes a huge difference to me.

Many thoughts and prayers that the "wonkies" will soon pass!

Clarice

[chloes mema]

One thought ..... try eliminating all caffeine (coffee, colas, and yes, even chocolate) and see if it improves.  It makes a huge difference to me.

Oh Clarice

I didn't want to hear that... eliminating all caffeine. 

Funny, my daughter told that exact same thing to me this morning when I told her how bad my "wonkie head" has been lately; can't tell if it's getting worse because of the Gabapentin or just acting up on it's own but I know I need to get back to a healthier diet regardless.  I don't know which is going to be harder to give up the coffee or the chocolate!   

Thanks for reminding me.

Susierg

Hope your feeling better.  Can't force your body into something it's not ready for, unfortunately, the healing process is a long one.  Take your time and hopefully it will resolve itself.  I know how you feel, I'm so tired of not being totally healthy I could scream but then I stop and think this is the "new me, new reality, new normal". 

Karen 

[susierg]

Thanks Ladies.....I guess deep down I know I'm just being impatient, but it concerns me that I was seeing some slow improvement and now everyday is a bad day.  For instance, this morning is one of the worst days I've had since surgery.  My head feels like its full of helium and I need bumper pads to to get around my office.  Emailed my Dr. again this morning and he once again tells me to be patient.  I made an appointment with my yoga instructor for this afternoon to have my energy healed again.....and called an Acupunturist and set up an appointment for next week.  I'm  willing to try anything!!! 

Did any of you have your wonky head/balance get worse after getting better??

[chloes mema]

Yes, I was doing very well after CK for the first four months, a few bad days but over all very well.  Then I lost a big chunk of hearing (word recognition is now only 7%), balance / dizziness got worse, and now I have the facial spasms.  BUT each "bad" situation has / will get better (except for my hearing) but it takes time.

Sounds to me like you made good choices today by taking steps to help yourself get better.  I, too, have used yoga and other modes to improve my current health situations.

Again, good luck, keep posting, and keep reading the forum postings. 

Hang in there!   

Karen

[lrobie]

Susierg ~

I am right there with you, so please don't feel like you are alone.  I thought I would show more improvement by now.  There are days that are worse than others.  That's a great description about feeling like you have helium in your head.  So then while you walk, your balloon head feels like it's just floating in space.  I hope and pray that we both can look back at this and say that we should have been more patient.

Clarice ~

Do you have to cut out all caffeine?  I usually drink 1-2 cups of coffee a day.  And, maybe I should give away that Halloween chocolate!

Lisa

[CHD63]

Lisa .....

I have chosen to drink my 1 1/2 cups of coffee, knowing full well it is a trade-off. I'd rather get my jump-start first thing in the morning and be extra careful.

Clarice

[chloes mema]

Clarice

After reading this post I decided to limit myself, also, to two cups and cut back on my cafe con leches.  Can't give up every thing for a lump in my head 

Karen

[susierg]

Thanks again ladies for all the advice....

Lisa,  I have an appointment with an accupuncturist on Monday.  She says she can help me...we'll see.  I'll let you know how it goes.

Everyone have a safe and happy thanksgiving!!!

Susie

[maryh]

I was feeling stalled out in my recovery 9 months after the last complication I had cleared up. At that point, I was feeling like my energy level was not improving.  So I started getting acupuncture to see if it would help.  What a positive difference it has made!  So I praise you in going forward with it.  It has helped me alot.

You may be overtaxing your system and that is what is causing your wonkiheadedness.  I'd scale back everything you are doing--the exercises are as taxing as regular daily activities, so in a sense you are adding alot to an already fragile system.  Don't feel bad or like you are regressing if you scale back a bit.  You are doing more than what your body can comfortably handle.  So reducing the load can help.  It seems like a constant push and pull--feeling good, adding a little bit more, then feeling bad because it was too much.  Going to a more comfortable level and staying there will help you gain strength and confidence to add more back when you are ready . 

[opp2]

To steal a quote from someone some where,

Rome wasn't built in a day. Now I don't say that to be harsh, but to remind. Most of us have had these tumours for years, insidious little rascals, growing, crowding, interfering with our lives. Once we have them out, if we haven't been fortunate (LOL) enough to have had balance and wonky head issues for years, we have to deal with the sudden onset of complications from having the balance nerve cut or radiated.

I sincerly hope you feel better every day, and wish you patience and strength to hang in there. It's gonna take some time it seems.

[Syl]

Susierg,

My first year was hard for me. I had wonkihead really bad. My head hardly ever felt clear. As the day progressed & I felt tired, the feeling got worse.

It was around my 3-year anniversary that I felt I could say I felt fine. Most days are good days. When I'm out at the mall or some noisy place like the mall, I get tired and wonkiheaded. Noise just does that to some us AN folks. Usually, I need to rest for a bit & that takes care of that. Everyday, at the end of the day, I still get wonkiheaded. This is part of the new me. The wonkihead is part of my life, but it's not there all the time. Mostly when I'm tired.

Don't get discouraged. I does get better.

Syl

[rosemariekatarina]

Hi
I have wonki head everyday... all day and all night.  It drives me insane.  I am one and half year from my surgery in 2011 and I pray everyday that someday this will end.  I went right back to work, did physical therapy until there is none left anymore.  I do know that if I push myself or I don't rest enough I will get worse and feel like a bull in a China Closet.  I am a sixth grade teacher and some days the noise and lights and people are too much for me.  When I read all of your posts I can see I am not alone.  Thank you for that.   I am sorry I don't have much advice, but I do know that I am not a crazy person, AN had changed my life significantly. 

[Ned]

Nine years post FSR and the balance problems come and go.  One thing I can count on, if I fail to get 7 or 8 hours of solid rest at night I KNOW the next day will be challenging.  Good luck.