NEW HERE .. AND NEED OPINIONS PLZ On balance

[MISS CC]

Hi All , It has been 17 months post surgery . Many days I feel like no one understands and then I found you .. My Balance is pretty bad .. I have between 30-35 percent .. I feel like I am walking in a fun house most days where the floor is moving ..up /down/side to side .. It makes me nauseous and dizzy .. I fall often and get hurt .. many black and blues and cuts ..

I went to months of vestibular rehab ( I would say 4 months 3 times a week) until I developed such painful bursitis on my shoulder  I had to stop ..and My doctor said in his many years ..I am his first failure ..

so my question .. did anyone with horrible balance issues ( I use a cane at all times I leave the house) .. get better after 18 months post op ? I wonder if this is forever .... and personally this is not living .. So I wonder if I will have any improvement ..

things I no longer do because I cant :

drive a car

walk down stairs without holding on

any sports

watch move in theater

walk without cane

walk straight

read a book

pass a field sobrierty ( I dont drink but I cant even put ONE foot in front of the other with out falling)

work a job

have a day without headaches

you get the idea .. any opinions would be welcome ..thx

[Jim Scott]

Miss CC ~

I'm so sorry to learn of your intense balance issues, which are negatively affecting your quality of life.  It's unfortunate that you were forced to cease vestibular rehabilitation but frankly, if 'months' of rehab didn't have much effect, one has to question the wisdom of continuing, even without the bursitis issue.  I'm not a doctor and my post-op balance is 'serviceable' so I regret that I cannot offer any substantive advice.  I trust that some of our members who've been able to surmount balance problems will be posting to this thread with their advice.

I do wish to offer you my welcome to the AN discussion forums and my hope that you'll be able to use the support you'll find in these forums as a way of finding some solace as you deal with your vexing balance problems. 

Jim

[MISS CC]

Thanks Jim , I appreciate the input .. My doctor wanted me to continue therapy but I do agree with you .. I dont think more months would have helped..  after testing they told me I have central vertigo as well as the normal vertigo associated with the AN surgery .. I am off all meds for some time .. I hoped this would help .. it didnt ..

[cin605]

Hello Miss CC.....nice to meet you,I am Cindy and had surgery 6/2008.
i did vestub rehab for a year .....i ban drive now but not long distance.It sounds like you have the sensory overload going.
I have not attempted the movie theater but have read many stories.
You can try some eye tracking exercise at home.good one is placing an index card taped eye level on the wall...now sit about 5 feet away and turn your head side to side while trying to keep your eyes on the index card.Do this several times everyday.The senses have to get used to your vestub being screwed up.Eyes are a big part of balance.
Mine is better then it was some days its just not there and i also can not drive.
of you look online ypu will fing more exercises to do at home that are not over whelming.
Best of luck w/ your recovery.I have learned not to plan any thing and take one day at a time.

[CHD63]

Welcome to this forum, Miss CC .....

I am so sorry you are having lingering severe balance problems, along with headaches.

I have had two retrosigmoid brain surgeries (one on each side) and as a result I have no functioning vestibular nerves on either side.  I, too, struggle with balance issues but not to the extreme that you are describing.  I do not have headaches like you do so that greatly adds to your difficulties in getting sufficient exercise.

Just a couple of comments that I found helpful along the way.  I know caffeine contributes to my unsteadiness ..... unfortunately that includes chocolate!  Also, I have found that there are many medications that have dizziness as side effects, including almost all pain relievers (even over the counter ones).  You might check with your doctor on trying to find something for your headaches that is not adding to your disequilibrium.

Not being a doctor, I do not know what central vertigo means.  By all means check with your doctor, but I know that for vestibular retraining, walking is one of the best ways to retrain the brain ..... but it must be done safely.  Have you tried a treadmill?  Or does it make it worse?  If you have a sturdy walking partner, go to a mall early in the morning or late at night (fewer people) and walk.  For a long time I walked hanging onto my husband with one arm and using a cane in the other hand.  Gradually I gave up the cane and most of the time his arm.  At night or on uneven surfaces I still require assistance but I have much more confidence now.

I did not drive for a long time thinking how can I drive when I cannot walk.  However, when my husband insisted I try it in a safe place, I discovered that when I was not moving it was not an issue.  At first I had to be very careful when turning my head to check for righthand traffic.

My instability returns whenever I am very tired or very stressed or have other health issues.  I off and on have problems with nystagmus (eye jerking), which makes reading a challenge.  Usually if I rest awhile it lessens or goes away.

I am retired so going back to work has not been in the picture.  However, I think I would be very stressed if I were to have to return to teaching (my lifetime career).  However, I still do considerable accompanying work (piano) and playing the organ on a substitute basis with virtually no difficulty.  I do much volunteer work using the computer.  All this is to say, you may not be able to return to a previous employment, but there may be new ways to provide income that you can handle.  Several friends on this forum have applied for (and received) disability, if it should come to that.

Best wishes and please know that I care.  Clarice

[Brewers7]

Miss CC,
     I am sorry to hear about your struggles primarily because I can identify with most of them.  I had terrible double vision, vertigo and nausea for nearly 7 months.  Gradually the double vision and vertigo subsided but I am 20+ months post op and I still have balance problems and occasional nausea.  For months, I could not read at all.  Then I went through a time when I could read for short periods. I have read every thing I could get my hands on this summer.  The doctors have explained to me that my early complications delayed my recovery and thus, the "one year to eighteen months" rule was not absolute.  Last summer I could barely ride in a car, so I nearly gave up on the idea of driving.  Ultimately my husband coaxed me into driving the golf cart around the neighborhood.  I learned that much of my problem was a lack of confidence.  I began driving locally in my small town in  February (roughly 13 months post op).  Now I drive just about anywhere but I do not drive at night if I can avoid it.  I hope this affords you some encouragement.  If it does, then you read it  I have noticed that people seem reluctant to give time-lines on this forum, no doubt because everyone is so different.  I just wanted you to know that much of my recovery did not even begin until after one year, so don't lose hope.   Love, Susan

[stoneaxe]

I'm one of the lucky ones. All I can say is don't give up...in fact, if anything push harder. I never found balance therapy to be all that helpful either. I had significant problems, often couldn't drive, fell occasionally, bounced off walls frequently. If you haven't already seen my post on standup its here.
http://anausa.org/forum/index.php?topic=8379.0
A little over a year ago I had surgery to remove my regrowing tumor. Very happy I did....post-op no more headaches either  and if anything my balance is better than a lot of folks without vestibular problems.  I'm 52 years old and having the time of my life. I paddle 2 or 3 days/week and surf every chance I get (I never surfed before finding standup) and I always dance like nobody is watching...

Only thing that still sets things off is movies where there is a lot of movement...flying over the water or similar...Avatar in 3d was beautiful but tough to watch at times.

[HeadCase2]

Hello Miss CC,
  Sorry to hear about your vestibular issues.  If I had been doing PT for 9 months with no improvement, I'd be looking for answers too.  One thing you might consider is finding doctors with vestibular specialization, like a Neurotologist at a tertiary teaching hospital.  By tiertiary, I mean a regional hospital where the toughest and rarest cases are sent. In my area, this would be Duke or UNC.  These hospitals/clinics are the ones most likely to have specialist on staff and unique testing equipment for vestibular problems.  And the doctors are more likely to have seen other patients with similar issues.   In my case, at Duke, they sent me to a Physical Therapist who specializes in Vestibular Retraining, and it really helped.
Regards,
  Rob

[yosemitesam]

The best thing for me was walking everyday and while walking move your head to the side from time to time
as just to look at something. walk walk walk   take care

[Kansas]

Oldie  here: soon to be 75, 21-year old surgery.  I could drive maybe a year after surgery, and was able to continue until last year.  After a big move, all my headaches and balance problems came back with a vengeance.  I don't drive anymore, but have been pleasantly surprised with my good local public transportation. And people so often offer rides, making me new or better acquainted friends.

Recent balance therapy has helped me a lot, but has left me with a sore neck problem which is over a month old now.  I can only do the eye focus exerecise if I turn my head carefully and rather slowly. (I'd forgotten about an old neck nerve injury in an accident ages ago.)  I agree that you can't beat walking.  Walk, walk, walk on!


Kansas

[moe]

Miss CC
So sorry to hear of your setbacks

Great suggestions from everyone. I just wanted to chime in and say "Don't give up!" 17 months is still early, and it could take years to get control of all your post op symptoms so that you can enjoy life to some degree.
My heart goes out to you. Continue to post more specifics about your surgery if possible. Did you have Translab, retro, or mid fossa?

It is a part time job for me personally to get things back to my "new normal" and sounds like will be a full time job for you.

I  spend half my life at the different doctors, but my issues are all face/eye related, due to the facial nerve cut. With my facial paralysis, I would get lots of sympathy stares from folks (that's on the mend now with recent surgery )

What is soooo hard for us is that people can not see how we feel inside.I  become more isolated and socially retreat because sometimes it is just too much effort  for me (I have severe tinnitus/deafness-but am getting the BAHA this week.....see it it still a job for me, 4+ years post surgery)

People don't understand the balance/equilibrium/sensory overload thing, and YOU have more on top of THAT (headaches )

Continue posting- there are sooo many people out there who can relate. If you go to the search section and type in, let's say....BALANCE or VERTIGO, you may read some other stories.

On the side, I live near Seattle, and the surgeon Dr. Jay Rubenstein at UW in SEATTLE just performed some surgery where they implant a sort of device for vertigo somewhere behind the ear, kind of like a pacemaker for vertigo. I found this very interesting. He is also working on some sort of implant for tinnitus. He is brilliant. Was an engineer before he became a surgeon
 He actually  performed my second surgery. (12/7 transposition). I am keeping my eyes on him! It is just an ongoing goal of mine to continue to feel better, but it is hard work, and gets depressing for sure. It's like a rollercoaster ride. Optimism, followed by discouragement, followed by some depression. Then kicking myself to get going again.

Okay enough rambling, I didn't address the balance, but I feel for you, and we are here to support you. Keep at it, one day at a time.. Life WILL get better. Stay POS
Maureen

[Kansas]

Now you know we care about your problems, Miss CC!  I would like to comment on Clarice's letter:  I am amazed at what you can do with both balance nerves gone!  Many years ago I met a lady who had acoustic neuromas removed from both sides, leaving her with no balance nerve.  She was in a high-backed wheelchair.  She had trouble swallowing, speaking, and of course could not hear.  We communicated with notes.  Medical technology evidently has come a long ways since then!  And isn't the human brain wonderful to make such an adjustment!

Miss CC, I think  you mentioned headaches; I had them the first few years, and then they left for about 15 years.  Now they are awful if I push too hard.  I finally found out how to take my pulse, though, and found I can avoid overdoing just by checking my pulse.  With exercise, a pulse of 80-120 is good for me; anything more can spell trouble.