Post-Treatment > Balance Issues

Random loss of balance

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hapicap:
I am 2 years post op mid fossa approach for a small tumor but had severe balance issues pre-op.  Balance improved significantly post-op, but I still have random loss of balance.  I usually catch myself, but have had a couple of falls into furniture etc.  my activity has been limited due to some nerve injury from a lumbar drain due to CSF leak, and I have significant buttock and radiculopathy which limits my walking and activity. I know that this is important to help with overall recovery and balance.  However, I am wondering if Anyone else has random loss of balance?  If so, is it the same, better or worse, the farther out from surgery you are?
Thank you.

Frederic:
Hi,

I also had middle fossa surgery done just over 4 year ago. I experienced balancing issues and hearing loss before the operation as the tumor was busy squashing the nerves. My balancing nerve was completely cut during the operation in order to remove the tumor. My body had to adjust but with time and vestibular rehabilitation things got better...very slowly.

The first 2 years were not easy, my balance did get better overall but fatigue definitely affects it. I also would have no balance issues for weeks, sometime months and then one morning wake up and the balance is completely gone. I tried to figure out what I might have done to cause the unbalance and I have come to the conclusion that it's nothing I did it just happens. It then took about 2 weeks for my balance to get back to what it was before I woke up with the unbalance.

Nevertheless things did get better with time, I tried riding a bike several times after my operation and I was unable to do so safely until about a year ago and I ride often now. Unfortunately I still wake up some days with the unbalance but it happens less frequent and I recover quicker, usually a couple of days. Planning a bike ride ahead of time is not an option for me as I know all to well that I can wake up any morning with an unbalance without any warning.

My balance definitely improved more in the last 2 years as what it did in the first 2 years after my operation so hang in there, it can still get better  ;)



 

hapicap:
Thank you Frederick, for the very thoughtful post. 
I do notice a difference if I don’t practice my vestibular exercises.  It’s helpful for me to know that I’m not alone.  It just catches me off guard sometimes when I think my balance is pretty good, and then surprise, it seems as if I am walking into walls or grabbing furniture to balance myself.  Like you mentioned, it’s not everyday, but some times it feels like it is!
 I still notice difficulty in the dark.  Do you notice any challenges when it’s very bright out, such as walking toward the sunlight?  Sounds strange but I also don’t feel my best on rainy days.
I don’t want to sound so gloomy, as things have definitely improved, I guess I am looking for that 100% when I may just have to accept 80. The fatigue is also bothersome, as I was so active before,  sometimes I don’t know if is my neuropathic pain making me so tired or post tumor effects, or a combination,  I feel like I need to rest after a small task. 
I appreciate the words of encouragement, I should check in here more often.  Sometimes it’s difficult to describe to others things what you are feeling or experiencing because  “we look normal to them on the outside.”  I am happy to hear that things have improved for you and you have adjusted to what they call “the new norm”
I hope you continue to do well and remain active!  Thank you again!
Michelle

Frederic:
The dark is not my friend and keeping my balance in the dark is difficult to say the least and I must take extra caution. Uneven floor surfaces also affect my balance a lot and I can't walk straight on an uneven cobble surface even during daylight.

The fatigue got me down a lot of the time, like you I was used to an active lifestyle always physically busy with something in my free time. This really got to me because after being actively busy for an hour I am exhausted and need to rest. What worked for me is to split my activities up and rest whenever I get tired, no compromise. It really helped me a lot.

Fatigue in my case is also not just feeling tired as people understand it, the tiredness comes with numbness on the left side of my face, my left eye sagging, balance and concentration is also not what it should be and this feeling as if my head is stuck in a fish bowl (best way I can describe it). It usually takes 3 to 4 days to go away. I must say my fatigue improved much more in year 3 and 4, I made very little progress overall in my first 2 years, even with all the vestibular rehabilitation I did at the time.

I also like to mention that bending over with my head down really affected me badly and I now knee down instead which also helps.

Most importantly is that the condition improves all the time in the bigger picture although it doesn't always feel like it, I had loads of occasions where I felt like my condition is improving nicely only to wake up one morning feeling worse as what I did a couple of months ago, it then took like 3 to 4 days to get back to where I was.

Hang in there and keep hoping for better days they will come. Look after yourself and give your body the rest it needs.

RobertD:
Hi, 4 cm AN right side - tx with radiation (not GK).   Balance issues - yes!  Fell over a ladder on the floor 2 months ago.   One thing I think may help is daily running - out and back.  2 months post TX it was TERRIBLE.  Like I would wake up and the world would be spinning.  A lot of times it's like I am hung over (but minus the fun drinking the night before).  I am running up to 25 miles/week now and it does seem to help.  Consistency is key.  And realize you will have bad days...why, who knows.  Stress, weather, temp change, pressure change, who knows.  Lots of issues.   I won't really check this forum but if you want to chat I'm at rdejournett at gmail dot com

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