Author Topic: Random loss of balance  (Read 1475 times)

hapicap

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Random loss of balance
« on: October 10, 2020, 06:11:34 pm »
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

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Re: Random loss of balance
« Reply #1 on: October 16, 2020, 01:50:31 am »
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

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Re: Random loss of balance
« Reply #2 on: October 17, 2020, 09:39:06 pm »
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

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Re: Random loss of balance
« Reply #3 on: November 06, 2020, 03:45:30 am »
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

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Re: Random loss of balance
« Reply #4 on: November 21, 2020, 11:12:28 am »
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

tsaff88

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Re: Random loss of balance
« Reply #5 on: November 21, 2020, 04:18:27 pm »
Hi, 

After GK then translab surgery darkness and uneven surfaces are definitely the enemy.  Some days are good; some days are bad. Vestibular exercises help as does kneeling instead of bending over, keeping my eyes focused dead ahead while walking, and using a walking stick. I haven’t even attempted a bicycle since surgery.

I’ve never had a sudden total loss of balance but the new normal is definitely not the old normal.

pattib72

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Re: Random loss of balance
« Reply #6 on: January 28, 2021, 07:39:23 pm »
I had acoustic neuroma removed four years ago.  My balance never got better despite therapy after therapy after therapy.  My left side is weak and my left hand does not hold objects well.  I have the facial nerve palsy with the droopiness on the left side and complete loss of hearing in my left ear.  These last four years have been so hard.  Lost balance is something that is really hard to deal with.  I have fell several times, fractured my elbow once. I have to use a cane when I go out.  I am glad that I found this group so I can talk to other peopl who are going through this.  I pray for you all and hope things get better for us all.

BigJoeBass48

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Re: Random loss of balance
« Reply #7 on: February 25, 2021, 12:10:47 am »
Hi Patti B....I am assuming that number after your name is your age? I am 63 in California. I made post here but it was too long, 152 people viewed it, nobody replied. I had my 3rd case of extreme vertigo since last May, this one on the 1st of Feb was by far the worst, lasted 30 hours. My neurosurgeons have been hounding me to get CK done on AN. But they say hearing in right ear will be totally gone, maybe eye issues, brain swelling post op, feeling non-existent things crawling on my face. You have that? They all say if I refuse CK this time they will have to cut a silver-dollar size hole in my head, dig AN out, and put me in ICU for 3 days with this Covid stuff not resolved. My AN is 1.6x1.8x1.6. How big was yours if I may ask? Thank you, Joe

Cheryl R

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Re: Random loss of balance
« Reply #8 on: March 03, 2021, 11:17:18 am »
See another dr.    The description of your neurosurgeon is not how surgery is done by anyone who does ANs.      The is always an incision of longer type with bone removed to go inside.    Whoever needs to do ANs on a frequent basis.                Try checking into Dr Rick Friedman at San Diego .  I can not think of the name of where he is at San Diego.  Appeal to your insurance if needed.           Hope this is of help            Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

g_persefoni

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Re: Random loss of balance
« Reply #9 on: March 10, 2021, 07:54:17 am »
 :D
Hello Ladies
I have been 10.5 years since open surgery of my neuroma and must admit that balance is challenging from time to time. Personally, i have found big relief and huge help through yoga and pilates. It strengthens the body, it learns you to balance - plenty of falls during practicing, but who cares, right? - and also mentally hows you the limits of your body and ways to work around it. The more tired i am , at the end of the day, the more 'inbalanced' i am.
Hope this helps!
Exercise is vital for us!

Persefoni
3.5cm on the left side. Open surgery on September 2008 at the https://www.ini-hannover.de/en/  Total hear loss from left side. No tumor since then :)

 


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