ANA Discussion Forum
Post-Treatment => Balance Issues => Topic started by: NYLady on January 11, 2015, 11:08:47 am
-
Has anyone experienced balance (equilibrium) issues months after Gamma Knife. Did have some prior to treatment, but everything was perfect until about 3 or 4 months later. Now get a bit off balance when I stand up and walk. Fine sitting down. Anything relieve it? Is there even a remote change of this resolving down the line some time. Seeing surgeon in a few weeks....but till then...any input? Thank you for any shared info. Means a lot.
NYL
-
If you are experiencing the lurching feeling, like being on a boat or on the subway, when you walk that's what I had. Also no issues with sitting or lying down.
Not dizziness or vertigo. That's a whole nuther issue. I never had any of that.
My balance issues started in December 2011 along with a catastrophic loss of hearing and the onset of tinnitus. I was diagnosed with the AN in April 2012 and had Gamma Knife in January 2013.
Just before the GK I had several sessions of Vestibular Rehab that helped a bit and had a few sessions right after GK as well. I continued the exercises that I was taught and within a few months after GK, the lurching resolved itself and has not recurred.
However, every once in a while if I make a sudden move or turn I feel like I'm not quite in control.
In spite of that I put my balance recovery at a good 95% and I'm just about 2 years post GK.
I can't tell you why it's cropping up for you right now but I can tell you that the body does eventually compensate for the loss of vestibular function on the AN side.
You might consider Vestibular Rehab so you can learn the balance exercises that you can do at home.
-
AZ Jack,
Thank you for answering so quickly. You know, funny thing, I never really thought about a "lurching" feeling, but that actually is a better way to describe what I am feeling or at least a good part of it. As I said, I am seeing surgeon in a few weeks and maybe he will prescribe some vestibular therapy. So encouraged to hear your problems got much better after therapy. Sincerely hope and pray mine do too. Also, I am only six months out from GK....sometimes I have read good things about what happens as time goes on, and unfortunately some negative things as well. Guess it all is a very individual experience for each of us. Thanks again Jack.
Best to you
NYL
-
Hello NYLady,
Prior to my GK treatment I didn't think my balance was to bad, but when the neurosurgeons would test me and ask me to walk placing one foot directly in front of the other I would fall over by the third step.
Within 3 months post GK I started to notice definite wobbling and bouncing into door frames. From 6 - 10 months post GK I was at my worst. I constantly felt like I was trying to walk on a boat in rough seas! I couldn't walk a straight line, I wandered from side to side on the sidewalk, walking in dark was especially bad. I would feel very tippy on stairs and if I bent over to pick something up I frequently felt like I was about to roll right over. I was perfectly fine sitting and driving! I was told the AN could be swelling during this time so I basically just lived through the experience, being optimistic things would settle down eventually. I did vestibular rehab for 1 full year post treatment and took Advil for the really wonky days. When I hit the 12-16 month post GK months I realized that I was no longer feeling wobbly, I could walk straight lines, walk faster, and no longer feel tippy on stairs or bending over.
I still have the odd day where I will feel "wonky" or loose my balance and bump into something. I'm still cautious moving around in the dark, but overall, like Arizona Jack, I would rate my balance recovery at over 90%. When I met with my neurosurgeon for my 1 year follow up, we discussed my balance issues. He told me the swelling may or may not return for up to 3 years post GK and that the balance issues may or may not return with the swelling. You are most likely experiencing some swelling and things should improve over time. Be patient, stay positive and know that the recovery from GK can take time, but things do get better.
Cathie.
-
Thank You Echo...
It is certainly encouraging to hear that what I am experiencing is probably normal. This is the beauty of this forum. Sometimes, even though you are a positive person, you begin to wonder if just maybe your "situation" is different. Then, when you reach out,to the good, generous people here, and they share their experiences, you find you truly are among those who understand. I do realize that GK is not a quick fix. Actually prior to my treatment, I had that conversation with my wonderful doctors (Roland and Golfinos at NYU), that there truly are no one size fits all treatments and that there is always risk and possible side effects. Medicine, wonderful as it is, cannot give any guarantees as to outcome. All of us are different and respond differently. Just knowing you, Jack and most likely others have walked this path and had good outcomes, goes a long way to giving me hope that I, too will one day be able to say things do get better. Thanks again Echo.
Best to you,
NYL
-
I had Gamma Knife back in April and I still have some 'episodes'. Usually after getting up, I get a little sideways occassionally but not enough to make me fall.
-
Thank you Dan...
Looks like we had our treatment pretty close to each other. Yours, April, mine July. We both still have a way to go to know how we responded to the radiation. We have to hope and believe the treatment stopped the growth and I guess just keep on pushing through whatever symptoms comed along. Best of luck to you and thanks for the input.
NYL
-
when the neurosurgeons would test me and ask me to walk placing one foot directly in front of the other I would fall over by the third step.
Heck, I still can't do that, probably never could, and I doubt that most people can do that well even without ANs.
Circus tightrope walkers spend years training to do it.
;)
-
Got a bad case of dizziness that started 2 months after GK which lasted for a week. MRI showed swelling at that time, and showed shrinkage at 6 months. Currently not as bad but still have balance/tinnitus issues 11 months out.
-
Thanks for responding Ampeep...
Did your surgeon recommend any kind of vestibular therapy? Since your AN showed shrinkage, I was wondering if that would result in any improvement of symptoms. Still trying to understand all of this myself. You would think if the AN shrunk and removed some pressure from the nerves, it would bring about some sort of improvement. I guess as we all just keep talking to each other, we come to understand once again, no two cases are alike although we share much in common. Best to you Ampeep and your continued recovery.
NYL
-
Thanks NYLady,
After hearing about vestibular therapy, I tried some exercises that are on YouTube, which seemed to help. I asked my surgeon, so he gave me some basic balance tests & told me that I didn't need vestibular therapy, but it wouldn't hurt to do the exercises. At my 6 month MRI, I was sure that my AN was still swollen because my ongoing dizziness & tinnitus. My doctor said I could go back to my normal activities & check back in a year. Was really surprised when my surgeon said it had shrunk!
Is it only balance or do you have any problems with hearing?
It's good to hear about other people's experiences, because I learned more from this forum than from all of my doctors. Hope things are going well for you, NYL.
-
Ampeep,
I do have other issues such as very mild tinnitus, and hearing loss, in addition to the balance problem. Hearing loss and poor balance are what led me to the ENT who found the AN and then referred me on. I go for six month visit shortly probably within the next 6 weeks and will let you know how I do. One day at a time......
NYL
-
NYL,
I had GK early July '14.
Mid December my wobbly balance problem worsened and has gotten worse in the last month. I am not falling down but I'm very careful and there is no way I can walk a perfectly straight line now. Had some of the wobbly gate prior to the GK but it is far more pronounced now.
I also just had a bout with Bell's Palsy type symptoms - left eye not closing completely, left side of mouth not working well, and tongue a bit numb and dysfunctional on the left side. I have my local ENT and neurologist engaged now in evaluating this plus am in communication with the neurosurgeon and team of experts who did the GK. My GK experts are in agreement with the treatment and approach my local physicians are taking. I just had an MRI and also a round of steroids to reduce the swelling, which helped some but didn't eliminate the facial paralysis issues. The steroids did nothing for the wobbly balance issue. I have not yet gotten the results from the analysis of the MRI from my local medical team but will early next week. I have sent the disc off to GK experts for their assessment. BTW, I had an MRI in October by the experts and everything looked fine.
For the time being everyone is assuming it is post GK swelling. My research here and elsewhere would support that hypothesis. Of course, I am looking forward to some expert opinions from the latest MRI.
All the best,
Al
-
Al,
Thanks so much for your input. This kind of interchange of information is so very welcome and helpful to me.
I am thinking the symptoms we experience after GK are also dependent on where the tumor is and how big it is which would influence the amount of radiation they used. Do you think that makes any sense? So sorry to hear of your Bells Palsy issue. Hopefully Al, these things will all fade in time. As for me, just diagnosed with arthritis of knee and hip, which is complicating my walking as well as the balance issue....I must look like I have been on a real bender to those who dont know me. And I didnt even have any fun!!
Will let you know how I make out at my checkup, which looks like it wont be now until late April due to scheduling. MRI in about 2 weeks.
Wishing you the best as we continue on this journey.
NYL
-
Hi fellow post toastie, I had GK surgery Aug. 2013, swelling by month 4 worst symptoms month 4 through month 12 post GK. My six month MRI showed swelling with necrosis which supported the theory the swelling was causing an increase in my symptoms. Necrosis is a darkening of the center of the tumor which is an indicator of .....death to the tumor. The strangest part is they may have gotten worse progressively but felt like they just (pow) hit all of a sudden. So the fact that the balance, hearing, tinnitus, headaches, vertigo, fatigue, loss of mental sharpness started was a good sign.... The beginning of the little buggers demise. Everything didn't happen at once but accumulated and made life unbearable. Hear is an odd one, I started bighting my tongue and the inside of my cheeks, like I lost control of chewing and swallowing and tongue movement. I noticed trouble with speaking sometimes like my tongue wouldn't work.
At my six month check up my doctor prescribed vestibular rehab. went to a sports medicine rehab. clinic, spent six weeks there and learned some exercises that definitely helped calm things down. The explanation I received was that the loss of that nerve function means the body needs to learn to compensate and requires practice to relearn. Month ten first of july 2014 I was hit with vertigo severe enough to put me in bed for three days. When the vomiting ended I could hardly walk. It took me a month to get over it, I started by just walking. I started walking down the driveway, I would walk as far as I could and back again. I had to watch my feet, making a conscious acknowledgement that each foot was on the ground when I shifted my weight. In other words mentally explaining to my brain how to take a step with out falling. I moved on to walking down the street making the distance between telephone poles as my measurement of distance and adding a poll as I could stand it. Eventually I was able to make the circle, four roads that end up back at my front door a four mile trip. My time was not impressive at all and took several hours. By the end of August a one month time frame I was walking the trip enjoying the sights and sounds around me. I no longer watched my feet, walking was as natural as it used to be and my balance issues were nearly gone.
Less than Two weeks till my next check up one year, six month MRI. I expect to get good news, I did not get my hearing back, that I am assuming is gone for good. I have about 10% hearing in the AN ear and 80% in the good ear. I can function fairly normal with out it. All I get in the AN ear is an acknowledgement that sound is happening on that side. Enough to make me pay attention and find out what is happening over there. No word recognition over there, but I lip read turn my head to hear with the other ear etc. I get tired of saying could you repeat that please, but it has become part of my life.
There are several nerves in the bundle that enters the brain stem at the point of AN attachment. It could effect one or several nerves at once. Here is an over simplified description. The AN attaches to a nerve which destroys that nerve or debilitates its function, this is most likely permanent damage. The nerves around it are pushed out of the way or pinched against bone, some what like pinched nerve in the neck or back. That nerve reacts as being cut off but will return after the pressure is removed. The brain reacts to the loss of signal by searching for something to fill the void of signal, ie. hearing is replaced with tinnitus, the brain replaces the sound with its own. I use a hearing aide hopeful that my brain won't forget how to hear and eventually regain some hearing, but the hearing aide itself causes some discomfort, like the nerve has been over stimulated like the after effects of a Kis concert.
Those who have lost hearing most likely have less damage to facial, mouth, balance nerves, but no two AN's are created equal and the location, size, shape of the tumor and nerves effected will determine what symptoms present themselves. And our brain will react to those disturbances in an unique way. For those who elect surgery will have a different reaction because the procedure creates a different set of circumstances ie. severed nerve, open wound, etc. I am not familiar with the after effects of surgery whether that is easier to rehab from or not.
So here's hoping you don't wind up in any DUI checkpoints. I agree at times it feels like a hangover minus the fun of getting there. Oh well, stay positive work on the things you can, be patient with yourself and keep in the back of your mind this will get easier in due time. Hoping for good news at your next checkup.
-
Thank you EWhitese....So encouraging to hear once again that with the proper focus and effort, things do get better. A little hard to see them improving right now when each day brings a different degree of these symptoms, but the words of all the above posters and yours keep going through my thoughts saying hang in there, it gets better. We have had some rough weather here in NY so my six month post op checkup will be delayed until late April, but hopefully the MRI which I will have sooner than that will show some positive stuff happening. Could almost say the worse you feel could be an indication of good results from the treatment. You have started my day with such encouragement. Thank you.
Best to you for your continued improvement.
NYL