by Neil Bauman, Ph.D., with Tony
In 2005, Tony had surgery to remove a large (4.5 cm) acoustic neuroma (non-malignant tumor) growing on his left auditory nerve. In the course of removing the acoustic neuroma, the surgeon, not only had to cut the auditory nerve leaving him totally deaf in his left ear, but also severed the vestibular nerve, thus totally destroying the balance system on his left side. The result of this surgery left Tony wheelchair-bound. However, he didn’t stay there. With vestibular therapy and much hard work, Tony now can lug his golf bag around the course as he plays 36 holes of golf. Here is his story.
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Three years ago I lost a balance nerve to surgery and was left in a wheelchair. I could not walk unassisted, and had to relearn how to balance myself again. This was a long process. However, given the benefits and independence I now have, it certainly was worth it!
After the surgery, my first experience with poor balance occurred when I fell out of my hospital bed—face down onto the floor with some force. Ouch! You see, the surgery had cost me my left side balance, and I didn’t realize just how “shot” my balance system was.
As the days went by, I became increasingly aware that my lack of balance was affecting me in many other ways. For example, I fell numerous times. (In self-defense, I kept an eye out for somewhere soft to land if possible. I needed an area where a fall was not going to hurt me.) I collided with people and objects. I was clumsy. I often dropped things. I found it was a good idea to stay away from work on ladders!
Furthermore, I had trouble coordinating my left and right hands. This was brought home to me 8 weeks later when I was trimming the hedge and nearly lost a finger to the electric cutters!
Each day as the hours went by, I became more and more tired. The result was that my coordination became progressively worse to the point where I was not able to move around safely.
Consciously keeping my balance proved to be exhausting. I experienced profound fatigue when engaged in almost any task, whether physical or mental. My lack of balance affected my speech too. The wrong words came out, or I mispronounced words.
My short-term memory dropped dramatically. You see, the effort involved in consciously maintaining balance like I now had to do affected my short-term memory. As a result, in addition to my speech problems, I easily forgot simple things, and was forever losing things.
For several months after my surgery, I needed a midday nap. Unfortunately, napping messed up my night-time sleep patterns, and I would be awake in the early morning hours. The result was that I invariably awoke exhausted before the day had even started! All these balance-related problems reduced my self-confidence. I became both frustrated and depressed.
While I was still in the hospital rehabilitation unit, I was determined to get well. I requested assistance in using the gymnasium, but was told no one was available to help me. Next day, while still in my wheelchair, I broke into the gym and began using the equipment by myself. They were not too impressed with my actions (I was spotted on the security cameras), but I made my point. The following day suddenly staff were available to assist me. I made rapid progress. My stay was just 32 days, not the expected average of 82 days.
To get my balance back I needed to exercise. To some degree it almost doesn’t matter what the exercise will be. The real key is to do something that you really enjoy and be able to stick at over a long period of time. For me that was playing golf!
Hospital rehabilitation got me walking again, but my first golf experience showed me just how weak and frail I had become. For example, when playing my first golf game (four months post operation), I could only manage four holes before becoming completely exhausted.
Therefore, I set out on a course to rebuild both my balance and my stamina. Fortunately I was (and still am) a keen golfer, so I did not consider time devoted to playing golf as a big issue.
Golf involves a combination of balance, movement, and eye/hand coordination. In this respect, golfing was an ideal therapy for me. Throughout all the days, whether sunny or rainy, I don’t ever recall thinking “this is a chore”. Rather, my feelings were, “I am getting better” (both my balance and my golf game)!
Throughout all this rehabilitation I felt so tired—close to complete collapse was more like it. However, I discovered that if I simply stopped, sat down somewhere quiet, and shut my eyes for 10 or 15 minutes, something quite miraculous happened. These short breaks were equivalent to about four hours sleep in terms of my body’s recovery. They had the added advantage that they did not disrupt my night-time sleep patterns.
I really pushed myself. However, there is a fine line between pushing yourself and overdoing it. When I really did overdo things, my coordination became increasingly erratic. At this point, drills, power tools and hammers were simply too dangerous for me to use—best kept safe for another day.
Over time, my strength and stamina slowly returned. I was now able to take on increasingly longer and more demanding exercises. My average golf practice now consisted of 140-160 long-range shots, considerably more than in a full game of golf.
As my balance improved, I also noticed that my thinking and coordination improved as well. I could now get through a day without a nap.
Just how much I have improved really came home to me when I moved 300 sidewalk slabs (over three and a half tons) from the front of my house to the back garden. It took me four hours. Yes, I was smashed afterwards, and hurt just about everywhere, but I did it!
My balance will never be perfect. My new balance system requires a visual point of reference. In other words, if it is completely dark, even simple movements are difficult. Thus, in the dark I find it wise to carry a flashlight. At home, I use low-wattage nightlights in the hall. This makes a big difference when I am moving around in the early hours.
When walking up and down stairs I usually extend both elbows out as additional stabilizers. I’d rather have a bruised elbow than a bruised head! Uneven ground almost always presents a challenge for me. I’ve found it best not to try and carry stuff in such circumstances.
I am not anti-alcohol, but my new balance system does not cope as well with the effects of alcohol as my old one did. My tolerance to alcohol is now reduced. These days I only drink at home when there is no possibility of any further travel or driving that day.
Because my brain is more occupied with keeping me balanced than in remembering things, I’ve found that it is worthwhile for me to take notes during meetings and to create to-do lists rather than relying on my now faulty memory.
Without a doubt, regaining my independence definitely helped my feelings of self-esteem and self-confidence. I can now work a 12 hour day with a two-hour journey at each end. Equally, I now understand and value rest when I can take it. All of this was possible only because I took the rebuilding of my balance and my health to be a fundamental and key issue in my life. Now, I am no longer confined to a wheelchair, or to walking with a cane. Finally, and to the disgust of my golfing friends, I can now beat them at their own game! This I call “success!
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To learn more about your balance system, how all the various parts work together and what happens when it gets damaged, read “Protect Your Balance System—or Else“. If your balance system has been damaged, take courage and follow Tony’s example. Never give up. Rebuild your balance system as much as is humanly possible. When you do that, you too will find your level of success!
Carmele says
I just finished reading your story, and I really hope I hear from you! I have a superior canal dehiscence,which causes lots of dizziness, tiredness and all the other symptoms that you have mentioned. What I am wondering, is that because they cut the balance nerve or because of the tumor? The drs here have suggested cutting my balance nerve or kill my balance canals, and I’m completely freaked out. I know when they do the plugging of the affected canal it kills the one canal..not all 3. I really hope to hear from you soon!!
Carmele
Dr. Neil says
Hi Carmele:
Tony’s balance problems were the result of cutting his balance nerve while removing the tumor.
I’m not aware that plugging the “hole” kills the balance in the superior canal. Have you sought a second opinion by an otologist? That is what I’d do.
If you wear an ear plug in the affected ear, I’d think it could help with your balance problems since superior canal dehiscence causes loud sounds to generate bogus balance signals. Wearing an ear plug would soften these sounds.
Regards
Neil
Carmele says
I have tried the ear plug..that still won’t help me unfortunately. I just have to see lots of movement around me and it gets me spinning. Walking can be very difficult at times! I have seen 2 ENT’s, and one neurosurgeon. I have read lots about superior canal dehiscence, and because it is still realtively new, lots is still being learned about it. It’s an illness that presents itself in so many different ways in each individual. I have even emailed a couple of dr’s that do this surgery (unfortunately they don’t live here, and I would be the first to have such a surgery where I live) and yes plugging the hole will disable that one canal. Now I figure killing the balance canals or cutting the balance nerve would leave me in worse shape than what I am already in, and even if it did solve the balance problem, I will still have all the other symptoms..what a horrible place to be in right now!
Carmele
Carmele says
Hi
The Dr. that I am seeing is my second opinion. Still not sure about the cutting of the balance nerve though or putting geramicin (not sure if that is spelt right) in my ear is the way to go. The hole will continue to get bigger in time, and will leave me with other complications and eventually need to be repaired. When the nerve is cut, wouldn’t I have to relearn to walk etc? I am really concerned and sort of freaked out. I want to get better, but I want to get healed properly and not have a bandaid solution!
Becca says
So happy for your recovery, and a little jealous. I’ve been recovering from bilateral vestibular loss (and Lyme disease) for over 7 years and I still have lots of difficulties. I remember reading that recovery from unilateral loss was more likely than bilateral, which makes sense. I am struggling with work, and driving, grocery shopping, basic chores are still challenging. I won’t give up!
Deborah Kerr says
4 months ago I acquired bilateral sensineural hearing loss and severe disequalibrium for no apparent reason. At first I could not even walk.
Your story has inspired me to continue making myself strong again. This includes physical as well as mental strength.
I have lost everything including my sight (bouncing eyes), hearing, my job, my home, my mobility, my driver’s license and my independence. I am determined to regain what I can and properly grieve for what I can not.
I struggle with obtaining support from others who understand what I am going through.
Your story has helped me fight another day because I know I’m not alone.