ANA Discussion Forum
Archive => Archives => Topic started by: luv2teachsped on August 19, 2005, 05:39:46 pm
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Hi guys- I'm 3 mo. post surgery and lately I've noticed a lot of balance problems. I was sent home from the hospital with a few exercises which I try and remember to do. But lately, I've been doing a lot of "falling into walls". Today I went window shopping and didn't last long. Walking the halls made me very disoriented, I feel like bobble-head doll at times! Anyways, I thought maybe the increase could be due to allergies and my sinuses,since the right side of my face has lost all moisture(no tears, nose run or saliva) or the fact that I should be exercising. Any thoughts? Thanks- luv2teachsped
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ha! this happens to me all the time. i got home from work today w/ a huge black mark on my shoulder that i got from banging it into things. although i think my problem is more depth perception than balance. since my surgery i would definately say i have a depth perception problem!
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I find at certain times, that my balance problems worsen. I also wonder if it is allergies. I know that if I am taking too much in, like driving, going to the mall, sight seeing, etc... I tend to become disoriented. Maybe it is sensory overload? Anyway, I have a certain wall in my house that I seem to constantly do battle with. I have a pemanent bruise on my arm from always bumping into it, even after 7 years. I know that bobble head feeling, somedays I just don't feel quite right.
Have a great weekend!
matti
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Hi luv2teachsped!
Probably just 3 months post op is a bit soon to draw conclusions re: Post op complications, but if you are thinking allergy, notice if your nose drips a lot. Esp; When bending over. That may or may not be a sign of a cerebral spinal fluid leak. It may be sensory overload or purely allergies as you mention.
Question: Were you plagued with allergies pre-op which affected your balance? You would have had the AN compressing the vestibular nerve then also.
Salty taste in your mouth?
I hope all is ok and this is indeed merely allergy. Best to contact the neurosurgeon or ENT this soon post op if you sense anything different.
Worsening symptoms trouble me as we are not quite in the allergy/mold season.
Best wishes!!
Russ
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Thanks for the support! I did have sinus problems before AN, as a matter of fact that's how we found it! I thought my ear was just plugged! Now that everyone mentioned it, it is more of a disorientation and a sensory overload. A friend of mine teaches high school, had her surgery 5 years ago, and said things are horrible for her when the classes are switching. She stays out of the halls at this time!
I notice my balance is worse than a drunken sailor when I am tired! My nose does not run(sometimes I wish it would!), so I don't think it is a CSF leak. I did get some info over the net late last night. I can't seem to recall what they said exactly, but sometimes the balance is worse agterwards. They did recommend contacting my Dr. , for a possibility of PT for the vestibular balance problems. luv2teachsped
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Hi Love2teachsped, I always have issues with my balance. But I did notice it was so much worse this weekend. I went on vacation and was walking the boardwalk, there was alot of people walking in different directions and I couldn't walk straight at all. I also cannot walk and turn my head to look into a window it's terrible.I looked so drunk it wasn't funny .It really is hard to get adjusted. I did go for therapy for balance. They made me walk in a hallway and turn my head as I walked. The hallway walls had pencils on it in different places so when I walked I would have to focus on each pencil from left to right . VERY hard to do. Also walking and throwing a tennis ball up as I walked. Also a hard thing to do. But I was told to continue to do these exersises at home and my balance should get better. So try these and see if it helps, It will take time... Good Luck.. keep in touch Goldineye
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Hi Goldineye! Thanks for the tips! I'll try them, but yeah I can see them giving me real vertigo problems. I guess it's just another one of those things I'll learn to live with. Just glad its "not just in my head".(well actually it is but.....)Today was a very long day for me, and on these days I have killer headaches, and no sense of balance. 'Can't wait to go back to school and dance with my kids this week! Everyone will wonder"what I had" for breakfast LOL Hey , better we laugh at ourselves and enjoy life! take care- luv2teachsped
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I can certainly relate with all the balance issues. My AN was on the 8th cranial nerve so when I lost my hearing right side, I also lost that part of the nerve on that side that controls balance. I thnk the best thing for me was time, but still there are problems. If I'm walking and do not totally concentrate on walking, or try to look up at something, I lose my balance easily. Often times, I just stumble around my office because of the balance problem. I have often said that if I ever got pulled over by an officer, I'd have to ask for a breathalizer test since I don't think I can walk a straight line! Just a month ago or so, I finally got up the nerve to try to swim in the ocean. Last year when I tried it, I fell all over the place. Well, I was a bit better this year, but when I went under a wave and came back up, I was totally disoriented and couldn't get up right. Don't think I'll be doing that again any time soon! I did see some improvement over time though and hopefully there will be more. Hang in there!
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This may seem rather off the wall - I actually though to at first - byt you may want to visit the the Neuro-Optemetric Rehabilitation Association (NORA) website. Here's the link for the patient area:
http://www.nora.cc/patient_area/index.html
I went to my PCP in April for a referral for physical therapy for the headaches, neck aches, hip aches - whole left side (surgery side) aches that I had been having. I thought I'd get some hands-on work, ultra sound, stretching, etc. (you know, the "regular" treatment)...instead the PT diagnosed (along with a NORA trained optometrist) with Visual Midline Shift Syndrome. Seems that when my body compensated for having the AN in my head for so long (balance, hearing, etc) my center of vision also shifted,too! Dont' know if this happened because of the tumor or as an after effect of the surgery. Apparently this syndrome is seen a lot in persons with traumatic brain injury and strokes. The therapist told me that although (technically) I wasn't in either category,I still had brain trauma...I figured "what the heck" - I was ready to try just about anything to get some relief.
It's almost too complicated for me to explain unless someone asks me a specific question (to help jog my no longer so great memory) - just know that with an eyeglasses prescription (with yoked prisms) and some specific exercises, my headaches have been greatly reduced, my hip and neck no longer ache, my balance is much, much better and I don't "drift" to the right when walking or driving as much (it still happens when I'm tiredor am in the dark -I try not too do anything in the dark! :D)
My PT is also trained in postural restoration - I think if you google "Postural Restoration Institute" you will find a website...some of the exercises and breathing techniques I am doing have also helped me to feel more "in balance" and not to out of wack.
Maybe these are sites worth investigating for you - you might at least find something that makes a little sense.
Siri
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Thanks for the support! I will try anything and look into the web sites. One web site said to practice walking down a hallway with your eyes closed. Tried it, decided I was just asking to get myself killed! luv2teachsped
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hi again. i was just reading the post about swimming in the ocean and thought i'd respond w/ my own story.
i tried a wave pool for the first time a few weeks ago and almost drown! be careful in the wave pool!! i was fine until i tried the whole body surfing thing, then when i tried to stand and my hair was in my face and i couldn't see and the waves kept coming and knocking me over (they are FAST and POWERFUL!) i couldn't stand..i kept reaching for my friend, but couldn't see...oh, it was AWFUL! i was much happier when we left the wave pool and spent the next hour or so on the lazy river! :)
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I too had balance issues after my surgery. Please please, find a physical therapist who specializes in these issues. I had a great lphysical therapist help me after my surgery. It is only a matter of teaching your brain to recognize imputs from other sensory sources to correct this problem. I still have some issues mainly when a very quick response is needed, but nothing like before. Please talk to your Doctors and get a referral to someone who can help you.
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Hi
I had my AN removed 12/03 by middle fossa approach, trying to save my hearing. I still lost my hearing unfortunately. I was out of work for 9 months because of the balance issues. I had a gentamycin injection and that helped for a while. I have now been out of work again since May for balance issues. My doctor tried 3 additional gentamycin injections with no help. On July 13 I had a labrynthectomy and a vestibular/hearing nerve resection. Because I had a middle fossa approach and they were trying to save my hearing with my original surgery they left the lower balance nerve intact, however they believe it was damaged during the surgery. Therefore, my brain was constantly recieving incorrect information and my good ear was not able to compensate. They found significant scar tissue and calcifications during the surgery in July, hence the reason the gentamycin injections did not work, they just couldn't get through to the nerve. They also found balance nerve fibers in my hearing nerve, this was an anomaly, they talked about it in grand round. Dr Hitzelberger/House Ear Clinic did the surgery and says he has never seen this before, he has done more acoustic surgeries than anyone else in the world. That is why they also cut the hearing nerve, since I was deaf on that side any way. Well anyway, I am recently attending vestibular rehab 2x wk and have recovered significantly in just 4 wks. I plan to return to work on 9/5/05 with the confidence that my problem is solved for the first time since my original surgery. If you had a middle fossa surgery and continue to have significant balance issue this might be something to discuss w/ your doctor????? By the way my ABR came back w/ no response but my doctor says the test does not test the lower vestibular nerve and I definately had active nerve fibers because I felt almost like I did after my original surgery regarding balance/dizziness.
Cheryl
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Hi luv2teachsped! Just wanted to tell you that I had my surgery Feb 14, 2005. Two months later, I had sinus surgery. A month later I began allergy shots. Three months after surgery I thought my balance was worse and actually fell and fractured my pinkie finger. I am 6 mo out now and my balance has greatly improved. Yes, when I am tired, I also walk like a drunken sailor. I also don't drive at night because when I get out of the car, if it is dark, I feel like everyone thinks I am on drugs and the balance is much worse. But, all in all, give it some time. I think my memory has been affected alittle and I continue to have eye problems on the side I had the AN out. My tumor did encapsule my facial nerve but I have been blessed with no facial paralysis. They shaved my balance nerve but said I would get better with time and I have in that area. Keep an upper chin. I like your spunk and upscale attitude. Good Luck! Myrna
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Hi Myrna! Thanks for the post! Do you think the sinus surgery helped and how long we're you laid up? The original Dr. that referred me for my AN surgery, said" come back after surgery, so we can take care of your sinuses"meaning surgery. Frankly, I've had enough surgeries, 4 back surgeries and of course the brain surgery , all in the past 15 years. I am recently divorced and live alone, and have a daughter I'm putting through college. I can't afford not to work, but.. would like to reduce my sinus problems,extreme headaches and maybe balance issues. They seem worse lately along with allergies. What's your take? luv2teach
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Before I knew I had an acoustic neuroma I was having a terrible time with my balance. I found a new clinic that specialized in poor balance problems. I went to a therapist weekly for several months and my balance improved greatly. Eventually she felt I was ok to end therapy as my balance improved and she had taught me how to do exercises to do on my own if I began to have more problems. Even though I did my exercises as she had taught me faithfully, eventually my balance started to get worse again over a short time. I was checked out by an ENT and was told I had an AN.
I don't do my exercises now because it bothers my head too much. Even after surgery to remove my AN a few years ago. My balance still gives me problems expecially if I am standing in one spot trying to carry on a converstation with someone. I feel very embarressed as I stand there and begin to sway, I am afraid they will think I am on something. :) Also a big problem for me is walking down a hallway in the dark.
Most ANer's I talk with say they have balance problems, unfortunately.
Sonshine