ANA Discussion Forum
Post-Treatment => Balance Issues => Topic started by: susierg on November 18, 2012, 06:15:57 pm
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I went last week for a follow up MRI after middle fossa surgery in July of this year. I continue to have major "Wonky Head" and balance problems. So much that I am stilll only able to work half days. My MRI results were good....tumor gone! They did tell me that my cochlea was inflamed and put me on a round of steroids. They are hoping that the steroids will help. As the inflamation could be a part of it, I guess, I have had these problems for almost four months now. I have taken vestibular therapy and even started taking yoga. I have even had my "energy healed" a couple of times, which is a very unusual ritual, but actually felt a little better afther the first session. After the second, had one of my worst days.
When does it get better??? I am beginning to get so frustrated and depressed. I work on my balance almost none stop and nothing seems to help. Sometimes I feel decent in the morning, but as the day goes by, things regress. I almost feel as off balance and wonky headed as I did just after surgery. Before returning to work, I would have good days and bad days....now all I seem to have is bad days.
Would greatly appreciate any input from anyone who has gone through this. I'm considering checking into acupuncture as I'm willing to try anything to make this feeling go away!
Thanks in advance for your listening, suggestions and advice.
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I was troubled with balance and other issues for 7 full months after surgery. Walking with head movements helped, but I did not overdo it. I did exercises morning, afternoon and night with rest after each session. We cannot force ourselves to recover, or to recover faster, than our brains and cranial nerves are able to. Feeling frustrated and impatient just adds stress to an already difficult process. Recovery isn't a race, it is recognizing small improvements and seeing progress. The rate of recovery varies for each person.
I am now just over a year and feel fine, though I still have moments of difficulty and experience wonkiness at times, but it is very minimal compared to what it was a year, and even 6 months,
ago. Cranial nerve recovery can take up to 18 months according to both my surgeon and ENT. I am sure you will improve with time, most of us do. Good luck
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LakeErie is absolutely correct ..... much as we'd like, we cannot hurry the recovery process. We just have to listen to our individual bodies and not push beyond a reasonable amount.
One thought ..... try eliminating all caffeine (coffee, colas, and yes, even chocolate) and see if it improves. It makes a huge difference to me.
Many thoughts and prayers that the "wonkies" will soon pass!
Clarice
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One thought ..... try eliminating all caffeine (coffee, colas, and yes, even chocolate) and see if it improves. It makes a huge difference to me.
Oh Clarice
I didn't want to hear that... eliminating all caffeine.
Funny, my daughter told that exact same thing to me this morning when I told her how bad my "wonkie head" has been lately; can't tell if it's getting worse because of the Gabapentin or just acting up on it's own but I know I need to get back to a healthier diet regardless. I don't know which is going to be harder to give up the coffee or the chocolate! ???
Thanks for reminding me.
Susierg
Hope your feeling better. Can't force your body into something it's not ready for, unfortunately, the healing process is a long one. Take your time and hopefully it will resolve itself. I know how you feel, I'm so tired of not being totally healthy I could scream but then I stop and think this is the "new me, new reality, new normal".
Karen
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Thanks Ladies.....I guess deep down I know I'm just being impatient, but it concerns me that I was seeing some slow improvement and now everyday is a bad day. For instance, this morning is one of the worst days I've had since surgery. My head feels like its full of helium and I need bumper pads to to get around my office. Emailed my Dr. again this morning and he once again tells me to be patient. I made an appointment with my yoga instructor for this afternoon to have my energy healed again.....and called an Acupunturist and set up an appointment for next week. I'm willing to try anything!!!
Did any of you have your wonky head/balance get worse after getting better??
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Yes, I was doing very well after CK for the first four months, a few bad days but over all very well. Then I lost a big chunk of hearing (word recognition is now only 7%), balance / dizziness got worse, and now I have the facial spasms. BUT each "bad" situation has / will get better (except for my hearing) but it takes time.
Sounds to me like you made good choices today by taking steps to help yourself get better. I, too, have used yoga and other modes to improve my current health situations.
Again, good luck, keep posting, and keep reading the forum postings.
Hang in there! ;)
Karen
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Susierg ~
I am right there with you, so please don't feel like you are alone. I thought I would show more improvement by now. There are days that are worse than others. That's a great description about feeling like you have helium in your head. So then while you walk, your balloon head feels like it's just floating in space. I hope and pray that we both can look back at this and say that we should have been more patient.
Clarice ~
Do you have to cut out all caffeine? I usually drink 1-2 cups of coffee a day. And, maybe I should give away that Halloween chocolate!
Lisa
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Lisa .....
I have chosen to drink my 1 1/2 cups of coffee, knowing full well it is a trade-off. I'd rather get my jump-start first thing in the morning and be extra careful.
Clarice
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Clarice
After reading this post I decided to limit myself, also, to two cups and cut back on my cafe con leches. Can't give up every thing for a lump in my head ;D
Karen
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Thanks again ladies for all the advice....
Lisa, I have an appointment with an accupuncturist on Monday. She says she can help me...we'll see. I'll let you know how it goes.
Everyone have a safe and happy thanksgiving!!!
Susie
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I was feeling stalled out in my recovery 9 months after the last complication I had cleared up. At that point, I was feeling like my energy level was not improving. So I started getting acupuncture to see if it would help. What a positive difference it has made! So I praise you in going forward with it. It has helped me alot.
You may be overtaxing your system and that is what is causing your wonkiheadedness. I'd scale back everything you are doing--the exercises are as taxing as regular daily activities, so in a sense you are adding alot to an already fragile system. Don't feel bad or like you are regressing if you scale back a bit. You are doing more than what your body can comfortably handle. So reducing the load can help. It seems like a constant push and pull--feeling good, adding a little bit more, then feeling bad because it was too much. Going to a more comfortable level and staying there will help you gain strength and confidence to add more back when you are ready .
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To steal a quote from someone some where,
Rome wasn't built in a day. Now I don't say that to be harsh, but to remind. Most of us have had these tumours for years, insidious little rascals, growing, crowding, interfering with our lives. Once we have them out, if we haven't been fortunate (LOL) enough to have had balance and wonky head issues for years, we have to deal with the sudden onset of complications from having the balance nerve cut or radiated.
I sincerly hope you feel better every day, and wish you patience and strength to hang in there. It's gonna take some time it seems.
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Susierg,
My first year was hard for me. I had wonkihead really bad. My head hardly ever felt clear. As the day progressed & I felt tired, the feeling got worse.
It was around my 3-year anniversary that I felt I could say I felt fine. Most days are good days. When I'm out at the mall or some noisy place like the mall, I get tired and wonkiheaded. Noise just does that to some us AN folks. Usually, I need to rest for a bit & that takes care of that. Everyday, at the end of the day, I still get wonkiheaded. This is part of the new me. The wonkihead is part of my life, but it's not there all the time. Mostly when I'm tired.
Don't get discouraged. I does get better.
Syl
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Hi
I have wonki head everyday... all day and all night. It drives me insane. I am one and half year from my surgery in 2011 and I pray everyday that someday this will end. I went right back to work, did physical therapy until there is none left anymore. I do know that if I push myself or I don't rest enough I will get worse and feel like a bull in a China Closet. I am a sixth grade teacher and some days the noise and lights and people are too much for me. When I read all of your posts I can see I am not alone. Thank you for that. I am sorry I don't have much advice, but I do know that I am not a crazy person, AN had changed my life significantly.
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Nine years post FSR and the balance problems come and go. One thing I can count on, if I fail to get 7 or 8 hours of solid rest at night I KNOW the next day will be challenging. Good luck.
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Hi Susie and everyone-
Susie , I sympathize...the wonkiheadedness is a bothersome state and I have found hard to define it well... Whether it is a sense of being off but walking just fine, the feeling of a spirit sitting on the an side, lightheadedness as if having had two glasses of wine in succession (but having none)or simply something askew in there that was not there ten or five years ago(we know it is a different feeling from the way we used to feel before the an ) -it is a constant presence and it seems to worsen with noise and stress. It comes and goes. I think the SSD after translab compounds the feeling. However,I THINK it is getting better for me (my surgery was Oct 17th) as I feel much better today than right after surgery .
I want to believe that as our tissues and nerves heal after the surgery, it gets better up there...and then, maybe, we just get used to the residual wonk states.
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Millie, I agree with you. I am 14 months post-op and the complications of the surgery have improved steadily, still are improving in fact. At the same time, to the extent that problems remain, I have grown more accustomed to them. As an example, I hardly notice the numbness on the right side of my tongue anymore, even though it is still numb. We do improve, we also get used to the new way we are now.
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I didn't have surgery but did have CK about seven months ago and the wonkihead or whatever it is is getting worse. I went Xmas shopping at the mall for two hours Monday figuring I'd be OK; NOT! I couldn't hear anyone that spoke to me, I had such a bad headache, was walking like a drunk, & feeling ill. Was surprised that whatever this is also took a toll on me Tuesday, sort of had to lay low all day. I never want to go shopping again & for me that's a statement :(.
I notice now just walking "scrambles" something in my head & heaven forbid I'd ever have to run to or from something.
Hopefully, for all of us experiencing this it will come to pass - soon.
Karen
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Karen,
I don't like to go shopping either and generally the following day, I'm exhausted. I can't remember if you have tried vestibular therapy. It might be a good time to start, especially the gaze stabilization exercises.
Lisa
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Susierg,
Well all of the above is great advice, and of course everyone is different. Only don't listen Clarice; I enjoyed my coffee as soon as I came home from the operation!!! ;D I think you are being too hard on yourself. Maybe try backing off of things a bit and be sure to get your sleep at night. I also found that NAP IS GOOD!!! Anything you can do to let your body heal over time will help. I also went through a period (distant memory now) at around 7-9 months when I thought that I'd never get any better. Lo and behold, the progress continued at a pace that was not always detectable but was obvious after the improvement. As was said, you still have plenty of improvement to experience, right into 12, 15, or longer than 19 months. Albeit, the progress is smaller, but its all still good. Hang in there. Listen to your body and get that rest it needs!
SteveK
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Thanks Steve. Like the girls above, I went with my 90 year old mom to her doctor's appt. today, then grocery shopping with her, then returned some stuff to Kohl's and I have had it. I started to feel really out of it in Kohl's plus I could not find what I needed.I too had the feeling that is it ever going to get better. I am feeling very bah humbuggy right now. It is two months after surgery almost so thanks for saying it will probably slowly get better.
My left eye vision seems different too (an was on the left) and my facial droop has gotten better but I still have some droop. One thing I have noticed is my eyelashes on the left eye are almost gone! What happened to them and did anyone ever have that happen? Maybe that's why it tears so much.
Mil
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Millie, did you have translab? Did they take your vestibular nerve? I wonder if that could be impacting your vision.
For the first few weeks after surgery, I had a very difficult time reading, working on the computer, or even watching TV. I wasn't sure until just a few days before I went back to work that I was actually going to be able to do my job. It is much better now, but I still could use some vestibular therapy and maybe even some gaze stabilization exercises. I will probably check into that after I've healed from the upcoming BAHA surgery.
Best,
Liz
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My left eye vision seems different too (an was on the left) and my facial droop has gotten better but I still have some droop. One thing I have noticed is my eyelashes on the left eye are almost gone! What happened to them and did anyone ever have that happen? Maybe that's why it tears so much.
Mil
Millie - I'm SO WITH you about the eyelashes!!! LOL! I actually BOUGHT some stuff that's supposed to help regrow them....not sure if it was time or the stuff that made the difference, but they're mostly back now. Also - the eye droop causes them to lay flat when they would normally stand up more. And I think rubbing was pulling them out quicker than they could regrow. My vision drives me nuts at times - I just keep drops handy. I also had prisms put in my glasses - and now when I am walking about the house without my glasses I am more dizzy - so you may even want to consider this. Just be careful on how you tighten your muscles on your face....I have ended up with some synchinesis (sp?) on that side and now my eye is TOO TIGHT! Go figure! It's slowly (painfully slowly) getting better. I'm still tempted to contact Jackie Diels about exercises as she has the ability to Skype with you for a fee - but we're unemployed at the moment....so funds are low.
So I don't know how many of you believe in supplements, but I take handfuls of vitamins daily - for bone and other things. I take alpha lipoic acid, which is supposed to help nerves - don't know how much it will help, but I've increased the amount I take just to see if it helps.....maybe you should look into that kind of thing?
I guess I've just decided that I'm not going to hurry things as best as I can - but I am blessed with being home - I watch my 6 month old granddaughter for my daughter while she works, and that actually is a great balance challenge as I WILL NOT fall when holding her - forces me to be very careful with my walking and other things. I've recently reduced one balance issue - literally fell totally out of control when I tried getting up and turning to walk behind me all in the same motion! That was a couple months ago and it no longer happens, but I am more careful. Just try to be patient. What everyone is saying is true - overloads are no longer our "friends" at all! I used to be a supermom....no longer. Sad, but true. No more crisis management for me!!!! :o
Pam
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Hello everyone!
Best wishes for health and recovery in the New Year. More balance. Less wonkihead. More eyelashes. Patience and strength. Insight.
As I read these posts, I thank you are there to identify and share with -each and every one of you speaks to issues I well know and it is such a help.
Mil
PS I am being chased off the computer because my husband says I am on it too much and create my own problems.
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34 years post surgery I am still dealing with balance and other issues. Life is a dynamic process and sometimes one simply has to learn to adjust to the changes. Good luck in your efforts.
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Don't give in folks. I know everyone is different but I don't think my recovery is all that much different from what I'm hearing here. I did all the typical balance therapy and lots of it, had some minor improvement, but still had significant issues 4 years after proton beam. It wasn't until I went to the extreme that I saw real benefit and a return (or at least close to) the old me. I think standard therapy has limitations. You are usually inside with no good visual horizon to help establish a baseline. You are retraining your vestibular system to be more visual dependent. A broad flat horizon functions the same as the instruments in a plane that help pilots know which way is up in bad weather. One thing I know I disagree with heartily is that you can't rush recovery. Again everyone's circumstances are different but I was back on the water (with the blessing of Dr McKenna) a month after surgery back in training for the CCBC. There was no way I was going to wait. I knew that getting back to normal depended on it.
I don't know how many of you have read the standup paddleboarding thread but my recent post of the unintended experiment (not paddling for 4 months) really solidified my thoughts on the benefits. My return to wonkiness dissapeared after getting back on the water for just a week. Standup may not be the thing for you but find something that gets you outdoors where you can see the horizon and challenge your balance. Even if you bring a bosu ball to the beach and do balance exercises on it I think you'll find it more beneficial than indoors. Going out and doing it frequently, and sometimes pushing yourself to the point of exhaustion (much easier when the activity is fun) calibrates your system to understand up and down. When I come in from a hard surf session my head is rock solid...not the slightest hint of wonkiness. Unless its foggy...another way I know this works. It all goes out the window trying to surf in the fog when the horizon blends into the water. If you can't get outdoors for it use a strip of tape at eye level across the wall for visual reference while exercising.
I've also gotten a standing desk at work. Raises to standing height or I can lower it to sit if needed...usually only if I eat at my desk. I try to stand as often as I can. Not only does it give you better kinesthetic feedback and help balance but there is lots of current research that sitting for 8 hours a day is as bad for you as smoking. You also burn a lot more calories. At my size about 200 calories a day. that's about 14 lbs/year for those of you that count like myself.....every little bit helps..... ;)
The simple fact is that if I don't go out and push real hard I quickly revert back to wonkiness. It takes hard work but I'll take normal.
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This is purely anecdotal help. The vertigo I had in spurts about 5 years ago responded well to taking about 5 mg of manganese, maybe two three times a day. The vertigo would abate after I'd slept, after taking the manganese. It's available at health food stores, maybe GNC. But for sure at Vitamin Shoppe.
About 5 years ago, living in Albuquerque, I would get these spells and would fear driving because the road was moving to the right and I needed to vomit. I think this state is what you are mentioning as wonkihead.
I read in this Nutritional Therapy book by a husband and wife team, last name-Balch, he an M.D., she a nutritionist, that manganese is frequently lacking in people with ear problems. I showed the article to the ENT in Albuquerque. He read it and said, "if it works, what can I say?"
When the vertigo resumed two years after I moved to Austin, I was directed to the Emergency Room. They declared I'm so healthy, but gave me no help on my vertigo. I mentioned it to my siblings via E-mail. My sister in law told me the exercises her ENT or some therapist had had her do leaning her head off the bed in certain directions. I've done that and never had any more vertigo.
Take all this with a grain of salt, as it's just my experience.