ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: lrobie on August 29, 2012, 10:49:03 am
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Hi Forum Friends,
It has been six weeks since my middle fossa surgery at HEI. For the most part, I feel that I have done pretty well with my recovery. My biggest complaint is the bobble-head feeling. I have seen improvement, but it's taking some time and therapy. The bobble-head feeling caused me to delay driving again, but I'm happy to report that I've been out four times this past week. Looking side to side is the most difficult part of it. I just have to move my head slow. No one behind me has beeped, so I'm guessing that's a good sign. ;D
My balance is still off, but I believe it's brought on because of the bobble-head feeling.
I had some daily post-op headaches. Those have gotten better and I only get one every few days and are manageable with OTC pain meds.
My hearing is the same as it was. The tinnitus gets a little louder from time to time. I also am dealing with a sensitivity to certain loud voices or sounds. I believe I have what's referred to as "recruitment". I'm hoping that goes away as my husband's voice is one that bothers me. I've been putting cotton in that ear.
The site of the incision has healed nicely. There are times when I feel a little numbness in certain spots, but not the entire area. One area that has been sore is at the end of my incision right behind my ear. I have a feeling that is where one of the screws was placed as it feels like it is sticking out. ??? The soreness occurs when I'm wearing my glasses or sunglasses.
My taste buds went back to normal at about 3-4 weeks. Unfortunately, that has caused me to want to eat more. I still have some jaw pain which I'm reminded of every now and then.
The initial energy that I had after coming home is completely gone. This was even after being off the steroids for a couple of weeks! I would like the energy back as now I have to push myself to do my vestibular exercises.
I'm hoping to return to work on September 10th.
I thank everyone for your caring, support and prayers. I am so glad we have this forum!
Lisa
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Hi Lisa .....
Thanks for giving us your six-weeks post-op update. It sounds like a fairly normal course of recovery.
The bobble-head feeling should gradually improve as you progress in your recovery. If you are a coffee/cola (caffeine) drinker, you might try to wean yourself off of it entirely and see if it helps. I can always tell the difference when I have more than my usual one cup of coffee in the morning.
Your initial energy was most likely a result of the steroids still in your body, even after stopping taking them. I always feel great on steroids (not great for sleeping, however). Alas, we cannot safely stay on them long term! You will re-adapt to your old energy level again, but it may take awhile.
So glad your headaches are diminishing and your taste buds are back to normal ..... we have to rejoice in each individual progress.
If you are highly sensitive to certain sounds ..... particularly high pitched sounds like dishes clanking together, crinkling of paper, like chip bags, etc. ..... you may have developed hyperacusis. I never had it until after my first surgery. I keep ear protectors readily available when using the blender, the vacuum, etc. ..... and I had a musicians' ear plug custom made that I wear in movie theaters or loud restaurants, etc.
Onward and upward!!!
Clarice
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Hi Lisa,
I had middle fossa two years ago. Your recovery sounds perfectly normal. Fatigue is an issue, but it will take some time for your body to respond. I think the middle fossa procedure puts the brain in some form of shock, as I have read the brain is retracted. Clarice has some good points, and I suffer from dishes clanking along with other items. I'm going to look into this musician's ear plugs.
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Hi Lisa, you know I love to read your updates! Keep them coming!!! :)
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Lisa
Its wonderful to hear you doing great. You sound positive and I'm glad to hear that. You are an inspiration to those who are heading into surgery.
Mindy
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Lisa, I am thankful for your post as I am looking at surgery in November. I teach school and am wondering if planning to be off for 6-7 weeks is enough. I am in good health @50 and my tumor is 1.2 cm but will likely grow between now and November. I know no 2 people are alike, but do you think I've noticed your time off is about 7 weeks. Do you feel ready?
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chance1212,
Yes, I think I'm ready to go back. It will be 7 weeks and two days since surgery. I had lunch with my boss yesterday and she's very supportive. She said that if I can't make it thru the entire day, I can go home. I believe I will have to limit my time on the computer or give myself breaks. I'm feeling more secure about driving each time I'm out there. Like you said, we are all different. Thus, you may need more or less time off from work.
Good luck to you!
Lisa
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Clarice,
Does hyperacusis ever go away? I had it intermittently prior to surgery, so was hoping it wouldn't last long.
Lisa
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Lisa,
Thanks for the update!
Is the sound sensitivity in your AN-affected ear or the other one?
Prior to surgery, I had recruitment in the AN ear. I don't have that after translab, but my other ear is now more sensitive. Also, when I hear a loud noise, I get sudden very loud tinnitus in my deaf ear that only lasts for a second or so. It sounds kind of like "chee." Somehow, the AN side of my brain is reacting to sound coming from the non-AN side. I didn't think that was possible. There must be more cross-wiring than I believed.
I'm glad to hear you feel ready to go back to work!
Liz
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Lisa and Liz .....
My hyperacusis has not gone away at 4 1/2 years post first surgery (when it developed). Sometimes it is worse than other times, but never goes away. I just keep ear protectors nearby in the kitchen when my husband decides to put away clanking dishes or open chip bags, etc. I automatically put my musicians' earplug in my good ear before going in to movies or potentially loud situations.
You can only have hyperacusis in a hearing ear, since it is the abnormal reaction to normal sounds. Tinnitus, however, is usually the result of hearing loss so it is screaming in my deaf ear and slightly in my "good" ear. I will do everything I can to protect the remaining hearing I have. BTW, I do not think any hearing device affects hyperacusis, but I am not a doctor or an audiologist. There are ongoing studies about "masking" for tinnitus, but again, it must be done with your hearing ear.
If you are only experiencing the adjustment to having only one hearing ear, it may go away. Ask your audiologist that question ..... I asked mine and she said mine was most likely permanent at this point.
Hope that helps.
Clarice
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Hyperacusis sucks. I had this after surgery and I remember at St Vincent and at Seton everytime I flushed the toilet I cringed and hurried out of the bathroom because it hurt my ear. I hope this is temporary for you.
Mindy
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The hyperacusis is actually in my AN ear. Because I had middle-fossa, I still have about 60% of my hearing. I've been walking around with cotton in my ear during the day. I still have to tell my husband, and now my son, to lower their voices a little.
I usually stay up later in the evening and if there is a sudden loud noise such as the floor cracking from settling, I get a sudden loud sound like a bee buzzing in my ear. I cringe and feel pain as a result too. I also have sensitivity to loud flushing toilets.
Tinnitus is still there. It's loud, but I try not to focus or dwell on it as it could drive a person crazy.
Lisa
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Hi All,
I went back to work on Monday, 9/10/12. On Tuesday, the bobble-head feeling was much worse and I was feeling totally exhausted. I went home early. I have to say that going back to work caused me to take a few steps back. I'm exhausted all the time. Bobble-head is worse. I feel like my brain has been over-stimulated. And, of course, everyone is telling me that I look wonderful. Well, I feel far from wonderful.
I'm hoping to get some rest this weekend. I wasn't taking naps before coming back to work, so I don't know why I'm so tired.
Lisa
P.S. For those of you who went back to work, did you continue your vestibular therapy?
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Lisa, it was good to hear about your week. I just finished my second week of work. The first week I was continuing my exercises and working. I felt just like you and by the end of the week I'd go home after work and fall into bed and then stayed there all weekend. This week was much better but I totally stopped my exercises in order to not have bobble head and wonky feelings as well as exhaustion. It's Friday and I still have some energy. :). I know I need to build the exercises back in but I think I will wait until after work each day to do any of them. I'll let you know if that works better next week. Thinking about you as we continue to experiment together.
Karen
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It's the end of my second week of work and I'm wiped out. I have been having trouble sleeping and I think it's because I've been using caffeine to get through the day. Yesterday I called in sick, but I ended up working from home all day. At least I didn't have to make the drive or take a pay cut for the week.
My balance has actually improved dramatically since I started back to work. I'm not doing my vestibular exercises, but every time something makes me dizzy, I repeat that movement a few times. Oddly enough, I think driving may have made my balance better, purely from the stimulation to my system.
We had an All Hands meeting at work today, which involved seeing the movie, The Bourne Legacy. I got to the theater late and had to sit on the second row from the screen. The end of the movie involved a lot of fast action scenes. I was pretty wobbly when it was over. I felt like I'd actually been *in* the movie. This was my first time to watch a movie on the big screen since I started losing my hearing and balance a few months before the surgery.
Lisa what you are describing sounds like the recruitment I experienced prior to surgery. I think the difference between hyperacusis and recruitment is whether you have hearing loss in that ear. I'm worried about getting hyperacusis in the good ear I have left and find myself being very protective of it.
I hope it gets easier for you soon. Same to you, Karen.
Liz
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Liz .....
I'm glad you posted what you did about work vs. vestibular exercises. I rarely do the prescribed exercises now, but do exactly what you said ..... repeat the offending movement/activity. Somehow that seems to retrain the brain further in our normal day-to-day activities. I, also, was pleasantly surprised to find out driving is much easier than walking.
As for movies, I rarely go to the theater because it is just too much stimulation, both noise and vision-wise ..... unless I go very early before they turn off the lights to find a seat in the middle of the theater ..... and put my musician's earplug in my good ear.
Glad both you and Karen are back to work ..... even if it seems stressful and tiring right now ..... it will get better!
Thoughts and prayers.
Clarice
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I was very excited to be going back to work, but feel I may have went back too early. I did not go to physical therapy all week. I would do a few things here and there on my own (more of the eye movement exercises). Nothing seemed to help the feeling I have. The only way I don't feel this way is if I'm sitting with my head still. As soon as I move it, I'm reminded of the wonky head. So driving hasn't helped me to improve. I'm not sure what I will do when the time changes and it's just about dark by the time I leave work.
Another thing I noticed was that while my head is still, I can move my eyes around and not get that feeling. I'm trying to keep a positive attitude, but it's hard some days. I need to keep telling myself that it has only been 8 1/2 weeks since surgery and full recovery takes a lot longer.
With all that said, I have been able to get on the regular bike we have set up in our basement that is propped up using the Cycle Ops system. I swing my leg over to the other side and don't feel like I'm going to fall off.
Thanks for your responses and for listening.
Lisa
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Clarice, Where did you get your musician's ear plug? My good ear is starting to hurt sometimes and I want to head this off, if possible. I have been listening to audio books during my long commute. The sound system in our old van is not very good. I am sure it is making things more difficult, but a good story makes the commute much more bearable.
I am under a ridiculously tight deadline at work and have actually put in overtime this week. I have a late night meeting in a hour with our team in China, and I truly just want to lie down on the sofa and go to sleep right now. It is not easy to recover under these circumstances, but at least work is a good distraction. I am wonkier this week than I was last. I am not paying attention to some things that I should, such as getting enough fluids and enough rest, much less exercise.
I left work late yesterday and almost didn't make it home before dark. I have purposely not tried driving at night, yet, and I don't need to find out by accident that I can't do it, and be stuck miles from home.
We each improve at our own rate, but I do think I'd have been better by now if I'd been more diligent about my vestibular exercises. Then again, maybe not. If we don't work hard enough at recovery, in the beginning, can the brain just decide not to compensate any more?
Lisa, I hope it gets better for you soon. I'm concerned about the time change, too. Maybe we will be better by then.
Liz
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Liz .....
My audiologist had to make the mold to fit my good ear, but I have an Etymotic musician's earplug with a 15db filter in it. See: http://www.etymotic.com/hp/erme.html She ordered it for me three + years ago and I think it was about $45 out of pocket for me. Money well spent! I keep it in my purse and/or with me at all times (in a little case).
My "good" ear is my right ear. Thus, when my husband is driving, the hyperacusis causes a disproportionate amount of road noise to my right, making hearing him on my left very difficult even with the Ponto. Using the earplug eliminates the annoying high frequencies and I can hear him just fine through the Ponto and filtered normal right hearing. Much more fun to travel when you can converse with each other! ;D
The other time I use it the most is when I am in noisy environments such as loud restaurants, etc. It is also handy for loud concerts and movie theaters. It does not muffle my ability to hear, just eliminates those painful high frequencies ..... and I want to protect the hearing in my remaining ear at all costs!
Clarice
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Clarice,
Do you think the musician's ear plug would work in the bad ear...the ear that is extra sensitive to all these sounds? My problem is that I've been using the cotton in my bad ear which then makes it even harder to hear. I still have about 60% of my hearing in that ear. When I researched hyperacusis, it states that you shouldn't use the cotton because over time, you become even more sensitive. I've been trying to go without it, but it's very difficult as the noises seem be getting even louder. More and more sounds are getting irritating...laughing, son's voice, toilet flushing at work, shoes hitting the floor while walking.
Liz,
I believe that because I haven't had as much time to do the vestibular exercises, it has caused me to take a couple steps back and the wonkiness is worse. I'm not even sure if they coorelate. I'm going to have to post some questions about this and another issue.
Hang in there...I'm trying.
Lisa
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Lisa .....
Yes, it is true that you should not use any muffling-type device constantly. That's why I only use it in the car on road trips and in very noisy situations. However, the musician's earplug only filters out the harmful frequencies so not the same as putting cotton in your ear, which muffles all frequencies.
Therefore I think the musician's plug would be beneficial in your affected ear. Talk with your audiologist about it, though.
I keep an old pair of ear protectors in my kitchen to grab and put on when using the blender or unloading the dishwasher, etc. My husband knows now to leave the room to open crinkly paper bags, etc. Still have to remind the granddaughters not to squeal right beside me. ;)
Normal everyday sounds are things I am just learning to put up with ..... and like the tinnitus, sometimes I can successfully tune it out.
Thoughts and prayers.
Clarice
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Recovery is a S L O W process. Do not loose faith...sounds like you are improving. It really gets better, and you will live a wonderful life. I am 30 months post-op, still wonky 24/7, but I am used to it, and it even gets kind of funny sometimes. Just put your head down and keep moving forward.
James
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Another week post surgery. How are you all doing?
Karen
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James, Sometimes, it is hard to be patient. Thanks for the reminder that this is a slow process. Did you do vestibular therapy? I hear there is one good therapist in town, Bridgett Wallace at 360Balance.com. Was she your therapist? I'm wondering whether I should call her. I need to see if she takes my insurance.
Clarice,
Thanks so much for the link to the Musician's Earplugs! I plan to discuss them with Dr. Briggs tomorrow, when I see him about getting a BAHA.
Lisa,
I am finding that fatigue makes me much wonkier. Since I started back to work, I have slipped into using caffeine and sugar to boost my energy, but they are only making things worse. I don't feel like recovered much over the weekend. This is likely to be a very long week. Time for me to get back on the straight and narrow, at least in some respects. :)
Karen,
How are you doing?
Liz
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It's always good to hear how things are progressing for you.
The fatigue thing has me humbled. I really can't work and do vestibular exercises in a serious way on the same day, so I try to do exercises and activities on the weekends. I purchased an inexpensive disk to stand on. It has a half circle attached underneath and I have found this to be a very helpful balance exercise as I try to stand on it without falling. Paddle boarding is also great but it takes a lot more energy to get up to one of the lakes in order to do it. Kayaking was fun on Saturday but then I was in bed the entire next day.
Please keep the updates coming.
karen
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If we don't do our vestibular therapy, does the brain at some point decide not to compensate any further, making it too late? Or should we just relax about this whole thing and do what we're able to do?
I'd really like to do stand up paddle boarding next summer, when I have more energy than I do right now.
Are you doing formal vestibular therapy, or just the exercises that House sent home with you?
Liz
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That is an excellent question and I'd really like the answer. I'm doing exercises I received from Clarice, and a local wonderfully helpful AN postie and exercises I downloaded after doing a search for vestibular exercises for acoustic neuromas.
Karen
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Liz and Karen,
I have to admit that I didn't always do my vestibular exercises when I was still home. I also didn't walk as much because I believed with my husband getting me out and about, that would make up for it. Now I question whether I haven't progressed as far as I think I should have because of that. I have read on the forum about people who stopped doing their exercises only to be going backward in recovery.
According to what I've read in the Improving Balance booklet, the brain needs to be challenged often so that it makes those adjustments. If you're not challenging it, your other balance mechanisms are used rather than your inner ear vestibular system. However, it reads that you want your inner ear vestibular system to be the priority or main form of balance.
Now that I know this, I'm working harder at those challenges and am optomistic that I'll see progress. I'll let you know how that goes.
Take care,
Lisa
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Just thought I would throw my 2 cents into the discussion...I am about 9 months post-op and I still deal with some wonkiness at times. Believe me though, it gets better. When I went back to work, I also felt like it took me a few steps backward...but you have to remember that you had major surgery and your body takes time to heal...after a few weeks of working I started feeling much better. The work stimulates your brain and your senses. I now work-out 3-4 times a week...run 10-12 miles a week...and try to play basketball once a week. I will admit that playing basketball has been the hardest thing...all the movement and coordination really excentuates (sp) my wonkiness. It is great vestibular therapy for me. Don't let little setbacks set you back...keep pushing forward and it will get better. :)
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Thanks Lisa and Rick, you are motivating me to try to add exercises back into my work days even though it makes me feel wonky. I so much want to continue to improve. Work is better this week. I love this discussion list. Thanks!!!
karen
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Just wanted to add something ..... The vestibular exercises are great to use when one is really in a wonky stage. However, the goal is always to resume all of your normal activities without feeling wonky. To that end, it seems logical to me that once you are doing your normal routine with no difficulty, daily vestibular exercises are probably not as needed.
It is always a temptation to avoid doing those things you know makes you wonky, but in the end, those are the very things you should be doing to stimulate your brain to learn how to handle it. Truthfully, it does work.
With compromised vestibular systems, we all need to be cautious about quick turns ..... for some of us that may mean forever ..... for others, it may mean only when doing a new/different activity than before.
Clarice
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Thanks everyone for the input. At 10 weeks post-op, I'm still wonky during the time I'm awake. Right after I do the vestibular exercises, I feel a slight improvement. I've been doing the exercises with my eyes closed since last Saturday. On my initial attempt, I would have fallen over had I not had support on both sides of me. I've already noticed improvement with my one foot in front of the other with eyes closed exercise. I hope this is a good sign.
Clarice - I have to admit that I didn't like going for the walks because it was not a pleasant feeling. I also still don't like going into grocery stores, etc. because of the overwhelming wonky feeling I get. Now that I know this will help challenge me, I need to get back out there!!
HoosierRick and others - before you started feeling better, did you have those days where you felt like it was never going to get better?
Have a good day!
Lisa
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I most definitely had days where I didn't feel like it was going to get better...especially early on. I know it can be frustrating to feel that way...there were times that I cried, I was so frustrated because I didn't feel like I was improving, but I kept with it and eventually I started feeling better. I don't think I will ever be 100% "old" normal, if you know what I mean, but I will try to get as close as possible. Hang in there and keep positive.
BTW, the eyes closed exercise kicked my butt for quite a while!! I still have to concentrate hard when walking in the dark.