ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: wcrimi on November 11, 2008, 08:17:50 am
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I want to thank everyone for their prayers and kind wishes.
The surgery was a sucsess. The entire tumor was rempoved and at least some functionality was retained in the hearing nerve in the bad ear. I would estimate it's about 50% now, but the doctors have suggested that that is likely to improve in the next 4 weeks. The ultimate result will not be known for several weeks after further healing and hearing tests are done.
As a bonus, typically in these cases I was told the patient losses two functional balance nerves on the impacted side which get compensated for over time by the other side of the brain . I don't now how he did it, but DR.Post managed to save what he believes will be at least partial or full use of one (much rarer but harder to be test). That means when I am fully healed, it is likely my balance wil be even better than for the typical patient. He said from a neurological perspective, if you looked at 1000 acoustic neuroma cases, my result was somewhere in the top 50. I paid for him out of pocket because I was told I was getting the Michael Jordan of this condition....well it appears hit hit the game winner.
Right now my balance is poor. I need to walk with support, but I'm getting around well enough and even bathed myself. I also have some transitional symptoms with double vision in some fields. If that does not correct in time, (and the doctors think it will), we can cope with glasses. The doctors feel it was not a result of the surgery because they were nowhere near those nerves, but the surgery mave heightend some other visual wekaness that already existed or irritated a nerve temporarily.
The major obstacle was that on the day of my scheduled release, a medium sized kideny stone decided to move (nice timing huh). I was in such pain that they had to give me something stronger than morphine for relief. It did not pass and has moved to a sensitive area, but is pain free now. It will be be have to dealt with shortly. I'l start talking to my urologist later today.
I feel well enough today to thank you all again.
I'll log on from time to time, but not often given how much I still have to deal with.
THanks for all the support.
You can contact me here but my responses will be very limited. I need rest.
Wayne
(Hi Wayne! Congrats to you and being a postie! Just FYI only... I had to remove your personal email address here... not allowed to be publically noted but folks are more than welcome to PM you here where you can share the info with them. Please get some rest... and again, congrats to you! Phyl)
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Congrats to your successful surgery and your recovery! I am 4 weeks out this week - and I am feeling much, much better!
Just remember to REST and sleep -
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Wayne:
My heartfelt congratulations on your successful surgery. I agree, you hit the jackpot with Dr. Post. I trust the vision and balance deficits will slowly but surely improve and you'll be in great shape by Christmas or early next year. We can all understand your need to rest and recuperate as well as deal with the kidney stone problem. Just know that we're thinking about you and many will continue to pray for your complete recovery.
Post when you can.
Jim
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Wayne -
glad to hear your surgery is over and you're on the road to recovery.
Your balance will be "off" for a while, but you'll get there.
Fatigue is a big issue post op, so rest and don't overdo.
Stop in when you can.
Jan
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Hey Wayne,
Welcome to the other side. Sleep, eat, walk and nap, like a terrier. I hope you heal well and fast.
Best,
Marci
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Best wishes, Wayne.
I don't envy you the kidney stone, I passed a little one some years ago, and I think I would choose having another AN over having another one of those. :P
Take your time recovering, it will get much better.
Steve
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Hi Wayne,
I'm glad to hear your surgery went so well. You have been very much on my mind. Sorry to hear abou the kidney stone, it sounds awful -- talk about timing. Take care of yourself, rest often and be paiient. These are the keys to a quick recovery, in my opinion anyway.
Wishing you all the best for an uneventful recovery,
Wendy
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Great news Wayne and I'm very glad you were able to post here so soon, this says much about how you feel right out of the "chute"!
I know all too well (well it's my hubby actually) about kidney stones as he has had them just about every other year for the last 15 years! He has a huge one in his kidney that keeps "calving" a smaller one. He doesn't have the excrutiating pain that accompanies the movement of the stone as he's built up scar tissue over the years. I hope yours will "pop" out quickly to give you more relief. These little buggars cause so much pain, similar to labor pains, it's too bad they don't produce something worth the effort like a diamond or ruby!
Stay well and I hope your recovery is a speedy one in the balance area.
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Wayne-
So glad to hear that your surgery was a smashing success. Get lots of rest and visit when you can.
Debbi
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Wayne,
My thoughts and prayers are with you!! Congrats on your road to recovery! My father is now a little over a week...just went to dr today to get stitches removed.....REST REST REST......the best three words of advise I can give you!!! Good Luck!!
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I'm feeling better overall.
As of yesterday, my balance, strength, occasional bouts with difficulty focusing (double vision), foggy feeling etc... were improving. I'd guess I've had about 50% of my hearing in the bad ear (maybe more). I could still hear an occasional pulsing, high pitched sound or hissing in the ear and it also felt clogged on that side a lot of the time but the symptoms in general were improving.
Yesterday, I went to have the stitches removed. I was having by far my best day ever when I saw Dr. Post. He said I'm doing great and that all these symptoms would probably settle down in coming weeks (I am only 2 weeks out of surgery). The clogged feelling went away and my hearing was probably 75%. I was totally thrilled.
Everything was going great yesterday until late last night when the hissing/ringing clogged feeling in my ear went into overdrive late in the evening. It was so loud I couldn't get to sleep and could hardly hear with that ear. For some reason, it stopped again after a couple of hours. I got to sleep, but I woke up with the same loud sounds and bad hearing. I'm hoping this is just a short 1 step back, 2 step forward process. :(
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Hi Wayne,
I think the reason for the clogged feeling in your ear is probably from post-surgical swelling. My doc mentioned this to me and said it should settle down once the internal swelling is gone. I am 3 1/2 montrhs post-op and this feeling has been coming and going for a couple of weeks now, and each time my ear feel normal a little bit longer (although I am SSD as a result of my translab surgery). Hopefully the same will be true for you too, although it seems to be happening more quickly. The difference may be that I had translab you had middle fossa so we may not have all of the same issues with swelling in exactly the same areas. I'm very happy for you that all in all you seem to be doing very well. Obviously, you made all the right choices for you! Congratulations!!! ;D
Wishing you continued good healing,
Wendy
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I basically still feel the same after a little over two weeks.
The operated side still feels kind of clogged most of the time and a lot of the time I feel a little foggy. It's sort of like when you first wake up and feel like you need a cup of coffee to get going except that I feel that way all day long. It usually gets worse after I do some reading or spend time on the internet. I just relax for awhile and close my eyes. I guess that helps a little.
My balance was improving very rapidly for the first 10 days or so, but now the improvement seems to have either stalled or gone backwards a bit. I'm steady enough to not fall, but I start veering off here or there when I'm not paying attention.
The other night my trouble focusing my eyes totally vanished (which made me happy), but the problem was back yesterday and continued today.
I was very encouraged about my progress after he first 10 days and felt sure I'd be able to return to work after 4-5 weeks. That was the recovery period suggested to me in one of my consultations, what I told work, and what the note I got from the surgeon suggested. But I'm a lot less sure now. I feel like I'm totally stalled in the last week and not getting any better.
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Hi Wayne,
I think many of us experience the back and forth nature of this recovery. After 4 months I have noticed the pattern, but some things are indeed getting better, even when I've relapsed. Nerves are finicky, the brain is complex and the body does what it needs and wants to do. Sometimes I think I'm so much better and then the next day all bets are off. It is frustrating but you will get better. Try to ride the wave and adjust when necessary.
Marci (from snowy cold Ohio where a surfing analogy is the best I can do)
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Hi Wayne,
The recovery from surgery is not always steady progress, as you have seen and as Marci has said. Some days are better than others, sometimes it's two steps forward one step back. Your surgery was not long ago. Like you I saw a LOT of improvement in the first few days and weeks and then nothing or a few steps back and then eventually, more progress. Your body will heal in its own time -- being active when you feel up to it and getting the rest you need will help. Patience is a key factor in recovery. I've always said and will always think that recovery from this surgery is a lesson in patience.
Best wishes,
Wendy
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Frustration for sure in the post recovery period for me too. I along with many of us had a longer recovery, but if you can grasp onto the "little" improvements, even if the next day they are gone or not up to par, shows you WILL recover.
Don't fall into the deep pit of negativity, for some it takes more than the 6-weeks, perhaps you can return to work (don't know what that entails) as Marci did, but your functioning will be slower and the fatigue factor will rear it's ugliness towards the end of the day where home, couch, bed will be your best friend for awhile.
Eyes closed for 5-10 minutes at work will help tremendously to "shut out" the world as your eyes/ears/neck and feet work overtime for you now to keep you upright. So, be nice to your system that is working really hard for you by resting and understand why you are fatigued.
Essentially you have to come to terms with the fact they took away your balance nerve and your body knows this. You have to get used to the "new" you in your own way and time will help. We/you are forever changed, but good news is you can get back to functioning almost 98%!
May you heal FAST!
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Well, it's a little over 3 weeks since my surgery now. If I made any improvement over the last week, it's hardly noticeable. I have gone on a few short walks around the neighborhood (accompanied) and got around fine, but I'm still a little wobbly/dizzy. It's kind of a strange feeling that's hard to describe. It's partly balance, partly dizziness, and partly feeling like I just woke up and need a cup of coffee. Not sure if that makes sense, but that's the best I can describe it.
I also still have a congested feeling on the operated side. I think that may have improved slightly, but it varies from day to day. Yesterday was pretty darn good. For awhile it almost felt back to normal. Today is not so good.
My hearing remains the same. I would guess I have somewhere between 50%-75% of my hearing on the operated side. It's also slightly muffled. However, I can have a conversation on the phone with the bad ear even though it's low and harder to make out what the person is saying. I figured that was a good test. I usually just switch to the better ear after I test it. I will have my hearing tested on 12/9 with Dr. Smouha at my 1 month visit. Naturally, I'm hoping it improves further, but if this is the best it gets that fine. At least I was lucky enough to retain some useful hearing. ;-)
When I saw Dr. Post, he said I could drive. However, he can't feel the way I feel and I know I am nowhere near ready to be behind the wheel. It would be like driving with a few drinks in me. This is one of the things that has me worried about the balance issue. I have to drive to get to work. I'm not on disability or anything. No work, no pay. I think they will allow me to extend my time off if required (I'm scheduled to go back 12/15), but I don't have unlimited resources to take too much more time off.
If anyone can tell me how they felt after a little over 3 weeks (balance/dizziness wise, driving capability etc..) I would really appreciate it. It's hard for me know how my recovery is going relaive to other people and what I might expect going forward. Does another two weeks of recovery sound like it may make enough difference that I could be ready to drive? To be honest, I think I could do it now if I absolutely had to, it would just be a risk NOT WORTH TAKING. That more or less describes where I am now.
Thanks Wayne
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Hey Wayne,
My surgery was the day after yours...from reading your post, I think I'm feeling just about the same as you are and from what I understand, we are really right on track recovery wise. I took a walk yesterday and did ok, but it was very weird. There is NO way I could drive right now...I was told I could drive as soon as I could turn my head both ways without getting dizzy - not there by any means yet.
But, please have hope! It is my understanding that things may improve quite a bit within the next two to three weeks - slowly for sure, but improvement all the same. Everyone is, of course, different and we heal at different rates, but I am hoping you will see much improvement very soon! Know it must be stressful trying to figure out about getting back to work when you don't feel confident about driving yet. Think as positively as you can and keep on walking as I believe this will hlep (both of us) with the dizziness.
Keep us posted and take care,
Cindy
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Wayne,
Have you been through vestibular rehab? If not, you will want to do this as the exercises are specific to re-training the brain/balance system so you can turn your head from side to side without experiencing vertigo/dizziness.
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Hey Wayne,
My surgery was the day after yours...from reading your post, I think I'm feeling just about the same as you are and from what I understand, we are really right on track recovery wise. I took a walk yesterday and did ok, but it was very weird. There is NO way I could drive right now...I was told I could drive as soon as I could turn my head both ways without getting dizzy - not there by any means yet.
But, please have hope! It is my understanding that things may improve quite a bit within the next two to three weeks - slowly for sure, but improvement all the same. Everyone is, of course, different and we heal at different rates, but I am hoping you will see much improvement very soon! Know it must be stressful trying to figure out about getting back to work when you don't feel confident about driving yet. Think as positively as you can and keep on walking as I believe this will hlep (both of us) with the dizziness.
Keep us posted and take care,
Cindy
Thanks Cindy. It might make sense for us to compare notes from time to time to see how we are doing since we were operated on at the same time. I feel better knowing that we seem to be at the same stage of recovery and are on schedule.
The last couple of nights I had very mild headaches that were gone in the morning. What used to be a a very low high pitched sound in my ear before surgery (that's how I was eventually diagnosed) has turned into a louder kind of hissing sound (I'm hoping that's related to the ear area still being clogged and that it may eventually go away).
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Wayne,
Have you been through vestibular rehab? If not, you will want to do this as the exercises are specific to re-training the brain/balance system so you can turn your head from side to side without experiencing vertigo/dizziness.
I don't even know what that is.
Can you give me any diection on how to get started?
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Hi Wayne,
Vestibular rehabilitation are exercies you do to improve balance/vestibular function. These exercises can be done on your own or with a physical therapist. If you would be interested in going to a physical therapist you will need a prescription from your neurotologist and referral from your PCP. When you are looking for a place to go for PT, I would strongly suggest that you ask if they offer vestibular rehab and if they have ever treated a patient who has had an AN. Although I really liked the PTs I worked with and they did help me, I got a very strong feeling I was the first AN patient they'd ever had. I had to push them to teach me more advanced exerciises than they originally had me dioing because they weren't sure how much I could handle. If you would like to try doing some exercises on your own, I posted most of the exercises I've been doing under AN Issues on the "ready to give up" thread -- I think you might find them helpful.
Best wishes,
Wendy
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Hi Wayne,
Vestibular rehabilitation are exercies you do to improve balance/vestibular function. These exercises can be done on your own or with a physical therapist. If you would be interested in going to a physical therapist you will need a prescription from your neurotologist and referral from your PCP. When you are looking for a place to go for PT, I would strongly suggest that you ask if they offer vestibular rehab and if they have ever treated a patient who has had an AN. Although I really liked the PTs I worked with and they did help me, I got a very strong feeling I was the first AN patient they'd ever had. I had to push them to teach me more advanced exerciises than they originally had me dioing because they weren't sure how much I could handle. If you would like to try doing some exercises on your own, I posted most of the exercises I've been doing under AN Issues on the "ready to give up" thread -- I think you might find them helpful.
Best wishes,
Wendy
THanks Wendy. I really appreciate it.
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Hey Wayne,
Yes, let's do compare notes periodically on our progress! I think my energy level is returning nicely, but the dizziness continues to be about the same - not too good. I, too, am experiencing some pretty loud sounds, but assume it's all part of the brain adjusting and healing process. This morning I had some pretty significant shooting pains in my ear...went away pretty quickly, though...
Wendy, I'm glad you mentioned where you posted those vestibular excercises - that was a great post and I want to try some of them, but I couldn't remember which thread you had posted it on. I'm going to go see if I can find it right now. Thanks!
Take care, Wayne, and keep us posted!
Cindy
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Cindy,
We seem to be having the same sort of dizziness issue (at least similar). There is another thread called "wonky head" that you may want to read. I think that's what we may be experiencing.
I am curious, did you have normal hearing before surgery and did you retain all or part of it?
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Hey Wayne,
Yes, wonky head it is! I'm going to try to start those vestibular exercises that Wendy posted...
Regarding my hearing, it was very nearly perfect pre-op. I certainly could not tell I had any loss - just the constant tinnitus. However, I did have a translab, so I went into surgery knowing I'd come out being SSD. My doctor said that given the location of my tumor, there would only have been a very slight chance to save my hearing using the other surgical methods. He recommended translab and I agreed completely. It is not as bad as I thought it might be, but certainly is strange. I am holding off on a hearing aid decision til later in the recovery process.
Hope you're continuing to improve each day as I feel like I am!
Cindy