ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Adrienne on June 04, 2009, 11:27:10 pm
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Hi everyone,
Thanks for the well wishes you posted after my hubby's quick little update. Poor guy, I didn't prearrange him to update anything. That was done last minute sitting at my hospital bed, by memory (mine) on his little iPhone. Just thought if there was some quick way to let you all know I was O.K., that we should do it.
So that was last Tuesday, May 26th. The date was up in the air for a while, for fear of getting bumped. The day before, I finally got my call that it was 100% mine and we were moving forward. Super great news. I wasn't sure if I would be able to do it, but I managed to go out that night and play my last game of soccer for a very long time. It was a SUPER GREAT distraction, and killed off several hours that would have just been spent stressing out. Can't think of a better way to spend the night before surgery!
Surgery was uneventful. They estimated about 8 hours, and it took just about that (maybe 8 1/2 hrs?) I had the Retrosigmoid approach done. When they came out, they told my hubby that it went well, they felt like they got it all, they were able to preserve my facial nerve, and they just weren't sure about my hearing. I was warned I only had about a 25% chance of keeping any hearing, and that even if I did-it would be much less. I had pretty much written off hearing at that point (which is a shame, since my last hearing test showed ABOVE NORMAL hearing! Especially amazing, considering it was only the hearing loss that tipped us off to anything being wrong and prompted the MRI that got this ball rolling. It's truly amazing that I'm on the other side of this already......). So I don't remember much from the first night after surgery, but I do remember being awfully sore on the AN/surgery side, and not being able to rest my head at all on that side. My nurse kept asking me to try, but I was confused and told her that the bandages/head wrap were preventing me from doing so. I was SURE I had on some big turban type wrap. In the middle of the night, I reached up and touched along behind my ear-amazed (and confused) to find only a small gauze type bandage. There was no turban wrap at all. The only reason I was sure I had it is because I had absolutely NO hearing on that side. The silence messed me up, and made me feel like my ear was plugged with something. That was my first experience with not hearing. I shed a few tears at the loss of my hearing as that reality set in in the middle of my drugged up haze in the middle of the night, but quickly went back to the feeling of elation that my face was able to smile a huge symmetrical smile immediately upon waking up. I knew what a great sign that was.
Prior to surgery, I was having a lot of trouble with my Trigeminal Nerve. It was shocking me and causing extreme pain. The neurosurgeon told me that my tumor was quite extensively involved with this nerve, and as a result, I have a few minor complications that may or may not go away (I'm told). Exactly half of my face has pins and needles. It's like coming out of dental freezing, but never fully getting out. The sensation/touch is different. Half of my tongue is 'fat' feeling, and it extends back into the top of my throat a bit too. My teeth have no nerve sensation on that side either (can actually CHEW ice cream, which I could NEVER do before b/c of sensitivity). In addition, it appears that I don't produce any fluid on the left side of my face. No eye fluid (and reduced feeling on the left eye ball), and no nasal fluid either (always dry and cracked in there! Odd!). On the plus side (the very BIG plus side), I no longer have any Trigeminal pain AT ALL. Love that. I have no idea if these other things will go away over time, but they really are just a minor inconvenience in the big scheme of things. I CAN SMILE, CLOSE MY EYE, and get along otherwise perfectly! SO HAPPY!
As for my head........it feels SO FULL and filled with pressure. I would love a little pin prick to alieviate some of the pressure! LOL. My ear feels like it's been packed with cotton balls. How long does this full/tight feeling last? I'm SO ready for some relief!!
As for my ear.......would you believe some of my hearing has come back? Crazy. I realize it may not stay. But for now, I'm enjoying things 'in stereo'. It's significantly reduced hearing, but hey-I'll take what I can get. It would be WONDERFUL if it stuck around! Now......the new CONSTANT ringing in that ear.....I could definitely do without. YUCK! I never had any ringing before, this is all brand new. Is it possible that this could go away/be reduced after some more healing time? Or is this just a new reality?
As for my balance.......WOW. Would you believe NO difference from before the surgery? Truly, I believe it was DEAD prior to surgery and I had already compensated. I feel so great in this area, and can hardly believe I've escaped that side effect (hope I didn't just jinx it! LOL). I'm doing really well so far, and just went on a walk with my hubby for a few blocks tonight with no issues. Hope that continues!
So, I'm completely exhausted still (hence, the delay getting on here to tell you how I'm doing). I know, I know. Normal. Hopefully I'll start to see some improvements slowly. Tomorrow I go to the GP's to get my stitches taken out (they told me to, but it seems so early? 10 days after surgery.....). You would not believe what a fantastic job my team did on my incision! They barely shaved ANY hair, and the incision line is buried in my hair so well that once the stitches come out I could just walk down the street and NO ONE would know what I have just been through. Seriously, I need to figure out how to post pictures to share! Crazy!
I know I'll think of more things, but I guess that's good for now. Thanks for all of the support everyone! I'm happy!
Adrienne
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(http://i622.photobucket.com/albums/tt309/asburyfamily/DSC02353.jpg)
All wired up and ready to be wheeled into surgery. Glad I didn't know I looked like that until AFTER. How scary!
(http://i622.photobucket.com/albums/tt309/asburyfamily/DSC02357.jpg)
Mid day the day after surgery. Up to eat dinner!
(http://i622.photobucket.com/albums/tt309/asburyfamily/DSC02361.jpg)
Two thumbs up. Feeling pretty good on day 2, and so thankful and happy!
(http://i622.photobucket.com/albums/tt309/asburyfamily/IMG_3655.jpg)
Check out that tidy work! Complete disbelief that they left all my hair. How could they do that and not have it get in the way? Wow! No one warned me they would do that, I was expecting a shave job!
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Congratulations Adrienne! You look absolutely beautifu!!! Wow, before and afters are really great! So very happy that your surgery went so well and that you are in such good spirits! Rest and allow yourself to be pampered! You have earned it! Blessings coming your way and a continued great recovery!
Jackie
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Adrienne,
Congrats, you postie! :) Well done! You look absolutely fantastic and tickled to hear the update! Please hang in there, get rest as needed and continued wellness wishes to you!
Congrats! Welcome back!
Phyl
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Adrienne,
Congratulations on a great surgery. We may have to hide these pictures away somewhere. They might give people the impression that AN surgery is a piece of cake!
You do look wonderful so soon after surgery. Keep your eye moist - do you have eye drops? Who knows about the other stuff, they may go away or you may get used to them. Chewing ice cream doesn't sound so bad.
Glad to hear your are doing so well. Take care,
Steve
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Adrienne .....
You look wonderful!! So glad you have had such a smooth surgery and recovery. The head fullness will gradually fade away ..... some of that feeling is due to the reduced hearing in your ear. Things sound so different, plus the tinnitus masks much of what you are hearing.
My neurosurgeon said I could expect to have improvement in my hearing for up to three months post-op but I don't think it changed much for me after the first couple of weeks. I have a digital hearing aid now which helps tremendously for conversation in an otherwise quiet room.
Keep us updated on how you continue to do.
Clarice
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Wow, you really look good - even that first day after surgery! And sounds like things are going well on the inside as well. Great recovery! Do be sure to continue to rest some, though...for us ;)
Cindy
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Hi, Adrienne.
Congratulations on a great outcome. My neurosurgeon told me that my increased tinnitus may improve with time. I hope it does for you.
I know you're thrilled that the side effects you anticipated did not come true.
Best of luck with continued stereo hearing.
Nancy
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Welcome back, Adrienne ~
Thanks for the informative account of your surgery - and the photos. Although, like all of us, you didn't come out of AN removal surgery completely 'unscathed', you certainly look good. :) The fact that your balance is basically unaffected and your hearing seems to have been preserved are all huge victories! The tiny bit of hair shaving done is certainly a plus. Granted, the feeling of head fullness, the ringing, the dryness and of course, the extreme fatigue are all 'normal', as you noted. Hopefully, these will all resolve in time...a short time.
Kudos to you, Adrienne on a splendid surgery outcome! I trust your recovery will also go well and you'll be back to your normal activities before you know it. Good job! :)
Jim
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Congrats Adrienne!
You look great.They really did an awsum job.No turbon woohooo!
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congrats on becoming a postie. Keep up the good work with recovery. Sounds like you are flying thru this. BTW is that Vancouver B.C??? or
JO
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BTW is that Vancouver B.C??? or
JO
Yes, Vancouver, B.C.!
Thanks everyone! Got my stitches out today, and feel great. Feels like the first day of the rest of my life! (a tad dramatic, but feeling so happy today I can barely contain it!)
Adrienne
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Adrienne,
what a wonderful outcome! Congratulations, I am very happy for you. It seems that Dr. Akagami works miracles, and your story confirms the other reports that I have read on ANAC. You are so lucky that he was your surgeon.
Best wishes for a speed recovery.
Marianna
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Adrienne, You are exactly what I needed to read and see your photos! I have 1.6 cmm left sided AN and I have been worried to death. After seeing you! You have put me at some what ease! I have all these horriable images in my head and that is all I can think about. BUT you Adrienne have inspire me. I hope when my surgery date comes and I have the same great out come. Please continue to keep us posted on your progress. Many thanks, Debi
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Wow. You and Helene can be the poster girls for surgery!
BTW, I love Vancouver BC. It is one of my favorite cities.
All the best Adrienne,
Kate
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Hi Adrienne,
So glad to hear from you! It's great that the nerve pain is gone. I think that the hearing / tinnitus will adjust and settle down with a bit of time.
I couldn't believe how little hair they shaved - that's great!
Most of all, I'm glad you're so upbeat and feeling happy and relieved with your good progress.
Keri
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Your story is surely so encouraging to all who are W&W or preparing for surgery! I am now 3 1/2 weeks post-op and feeling pretty well except for headaches and head fullness which are both getting less as time goes on. The pics were great! Take care and continue to give yourself the gift of rest :)
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Awesome, Adrienne!
I knew you would rock it. There will be little speed bumps and hurdles in your road of the AN life, but nothing you can't handle after this.
Keep the positive thoughts and take each day nice and slow while you can, ya hear?
Maureen
~ Just realized what a typo I typed- ya HEAR?
Uh no, actually you don't.
Sorry bout that, welcome to the SSD club :-[
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~ Just realized what a typo I typed- ya HEAR?
Uh no, actually you don't.
Sorry bout that, welcome to the SSD club :-[
Actually, I DO hear!!! That's the most wonderful thing! I HEAR! Can't believe it, and don't know how long or if it will last, but I DO! So happy!
Thanks for the notes everyone! Still feeling pretty darn good. Can't wait until the pressure, headaches, ringing and numbness get feeling better, but I know I have nothing to complain about, so I'll just sit quiet and enjoy what I have right at this very minute instead of rushing ahead. Life is good!
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Yea, you can hear! I jumped to a conclusion there. :D
You had a nice size tumor there, so you are doing great, and your good spirits will be contagious to all those who are expecting surgery soon.
Thanks Adrienne :D
Maureen
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Hi Adrienne,
I have been watching out for your post. I am so glad you are doing well. It will only get better from here on. By the way, your pictures are great.
Vivian.
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Hi Adrienne:
I also had my AN surgery at VGH by Dr. Durity (Dr. Akagami took over from him - I was Dr. Durity's last AN patient :-)!! So good to read that your surgery went so well! All the best.
Cecile
Chilliwack, BC
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Hi Adrienne,
It's so fantastic that you actually hear! I'm so glad for you! For some reason I also wish I wake up in the morning and could hear with my right ear, but anyway I'll accept that it is like it is. I still consider myself to be a very lucky person. I came out of this surgery with very, very little issues. It is only the balance and the hearing and that's nothing in my opinion. Life is great! Tomorrow, it's time for summer vacation for all pupils in Sweden and it continues until 18th August and I will be with my class for an hour and then take a cup of coffee with my collegues. I'm so glad I can do this! I couldn't imagine pre-op that I would feel so good after only three weeks. I think I'm blessed! :D
Hugs from Helene in Sweden :)
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Adrienne - so glad you are doing well. I have been following you the whole time during my recovery. You looked great in your photos. Hopefully you felt a tad like you looked!
I can actually feel my ear the past few days! I was not sure it was mine at first :o) Still feels weird to touch behind it. How's your fullness/ringing?
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Wow...not sure how i missed this other than I haven't been on the forum as much the last couple of weeks....nobody mentioned how busy the weeks leading up to surgery are... ;)
Amazing....hard to tell you had surgery...you look great. So happy for you that things went so well. You'll be back on the field before you know it.
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Alicia-Thanks! I read your update too,and I'm happy you've done so well, despite all the extra drama! LOL Hope you continue to improve over the coming weeks.
Helene-You sound so happy with your results too! Glad everything went well for you!!
I have a lot of fullness still, but I can tell it is less so than the first couple of days after the surgery. Feels like that ear is still 'plugged'. The ringing is all day long. Oddly, this isn't as bad as what I imagined all day ringing to be. The ringing is new to me. It's odd that even though it's there all the time, there are times I don't 'notice' it. Never thought that would be possible. I'm still hopeful that it will go away, but I'm not sure if that's naive or not (?). It's been almost 3 weeks since the surgery and the ENT said that the ringing would definitely get better. Haven't noticed any improvement yet.....
The headaches are concerning me though. I've had 2 1/2 days straight of headaches with no relief. I'm just on Tylenol 3 right now, but it's not working (?). I only have 3 more days of T3 left and then I'll need something else. For those that have ongoing headaches, are you on prescription drugs or over the counter drugs? Not sure if I should be going to my GP for a prescription or not...(?). I don't have my follow up with the neurosurgeon for another 4 weeks, and I'll need something in the meantime!
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nobody mentioned how busy the weeks leading up to surgery are
I'm sure you've been frantically cleaning like the rest of us pre-op, Bob. ;)
I was fortunate to have no headache issues post-op, but I noticed yesterday that my tinnitus seemed a little less annoying. Of course, today it is back full-on.
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Adrienne,
A few of us on the forum take neurontin. My family dr did not want to prescribe anything but T-3's. All they did was upset my stomach something terrible. I think you might need to see the ENT.
Wishing you luck, and I am so sorry you are suffering.
Anne Marie
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Adrienne,
Sorry to hear about the headaches that don't respond to the t3's. Out of curiosity, is it the same type of trigeminal pain from before surgery, or is it different?
Hopefully you can get a handle on it.
Praying for relief. Otherwise, looking good! Glad the fullness is subsiding a bit, and the tinnitus isn't as noticeable at times.
Still give it lots of time.
Rest, rest, walk, rest, eat, etc.
Maureen
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Adrienne~
I had tons of bad headaches too after my surgery and I took all the pain meds. I know it sounds a little corny, but I really felt like massage helped my headaches a TON! First, I went to a massage therapist AT THE HOSPITAL ~ they are trained to deal with surgical patients and they know their stuff ~ not like your "normal" massage places. They dealt with my head and neck and incision and it really worked. Now, I do a little "massage" of my own at home. My husband does my neck and shoulders and I do my head and incision. I use vitamin E oil on my incision and it really helps loosen things up.
Wishing you relief and sending all good thoughts your way.
~Kathy : )
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I'm 4 weeks out from surgery now. Crazy how fast time flies. My sister has been out to visit me and help out for the last 10 days or so, and just left this morning. Tomorrow I wake up and go it all alone. It's been so nice having someone here the entire time since the surgery!
I'm feeling better and better all the time. It's a fairly slow process though (I know, I'm impatient!). The fullness in the ear is still there, but definitely much less than the first few weeks. The ringing has gone unchanged. Constant, with no relief (surprisingly, thinking about how this would sound prior to surgery was so horrible, but living with it is less horrible than I imagined. I think it's because even though it never goes away, I can tune it out at times). The headaches are getting better too. Less severe, and less often. Just trying to fix the night time headaches (feels so bruised still back there. Just bought a new memory foam pillow today, so I'll give that a go. I wake up with my head hurting-feels like the pillow is too hard, even though I use a goose down pillow!). I think my hearing may be getting worse. Maybe it's just that I'm out and about more in noisy situations and notice the loss more. I've had a few difficult times lately where I need people to keep repeating themselves. In large groups I tend to just shut down a bit because I feel like I'm a pain to ask everyone to repeat for me!
The scar is healing so well too! I don't have a current picture, but this one was taken 10 days ago-so I'm sure it looks even better. I'm so impressed! Sorry for the size, I forgot to resize before putting them on there. But hey-it gives you a good close up. LOL When my hair is down you'd never know what I've been though. (BTW, anyone know how long it will continue to feel severely bruised on my head? Are we talking months or weeks?)
I'm contemplating going for a short jog this week to test out the new head. Thursday marks one month, so I'm thinking that is a good day to give it a go! :-)
(http://i622.photobucket.com/albums/tt309/asburyfamily/P6141351.jpg)
(http://i622.photobucket.com/albums/tt309/asburyfamily/P6141354.jpg)
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Looking good. I never really had any pain around incision site...just tightness...My tinnitus as all but dissappeared...very little ringing and not that often...scar looks really great....and with your long hair...poof its gone
JO ;D
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Adrienne .....
If this picture was taken 10 days ago, it looks really good for less than 3 weeks out!
As most of us have said, everyone is different as to incisional discomfort. When you consider how many nerves were cut .... to say nothing of skin, blood vessels, dura, etc. ..... it is amazing to me that the pain was not greater. At 16 months out, I still have tenderness (and lumpiness :-\ ) when I touch that area. The numb, weird feeling lasts for years (at least my first retrosigmoid surgery did). After the first time, it was a long time before I could lie down on my back without getting a raging headache ..... did not take me long to figure that out! This time that did not happen ..... do not know why.
Unfortunately the tinnitus may never go away ..... mine hasn't ..... in fact it seems to be worse now than it was six months ago! :( But, as you say, I can tune it out a great deal of the time so I certainly am not complaining if that is the worst I have! Hearing seems to come and go with the degree of tinnitus, for some odd reason.
Glad you are doing so well and thanks for the great pictures!
Clarice
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Adrienne,
You look GREAT :) :) :)
Glad the headaches are getting a little better.
The head discomfort lasted some time for me. I can't remember now :) Amazing how it all becomes a blur a couple years down the road. Just keep doing what you are doing. Find different things to make it feel as comfortable as possible.
I used Vit E oil, from the capsule and rubbed it into the healed incision (maybe wait a couple of more weeks for that.).
It seemed to help the tightness.
Keep up the great recovery!
Maureen
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Hi Adrienne,
So glad you updated. It's nice to see how posties are coming along.
My incision didnt' bother me too much post op - I guess my head was numb. I'm almost 5 mths post op, and it bothers me a bit now, but it's not really painful.
Good luck on the running. I'm plugging along really slowly. I think the 'slow' part helped me not feel like my brains were going to be jumping around in my head. At first, my tummy fat incision bothered me more when I first started running, but that's all better now. The running helps me when I'm feeling wonky headed (both pre op and post op).
Glad you're recovery is going well! Amazing that it's 4 weeks already.... i remember when we were all hoping that your date wouldn't get bumped back!
Keri
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Adrienne ~
Thanks for posting your incision photos. Obviously, you're healing quickly, which is great. I did too. Even with my relatively short haircut, my incision scar was basically invisible within about a month.
As you know by now, every AN patient has a slightly different experience with their surgical outcome. I found the area around my incision was only sensitive for a few weeks but the whole side of my skull (my left side) felt sort of numb for about 9 months. I didn't sleep on the 'AN side' for close to a year. By my first surgery anniversary that was all over and I could sleep on the 'AN side' - and still do, frequently. So, total healing in that area could be measured in months, as it was in my case, but that is anecdotal. However, I hope it can serve, with other replies, as an indicator for you. I doubt jogging will be much of a problem but we'll await your 'report' on that adventure. :) Good luck!
Jim
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Congrats!You look great adrienna!
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Another Canadian Beauty ::)
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Realized this afternoon that today is my 6 month anniversary from surgery. I'm feeling really great. Really the only things 'left' to deal with are numbness of the skull (I'm told this can last at least a year?), about 40-50% hearing loss (pretty sure all that I'm going to get to keep, I've got already! Not expecting any more improvements), and constant ringing. The numbness on the left side of my face and tongue (trigeminal issue) is about 97% gone. I'm positive it will go away completely in time.
When I started running again after surgery, I signed up for my soccer team. Blew out my ankle in the first game (really, really bad sprain) and was laid up doing nothing for the last few months (SO frustrating!). I started doing the P90X fitness DVDs last Wednesday. They're brutally hard, but I can tell they're going to do a great job of getting me back in shape. Gotta look good in my bathing suit, because hubby and I (and our two kids 9 and 6) are heading to Australia for a month mid Jan to mid Feb. It's our 'reward' for a hellish last year. Can't wait! I plan to try surfing while there, so I need to get better at the push ups!
Thanks everyone for the support over the last 6 months. I still check back periodically and add input/welcomes when I can. I remember how reassuring that was when I was new!
Take care!
Adrienne
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Adrienne .....
So glad to get the really positive update on your 6th month anniversary. ..... and a trip to Australia! What fun! You deserve it.
Thoughts. Clarice
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Adrienne ~
Happy 6-month anniversary! Your conclusions about your recovery seem to be about right, based on my experience. You're fortunate to have retained 50% hearing and I trust that it'll remain. The skull numbness should dissipate within a few more months (mine took close to a year to resolve). Any residual facial numbness will likely disappear or become unnoticeable to you which, again, was my experience. In short, you should be fine.
Congratulations on your upcoming vacation in Australia! I'm sure you'll look great and have a fantastic time 'down under'. Any envy you notice around here is purely coincidental. ;)
Jim
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Adrienne,
Great to hear you are doing so well 6 months out, minus the ankle sprain. You probably got around more during post brain surgery time, as compared to ankle sprain time!
If it's not one thing, it's another.
You are a trooper for going full force ahead. Keep the attitude, and have a wonderful time in Australia.
You all definitely deserve it.
Maureen
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Maureen- You are SO right. The brain surgery was emotionally harder to recover from, but the ankle sprain was physically harder in a lot of ways, and definitely harder to get around for a long time! That sounds so ridiculous, but it's true! Darn ankle sprains.........!
Thanks for the nice words everyone.
Adrienne
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Congrats to you too!
Your trip to Australia sounds great!
I am glad your ankle is doing so much better.
Keri
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Adrienne I am so happy to hear that you are doing great 6 months post-op! Have fun in Australia. I went there March 2006 and it is one of my favorite places in the world. After what you have been through, Australia is the best reward. You will come back so relaxed and it may help with any lingering negative effects from your surgery. Your story has helped me think more positive about my upcoming retrosig surgery. Any way, just wanted to say congrats on your 6 month anniversary!
Cathy
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Adrienne, I am so happy for your 6 month post-op! Your story really helped me threw my surgery time back in October. I hope that you will have the best time in Austrailia and I hope you will take lots of photos. Because I for 1 would love to see them! Debi