ANA Discussion Forum
AN Community => AN Community => Topic started by: IJTampa on March 04, 2009, 08:50:36 pm
-
Hello gang.
Just set my wife, Isabel, up with her own account (this one). She will provide updates on my surgery/recovery as she is able.
Ernie and Isabel
-
Looking forward to updates. God bless, Ernie. Hi Isabel :)
-
Time to rock n roll Ernie. See you on the postie side. And looking forward to hearing about the success from you Isabel.
-
Postie-hood... such a lovely term! :)
Prayers and wishes for Ernie today... and hoping Isabel is holding up ok....
wellness wishes...
Phyl
-
Hope your sleep was peaceful Ernie.
Anne Marie
-
Thoughts and prayers are with you and your family tonight and in the days to come.
Rest well.
Sue
-
Hi everyone....thanks for all your support for Ernie. Hi is now in ICU till tom. morning...surgery went well, had to remove hearing nerve. Tomorrow the sugeon want me to make sure he gets up and walking....will let everyone know how he does.
Till tomorrow
Isabel
-
Wonderful news for you & Ernie.
Tell Ernie continued healing, & keep a peaceful heart:
Take a deep breath in & out, you made it !
Always good thoughts, Nancy
-
So glad to hear the update. I hope you both get a good night's rest now. Look forward to hearing more later. Best wishes.
Anissa
-
Glad to hear Ernie is doing okay. Is he wearing the scarf in his hospital bed? We are so looking forward to pictures...
Steve
-
Yea, you guys made it through the surgery! one step at a time. Let us know how he does.
We're rooting for you, ERNIE!
Maureen
-
Thanks for the update, Isabel.
Tell Ernie we've all thinking about him.
Take care of yourself and get some rest.
Jan
-
Ernie,
Best wishes for a speedy recovery. You are in my thoughts and prayers.
LisaP :)
-
Best wishes for quick and easy recoverery.
Neal
-
Good new! I have a feeling Ernie will be up and about in no time!
The first day post-op....well, no way around it, it sucks, but it gets better every day! Really.
Take good care of both of you!!!
Lori
-
Yea Ernie. Escape from ICU -- it's not a fun place to be. Feel better. And thanks for the update, Isabel. Please keep them coming.
David
-
Glad to hear about EJ's surgery. Thanks for the update! Just remember, the first 3 days don't count. They're just icky most of the time.. Progress will happen slowly and steady after that. Get some rest yourself!
Regards,
Brian
-
Thanks for the update! We're thinking of you, Ernie :)
Kim
-
Hi Isabel,
Thanks for the update on Ernie! I'm glad to hear he is doing well and will be up and around soon -- the first few days are the toughest. Hope you are taking time out to get the rest you need too. Keep us posted on how he is doing.
Please give him my est wishes for a speedy and uneventful recovery,
Wendy
-
Hi Isabel and Ernie,
Best wishes to you both.
Keri
-
Hi, Isabel & Ernie ~
Thanks for the update. Things seem to coming along as planned. Now, the goal is to get Ernie out of the ICU so he can get some rest! :)
Jim
-
Hi Guys,
I'm in ICU still, they didn't have a room for me. Just spoke to Dr. Danners who works with Dr. Bartels. I'm heading home tonight. Not bad, in one day, out the next!
I'll post pictures when I get home, probably not until Saturday though. Thanks for all your well wishes! The prayers, the scarf, and the blessing made all the difference in the world!
Ernie
-
Wow, are you seriously on email already? Go get some rest Ernie and post your updates--I'm so happy you're up and around quickly. That's a good sign for a swift recovery.
Marci
-
Way to go Ernie. You must be doing great. Don't try to do too much too soon. Look forward to seeing updates later on.
Patrick
-
My biggest issue right now is with balance, since my balance nerve was largely unaffected by the 1.3cm tumor. Walking is pretty interesting...better stay out of my way! :)
Ernie
-
Ernie,
Good for you!! the walking issues get better very quickly everyday you will see huge improvements. You will get the odd day when you feel a bit off, but there again that happens to everyone with or without a tumour. Just keep looking at the funny side of it all, and there will be a few, thanks to the drugs cocktail still running through you. I kept seeing a chicken in my bedroom.
keep us posted
Rick
-
Ernie -
I'd say you set a record!!!! Wow! We all knew you were amazing, but wow!!
Take it easy when you get home - I'm sure you'll get more rest there than in the hospital anyway, and I'm sure the food is better!
A friend of mine suggested I walk around with half empty bottle of vodka in my hand for a while so people wouldn't wonder why I was walking like a drunken sailor! Might work for you too!
Way to go!
Lori
-
Congratulations - missed the earlier posts saying it was done - and now look at you, home already.
Congratulations
Ann
-
No way, Ernie! You're home?!?! Wow, you must be doing well and that's great to know. Be sure to take it easy even though you're home...actually, you may get more rest there than in the hospital ;)
Good to see you over here in postie land,
Cindy
-
Wow! Anointing the Magic Scarf has given it super powers! Welcome home, postie Ernie. Take it easy for a while.
Steve
-
ARE YOU KIDDING ME ? ? HOME ALREADY ? ? Wonderful news.
As has been said, REST, REST, & more REST, you've just been through brain surgery.
Take all the naps you need, whenever you need them. & stay hydrated (my 2 cents).
Continued healing my friend, always good thoughts, Nancy
-
Ernie,
When I saw your post from ICU, I had to go back to check your surgery date! Surgery on Thursday and back on the forum on Friday? Truly amazing!
As others have said, just be sure to rest and take some nice, long naps between your posts. :)
So glad to hear you're doing well!
Nancy L
-
Congratulations, Ernie!
I'm so jealous. I suppose being married to a nurse helped a little?
Enjoy your new freedom.
Nancy
-
Wow that's amazing! I'm super impressed! I don't feel quite so scared now!
-
WOWSERS Home already! Amazing....Keep up the good work there Ernie
JO ;D
-
Ernie: ~
I posted this on the 'AN Issues' forum and I'll re-post it here.
You're kidding....right? Even endoscopic surgery patients don't get discharged quite that fast. Perhaps that magic scarf is more potent than we realized. Congratulations! Way to go, Ernie!)
I'll simply add that we stand in awe of your recuperative powers. Well, those and the coveted Magic Scarf you must have employed to so far exceed all records for the time between surgery and discharge. I assume you'll be back to work on Monday? ;)
Jim
-
Wow! Home already? The scarf must have worked. Rest, rest, rest.
Regards,
Brian
-
While rest is very important, so is activity. I almost fell into a rut after waking up with some swelling today. A 30 minute afternoon walk after some macaroni and cheese did me wonders! It's beautiful, if not a bit warm outside. We will walk again this evening when it cools down, then I'll get some rest.
I didn't like ICU. The nurse was good, just didn't like it there. Bells and whistles and such all the time. At 9 AM they said they were going to transfer me to a room if I could walk. I got up and did a couple of laps right there and then. At 3 PM they said they weren't having any luck getting me a room. Boy, I did not want to spend another night there. At around 7 PM or so Dr. Danners came in to check on me. I told him I was upset about not getting a regular room and that I'd be better off at home. He said he agreed and signed the discharge papers! :). I was able to meet all the criteria for going home, since time isn't one of them.
For those like me who don't like hospitals, get up and walk. You will be dizzy, you will have some pain, and in my case, with the hearing nerve cut, lots of wooshing noises. You will feel SO much better after walking. Even today, day 3, so much better after a walk. But as others have said, you must listen to your body as well.
Thanks again for all your super prayers, and I will try and get the pictures up soon!
Ernie
-
Ernie, I couldn't agree more about what you said on the activity(if you're able). Walking did me a lot of good too the first few hours and days. I was also released fairly soon after surgery(36 hours), and it was because I forced myself to get up walking(plus the doc said I'd do better at home and the risk of infection would be much less at home). Glad you're doing great...keep walking, but don't push it too hard this early.
Patrick
-
Congratulations on a successful surgery, Ernie! Such nice news for all the newbies who are waiting surgery. Still listen to your body and rest/walk/fluids, etc...
Maureen
-
No sneezing!!! How can you stop from sneezing?!
-
Hi Ernie & Isabel!
Congratulations on being post surgery and home already! This is great!
[My daughter learned how to be released early too - she had a rod removed from her thigh (after it was broken), ate a 6 inch plain sub from Subway, walked around the hospital room and went to the bathroom herself before the nurse ever ordered the post-op jello meal! She wanted to be 'outta there' too!]
Now get some rest and relax at home.
That magic scarf is incredible!
All my best to you and your family!
Sincerely,
Sue
-
I'm wondering as well...How can one prevent sneezing for 8 weeks??? As anyone sneezed before the 8 weeks and what were the results???
JO
-
Ernie,
Yup, I agree as well--activity (walking or whatever) if you can do it, with copious naps will help with recovery. It worked for me and sure seems to be working for you. Don't overdo it though, and listen to your body.
Best
M
-
Don't panic allergy sufferers - you CAN sneeze, just keep your mouth open when you do it. That will keep from raising your Intercranial Pressure too much.. or is that Intra...can't remember. Anyway, open mouth sneezes only. Gesundheit.
Cheri, I was thinking the same thing - Ernie should have made a Superman cape out of the scarf!! Maybe we should have Steve knit a big "S"to put on it!
Lori
-
If you bite down slightly on your tongue, you will not sneeze. I have no idea why it works.
-
Cool! I just tried it, and it did create a funny sensation in my nose.
Thanks.
Nancy
-
Finally, the pictures I promised. No fancy poses yet, sorry.
ICU day after surgery.
(http://i395.photobucket.com/albums/pp31/flessanguam/AcousticNeuromaSurgery001.jpg)
First Post on ANA day after surgery.
(http://i395.photobucket.com/albums/pp31/flessanguam/AcousticNeuromaSurgery002.jpg)
Glad to have the bandage off on Sunday!
(http://i395.photobucket.com/albums/pp31/flessanguam/AcousticNeuromaSurgery003.jpg)
My battle scar :)
(http://i395.photobucket.com/albums/pp31/flessanguam/AcousticNeuromaSurgery004.jpg)
Still doing ok. Lots of strangeness, like hard to swallow food. Taste is all wrong. Extreme noises in the deaf ear. I assume these will settle out to something more managable eventually.
Ernie
-
Hey Ernie,
I'm glad to see they got that 90 degree rotation problem sorted out. That would have been awkward! ;D
You look amazing for someone three days out from surgery. I'm sure most of the strangeness will sort itself in a week or so. If you are like most people, you will get to keep something as a souvenir. Take care.
Steve
-
Ernie,
You look great, thanks for posting the pictures. We love pictures. And yes, the immediate post op things will pass as things settle down in your head. I had a ton of those (similar to yours) and they all resolved withing the first couple of weeks. Now you're some kind of superman so maybe it will take less time. (I thought I had the record on short hospital stays until your surgery :D)
Best,
Marci) ,
-
Ernie ~
Me again. Thanking you for posting the photos. You look great! I share your aversion to hospitals in general (as a patient) and the ICU, in particular. I had to push a bit to get released on my 5th day post-op and thought I did well. Now, I feel like a slacker! :D May your recovery be as swift as your hospital stay. You're an inspiration to many.
Jim
-
Aaaarrrr,me Mateys!
Let's raise a toastie!
Our Tampa Ernie
Is now a Postie!
Now if I were you Ernie, I would don me Gasparilla garb whilst I was performin' me outdoor physical therapy so as to hide the fact that there was anything at all going on in that there noggin up there. Kinda like a Disney World ride up there right now ain't it? WHEEEEEEE!!!!!!! Don't worry--things will quit spinnin' eventually and the snakes and chickens will go back to where they came from!
Just get out and enjoy that bee-ooo-teee-full Florida air and sunshine and be glad you ain't trudgin' through 2 feet of snow.
Congrats on "it" bein' over!
Huuuuuuugs!!!!
Capt Deb P-)
-
Ernie,
You look excellent! Keep up the good work :)
Jen
-
Very nice pictures Ernie. Glad to see you're home already ;D
Congratulations, postie!!!
As for the sneezing guys, Lori is correct - you have to do it with your mouth open.
You also are not allowed to blow your nose for a certain period post op - I'm thinking it's about 6 weeks.
The solution to that is rather gross - suck it down and spit it out :P
Jan
-
Ernie, I can't believe you're home already, nice job! You are the first surgery
victim poster since I joined this board so all my hopes were pinned on you. You came through with flying colors, wow! I am so encouraged! Thanks for the pictures too. Ok, be well, and may the the merry-go-round stop and the loud noises subside soon.
Anissa
-
Well, we can see why they let you go so quickly! What great post op pics - you will definitely be an inspiration to the pre-posties...of course, you pre-posties know that all recoveries are different, right?
Yes, the noises were so strange after surgery - and even what I heard in my good ear was quite distorted for awhile. But it does calm down.
Hope things continue to go SO well for you, Ernie! Looks like they sure will to me :)
Cindy
-
LOVE the pics. Great for those who are awaiting surgery. You would hardly know you had BRAIN surgery by looking at you straight on. Congrats again, and pace pace pace yourself. How's your dizziness?
Maureen
-
Great pics! With your "bonnet" off, from the front you can't even tell you had surgery at all! That's GREAT! Continued healing, Ernie!
Regards,
Brian
-
Unbelievable! Ernie, you look terrific! Welcome to postiehood! Now, take it easy, get some rest and.... um... BoSox beat Tampa yesterday! ;) I know payback is forthcoming!
Wellness wishes to you!
Phyl
-
Ok, am I the only one who noticed Ernie's pretty pink laptop?? :D
My niece swears that if you say the word "grapefruit" when you feel the need to sneeze, you won't sneeze. I think she's a little on the crazy side, but it might work.
Ernie, you look great. I've looked worse than that after a trip to the grocery store.
Lori
-
Ok, am I the only one who noticed Ernie's pretty pink laptop?? :D
oh, I noticed, but went for the BoSox BEATING Tampa at baseball yesterday route instead... LOL!
-
Ok, am I the only one who noticed Ernie's pretty pink laptop?? :D
I noticed it too, ha! Looks good with your headwrap. ;)
-
Me, too, but I didn't want to say anything. I imagine/hope it's Isabel's.
Nancy
-
I can't have a pink notebook? :) Ok, it's Isabels. It's very light (a netbook) and the battery lasts like 8 hours. It's the best thing in the world when all you need to do is wirleless networking (internet) stuff.
Had a pretty good day today so far. Didn't sleep too much, well, yes I did, but not as much as the last few days. I got out and walked and felt good. I even went an extra hour beyond the time for my pain med, but that's as far as I can go right now. Most of my pain is internal, where the tumor was. I don't have any pain at the incision site, at least not noticable. Sometimes my head feels real full and swollen, and that takes me down more than any of the other symptoms. Luckily it seems to pass in a few hours.
Ernie
-
Ernie:
Sorry I'm so late getting in on your updates. You look wonderful, your smile is symmetrical. Sorry that you are SSD. It's wonderful that you were able to go home so soon.
It's great having you as a postie.
Syl
-
You should have been wearing a Tshirt saying "Real Men Have Pink Laptops". Heh..
Congrats on doing so well. Your complaint of post-op internal pain is normal. As things start to settle down, you'll notice it less and less.
Regards,
Brian
-
Hi Ernie: your scar looks better than mine did !(retrosigmoid also), you also LOOK alot better than I did (no facial paraylisis, YEAH ! ! ! ! !).
You will be exhausted for weeks, it'll get better over the months (it's a weird thing that happens from exposing the brain to air - so says my neurosurgeon, who I have complete faith in). Take naps whenever your body tells you to.
Little by little you'll walk more, do chores around the house, etc.
I was able to drive after 3 weeks post op (out of necessity), I found it easier to drive than walk !
Headaches were horrendous for me for the first 3 weeks, then slowly dissipated over the next 2 months.
You may also find your appetite has diminished - this is normal, it will (unfortunately for us chubbies - not you!) eventually pick up.
Continued healing my friend, always good thoughts, Nancy
-
Two days I miss this thread and the world has passed by. Amazing, Ernie. Amazing. I believe you may have set the record. Does anyone know of a faster escape from the hospital? I remember a few three days. But two?
-
Two days I miss this thread and the world has passed by. Amazing, Ernie. Amazing. I believe you may have set the record. Does anyone know of a faster escape from the hospital? I remember a few three days. But two?
Actually, back a couple of pages, I think Patrick has me beat at 36 hours. I probably didn't actually leave until 9 PM, and we were there the morning before at 5:15 AM. I'll settle for second place though!
With respect to less invasive surgical practices, I'm sure it helps, but assuming there are no complications, there really isn't anything more they can do for you in a hospital after the first day than you can do at your home. Just make sure you have someone there with you. My own Doctors told me to get the heck out of there as fast as I can or end up catching something else, including nasty infections. It's a win/win/win for hospital/insurance/patient since hospital frees up a spot, insurance pays a day or 2 less, and patient feels better at home anyway.
Ernie
-
Funny you say that about hospital stay, i have a friend/neurologist who always says "If you make it out of the hospital alive, you done good."
Continued healing Ernie, always good thoughts, Nancy
-
WOW!! I can't believe all that I missed while tending to my MIL in Houston for not even a week! Way to go Ernie! Hope you continue to have good days!!
K ;D
-
I noticed the pink laptop too and was going to make a comment about how well it went with the leopard scarf, but decided to behave for a change ::)
Jan
PS to Lori - your halo is slipping again ;) :D
-
Ernie...My 36 hours was after the surgery was over, so my total hospital time was 48 hours. I'll gladly accept my unofficial 2nd place breakout from the hospital to your record time. My doc told me that the hospital was for sick people and I wasn't one of them, and asked if I wanted to go home. I said absolutely.
Hope all continues well on your recovery.
Patrick
-
Ernie,
Sorry I'm a little late -- but you really do look great! (I'm a poet and I don't know it -- my feet show it -- they're Longfellows -- size 10 :D) Thanks for the great pics!
Wishing you continued good healing!
Wendy
-
Ernie,
Congrats,,,,can't believe that you are home already, pictures look great, thanks for keeping us updated. Glad to hear all is well!!
Best wishes,
LisaP ;D
-
Congrats, Ernie!
Sorry, I'm so late with wishing you all good after surgery, but now I will ...
Congrats to a great surgery and a speedy recover!
I'm still waiting for a date for surgery. I'm getting more and more frustrated as the days pass by.
Hugs from Helene in Sweden :)
-
Hey, wait a minute, I'm in the 48 hour club as well. Surgery on a Tuesday, home Thursday before dinner. (Thank God because the hospital food was really awful)
Ernie, how are you today?
Marci
-
A week without a tumor.
*WARNING* Very long post. Read at your own convenience. You may want to skim through :). Some like details, others just the talking points. Sorry!**
Day 1 - Arrived 5:15 at TGH. Everything went very quickly. It was one room to another until the pre-op area. Pre-op IV nightmare (both my arms are bruised and sore, long story, another time). Asthesiologist arrived on time and checked everything over. He was bright and cheery. That's just wrong so early.
Wheeled down a hall to "get into position". Nothing happening yet, but this will calm your nerves a little. My next vision was very blurred, and I felt like I got run over by a truck.
Post-op Recovery. I'm feeling a bit sick. Wife has just walked in, said everthing went well. I put my hand to my head, scratched on the bandage, "I can't hear". She said "No. They cut the nerve. The tumor was very sticky on the hearing nerve. Where's the call bell? I have to throw up? They don't have them here. <details deleted in case you are eating>. Nurse comes running from across the room. Why didn't you call me? I was RIGHT THERE! (Remember, I had a tube recently yanked out of my throat, there is no call button, and I'm pretty sure getting up and tapping her on the shoulder was out of the question. My wife told me I was mean to her. I'm not normally like that. But come to me yelling at me? Geesh. Ok, I told her she was incompetent, and maybe some other things too. If she reads this, I am sorry for that, but understand we can't talk loud, we can't jump and whistle, and we don't have a call button. There was nothing nearby to throw.
ICU. How do people live through it? They gave me ice chips and morphine. Both are very nice. I had severe pain with the morphine in the IV, so they used the IV in the other hand after that. Less pain, but pain nonetheless. They said they would have to check on me every couple of hours and ask my name, surgery date, todays date, etc. They tried to trick me by not changing the date on the board :). Night one in ICU was mostly a blur. I'ts day 2 before I know it.
Day 2. It's morning. Day nurse on duty now. Tries using right arm IV again for morphine. My eyes pop out of my head. He says it looks ok, shouldn't burn that much. Right. Nurse says he's working on getting me a room (it's 9 AM). One is lined up, but it's a shared room, and female has to be fully discharged first. Had to prove I could walk the halls first so off we went. He said I did amazingly well for that type of patient. Wife was there for a while, then had to run errands. I'm fine, go ahead. Starting to have pain again a few hours later. Where's that call button? Crap. I can't find it. Oh well. This isn't a vacation you know. Suck it up.
It's about 4 PM now, wife is back. Call button was left on some table or something way out of sight and reach. An honest mistake I'm sure since really, the nurse was a good nurse and knew his stuff. Not looking good for a room. ICU another night? All those horrific beeping noises. Please, no.
It's about 6 PM, maybe 530. Doctor Danners is there. I told him they couldn't get me a room and I didn't want to stay here. I said I wanted to go home. He said I would do perfectly fine at home. I had been eating regular food all day. They even brought me a subway tuna salad sub for lunch because I don't eat meat on Fridays during lent. Dinner was a good looking fish and broccoli dish, but you know the taste deal. Doctor said, I'm writing your discharge papers now. There was an hour delay due to last dose of IV antibiotics required. I'm feeling good now! We got up and walked. I posted my first message on the forum, took some pictures, etc.
9 PM - I'm on my way home! Surgery Thursday, home on Friday. One night stay! Woohoo! (I hate hospitals).
Day 3 - Nights are horrible. Sleeping elevated doesn't work for me. I think I'm using 5 pillows to make a ramp. Backaches, neckaches, yuck. That's my night routine through day 7. Yuck. I don't look forward to bed. But day 3, Saturday, was a day of rest. I felt slow, sluggish. Tinnitus to the max, lots of new stuff too. Wooshing, ringing. We have this eagle wall clock that has a unique tone at the top of each hour. We haven't been using it for at least 6 years. My ear was giving me the EXACT tone, length, tail off, everything. Cool. Lots of naps today. Finally, got myself up and said, I need to walk. We went on a 30 minute walk outside and I felt much much better!
Day 4 - Sunday - Bandage off! It looks good. Picture time! I'm concerned about some moisture in the nose, sleeping arrangements, and some oilyness in my AN ear. Put a call into Dr. Bartels nurse (24 hour number to call no matter what). Dr. Danners calls us back in good time, and says unless I lean forward and have a watery liquid actually drip from my nose, then don't worry about it. He also says, I must sleep with my head above my heart, no exceptions. bah.
Day 5 - Monday - A good day altogether, but I'm noticing that the pain meds are not working like they were, and I feel like my head is full and tight. 2 walks today, but I didn't get that great feeling after either one.
Day 6 - Tuesday - Trainwreck! All I want to do is sit and sulk, but we push on for our morning walk. I'm miserable by mid day. When can I take my pain medicine again? Are you serious? 3 more hours!?! I'm going to die today. We put a call into the nurse at 3PM and leave a message. 4 PM comes and I can take my meds. Nurse calls to ask details, then Dr. Danners calls about 6 PM. I described my pains which are now largely uniform on the right side, just all over pain. There is a new headache that encompases the entire head and thobs with each pulse. He mentions I may have a bit of checmical meningitus. He asked if I remembered him saying that the steriods from the IV would wear off in about 5 days. I said yes. He said swelling is likely the culprit, and told me to go ahead and take my first does of Decadron, then continue it as instructed. He also asked me my normal med routine. 1 percocet every 6 hours. He said I can take 2. I mentioned that pain relief wasn't the real issue but rather duration, so he said take 1 every 3 hours then, same thing as far as amount in the body.
Guys - within 3 hours of my first decadron dose it was like I had been saved! I took my normal pain med at 10 PM just in case, but didn't have any pain. Just took it because I was going to bed. Wow - Thank goodness.
Day 7 - Today! - Great day today. No pain. No pain meds. Continuing my decadron as instructed. We walked outside twice today and went to the mall in the afternoon. Here it is, 9:45 PM and I'm still doing great, nearly 24 hours with no pain meds. I'm not fatigued, I'm just feeling good. Not 100 percent. Dizzy still especially when turning my head. I'm not looking forward to the end of my decadron, but hopefully the post-operative swelling will be done with.
That's it. My one week update! I know, a book, but hey,
Ernie, how are you today?
Marci
You asked :)
Ernie
-
Ernie, you're a total rock star. Keep it up--we've been there, felt that, etc. You are well on your way, minus the small bumps in the road. I'm so glad you were able to get to a pain free place. I remember being terrified of going to sleep because of the pain I'd wake up with. But it was short-lived, like you, about 3 days. Remember, the first three days do not count. Even if you spend them at home!
Best,
Marci
-
I can't believe it has been a week already. It seems like just yesterday you were getting out of surgery on the second day. My how time flies.
I bet the swelling is not a problem when you finish up the steroids. Be sure to do the gradual decrease to avoid any weird effect from stopping them. Keep up those gentle walks and have a great second week.
So who is getting the scarf next?
Steve
-
Ernie,
I am so glad you are doing so well. I enjoyed your long post and the details. I am reading everything I can so I know what to expect. Take care in your continued recovery.
Tara
-
Thanks all. Yes, the next question is to the scarf. It has done it's job in a big way for me, more than I could have hoped for. The scarf needs to travel to the next person in need, and may it bring comfort and a successful journey to them as it has me.
I will look at the AN schedule, and feel free to make suggestions.
Ernie
-
The mall on day 6???? Who's idea was THAT :D
WOW is all I can say.
You are doing excellent. So glad for you. Keep it up, keep pacing yourself. Good days, not so good days, there will still be some of each, but sounds like you are over the worst of it.
Maureen
-
The mall on day 6???? Who's idea was THAT :D
WOW is all I can say.
You are doing excellent. So glad for you. Keep it up, keep pacing yourself. Good days, not so good days, there will still be some of each, but sounds like you are over the worst of it.
Maureen
Do you think the scarf and perhaps the pink lap top have changed me in some way? :o Qucik, someone get me a beer and turn on ESPN!
Ernie
-
Ok Ernie, you asked for it... here comes some fruity "frou - frou" beer (as my husband calls it) and some synchronized swimming on ESPN.
Now you'll look just fine with your leopard print scarf and pink laptop!
Want to go out shopping for shoes later? :D
Seriously though - the mall on day 6 is impressive. I thought hitting the mall at 3 weeks was pretty good in my case. And I think it was the only time I didn't buy anything - clearly a sign I was suffering from some sort of brain trauma. Glad I got over that! ;D
Lori
-
Ernie: Are you made of steel ? ! ! I can't believe you getting out of the hospital the day after AN surgery ! !
Is there an award for this ? ! !
You so quickly passed through issues that took most of us weeks, months, years to clear up !
Continued healing my friend.
Always good thoughts, Nancy
-
Nancy,
I hope my good fortune isn't 1) short lived, and more importantly 2) Not taken in the wrong context. I am very excited about receiving such a great outcome (so far), but I hope nobody reading is taking my joy the wrong way. I still pray for all of you that continue to have issues, and it really would be more fair to spread some of that around and kind of even it out. :(
Day 8 - March 12th... The night didn't go well. Remember I had decided to kick the pain pills. When I sleep, pain returns in a big way. I find myself rolling to my non-AN side at night, and it seems things shift a bit (as opposed to looking straight up at the ceiling). I think I will be taking a pain pill before bed tonight :). We still went for our morning walk. The day was much dizzier and wonky headed than day 7. We did hit walmart briefly in the afternoon, but otherwise stayed home. We just recently finished our evening walk and I am feeling better, finally.
Ernie
-
Ernie -
Congratulations on your amazingly great recovery so far! :) :) :) Just remember not to push too hard or your body will remind you who is boss -- I'm acutally surprised it hasn't already. When you feel as good as you apparently do, it's very easy to overdo.
Wishing you conitnued wonderful healing,
Wendy
-
Hi Ernie: No one is taking your joy the wrong way, in fact, it gives us joy to know how well you did/are doing. I see you will have up & down days (day 8 not as good as day 7), but it truly is amazing how you were discharged the following day - divine intervention ? Whatever it is, I think it's GREAT ! !
Continued healing my friend, always good thoughts, Nancy
-
Yes Ernie, you are an inspiration to all of us waiting to become posties....I'll be there in about three weeks and will keep you in mind. We all know and understand that we are all different in symptons and recovery, but hearing your story and visiting with Cindy has enlighten my hopes.
JO ;D
-
Hi JO!
I'm glad my posts have been helpful to you! That is what I really want. I've been told that many (not all) that have few post-op complications, go on with their lives and leave the AN forums. I'm sure that will happen to me one day as well, but I at least want people to see that there are "good" outcomes with fairly quick recoveries too. I undersand it is much more likely for someone with continued problems to stay and use this venue for support...it only makes sense.
And in that, I will continue to post my daily (hopefully) updateds here :). It will eventually become a milestones only update, but I figure I should at least take it through my first post-op appointment next week!
More pictures should be coming soon.
Ernie
-
Hi Ernie!
Sorry to post so late, but I have been following along and just wanted to say congratulations on such a successful outcome and recovery thus far!
I think you really demonstrate the value of staying positive to all of us. From the beginning your spirit has been unsinkable and I think that has probably made a world of difference in how far you've come so quickly!
I always look forward to reading your posts so keep 'em coming :)
Best,
Laura
-
Ernie ~
I support your contention that those with good outcomes like yours - whether their AN treatment was surgical, radiation or both - do other AN patients a service by posting their positive results. It certainly isn't bragging or gloating, but simply sharing good news - and that is never something anyone need apologize for. Newly diagnosed AN patients need to see that every case doesn't end with complications and long-running problems. We stand in full support of any AN patient with issues and/or questions we can address but I believe we also stand in support of those who experience good outcomes and recoveries. I'm glad you're one of those. May your recovery continue apace and may you post as long as you feel you have something to add, even if that is simply to serve as an example to others that an AN diagnosis isn't the end of the world. Not a walk in the park - definitely a challenge both physically and emotionally - but not necessarily always with a negative outcome.
Jim
-
Thanks Jim. I couldn't have done half of this without all of you, and my great surgical team, of course. I just saw the note on the calendar for March 6th about my return home, I didn't do that :)
Day 9 - Friday March the 13th! - Better than the 12th. Woke with a bit of pain after the overnight dose wore off, but didn't need more meds for the day. Will take one at bed again tonight, seemed to help my sleep some. We had a bit of a long ride today (no, I didn't drive), and my head was all over the place. Maybe because someone else is in control of direction? I dunno, but wow :). On the way back, I closed my eyes and caught a couple of z's and had two strange "snaps" in the surgical area. Just nerves doing their thing, I'm sure. Brief potent jolt of pain, but so brief, not more than a nuicance. Overall, I might rate this my best so far. Still taking the steroids, about 2 weeks left with the tapering dosage schedule I think.
Ernie
-
JO,
When you said three weeks, I jumped. I had just told someone my surgery is in four weeks, and it's the day after yours. I need all that time to get ready, so please, at least say three and a half weeks! ::) (just kidding)
Ernie,
Your reports are EXTREMELY helpful to me. I copy and paste them into emails to my future caregiver so that he will know what to expect. Thank you so very much. And keep up the good work on progressing toward your best recovery, whatever that may ultimately be.
Nancy
-
Ernie,
Sounds like you are right on track with those meds. I'm glad your pain is better. Your attitude is undeniably stellar.
M
-
Cheri, I was thinking the same thing - Ernie should have made a Superman cape out of the scarf!! Maybe we should have Steve knit a big "S"to put on it!
Lori
Ok, This is for Cheri and Lori, and against my better judgement :)
(http://i395.photobucket.com/albums/pp31/flessanguam/AcousticNeuromaSurgery007.jpg)
(http://i395.photobucket.com/albums/pp31/flessanguam/AcousticNeuromaSurgery008.jpg)
I know I'm going to be sorry :)
Ernie
-
that is one LONG scarf!! ;D
K
-
Ernie -
IMO you are going to be sorry. Now that you've given in to Cheri and Lori, God only knows what other things they'll be asking you to do :o
Glad to see you're doing so well.
Jan
-
IT'S A BIRD.... IT'S A PLANE......NAH.....IT'S JUST ERNIE ON THE TREADMILL!!!! :D
And I think you've found a good incentive to keep moving on that treadmill - putting the dartboard right next to it - does your wife play darts while you're walking? :o
You are lookin' great and I'm sure by next week you'll be able to walk around tall buildings in a single outing. Hey, even Superman has to recover from brain surgery, you know. ;)
See, that wasn't too bad...can't wait to see what Cheri has to say...
Lori
-
Ernie, step away from the scarf! :o
Sorry, man, but it is really time to send the scarf on to the next person.
Liz (EStacey07) has a 4.5 cm AN coming out on the 25th; there is also Anissa coming up April 1, and Nancy on April 8. Just pick somebody and get that thing in the mail! :D
Steve
-
Hi Steve,
I am not hoarding the scarf! :). It should get to Scarlett (SML) either the day before or day of surgery. I hope the day before, but either way it will be there from surgery day on through her recovery. Enjoy the scarf Scarlett!
Ernie
-
Excellent. Phew! You had me worried there for a minute... ;D
Steve
-
Day 10 - Saturday March 14th. Another good day. Slept in a little (until 9 AM), but bed is still something I look forward to escaping from as sleeping sitting up just doesn't feel right to me. We went to church today, and the music filled my SSD ear with tinnitus like you couldn't believe. I know that will settle with time, but wow :). Riding in a car is still making me feel very light headed, so I think I'll stay away from the wheel for some time to come. Even a swerve sends my senses into overload. Thanks to many of you, I know this is normal and will improve with time.
We did take our two walks today, but the first one was later, around noon, and it was hot outside. It feels much better to walk early in the morning. Our evening walk was quite nice.
No change with medications. I will take a pain pill before bed tonight. I may even switch to just straight tylenol soon, but for now I'm enjoying the drowsiness associated with the percocet, as it helps me sleep while stuck in "reading" position.
Ernie
-
Just curious . . .
For how long are we expected to sleep sitting up? Or is related to our tendency to headache post-op?
Thank you for the continued vicarious experience.
Nancy
-
Hi Nancy,
It isn't really sitting up, I may exagerate a little :). A 20 to 30 degree angle so the head is far enough above the heart to keep swelling down. I sleep with thin pillows because I am not comfortable sleeping with my neck propped up. That's just me.
They haven't told me how long, but I plan to find out on Wednesday.
Ernie
-
Hi Ernie,
I’m glad you’re having so many good days. You’re daily journal has helped tremendously, and you have inspired me to do my best before, during and after surgery!
Luckily, my tendency is to sleep with 5 pillows now, so that shouldn’t be too much of an issue for me. ;D
Thank you for sending the scarf along to me. I am honored to have it, and promise to get it to the next person a.s.a.p.
P.S. My husband has just joined the forum (Rich56) and plans on letting all my new friends know how my surgery goes.
He has been my rock through all of this, and I love him with all of my heart!! :-*
Scarlett
-
Excellent. Phew! You had me worried there for a minute... ;D
Truth be told, Steve, I was getting a little worried also. I was thinking that perhaps Ernie was getting a wee bit too attached to that leopard scarf ;)
Lori - I think you might be slipping. I thought for sure you'd mention the black fridge in the first picture (not the dart board in the second). It's been a long time since I've been to a keg party, but the black fridge has what appeared to me to be a keg tapper attached to it?? Or am I just making that up? Perhaps mini fridges are just different in Florida than they are in Illinois.
Nancy - I never slept sitting up - or even propped at up an angle - post op. No one told me I should and I had no inclination to (no pun intended). I didn't have any issues with swelling or headaches.
Jan
-
Hi gang: I had to sleep 'propped up' too, but I can't remember how long it was for. I do remember however, having my best 'naps' on the living room couch !
Always good thoughts, Nancy
-
Jan,
Well, one just does not know what to expect with this thing, does one? I'm such a planner, I'll just have to plan for every possible contingency!
Scarlett,
You know I will be pacing, awaiting every word out of Rich's fingertips.
I'm hoping to get the scarf as well, but I'm glad you have it.
How did the pre-op go? Or did I miss your report?
What was the question again? Grin
Steve
Steve,
What was the question?
Nancy
-
I keep typing a post and deleting it. It's a touchy subject. I'm not sure why some think I had the journal too long, although thinking back, I wish I had sent it off last week, but I'll be out of surgery 11 days when it gets mailed. From the entries I can get dates from, the average has been 19 days. There have been quicker, and there have been slower. In any case, I'm moving it along so stop picking on me! ;D
Ernie
-
Ernie,
Hope you weren't referring to my scarf comment. I was alerting Scarlett to my desire to have it one day.
I think we all know you passed it along. We're very pleased that it worked its magic on you.
How are you feeling?
Nancy
-
Not at all Nancy, and I let Scarlett know too that you wanted the scarf :). I am doing well. The comment was more to Steve and Jan about worrying about me sending off the scarf :). Steve and Jan, I know you are just concerned and want the scarf to keep moving. I just don't want people to here to think I would even ever consider setting it aside and forgetting about it. Misunderstandings probably, which can lead to feelings getting hurt is all. Some things better for PM's than open forum.
Ernie
-
Ernie -
I'm sorry you took my post seriously :-[ - I was just joking around. How long someone keeps the scarf isn't my decision, nor do I have anything to say about who it goes to next. Actually it was thought up long after my surgery and I have had no involvement with it - other than to read about it and see it on this forum.
I won't put words in Steve's mouth, but I'm pretty confident he was just joking around also. I'll let him speak for himself though.
Jan
-
Ernie~
Oh my goodness - I took the whole thing as just a big joke - we are such kidders here!! Please don't think anyone was being serious in any way!! You are probably moving it along much faster than most because of your warp speed recovery. I think there was just more joking towards you because everybody LOVES it that a guy has it - usually you think of leopard scarfs and women!!
K ;D
-
I'm sure you're right. I'm sure it was a joke, which is the way I should have taken it to begin with. For some reason I just felt pressured. I know you are all a great bunch and love to joke all the time :)
We are heading off to walmart (no, I'm not driving). Maybe we'll stop for an icecream.
Ernie
-
Jan,
I noticed the keg-erator in the background of Ernie's Superman picture - I'm guessing that's his "playroom"! :D Now we know the real reason Ernie can't walk straight! :D
Ernie, ice cream always helps! Have a lot of it!
Lori
-
Nancy,
I slept propped up and also got a pregnancy pillow (swear by it) to keep myself from rolling over. If not, I rolled to my surgery side and woke up in agony! Also, I think it took me four or five days until I could sleep through the night, but I'd have to check back over my posts. For me, the first three days (which don't count) were not great, but by the end of the first week I began to feel better. I was walking outside and napping a lot, but I did feel pretty good. It will be a unique experience for you (Ernie doesn't count either because he is Superman) but at least you'll be well prepared.
Marci
What's a keg-erator btw?
-
What's a keg-erator ?
Basically, a small refrigerator that holds (and keeps cold) a keg (approximately 15 gallons if filled) of beer and has the necessary components to dispense it, 'on tap', just as they do in a bar. Very popular in college dorms (and recreation rooms) across America. :) No, I don't have one.
Jim
-
I'm sure it was a joke...
Of course it was a joke, Ernie - or was it? :o
The magic scarf is, well, magic. It has been known to engender excessively strong feelings of attachment, so we have to keep an eye out. Oh it is seductive and fetching all right, but if you keep it too long, you will start to call it "My Precious." We don't want that happening.
Just look at the acute interest displayed by Nancy McDonald in getting the scarf for her surgery. Though it has already been postponed once, I bet she would reschedule surgery again, if it meant getting the scarf in time. I'm afraid we may have another struggle on our hands to get her to give it up.
No, we must be ever vigilant with the magic scarf, lest anyone succumb to its charms and start to loose their mind. Posing on a treadmill as Magic Scarf Man was a sure sign of trouble brewing. Intervention was mandatory.
But all is well that ends well, and now we can look back on it as just a bit of fun. ;D
Steve
-
Thanks Steve,
Yeah, "my precious" :) I got a laugh out of that one. I love that series of movies. It may be time to create a calico knit hat to pass around as well so more people will have something to grab on to!
Time for our evening walk! Catch you guys later.
Ernie
-
Yes folks, that's a kegerator, but it's empty at the moment :)
Day 11 - Sunday March 15th. Most of the day has gone similar to the last 2, although I've had more pain in the last hour now behind the ear. More pressure and more pain. I'm sure it will pass as it always does. I find my tinnitus is still responding to sounds from the other ear in a big way. I was on the phone today, something which is still a bit uncomfortable for me, and everytime the other person talked, it would "echo" a noise in the SSD ear.
I also noticed that as I walk straight ahead and look to the horizon, my eyes don't stay focused like they did before the surgery. Each bounce of a step moves the image across my vision rather than my vision following the image. I'm sure it's been that way for the last week and a half, just that I'm really starting to try to pay attention to what's different.
That's all for now. Going to take my medicine and get some sleep. Good night.
Ernie
-
Steve,
I bet she would reschedule surgery again.
Not!
Ernie,
"echo"
You must not have had enough fat for the lipo procedure to fill the void left by tumor extraction! I won't have that problem.
Thank you for the continued progress report.
Nancy
-
Hey, Ernie! The noises, odd vision, etc sound like the "normal" early on recovery things - at least, similar to mine ;) I know the pre-posties appreciate all your detailed updates - it will help when they begin their recovery process to remember that someone else did experience the same (or nearly so) thing.
...oh, let's not ever let the Magic Scarf become "My Precious!" Recovery is tough enough without having all those creatures chase us around :o (the steroids are frightening enough!) Now, if we'd like to start a topic on The Ring...perhaps we've finally found our next book for the ANA Book Club???
Keep up the great work, Ernie!
Cindy
-
Day 12 - Monday March 16th. Nothing unusual to report in itself. Isabel went back to work so I was on my own for most of the day. Went out for my walk around 9 AM, it was cloudy and a bit foggy, so nice and cool. We've been visiting an alligator at the park, but he/she wasn't there, probaby because it was not sunny yet.
I tried a game of pool. My aim is so far off it's scary. Anyone wanna play William Tell? :) I'll shoot first.
Wednesday will be my last daily update, but I will update if I have new improvements/setbacks.
Ernie
-
Ernie,
I'm willing to bet you could still beat me at pool. I think I'll pass on the William Tell offer though. My head has enough holes in it, thank you!
Lori
-
Ernie,
Good luck at your doctor's appt tomorrow. I'm sure he will be truly amazed at your recovery.
Keep posting your recovery- we love to hear from you. Give your body time to adjust to the SSD, and my great advice- Pace yourself. (Hard to do I know). Oh and frequent rest periods (I prefer NAPS).
Maureen :-\
PS- I like this icon because I have no smile on the left. There needs to be an icon with the droop going the other way. Though this icon is described as "undecided" I think it would be appropriate as "left sided facial paralysis."
Jim- can you get us a right sided facial paralysis smiley? :)
-
Yes folks, that's a kegerator, but it's empty at the moment :)
Ernie -
are you sure you used the correct smiley guy in your post? Shouldn't you have used the one with the frown?? ;)
Good luck at the doc's tomorrow. Like Moe said, I think he'll be amazed at your progress; VERY impressive!
I am officially nominating my buddy Lori for that game of William Tell - but only because I have a prior engagement. (Love you, Lori :-* )
Jan
Oh - note to Steve. Great story about the scarf. I thought LADavid was the only true writer among us, but you rank right up there ;D
And Jim, it saddens me to think that you don't own a kegerator :'( When's your birthday, again?? Perhaps I can convince our fellow forumites to chip and send you one :D
-
You're right Jan! It should have read Yes folks, that's a kegerator, but it's empty at the moment :'(
But I did give up alcohol for the Lenten Season, so better it's empty than full right now :)
Day 13 - Tuesday March 17th. Today was Saint Pattys day, and yes I wore green! I'm not Irish, but don't mind getting into the spirit! My wife had a doctors appointment today for some marginally scary stuff, but everything looks negative, which is a positive thing. I was out much of the day, so I'm on the tired side. My sister mentioned something about them taking out my balance nerve and replacing it with a grumpy nerve.
My daughter had two friends over today. They were sitting at the table eating, all talking at once while I was trying to listen to the television. That was a new sensation for me. I can't tune out, or sort of discriminate sounds anymore. I had to ask them to please try and keep it down. Strange coming from someone half deaf, huh? :)
Tomorrow is my big day...get my 20 staples removed. Thanks for the well wishes and I'll be sure to report back.
Ernie
-
I was out much of the day, so I'm on the tired side. My sister mentioned something about them taking out my balance nerve and replacing it with a grumpy nerve.
Ah, yes, I remember the grumpy nerve very well. I too experienced it.
Some of it comes from just being so gosh darned tired after surgery, some of it comes from being frustrated at your progress and/or limitations.
SSD takes a while to get used to also.
The good news is that this too shall pass. With time, the fatigue will go away and you should get used to the SSD.
Staple removal is a major milestone. Congratulations (in advance)!
Jan
-
Day 14 - Wednesday March 18th. Yep, 2 weeks ago I was at my pre-op appointment, getting cleared for surgery. Hard to believe it's been 2 weeks already. I count Surgery day as day 1, which was Thursday the 5th.
Jan, thanks for letting me know I wasn't the only one who ended up with the vestibular/grumpy nerve replacement procedure during surgery :). I am still not sleeping well at night, so I am tired during the day. I do try to do too much, and you all tell me all the time not to. Clearly, it is my own fault.
The Doctor told me he will leave it up to me to do vestibular exercises at home, unless I have a particularly hard time with it. I'm going to start searching these threads for what others have done. I still have issues riding in a car. Any long curve with any tight radius at all (on/off ramp) or a particularly lot of turns makes me dizzy still. I know, it's only been 2 weeks!
He was very happy about my quick escape from the hospital. He said the incision looks good, with just one small spot that has some skin overlap that he wants us to work at a bit by scrubbing lengthwise along that area. Two more weeks of ointment to take care of that too.
Good news for me - I can sleep flat now! I can sleep on any side I want. I can get water in my ear without doing any harm (no need to protect it anymore). When I'm done with my steroids, I can take Ibuprofen again for my non-AN related migraines (haven't had any since the surgery anyway). All in all I had a very positive AN experience, and thank God every day for the wonderful attention he gave me. Of course, with all of your prayers, he couldn't very well forget :).
I am not going away. I will be reading a lot, and will continue to post things of interest and try to help those who have questions that I can answer. Thank you all so much for your support through all of this!
Ernie
-
Hi, Ernie ~
Thanks for the updates and for assuring us that you'll still be a part of these message boards. As you well know, your recovery has been astounding and an inspiration to many, especially those who are scheduled for or contemplating AN removal surgery. Thanks for sharing it with us.
I'm pleased to read that you're cognizant of your blessing - and from where it came - just as I am in my own case, which was similar to yours in some ways, minus the 24-hour hospital stay (I was in for 4½ days and now feel like a slacker). :D I firmly believe in the power of prayer - and your experience (and many others) help validate that faith. Indeed, life is good. :)
Jim
-
Ernie:
The rate at which you are recovering is amazing. When you go for walks, do you have a walking buddy or do you use a cane? On week 6, I put away my cane. Car rides were rough for a while--like riding a roller coaster. I think week 6 was also when I got the nerve to drive.
Continued wellness, my friend.
Syl
-
Hi Syl,
The first couple of walks, I held my wifes hand to steady me, but mostly from fear maybe. I do well walking straight lines, and only have trouble when I look up and down or left to right. Now, with my wife working again, I walk by myself, and without a cane. I do have to be very careful if I look around. I do lose step...sort of stumble when I try to look around. When in a car, especially during turns or sharp curves (on/off ramps), I find myself closing my eyes. Still, I know you are right in that my recovery overall is amazing and I thank God for that (and all of you).
It's good to hear that you were able to drive again at 6 weeks, since that's my goal right now. I noticed that a quick surgical recovery does not necessarily translate to a quick vestibular recovery :). Those of us who still had nearly full use of our vestibular nerve going into surgery have a bit of work to do post-surgery. Still, I wouldn't trade my outcome for anything. You know, they say you have to be comfortable with your decision of treatment going in. I spent months going over optoins, and know I made the right one for me.
Syl, I know your surgery was back in June, and that you still have the headaches, but what about balance now? Do you still notice a big difference from your pre-surgery balance?
Ernie
-
Ernie:
I think it's great that you are walking without assistance so soon. I found a cane very useful. It helped me pick up speed and allowed me to turn my head. My sister insisted that it slowed my progress, by making me too dependent on it. I argue that it had quite the contrary effect. It elevated my confidence and got me walking by myself. I got out more because of it. In fact, before life with an AN, I always preferred walking with a buddy or I wouldn't go by myself. Now I prefer going by myself.
As for my balance, it is about the same as it was pre-surgery. In fact, I didn't even notice my balance was off until I learned what I had. I just felt dizzy alot. I find I'm bumping into doorways less often now. I don't think people can really tell that my balance is a bit off. So it's not too bad. I have come a long way with my balance since I had my surgery. I can almost stand on one foot with my eyes closed.
Continue healing.
Syl
-
Just a quick update from me. Yesterday, Saturday March 21st, I had a bout of heavy headed wonkiness with lots of pressure and all over head pain. It started about mid day and continued to intensify. I'm pretty sure this is in response to the decreasing dose of decadron that I have been on. I am down to just two pills a day, but both at one time (so one dose every 24 hours). That was my second day of that, today is my third. After that, I am at 1 pill a day for 5 days, then I'm done.
I took my decadron in the early evening (with dinner) and took 2 tylenol as well. Within an hour or so I was feeling back to "normal". The pain was not unbearable at all, just annoying. Once the decadron is finished, I think it will easily be controlled by an occassional ibuprofen.
Otherwise, my eyes still refuse to stay focused on anything more than say 10 feet away while I turn my head to the right. I know this is what takes the most time, but it is still causing some disorientation for me. When walking, it's like looking through the viewfinder of a video camera while travelling down a bumpy road. I can't yet focus on people walking toward me when I'm out walking. I just try to look at them and wave and say hello :).
Now for the real strange thing. When I lightly, very lightly, touch my SSD ear. I can "hear" the rubbing noise from my finger. I don't think I'm hearing it in the other ear. It sounds like it's coming from my SSD ear. Even if so, it's certainly not useful hearing by any stretch of the imagination, but just a few days ago I had nothing at all when I did this. The surgeon told me he couldn't save the hearing, and I thought he said the nerve was cut. Very strange indeed.
Quality of life is very much up there for me as a postie. I do pretty much everything I did prior to the surgery, and exercise even more! I'll be trying the driving thing real soon, and plan to return to work at about the 6 week point. I am still on lifting restrictions, up to 10 pounds now, and continue to try NOT to sneeze. The 10 pound restriction is hard to do because I forget sometimes.
That's about it. Today has started off as a very good day, and we were blessed with some cooler weather for walking too!
Ernie
-
When I lightly, very lightly, touch my SSD ear. I can "hear" the rubbing noise from my finger.
Before treatment, and even occasionally after treatment, I sometimes got this "crossover" effect. I would touch my left ear and hear a little sound in my right ear. Very weird. I suspect you are hearing it in the good ear, though, it just sounds like it is in the AN ear. I think the signal travels through your head somehow - like a BAHA, maybe. I doubt it is a sign you will get hearing back on the AN side, sorry to say.
Steve
-
Ernie:
Sneezing and coughing still hurt at 9 months post op. And, as if gagging when I brush my teeth wasn't bad enough, it hurts too.
Syl
-
I good with the sneezing and coughing. As for the headache, if it responded to the steroid, and it seems to happen again prior to taking it, I would suggest telling your neuro. I didn't have the headache as much as I noticed the swelling coming towards the end of my steroid treatment. My neuro put me on another round of it and I was good to go after the second round. I just wanted to make sure there was no pressure coming from anywhere so my brain could do it's healing.
Cheri, great to hear from you! I don't want to be on steroids for too long. It seems like I've been taking them forever. 3 days of 4 pills twice a day, then 3 days of 3 pills twice a day, then 3 days of 2 pills twice a day, then 3 days of 2 pills once a day, and now I'm at the 5 days of 1 pill, once a day. So I started with 8 pills a day and am down to 1 now. That's 17 days of steroids, plenty I hope. I think the swelling is mostly gone. I still get a blocked feeling, with popping and crackling when I swallow, but not all the time. No headache this morning at least.
I think I'll be fine when I'm done in a couple of days, but I'll be sure to let the doc know if not. He is great at answering my emails.
shaking finger at Ernie: Don't lift more than the docs said to lift, and no bending over either until you're given the go ahead. Take the necessary time to heal from surgery while you ease back into daily activities.
It's great to hear you're doing so well! But do rest and take these six weeks to heal, slowly. Slow, but steady! ;)
I do my best to follow the orders given to me. I do forget about the weight restriction sometimes though. Especially early on, 5 pounds for the first 2 weeks. Do you realize how little 5 pounds is?
Yesterday, I cooked out on the grill for the first time since surgery. Not that I couldn't have done it earlier, just never felt the urge. I had a nice T-bone steak, about 1.5 inches thick. I am happy to report that steak still tastes very good :).
I extended my morning walk yesterday, and I enjoyed it. I'm going to try it again today. I didn't look at the time, so don't know how long it was, but mornings are so beautiful here right now. I have to take advantage of them before we get into our hot and sweaty season. Off I go!
Ernie
-
Ernie,
I couldn't wait to get off the streoids as well--I counted the days. Also I must admit that I felt much better once I was off them. My incision and IV wounds healed completely once I was off them and over-all I started to feel much better, day by day, once off the steroids.
;D
Neal
-
Ernie and Neal,
Have you/did you notice your sleep was rubbish when on the steroids? It's half 4 in the morning, I just took my 4am steroid half an hour ago and sleep is not a happening thing, took me ages to sleep when I first went off too...just wondering if it's related. Didn't seem to have any issues pre-roids.
Cheers
JB
-
I couldn't sleep either when I was on the steroids - think it's fairly common. I also had terrible dreams while on them and an awful smell - still makes me ill to think about it - was the strangest thing :P. Was VERY glad to get off of them! Know they do serve a great purpose though.
You guys are all doing very well!
Cindy
-
JB, I have heard that steroids do indeed interfere with sleep. I remember that I was having trouble sleeping when I first started mine, but as the dosage decreased, my troubles did too. Some of my sleeplessness could be attributed to the incline I had to maintain as well.
Are you tired during the day? Even though I didn't get much sleep at night, I wasn't getting tired during the day. It was almost as if my body didn't need the sleep. Now, I'm getting 8 hours sleep each night, maybe 9 sometimes.
Neal, you bring up a good point about the incision. I have a spot in the middle that still scabs over, and hasn't healed right. I bet now that I'm at the end of my steroids, my incision will heal better just as yours did.
Ernie
-
Yes, I definitely slept better once off the 'roids'. :)
Neal
-
Today is my 3 week anniversary since surgery. I have been blessed with a near perfect outcome, outside of losing useful hearing in the AN ear.
Driving is nerve wracking. Trying to pull out onto a busy street, looking quickly left to right, right to left, leaves me light headed and dizzy. Making sweeping curves such as an on or off ramp really sends me loopy. I almost have to close my eyes, or focus on something inside the vehicle. I am doing the vestibular eye exercises, keeping focused on something while turning my head left to right, right to left, up and down. I do wonder, though, if perhaps this is all I'll get back? If so, I will just have to adjust to it.
I'm still walking every day, twice a day. Today I extended my walk again, and am up to 55 minutes. The evening walks are still the 30 minute walk. I find myself eating more than I used to, but I haven't been gaining weight because of the extra exercise. I do think my beer belly is beginning to pop a bit though. And that's without drinking any beer...no fair!
I have set a date to return to work. My boss is a very nice boss. He would be willing to give me the full 8 weeks that we scheduled for just in case. I am going to return to work after 6 weeks. I'm hoping to get some of the driving anxieties taken care of by then :).
To be honest, I miss work. I like my job and the people that I work with. In this day and age, you are lucky to have a job that puts food on the table, let alone have one that you enjoy doing.
I'm not sure how many more updates I'll do, since changes come slowly now. My AN journey is promising to be shorter than most, which is a good thing. I'm always looking forward to updates from new posties. It kind of brings things full circle for me.
That's about it for week 3. Thank you all for your wonderful support! I'll see you on the other threads until I decide there's something worth posting here again :).
Ernie
-
A very happy 3 week anniversary to you Ernie.
TTYL
Scarlett
-
Happy 3 weeks! I remember at three weeks thinking, 'OK, I should feel good starting today!' I was having good days/ bad days. I was running again a bit (slowly) at 3 weeks. Now I'm 8 weeks. I'm feeling much better - and the time has flown by.
Do keep in touch. You can be the wealth of wisdom the newbies need!
Good luck on the driving and return to work. I have problems driving at times when I put too much eye ointment in my 'bad' eye. I try to stick to the neighborhood roads and not do too much traffic or freeways (kind of hard not to do traffic when you live in the DC area!)
Keri
-
Hi Ernie,
Your in FL., your driving is fine :D :o ;D :D
Seriously, we enjoy your posts, they're not only entertaining, they help people. You have a big heart. I believe you have a lot to contribute.
Glad you have a nice work enviroment to return to, and an understanding boss.
Happy 3rd
Rich
-
Driving is nerve wracking. Trying to pull out onto a busy street, looking quickly left to right, right to left, leaves me light headed and dizzy. Making sweeping curves such as an on or off ramp really sends me loopy. I almost have to close my eyes, or focus on something inside the vehicle. I am doing the vestibular eye exercises, keeping focused on something while turning my head left to right, right to left, up and down. I do wonder, though, if perhaps this is all I'll get back? If so, I will just have to adjust to it.
Ernie
At 3 weeks out of surgery, you still have some recovering to do. I'm not sure how much more everyone else imprves with the issue of looking from side to side when driving. But it does get much better. For me, it's not what it was pre-surgery, but it certainly is better than what you discribe. Give it time. It's like you said. You'll notice improvements at a slower rate, but you do continue to improve.
Syl
-
Ernie -
3 weeks already? Wow, time just flies.
And driving already? I didn't even attempt to drive until 6 weeks post op. Your progress continues to amaze me ;D
The more time that goes by and the more you drive the more you'll get used to it.
I know what you mean about missing work. I had a hard time being off - even though it was necessary. You might want to consider returning part time before you go back full time. I found that although I was chomping at the bit to get back to my normal routine and normal work day I was still very fatigued. Working 1/2 days for a week or two made the transition to full days that much easier.
Just a thought,
Jan
-
Driving is nerve wracking. Trying to pull out onto a busy street, looking quickly left to right, right to left, leaves me light headed and dizzy. Making sweeping curves such as an on or off ramp really sends me loopy. I almost have to close my eyes, or focus on something inside the vehicle. I am doing the vestibular eye exercises, keeping focused on something while turning my head left to right, right to left, up and down. I do wonder, though, if perhaps this is all I'll get back? If so, I will just have to adjust to it.
Ernie,
Don't worry -- it may take a while but driving normally again will happen! Like so many other things in the AN recovery process, you'll probably have a slow but steady improvement and one day it will just occur to you that driving feels like it used to do! Try not to get frustrated in the meantime and just hold on to that steering wheel!
Your recovery postings have really been good and it sounds as though you're doing well.
Catherine (JerseyGirl 2)
-
My first few times driving...probably for a couple of weeks, actually, I tried to only go forward, no backing up ;) I even tried to only make right hand turns - I would sit and think about the easiest route (fewest turns, etc) to take before I got going. But, before I knew it, I was just back to driving without thinking about it...is that really a good thing, though???
You're doing great, Ernie!
Cindy
-
Hey, Ernie:
Thanks for the informative update and congratulations on your excellent progress in just 3 weeks. Like you, I had a fairly rapid recovery but was impatient and nothing was quite fast enough. Two weeks post-op, I asked my neurosurgeon if I could resume driving. To my surprise, he said I could. I drove later that day, felt O.K. and never looked back. The head-turning was a bit difficult, just as you describe, but I pushed past it out of sheer will power (my wife calls it 'stubbornness'). Based on the pace and extent of your recovery up to this point, I think this will improve for you, just as it did for me.
Although I was retired when my AN was discovered, I was anxious to get back into my usual routine. I'm a deacon in my church, among other responsibilities, which include doing all of the housework, as I have for many years, due to the fact that my wife's spinal problems (she's endured many operations and has lots of titanium hardware to show for it) make it impossible for her to do these things, but I can - and do. We have a deal: she grocery shops and cooks, I do everything else. Hey, it works for us (I hate grocery shopping and I'm a terrible cook). :)
Thanks again for your valuable contributions to these forums, Ernie, and may your recovery continue apace.
Jim
-
Ernie,
You never really stop doing updates; they just get further and further apart. You've got hourly, then daily, then weekly, then monthly, then quarterly, then yearly, then decadely...
We actual have gotten a 10 year update or two. Here is Rosemary's: http://anausa.org/forum/index.php?topic=8238.0. It still makes me smile. :)
I know you will be around in any case, to share that spirit and energy with everyone. Thanks for being here.
Steve
-
In a state where it is legal to drink and drive, I HOPE you stop to text, Darlin'. Put that beer can in the cup holder while you're at it. I can say that because my dad and brother became Texans, and I spent summers with Dad in Galveston (not really TX, but close).
Nancy
-
I used to multi task big time but am learning to actually STOP to text :o
Cheri
Cheri, You're scaring me! :) I see people texting while driving and just can't imagine how they do it! There's this guy at my work, who just might be my boss (and might be reading this) who also texts while driving. He does this at high speeds though, between 80 and 90 mph! :o
Steve, You are so right. The updates will get further apart, but there will be more. New milestones and anniversaries will come and go. I've gotten to know many of you well enough to consider friends, which will keep me coming back for some time to come.
Jim, You sound like a wondeful person and your wife likely feels blessed to have you. My wife and I share some of the housework, but only because we both work full time. I actually enjoy cooking, so usually we will go grocery shopping together. I'm sorry to hear about your wifes spinal problems but glad you have both adapted to deal with the situation at hand. I will say a prayer for you both.
Cindy, Catherine, Jan, Syl, Keri, Rich and Scarlett, Nancy and anyone I missed... Thanks for the well wishes. It's good to hear of your driving experiences and how long it took to feel comfortable. It's hard to see improvement when it comes so slow, which is why it's so good to have some dedicated people who continue to answer questions well beyond the initial recovery period.
Time to go for my morning walk!
Ernie
-
Ernie, I have read all of your updates over the last few weeks, and I would like to say it has done a lot for me, being that I have surgery tomorrow and it gives me a lot of possitive thoughts about my own recovery coming up. Just know your posting has impacted at least one person. your posting has really lifted my spritis, Thanks very much
Joe
-
Joe:
I'll be sending good thoughts and prayers your way.
Syl
-
Thank you for those very kind words Joe! If the updates helped even one person, then they were worth every minute I spent on them.
To be honest, it's even therapeutic for me to do the updates. It forces me to think back and compare one day to another, allowing me to see some of the small changes I might have otherwise missed.
Yesterday, my face broke out a bit...yep, pimples. Now if only my gray hair would go away and my voice would start cracking again :). The wife says it was the steroids, although I finished them yesterday (yayyy!!) I did a short practice night drive yesterday and the wife was a wreck sitting in the passenger seat. "You don't have to go that fast!" 65 in a 70 zone is a wreckless speed for sure :). Really though, the straight aways are easy. The ramps at night were about the same as during the day, which is a good thing. The hardest part is still looking quickly left and right for traffic. It's like I turn my head, but the brain and eyes and such take longer to get there. Have you ever turned a fish bowl and noticed that the water and the fish stay in the same spot even though the bowl was turned? That's what it feels like :)
Well, this wasn't meant to be an update, but ok.
Joe, if you haven't left yet, I sent some prayers your way for a successful surgery and quick and full recovery!
Ernie
-
Joe - Good luck tomorrow. Is anyone posting for you? I may have missed it on another thread.
Syl - I don't know . . . are you the cutest yet in that red hat? It's making me rethink my color choice. ;) Hi, Steve!
Ernie - Your updates are a lifeline of hope for all of us, if I may say so.
Nancy
-
Ernie,
Just remember you are driving in FLORIDA in MARCH!! It's just insane driving there right now--so many tourists and "bluehairs." (Hey now! I am a platinum highlight hair not a blue hair!) I was down there in March 2 years ago and the driving scared the crap outta me!
Thanks for posting all these updates--your experience is definitely a benefit to others approaching surgery.
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-smiley-12.gif)
-
Ernie:
I'm having trouble keeping up with soooo many posts. I need to ask, where are the scarf and journal?
Syl
-
Ernie:
I'm having trouble keeping up with soooo many posts. I need to ask, where are the scarf and journal?
Syl
Scarlett has just finished with the scarf and journal, and it is now on its way to Nancy, I believe.
Ernie
-
Hi Erniie,
It sounds like you've regressed to your teenage years -- breakouts and starting to drive!! Grin Grin Grin Seriously though, I'm glad to hear you're doing so well.
Congratulations on reaching the milestone of driving again -- feels great doesn't it?
Best wishes,
Wendy
-
Hi Ernie,
One full month as a Postie, CONGRATULATIONS :o :o ;D ;D
Did you really think we'd forget :D
Rich & Scarlett
-
Almost a month. Surgery was March 5th, so technically a few more days. It has, however, been 4 weeks :)
Ernie
-
;D
-
Ernie, are they putting out an all points bulletin to Florida residents that you'll be driving again? Just asking... ;D
Becky
-
Hey Ernie-
love reading all your updates! Reminds me of where I was just 11 months ago. You sound like you are doing great - and what a terrific attitude.
Debbi
-
Almost a month. Surgery was March 5th, so technically a few more days. It has, however, been 4 weeks :)
Ernie
It's official ;D ;D
-
Almost a month. Surgery was March 5th, so technically a few more days. It has, however, been 4 weeks :)
Ernie
It's official ;D ;D
Yep, 1 month! :). My next doctors appointment isn't until May 18th. We'll see how much hearing I have left in my right ear. I know it isn't enough to be useful. I can only hear things that are right up to my ear, and then only lower tones. I consider myself SSD since I can't hear things around me from that ear.
I've had a few headaches, but nothing that OTC meds can't take care of. I still get some pain along the incision, and it's still not fully healed.
Sleeping has gotten easier, and I'm finally comfortable sleeping on my AN side. I'm also getting better with the driving, although left turns onto busy streets are still tough. It's just the turning the head quickly left to right that makes me very light-headed.
Cheri, walking in the dark is challenging :). When I get up out of bed at night, I have to keep hold of the bed and bureau to make my way toward the bathroom :).
Ernie
-
Hi Ernie,
Oh, remember what I told you about the driving, your in Florida :D :D Just teasing.
Since you do have some hearing in your right ear, is it possible that some kind of a hearing aid would help?
Rich & Scarlett
P.S. she's right here next to me on the couch, and says hi.
-
We're you guys staying up til midnight just so you could do that?!
-
Oh, remember what I told you about the driving, your in Florida :D :D Just teasing.
Remember it? I'm living it! :)
Since you do have some hearing in your right ear, is it possible that some kind of a hearing aid would help?
I doubt it, but only because I have no mid or high tones at all. It might help me hear some of the grumpy old men at walmart that greet you at the door.
P.S. she's right here next to me on the couch, and says hi.
Hi Scarlett! I hope you are still feeling ok! If you ever feel a bit "blahish", but not really tired or sore, try going for a walk. I'm on my way out the door here in a few minutes to do just that! :)
We're you guys staying up til midnight just so you could do that?!
No. I'm always up until around midnight, especially on the weekends. I get up between 7:30 and 8:30 to start my day. No naps in between. Now when I go back to work and have to work the 6 AM to 2 PM shift, I'll come home and take a nap :).
Ernie
[/quote]
-
Hi Ernie,
I wish I could join you in Florida for the walk. Here in MA, it’s a beautiful sunny morning, 38 degrees! I think I’ll take your advice and go out for a ride in the car! 8)
Scarlett
-
Scarlett,
Just got back from my 1 hour walk. It wasn't very pleasant. It is getting too warm too quick now. I'm going to have to walk much earlier now :). It is already in the 80s and the dew point is in the lower 70s. In New England, they call that oppressive humidity. Here, it's the norm from June through September. Normally it's a little less humid here in April, but not today.
We do have a nice cold front coming. Tuesday will only be in the 60s, and Wednesday morning we should be down around 38. That's pretty chilly for us in April :)
Ernie
-
Hey guys and gals,
Just a short note to let you know I'm doing well, and that my parents are going to be in town visiting us for the next week. I will surely check in from time to time, but may not have as much time to post.
Be well all!
Ernie
-
Have a great visit with Mom and Dad. I have a friend visiting from Clearwater. Poor thing, she's freezing up here! (DC / MD)
-
Tell your friend that it was 39 degrees this morning in Riverview, and yesterday didn't get out of the 60s. :)
Ernie
-
Have fun with your pares this week Ernie! Now I'm with mine it's good times - they're trying to do a lot for me when I am quite able to do it myself - it's lovely of them but soon they'll see how much I can actually do and I'll be able to get on with it!
Cheerio
JB
-
Ernie -
I read on another thread that today you're going back to work.
Just wanted to say Congratulations - and don't overdo it. Nap if you need to - after work, that is ;)
I found returning to work really made me tired, but I loved being there. There's nothing quite like returning to your normal routine 8)
Jan
-
Thanks Jan,
I fully intended to update here after my first day of work :). I never was very tired after I started the steroids :). I'm off them now, of course, but from about day 3 onward, just not much fatigue. Once in a while I'd feel weakish, but not terrible.
My parents left today, hated to see them go :(. I'm trying to get them to move down here, but my mom is stubborn :). I am a shift worker, so today's shift is from 2 PM to 10 PM. It's a quiet shift, so it should go well. The only real problem I might have is remembering all my passwords to log into the computers :).
I'll let you all know how it goes.
Ernie
-
Good luck, Ernie! Has it even been six weeks?
-
folks heading back "home" :), no "roids" and Ernie, you're doing great! See, I didn't slap you here! :)
Continued wellness! :)
Phyl
-
Best wishes for your first day back to work Ernie! What type of work do you do?
-
Ernie:
Going back to work already?
I was out from for 2 months. I began working 5 hrs/day that 1st week. Then, it was back to full-time right after that because I felt I could handle it. It was rough at first, but I really feel that getting back to work help me in my recovery process.
Good luck.
Syl
-
Gee, look at the time. 2 AM. Well, I'm not done with my glass of whiskey yet anyway.
Work was ok. I was glad to see everyone again. It wasn't as quiet as I hoped. I work for the National Weather Service. We had to put up a Tornado Watch for our northern-most county, which adds lots of extra stuff to do. The weather came down from the north, and did get to Levy County before I left. No severe reports, but I did have to issue a marine warning. Didn't have time to get to the bathroom.
8 hours of air conditioning and probably close to 15 computers running in the room just destroyed my hearing. By the end of the shift, my tinnitus was screaming! It's still 3 times louder than normal. Hope it settles down before work tomorrow :).
It's amazing. I was so sure this would be easy. Mostly it was. The biggest hurdle will be the tinnitus. I may have to plug my good ear! Will sure make it tough to answer the phones though :). Really, I can deal with how it went. I was just hoping it wouldn't be such a dramatic change. I wonder what causes my deaf ear to go bonkers when normal sounds come in the good ear?
Geesh. Here I am complaining about stupid little stuff when others have debilitating headaches, facial weakness/palsy, eye issues, etc. I'm tempted to go back and delete everything I just typed and say everything went perfectly well! :)
It's funny how we focus on the negative and dwell on the problems, rather than focus on the positives and embrace the blessings that were bestowed upon us. Sometimes its important to step back, and look at what you have rather than what you don't.
Hi. I had a great day at work today! I am so lucky to be able to return to work so soon, and have no major issues. Thank you all for your wonderful support through all of this! (that's better).
Ernie
-
What a cool job, Ernie! Overstimulation and stress always aggravate my tinnitus.
Gotta go, Dave's gonna make first attempt at washing some of that nasty hair in my scar photo.
Then off to track down some more softening, laxing alternatives for the system. Eek!
Love ya, proud of ya,
Nancy
-
Ernie -
thanks for the recap of your going back to work milestone.
Sounds like it was pretty good - and it will get better as you adjust to the "new you".
Nancy -
if you still have goop in your hair, try Dawn (yes, the dish washing detergent). It works great on post op hair goop.
Thanks again for this tip, Lori ;D
Jan
-
Oh, thanks, Jan. Yeah, that stuff is supposed to be great for windows, too, so I keep it on hand. The shampoo and conditioner I had seemed to work fine, and I feel like a million bucks. Sorry for the hijack.
-
The shampoo and conditioner I had seemed to work fine, and I feel like a million bucks. Sorry for the hijack.
Yea, nothing quite as wonderful as a shower and a shampoo post AN surgery. I still remember how great it was ;D
Don't worry about the hijack. Ernie just completed his first the other day, so he'll understand ;)
Jan
-
It's ok to talk about your tinnitis as it is not a fun thing to have to put up with with. The odds are that you will be having a daily problem with it. Mine is always worse by night and I am retired. I have it on both sides and different noises. You may have to try the ear plug and while I have never used one some do and can tell you what is the best type to try. You will adjust in time to some extent. Sounds like you have an interesting job. My kids have always made fun of me in how I pay attention to the weather.
Cheryl R
-
The biggest hurdle will be the tinnitus. I may have to plug my good ear! Will sure make it tough to answer the phones though :). Really, I can deal with how it went. I was just hoping it wouldn't be such a dramatic change. I wonder what causes my deaf ear to go bonkers when normal sounds come in the good ear?
Geesh. Here I am complaining about stupid little stuff when others have debilitating headaches, facial weakness/palsy, eye issues, etc.
Ernie
Ah Ernie,
I feel your pain ! Tinnitus can be just as bad if not worse than any other post op problems. Unfortunately, tinnitus controls my life now, and what I can do and for how long.... Hopefully yours will settle down. Take it easy. And it's OK to take naps. That's the only way I can escape my tinnitus. I can actually sleep through the shrill ring.
Mine sounds like that ring they do at mass (catholic) with the bread and wine. Perfect match! What's that part of the mass called? You're Catholic, I think..... ???
You took on a lot by going back to a full day of work right off the bat.And now there is severe weather (just watched the news) so I'm sure it's not an easy day at the office. >:(
Hang tough.
Maureen
-
Hi Maureen,
Yes, I'm catholic. And they have once again begun to ring the bells since lent is over with :). I attribute much if not all of my rapid healing to receiving the sacrament "anointing of the sick". Seriously, the day after surgery, I felt fine and was ready to go home.
Ernie
-
WOW, Ernie, that's AWESOME.
I was rushing to WA from TX for my surgery and did not get annointed before I left. :(
Ah well, I'm alive. Prayers were bountiful. (My brother is a priest)
The neurosurgeon was amazed that I didn't stroke out from my bloody AN smashed against the brain stem for so many years.
I remember waking up the morning after surgery. He was just sitting there staring at me and said "Pretty"
I said "Oh you think I'm pretty?!". I had all my mental faculties, and humor too. Okay had to sacrifice the facial nerve, but we're working on that......
He tweaked my toes on the way out. I'm sure he was in awe.
Have a great one.
Maureen
-
Ernie:
Its great to see you had a great 1st day back at work. Don't overdo it & take alot of breaks.
Syl
-
Hi Ernie,
Don't feel bad about putting your comments on how your tinnitus went crazy at work. It doens't mean your being negative or ungrateful. You're always upbeat and looking at the optimistic side of things. I'd rather hear about how you really felt and some of the struggles than just a pat "everything's great!" answer. And you're real supportive to the people that have major struggles as well.
Glad you're back at work!
Keri
-
Hey Gang!
Yesterday was my 6 week anniversary. Can you believe it's been 6 weeks? Wow!
I worked 3 days so far, and start my next 6 shifts tonight at 10 PM. This will be the real test. The good thing is that there won't be much traffic in either direction, so driving should not be too much of an issue.
Home life is almost back to normal. Tinnitus and SSD remain my biggest obstacles, but I can cope. Light headedness still gets me when turning my head or even an up and down motion.
As for my accomplishments so far from 2 weeks ago... I have returned to work. I mowed, edged, and weed-whacked the yard. Picked up leaves, and did some weeding. So yeah, pretty much back to normal. I guess my AN vacation is over :).
My next appointment is not until May 18th. I'm sure the docs will be happy with my progress.
Thanks again to all of you here on the forums. You sure make this journey easier for people and really do "make a difference" in our lives.
Ernie
-
Wow! You're amazing. Now get up here and do my yard work!
-
Hey Gang!
Yesterday was my 6 week anniversary. Can you believe it's been 6 weeks? Wow!
Seriously? Seems like yesterday - at least to me ;) You're doing great for only 6 weeks out. Keep up the good work.
Jan
-
All I can say ia WOW,,,I"M only ten days but each day brings progress...I did Wii balace and managed over 440 steps in 10 mts MY goal was 80 steps...lol....
Slight diziness when turning but I keeo practicing my blind spot checks and it should get better.
J0 ;D
-
Hi Ernie,
It's been a while, but I do try to stay up on what's going on.
It would have been nice to meet you today at the brunch, but I'm really glad you had a nice visit with your folks. There's no better medicine than that :)
Sorry to hear about the tinnitus issue, hope it eases up. And like the others have said, it's not complaining, but rather, sharing. And although I don't know what it's like, I care just the same.
Your job does sound really cool.
Hey, did you hear that d*** Albert retired and did you ever meet him? (the program thinks I'm swearing, that's too funny, for those of you not familiar with Mr. Albert, his first name is Richard, but they call him d*** on TV :D :D :D
Rich
-
Ernie, don't ever think anything is trivial here. That's what we're all here for one another for...the 'small' things are just as much of a concern as the 'larger' issues. It's a perspective.
I deal with the tinnitus too PLUS I get these electrical charges when I talk on the phone. WEIRD! I haven't had but one person respond about experiencing the same sort of alien like sensations, but it's at least one so therefor I know I'm not totally loosing it. Nonetheless, sounds like you're doing very well. YAAA! ;D
Cheri
p.s. Going through a sort of 'mourning' I suppose for the loss of hearing in my one ear. Guess since I 'made it through', it's becoming a bit more of a reality check. I'm like you though..I'm not complaining, just trying to face the issues. I suppose this is just all a "process"....before AND after! Forever...probably. But that's OK too.
Hi Cheri! Getting to a couple of posts now under my own update thread :). Now that I'm working, I find it harder to respond to all the posts, but I'm gonna keep trying! What is the electrical charge like? When I hear sound in my good ear, I get a reaction in my bad ear. It's not really an electrical charge, but more of an echo of what I heard, but in static noise instead. Even typing right now, each letter I press, I get the echo. Very annoying.
Some of my hearing in the AN ear has returned. Not enough to be useful, and in fact, not enough to help me with directionality, but it's there. I put headphones on and shut off my good side. Then I used a program where I talk, then it plays back. Yep, I can hear, but it's really low and muffled. We'll see what's left when I go to the docs on May 18th.
Ernie
-
Hi Rich! I wish I could have made it to the brunch too, but the timing didn't work out for us. I'm going to set a winter one up here in Florida :).
I never met Mr. Albert "can't use his first name :)" but I watched him on TV all the time. Hard to believe he's retired now! I must be getting pretty old :). I don't get much TV time, just when tropical cyclones threaten and the news crews come out to film. We get a bit of radio play during unusual weather events, and tons of newspaper coverage.
Ernie
-
Ernie
If you have the winter brunch in March I"ll be there as I'll be in ST-Augustine again for the month.....
JO ;D
-
That's actually good news, Ernie, that you have a little hearing in your AN ear! Maybe there is hope to dull the tinnitus with just a little bit of hearing, and hopefully your hearing will slowly improve.
Finger's crossed :)
Maureen
-
Oh! The light bulb went off! That's why my tinnitus is worse. Dr. McKenna explained tinnitus to me (See Spa Day thread for Monday.), but I didn't follow through with the conclusion that I must have had some hearing left in my AN ear, and when the nerve was cut, my brain had to fill the void of entire hearing loss.
Brilliant, Maureen!
-
Wow, Ernie! I am just reading about your recent return to work and am so impressed with how quickly you have sailed through your r4ecovery. You've had your surgery and recovery while I've been on medical leave and I'm still not back. Good for you! I'm due to go back in a few weeks and I'm looking forward to it. I hope your tinnitus improves - funny how that SSD ear causes so much turmoil with noises.
Continued healing, Ernie, and you are an inspiration to many of us whose recoveries have plodded along more slowly!
Kathy
-
First, thanks Kathy! I'm glad to hear that you will be able to return to work in a few weeks. That means progress is happening!
Now an update! Today makes 7 weeks post-op! This morning I am finishing up my last graveyard shift (10 PM to 6 AM) of 6 in a row! I made it through! I had trouble on the first two with lots of sneezing (I'm allergic to work) and just getting used to not sleeping at night. By the third shift, I was back in the groove! I now have a few days off to get back out of the groove :).
The tinnitus is as bad as ever, maybe worse. I don't know why it's getting so bad. Probably the stress of returning to work and the change in my daily schedule.
I'm still trying to walk often, but working nights and sleeping days makes it tougher. It's in the 80s by the time I wake up, and just too uncomfortable for a long walk. I have been walking every other day for an hour, just to keep myself in the habit.
We may try camping out this weekend. I'd love to see what a lot of peace and quiet can do for my tinnitus. Heck, I have all the sounds of nature right inside my head already, so it won't matter if the bugs make noise or not :).
Time to sign off and head home and get some sleep. :)
Ernie
Mini update: It was right around 50 degrees when I got home this morning so went out and did a 45 minute walk. So relieved to get that done when it was cool! Now it's time for some sleep. :)
-
Good for you, Ernie! Your life is back.
I'm battling with increased tinnitus as well. I live in the middle of nowhere, and the cicadas are ever present in my head. This I attribute to the cutting of the acoustic nerve and wonder if it might have been possible to have preserved the connection to have avoided the amplification. But I'm just going to accept it as my new white noise and not let it cramp my style.
I've ordered my surgery transcript (from the infamous Mili who will have to be called three or four times before she ever actually mails it) for a play-by-play of the surgery. Should be a good read. Do you have yours?
Nancy
-
Glad to hear you are "back in the groove" Ernie ;)
I think you will love your camping this weekend. The outdoor nature sounds help to squelch my "EEEEEEEEing" tinnitus, and I can't wait to go outdoors and do some gardening (actually at this point, it is called de-weeding and debulking). Have fun enjoying mother nature.
And Nancy- good that you are trying to accept your new white noise. :'(
Maureen
-
Thanks for the well wishes. I talked to the wife about camping this weekend. She said it sounds like fun, too bad we have more painting to do. OH well.
Nancy, My nerve is at least partially intact and I get the amplification, so perhaps there are other reasons for it. Mine is already cramping my style, so I'm forced to change my style. I will NOT be going to very many baseball games this year. They are too loud. I will not be going to any movies, except may the new Star Trek movie. Yep, they are too loud. We will still go to theme parks (we get yearly passes to Busch Gardens and Universal Studios), but I will NOT be riding all the roller coasters anymore :(. That one is more due to my light headed issues.
To add insult to injury, Busch Gardens took away the free beer! What's next! :o ;D
Oh, and yes Nancy. I have the surgery transcript(s)! My wife is a nurse and got all that stuff for me. Everyone in the room had to write one, so I have a few :). Pretty interesting stuff. They initially had trouble finding the facial nerve for some reason :).
Ernie
-
Ernie, I'm sorry to hear the tinnitus is getting worse. :( I hear you on the roller coasters, just thinking about it right now makes me want to go lay down. Glad you are still able to get lots of walking in, it does help a lot. Keep on keepin' on!
-
Ernie:
Glad to learn that your recovery is coming along so well. Walking is good, so is working - if you can handle it, as you obviously can - with some effort, of course. Take heart- we went to Disneyworld® last year and Ii was able to ride the infamous Space Mountain roller coaster, Test Track and a few, less rides with no problem. Of course, this was 2 years post-op. It takes awhile, but things do improve. As for those surgery transcripts, I have to admit that I've never seen mine - mainly because I never asked to. My surgery went well and frankly, I don't care to know exactly what my surgeon did, minute by minute. He gave me a pretty good explanation ('the CSF simply poured out once we opened your skull, I had to move your brainstem - but just a tiny bit", etc). I'm good with that. Of course, had I not enjoyed such a good outcome, I might have been a lot more inquisitive. Keep up the good work and you'll be back on a roller coaster in no time.
Jim
-
]the CSF simply poured out once we opened your skull, I had to move your brainstem - but just a tiny bit"[/i], etc). I'm good with that. Of course, had I not enjoyed such a good outcome, I might have been a lot more inquisitive. Jim
Wow Jim, I had no idea! You sure did have some divine intervention during that surgery!
Maureen
-
First, a note to the mods. You can move this whole topic to Post-Treatment section if you like. I just wanted to keep my updates together.
As most of you suspected, I did quite well at the docs today! I do have more issues with balance again though. My balance over the last 2 weeks has been deteriorating. It used to be just light-headedness, but now I even lose my footing. Just yesterday I stumbled down two small steps in my home, dumping half a cup of coffee onto the floor. The doctor wanted to know what I was doing walking down steps with a cup of coffee in my hand :). He said that two things are probably causing my decrease in vestibular function. 1) My returning to shift work is likely upsetting my sleep habit, thus keeping me more tired even if I don't notice it. And 2) I have stopped walking everyday since returning to work, because of the shift work, rain, and heat this time of year.
Along the same lines (vestibular), I mentioned to him that my up and down head motions cause some pretty intense light-headedness. He said that's because I have not been using that motion much compared to the left to right. I guess I need to find someone to talk to that I can agree with more often (shake head up and down like a "yes" answer) instead of someone who is always wrong ;).
We talked a bit about hearing. I can hear low tones, although they have to be louder than normal. I thought it was interesting that I could hear the high tones through my head and into my good ear :). If I had wanted to, I could have cheated the system and shown good hearing in my AN ear :). I pointed to my good ear each time I pushed the button to let the audiologist know where I was hearing it from. She just smiled and said it was quite common. Even with the static, I could hear high tones through my head and to my good ear. Anyway, I have no useful hearing left. Words sound like muffled vibrations in my AN ear. Unfortunately, that does translate to interference when I'm in loud places. That is, while I hear good in my left ear, my brain is also trying to process the muffled garbage in the AN ear. I'll probably pick up some earplugs. Dr. Bartels feels that my brain will eventually learn to ignore the AN ear since there is nothing useful coming from it. I hope he's right. He wanted me to try out the BAHA sooner than later, suggesting it's better for the device to be part of the original learning curve of the brain as opposed to adding it later after the brain has adapted. Unfortunately, I'm not yet convinced it is necessary. My next appointment is in 3 months, and I will decide then.
Otherwise, the appointment was pretty uneventful! I'm back to doing everything I was before surgery, except riding roller coasters. I did forget to ask him if I was completely off restrictions though. I'll have to shoot him an email.
Thanks for reading, and I sure hope others can enjoy as quick and complete of a recovery as I have been blessed with.
Ernie
-
Well, that's good news, Ernie, except for the carpet stain.
I'll be considering the BAHA as well at some point in the future, so we can ride that roller coaster together.
Be careful out there.
Nancy
-
First, a note to the mods. You can move this whole topic to Post-Treatment section if you like. I just wanted to keep my updates together.
hey ernie...er... Jan... will keep it here and for the future, should be posted in Post-Treatment forum. :)
-
Hey Ernie,
Congrats on "uneventful"... it does sound like you are doing well and other than coffee spills due to trip-ups, you sound great! Sending wishes for continued wellness.. and GoSox! :) (ok, Papi needs some help... send some good vibes....)
Phyl
-
Hi Ernie,
I'm glad your checkup went well. Did you doc suggest going to a physical therapist for vestibular rehab? That would help your balance problems and possibly your lightheadedness and bobbleheadedness too. They will give you specific exercises to do that will help improve all of these problems if you do them religously. I still have some balance minor problems, but they are much better than they were post-op and I owe that to my physical therapist and my daughthers' ballet teacher. the bobbleheadedness (aka wonky head) gets better with time, as my doc predicted it would but has not gone away completely. I'm not sure it will. If I have to live with it, it'snot the worst thing in the world. Keep us posted on how you're doing.
Wendy
-
Ernie,
It sounds like your recovery is still going well, please continue to keep us posted.
LisaP ;D
-
Good hearing from you Ernie, but sorry to hear about your decrease balance issues.
Yep the body does tell you when you are overdoing it or not doing something right.
Hopefully you can make it a priority to get some vestibular training going in a nice air conditioned setting, and hopefully insurance will cover it!
Definitely is a must.
Hang tough, and don't walk down the stairs with a cup of coffee! ??? (Also don't breathe, or read the paper with your cup of coffee :D :D)
Maureen
-
Warning: this topic has not been posted in for at least 120 days.
Unless you're sure you want to reply, please consider starting a new topic.
Ok, so it's been a few days since I've updated this post :).
First, if you have been through the surgery, through the recovery, and entered the "I'll post in another month or so" mode, let me recommend that you read your ENTIRE post-surgery thread again! I just did that, and I think I've read some posts for the first time! Probably not, but lots of those posts I read were under the influence of controlled substances :)
Elsewhere in the forums I posted about how I was getting daily headaches 3 to 6 months out of surgery. I was concerned about having to take pain meds for the rest of my life. Well, good news. I probably only take OTC's now about once a week!
Believe it or not, I am 1 week away from my 1 year anniversary! No, I haven't scheduled my 1 year MRI yet, but I feel good and am blessed to have had the support from all my good friends here in the forums! I will try to post on or near my 1 year anniversary, but wanted to get a post in before it passed :)
I'm going to keep this on the short side and save some bandwidth for my real 1 year update, but suffice to say that if I've been away from the boards too long, it's because you all prayed too hard and put my life back together in record pace!
Ernie
-
well, now that the site has hand-slapped you for not updating this thread in over 120 days..... 'nuff said! ;D
CONGRATS Ernie on wellness well done! I can't believe it's a year already and ...... me thinks you need to come to Boston for the brunch in April so we can celebrate this terrific news with you!
Yes, you have been missed! :)
Congrats again on this great news! :)
Phyl
-
Good news is always so nice to read, Ernie!!!! I was wondering how you were doing. Looking forward to a report for your one-year anniversary.
Kathy
-
Hey, Ernie!
Thanks for the belated update and it's good news. I'm glad to learn that your one-year surgery anniversary is going to find you in good shape. I recall that your hospital stay was so short that you were able to have your wife wait in the car and drive you home, or something close to it. ;)
I'm glad you warmly remember your many friends here - just as we remember you. I'll look forward to that 1-year MRI update, so 'don't be a stranger'!
Jim
-
Hey, Ernie! Good to "see" you again! So glad things are going well...you always were the model AN patient ;D
Cindy
-
Hi Ernie - Ditto what Cindy said! Nice to hear from you - always good to hear the happy outcomes!
Debbi
-
Hey our Ernie is a big time celebrity in Tampa Bay! He was quoted in the St Petersburg's Times from the National Meteorological Society about the record breaking cold temperatures in the Tampa Bay area. Tampa Bay and area is breath taking. I suffered greatly from many, many headaches, (thanks to El Nino) but I had many, many drugs, so I did enjoy the sights. Fort De Soto was beautiful. I regret not hooking up with you Ernie. I was fighting a nasty cold here at home just a few days before we left and my sister didn't have a computer in Largo. She was going to take me to the library a few times, but you know how it is, we got busy, forgot and here I am sit at home on my computer. The nine days went really fast!
Congratulations on your 1st year anniversary. Book your MRI, you know it is important. Let me know when the gulf breezes are going to start blowing my way way to warm us up here in Southern Ontario. I love the gulf side of Florida.
Anne Marie
-
Anne Marie - Sorry to hear about all the headaches. I'm glad you otherwise enjoyed yourself here, it really is beautiful.
Everyone - Yesterday was my 1 year anniversary which was met without much fanfair. I have not yet scheduled my 1 year MRI. I see the doc next month.
On March 4th I went to my primary care provider about a stiff and sore shoulder. She tried to move it around and told me that I have a stiff and sore shoulder. Well, not really. She said I have a "frozen" shoulder. I have to make an appointment with an orthopedic doc. I am taking a prescription NSAID but it doesn't really do anything for me.
Other than that, I am mostly off the pain killers except when I can't stop a sneeze or get into a coughing fit. Those still bring about my headaches.
It's looking better and better for my making up to New England to meet some of the gang in BoSox land. I should know for sure in a week.
Guess my next update will be in a year :o
Ernie
-
Everyone - Yesterday was my 1 year anniversary which was met without much fanfair. I have not yet scheduled my 1 year MRI. I see the doc next month.
Ernie -
you HAVE to celebrate! Brain surgery is a big deal and you came through with flying colors.
Besides, life is short you should never miss a chance to drink a few margaritas ;D
Congratulations on this very important milestone - and best wishes for many more.
Here's to a clean MRI. Cheers!
Jan
-
Congrats, Ernie, and I'm SO GLAD you get to go up to the New England luncheon. I'd love to go - I crashed their's last year because my husband was up in Boston for the marathon. I loved meeting everyone, though I usually couldn't understand everything being said! I had a blast. (I was several months post op at that time.) That will be a great one year celebration for you!
Keri
-
Yes, I agree with Jan that this is an occasion to break out the party hats! Congratulations, Ernie!
And, if you miss the NE meeting, the New Jersey group is meeting on Apr 18 (see www.ananj.org (http://www.ananj.org)) and the NYC gang is meeting on May 2. Heck, you could make a month out of it!
Debbi
-
I nearly missed my 1 year (and 1 month) post-op appointment! I went to bed last night thinking about my 1030 AM appt for physical therapy. Did I mention I have developed a frozen shoulder? Anyway the wife tells me I have my 8 AM appointment with Dr. Bartels. Yikes! I forgot all about it!
Anyway, Dr. Bartels was very happy with my progress. I will have my 1 year MRI on Friday, April 23rd (when I get back from meeting the gang in Worcester). Then, assuming a clean MRI, my next appointment with the Doctor and MRI is 5 years after that! He did say I'm welcome to come in any time between that as well :).
I find I'm having less and less to complain about at each visit. I think that's a good thing. The tinnitus is still loud, but that isn't likely to change. I asked him to show me exactly where the bone was removed. It was much lower than I thought. I had assumed it was directly under the scar. I asked because I have some "rough" spots behind the ear right where my sunglasses land. He said that's exactly the bottom edge where the bone was put back. My sunglasses start to hurt me after about an hour, but he did recommend a product to put on the inside of the sunglasses where it hits the ear.
My only other complaints were pretty severe pain when sneezing, which subsided over 30 minutes...some light-headedness when going over bumpy roads...and headaches when I first wake up. He believes there is a slight opening where they put the bone back that can be causing the pain when I sneeze. The pressure build up is what does it. I told him I can certainly live with it.
Honestly, there are many days I don't even think about my AN. Yes, I always notice the tinnitus, but I had that before the surgery. Yes, I'm deaf on one side, but I have adapted well and now automatically position myself where I need to when talking to people.
All in all, it has been a good year and I got a great 1 year/1 month report from the doc! I had already posted my 1 year anniversary last month, but figured I'd refresh it since I had my follow up. I will update again in a couple of weeks with regards to my MRI outcome.
See some of you soon!
Ernie
-
Yay for you, Ernie!! Will be waiting to hear the MRI results.
Debbi
-
Way to go Ernie. I have a hard time with the sunglasses also. Good luck with your MRI.
Anne marie
-
Ernie ~
Thanks for the positive 1-year update! You seem to be doing well and as an AN patient who had a similar post-op experience, I know exactly what you mean about adapting yourself to the SSD and otherwise adjusting to the necessary changes while continuing your life pretty much as before the surgery.
I look forward to seeing you at the Northeast ANA Discussion Forum brunch in Worcester, Massachusetts on April 18th.
Jim
-
Not much to update, but since I did have my MRI yesterday, I figured I'd post anyway. I really liked this imaging place that was recommended by Dr. Bartels. It's called University Diagnostic Institute located near Tampa. Their number one concern was my comfort on the table. The best part was that I got the CD before leaving! I took a look at the images. I didn't see anything "remarkable" so I will assume everything is good. I did not get a report as it will not be ready til Monday. I will be in Washington DC Monday and Tuesday, so perhaps I will learn something on Wednesday.
I'll keep you all posted.
-
The report for my MRI is not in yet, but Dr. Bartels looked at the scans online (technology is great, no?) and here is what he said...
Ernie: I reviewed the images online. There is some linear enhancement of scar but I see no tumor residual or recurrence. This is fairly common and simply means more MRIs are needed than in a totally quiet surgical bed. The formal report was not online yet.
So I am cautiously optimistic, and do not mind having yearly MRI's if that's what's needed.
Ernie
-
Sounds good to me... Great report from the doctor! Congats!
Brian
-
Ernie,
I missed this one, good news! I was about to ask you on FB if you did the yearly scan. Take care
Rick
-
hi ernie i am new and scheduled for surgery with drs danner, bartels and agazzi this thursday 093010 at tgh i have spent the afternoon reading all of your posts and looking at the pictures you have really reassured me and i feel more than confident with this team i was just diagnosed 2 wks ago after a sudden total hearing loss and constant noise my ent ordered an mri and sent me directly to tampa the doctors were extremely thourough and considerate but, i still had misgivings and confusion about what to do now that i have made my decision and found your input i am ready thanks for sharing with us that do not know
nancy from clearwater
-
Hi Nancy!
I don't get over here as often as a should so I'm late getting to this message. I see you had your surgery just 2 days ago! It may be a few days before you read this, but let me know how you are doing!
Ernie