Couple questions before March 17th surgery

[dglennon]

Hello all, this will be my first time posting to this forum.  My doctors have been very helpful in addressing any questions I've had but I figured maybe it was time to get a couple first hand responses.

A little personal info about myself first.  I am 29, male, athletic although not quite in the shape I once was with a 4.5 cm tumor (widest aspect), probably 2-2.5 in its smallest aspect.  Seeing as my hearing in the affected ear is basically kaput, I will be undergoing the translabrynthine surgical approach ... I kind of feel like I'm on a dating board, divulging all relevant physical and personal data

I am not at all sure how dependent experiences are based on age, fitness, etc ... but bearing the above in mind if anyone has any thoughts on the following questions I would love to hear them.

1. At what point in the night or following morning have people tended to wake up and in what state of awareness, ie. were you too hopped up on drugs to maintain any functional awareness?   And then of course at what point (day 2, etc..) did you begin to feel like a semi-conscious human being?

2. I have far more people interested in making hospital visits than I know what to do with.  Will these visitors be bearable or is rest and relaxation, to the exclusion of small talk with concerned friends and family the order of the day?

3. How soon after the surgery, or release from the hospital, were people comfortable walking around the house, preparing a simple meal, maybe even taking a trip outside to get some fresh air (chauffeured of course)?

4. Lastly, and perhaps most importantly, how easy was it, or how long did it take, to comfortably pick up a book and read for an hour or two?

Sorry for such a long post.  I'm feeling kind of boorish in my aggressive questioning but time is ticking and I think my nerves are starting to fray just the tiniest bit.  Thank you so much for any help and of course for everyones previous discourse which has been a fantastic source of information ... a toothbrush and my own pillow .... seriously, I never would have thought of that

Thanks again for any responses.

-Damian

[Jeff]

Hi Damian,

My name is Jeff. I have had 2 AN surgeriesin the past 3 years. I think it is important to note that experiences vary greatly from person to person, but here are my experiences.



1. At what point in the night or following morning have people tended to wake up and in what state of awareness, ie. were you too hopped up on drugs to maintain any functional awareness?   And then of course at what point (day 2, etc..) did you begin to feel like a semi-conscious human being?

I woke up within an hour or two after my surgeries. I remember the nurse checking me periodically, and I remember family coming to visit me during that time. I wanted to sleep much of the time and the drugs helped me do that. After the first surgery, I had nystagmus and really couldn't see straight for a few days. Any movement of my head made me quite nauseated. I was in ICU for 3 days and released after 5. The second time was much easier. I had no balance issues  (balance nerve was already shot). I was in ICU just under 24 hours, up and walking after 24 hrs.,  and released in 36 hours.

2. I have far more people interested in making hospital visits than I know what to do with.  Will these visitors be bearable or is rest and relaxation, to the exclusion of small talk with concerned friends and family the order of the day?

Early on, you won't care who is there. Rest is important to recovery, and too many visitors may be a bother if you feel like you have to stay awake to visit with them. However if friends want to visit with each other in your room, it is fairly easy to check in and out of the conversations by placing your good ear to your pillow I think both rest and company are important, but rest must prevail.

3. How soon after the surgery, or release from the hospital, were people comfortable walking around the house, preparing a simple meal, maybe even taking a trip outside to get some fresh air (chauffeured of course)?

Again, this varied between my 2 surgeries. I was walking comfortably within a week of my first surgery, and even sooner after my second. I drove after 3-4 weeks both times.

4. Lastly, and perhaps most importantly, how easy was it, or how long did it take, to comfortably pick up a book and read for an hour or two?

After my first surgery, it took a couple of weeks to be able to focus that long. The second time was much better, and thankfully so. I ended up going back into the hospital for 6 nights due to a CSF leak. I did a lot of reading then.

I hope I was helpful. Best wishes to you on your upcoming surgery.

Jeff

[Pembo]

I'm 36, female and had surgery last June for a 4 cm AN.  As for waking up I distinctly remember being in the ICU and my husband and brother kissing me right after surgery.  I also have very strong memories of the post-op MRI. As for answering about a conscious being, I was over-medicated so I can't answer that.

I had visitors the first few days. Even being drugged up I liked knowing they were there. I liked having someone hold my hand. They all just talked to me and are surprised how much of their conversations with each other that I remember.


Aso for walking around etc....I was starting to become normal after only a week of being home or so. Just take it slow and you'll know how much you can do. My surgery was in the summer so I spent ALOT of time sitting on the front porch.

As for reading, it was awhile. If you have facial paralysis, like me, it affected my vision at first. I did read, covering my bad eye, but not for very long. It was very tiring. I didn't even watch tv much in the first month or so. Once my vision started to return to near normal it was much easier.   I had no idea facial paralysis can include the eye.

You can ask any questions you need. That's the beauty of our experience.   I think the 3 weeks from diagnosis to surgery were the MOST stressful of my life. Way too many questions.

I recommend the toothbrush and pillow also. Don't forget the deodrant, the nurses were constantly asking me after my baths if I had any?! Also M&M's were a true treat. Those steriods they pump you with make you very hungry. Good luck to you.

Barb

[alisaandree]

Good luck to you with your March 17th surgery. My surgery was Feb 14th and though I have had a rough recovery, which I hope you don't, I thought some of my issues might help you.
I am a very active 42 year old woman with a husband and 2 kids. I work 2 jobs, just graduated from college in December and keep my household without outside help. (just so that you know I am not a whimp) Anyway...
I don't have this site exactly figured out so that I can cut and paste your questions and answer all of them like the last reply did, so I hope I cover everything.
My surgery was 10 hours and I don't exactly remember tons about my 24 hours in intensive care, or if I even spent 24 hours in there. That is pretty foggy. I remember a few things and a few visitors and being sick to my stomach and my visitors ran for the door!
When I got my regular room, I could watch TV though my vision was very bouncy and there was some double vision in the first few days. (I don't know the  name of the approach they used to remove my tumor but my inner ear was removed).
I also had some weird hearing issues. People sounded like they were talking with voice mutators like on Halloween, in the fiirst few days following surgery. This cleared up and was I ever glad!
I was not able to focus and read at all in the hospital, nor for a few weeks after surgery. I have been reading the newspaper here and there during week 3 of my recovery but when I spend lots of time on my computer I get a bad headache. It really strains my eyes, I think.
I went home from the hospital after 5 days and sat on my couch not able to move for 2 1/2 days. I did not know the signs of a CSF leak- no one told me what to look out for but I felt worse and worse and couldn't move- very bad migraine- called the doc and he sent me back to the hospital- yes I had a CSF leak and spent 96 hours with a spinal drain before coming home again.
I was on quite a bit of drugs during both hosptial visits. I don't like medicine in gereral but was going back and fourth between morphine and Tylenol 3's for pain. I didn't want too many visitors. My husband kept most people away, which I appreciated. My sister came twice and I was so sleepy that I asked her to leave both times after just a half an hour. But you will need people to bring you things. My sister brought me a sack of snacks- vegies and dip and stuff. This was a life saver. You can't survive on the hospital feeding schedule nor the food. I was hungry around the clock and had a 3am snack every day. I hear that the sterroids make you that way. Have some food on reserve for yourself. Also it helps if you have nausea which I did.
I did not have a problem getting up and getting myself some food when coming home from the hospital. I was very tired though and slept tons. Someone was here every day for the first week and I was very glad for the help with the kids and I was glad for the company. After my leak, I was scared of more complications and liked having someone here.
I am very, very dizzy- still after 4 weeks. A few AN people have told me that the dizziness takes 3-4 months to subside. This is way longer than I had expected. But getting around my house and taking care of myself and the kids has not been a problem.
I waited 3 1/2 weeks to drive and found driving to be no big deal. The dizziness is there still, but it isn't like I can't judge when to hit the breaks, and I do not swerve or anything. It is actually easier than walking because the car does not tip over!
There were a few other complications I encountered that I did not know what they were and didn't get help for as soon as I could have, had I known.
First, I had terrible reflux which I thought was the medicines making me feel bad. When I got some reflux medicine, that finally went away. Second, I got menillia or some people call it thrush from the antibiotics, which went untreated for some time- boy is thrush awful!
Well, I am 4 weeks post-op tomorrow and am battling serious headaches that are unresponsive to medication. I can drive but do not feel that I can work- due to the headaches. I have had stiff necks too this last week. I have made some gains in some areas but these headaches are getting the best of me. I am hoping when I pass the 4 week mark tomorrow, I will be feeling better and better.
I hope I am not sounding like too much of a downer or a complainer. I tried to expect the worst and be surprised at how much easier than planned my recovery was, but it has not been an easy thing and I hope this will help you in some way.
Again, good luck to you. I am sure you will do much better than me!
Alisa Andree

[steph]

2 suggestions: have someone who is great at telling people no visitors in charge of making the calls etc. just in case your not up to it. I am 31, similar shape, big runner. I could only handle immediate family after my surgery but your out of the hospital so quick have those people sign up for times to come and help you at home. you'll be up on your feet pretty quick but moving very gingerly, most things take a lot of effort, you'll sleep alot. My doctor suggested i start walking asap. I started doing laps around my back yard and moved up from there, make sure you have someone walking with you the first few weeks.
As for reading, I am also an avid reader, get a bunch of Large Print Books, your head will be killing but these make it easier to read and enjoy. It helps kill time. My surgery was 6 months ago, I am starting to feel myself, you'll start getting back into life long before you feel yourself, that takes awhile. Good luck with your surgery, any more questions please don't hesitate to ask. I will say a prayer for you.

[Dave_S121]

Damian, I'm a 51 year old male who had a 2.2cm AN removed by Translab on Oct. 20, 2004.  I consided myself in decent shape.  Even though I had balance issues prior to surgery I would walk 3 miles a day and the week before surgery I was in Sedona AZ hiking in the moutains daily.  I truly believe being in shape helped in my recovery.  I clearly remember the doctor telling me I was going to sleep at 7:30am on the morning of my surgery and waking at 2:30pm that afternoon.  I was pretty sick the first day, probably due to the anaesthesia.  Once I started holding down food my second day I bounced right back.  I was home 3 days after surgery.  I'm divorced and live by myself.  I had a friend from work who was going through a divorce stay with me for 3 weeks post surgery.  He worked every day but was home at night.  I did not have any problems being by myself during the day.  I started walking around my block the Monday after my surgery.  I had my surgery on a Wednesday and the Tuesday after I went out to dinner with a friend from work.  I was driving short distances 8 days post surgery and took the train to downtown Chicago to see my doctor on a post surgery check-up.  I went back to work 1/2 time 4 1/2 weeks after surgery and full time 6 weeks.  I'm a police detective and 8 weeks post surgery I was working 12-16 hour days assisting on a double homicide investigation.  I consider myself very luck in that I had top notch surgeons and my AN wasn't inpacting my facial nerve at all.  I had a very positive attiude going into the surgery knowing that I had researched my options, picked the method I felt was best for me, and was comfortable with my choice and my doctors.  My Drs. were Wiet and Kazen and Ryzenman from Hinsdale Hospital in ILL.  Good luck on Thursday.  For me my AN experience has been a minor bump in the road of life.  I just got my BAHA last week and that has helped the quality of my life. 

Dave Skaja

[kristin]

hi damian!

i have not had my surgery yet either (29, female, left 8 mm AN--april 14th) but i too am a big reader. i was thinking, how about books on tape? my local library has a ton of books for loan, yours might too..and it's kinda like reading, better than watching tv for the eyes and you can usually finish a book in about 4 hours! anyway wishing you the best on thursday.

kristin

[dglennon]

Hello all,
 
I'm a relative novice when it comes to forums of this nature so please forgive me if this reply to your posts is delinquent in any way.  I have been monitoring everyones recommendations and messages to me and I just wanted to collectively thank you all for your time, thoughts and of course your experiences.

I consider myself fortunate to have a rather large support system popping up out of the woodwork, intent on making this process as painless as possible ... if possible.  I have been dealing with this problem, at least peripherally, for quite a while now on my own and I'm almost more concerned that this outpouring of attention and affection will prove more than I can bear.  I foresee exhausting evenings attempting to assuage anyone and everyone around that I do not in fact require yet another sponge bath or assisted trip to the bathroom.  Towards that end I think I will make judicious use of some of your recommendations to minimize my exposure to friends, family and miscellaneous well wishers who might happen in off the street.

Seriously, I can't express enough how much I appreciate everyones reply. I've been filing it all away and making plans accordingly, hopefully appropriate, but certainly more informed than otherwise would have been likely.  The reading will likely take the shape of large-print books or audiotapes, at least until I can comforably move on to the real thing, and I am much more comfortable about the prospect of at least partial funcionality very shortly after the surgery.

It sounds like nausea is pretty likely in the couple days following the surgery but I am holding out hope that maybe I will be able to enjoy some real food during my stay in the hospital.  The procedure is being done at UCSF (in San Francisco) and they have some of the best Dim Sum, not a stones throw from the Hospital so .... I guess I'll see.

Thank you all again, and I guess I will try and pop back on sometime after the successful surgery to let everyone know that it went well.  Would that be the appropriately polite thing to do? ... rememeber this is all new to me

-Damian

[Becky]

"Thank you all again, and I guess I will try and pop back on sometime after the successful surgery to let everyone know that it went well.  Would that be the appropriately polite thing to do?"

Damian, if we don't hear from you after your successful surgery, we would surely miss you.  So please put our minds and hearts to rest and DO let us know 

We wish you the very best !!

Becky

[alwaysanonymous]

good luck in 2 days and i hope this web site has prepared you!

[Pembo]

Good luck to you.  Just a word about hospital food. I was so hungry after surgery from the steriods that the hospital food tasted GOOD! And it seemed like visitors always appeared when I was eating. I had facial paralysis so I'm sure watching me try to inhale my food as I got it all over my face was a pleasant sight for all.

[Dave_S121]

Good luck Damian and by all means let us know how it goes.

Dave Skaja

[iowaboy]

I have my surgery next week and hope yours goes great. I have a positive outlook and a good support group. It helps to talk to others, I know that for a fact.

Keep the faith, and the best of luck to you!

[dglennon]

Hello eveyrone.

I just got back home and am pretty unbeeivebly exhausted, i neve would have imagined I could be this tired but this has definitely been   a low point in the day and I have for definite spells of time been remakably lucid and "energetic" ... and I am out of the hospital which counts for more than I can believe.

I did have an additional question that maybe someone has some experience with.  The morrphine and maybe everything did a real number on my head IN the hospital but now that I got home and got some sleep I had the most horrible nightmareso of suffocation only to wake up beyond exhausted and with an incredibly dry mouth and I was just curious until I get in touch with my ENT whether anyone has experienced or heard of breathing complications after surgery.

Thank you all again I think I am going to go lie down again.

-Damian

P.S despite how crummy I am feeligng right now according to all the surgeons the operation went fantastic and although I basically don't have a functional left side of my face at the moment the nerve is intact and just needs to start re-firing. 

[steph]

Hi Damian, I couldn't believe when I saw your email, that fact that you can fire off an email at this point is beyond impressive. I am so glad your surgery went well and to answer your question, the first night I got home from surgery with the help of medication I had a dream I was trapped under a car tire and was totally squished and unable to breath. My husband called the neuro floor and talked to a nurse and I would suggest you do the same, for me it was a one time incident but I was not a big fan of the pain meds, they do crazy things. Take good care of yourself.