Questions from The Boss - Stoneaxe's better half...

[The Boss]

Hi - I'm new here I usually don't go on forums or blogs.. so please accept my apologies ahead of time.. if I don't do this correctly.  As you know Stoneaxe has the AN and he is going in for surgery.  Just the word surgery freaks me out..I am frightened and I have a list of questions for the doctors.  When I mentioned I had ?? of the doc's Stoneaxe told me to ask you guys so here goes....

1. How long is the typical length of stay in intensive care unit, then in the hospital?
2. Post op care at home, should I ask for a visiting nurse, will he go to a rehab place before he comes home?
3. Do you think it is too bold of me to ask the docs, what their success rate is and how many of these operations have they done? (he is seeing McKenna MEEI and Barker MGH).
4. What are common ailments should I look for when he is home that would be of concern?
5. Side effects, they mentioned a thing called a CSF (?) leak!!! How would I know what to look for?
6. How long does this surgery take?
7. Will he need any special medical equipment, wheelchair, or something to prop him up at night when sleeping?
8. Do I have to wake him up through the night or if he falls asleep during the day?
9. Should he be left alone at home, if I need to run to CVS for a prescription should I leave him alone?
10. I can take time off from work, that's not a problem, I just thought someone out there might know how much time I should ask for off.
11. Wound care: will he have drains...should I have a nurse do whatever needs to be done?
12. How long is the surgery... it's a translab procedure...

I think I should probably end here, as I've taken up too much of your time already.  If you have the time I would really appreciate hearing back from you...... thanks The Boss  

[Mary 117]

Hi Boss. Those are all really good questions. The hard part is that everyone handles surgery/recovery differently. I was in ICU for 24 hours, out of the hospital after 3 days and taking the bus to see the La Brea tar pits 7 days after surgery. My sister stayed with me for 2 weeks but I did fine. I know many people are pretty wobbly after the surgery. Usually once you get home, you are doing pretty good and not needing constant care.

There are a lot of medications to keep straight after surgery, so having someone keeping those organized and on schedule is nice.

It is never "too bold" to ask how many times a physician has performed this type of surgery and what type of complications occur. From all I have read, you absolutely want to get someone who has done this procedure many times.

I'm sure many people will post great responses. Hang in there!

[tenai98]

HI Boss
I wasnt in ICU but here in Canada for the first 24 hrs I was in PACU (post anesthetic care unit) then I was moved to the NOA (neuro observation area) for 48 hrs then in a neuro ward. Each one of us is different in our recovery. CFS leaks are somewhat rare nowadays, but one knows when there is al leak. I was in the hospital for 8 days, but some are shorter like our very own Ernie and some longer. I havent read that any of us had to have a visiting nurse but others can fill you in on that. I didnt need any special equipment. Some do..Like a bath chair or a walker. Therapy is up to the doc. I asked mine why NO therapy was issued for me and he said I didnt need any cuz I didnt have facial paralysis and my opposite side already compensated for the loss of balance on AN side. My surgery was 7 hrs long. Some are shorter and some longer. As for the wounds,( 2 if a fat graft is done), there is really no special care. Once my bandaid was off...I was to let it be. Altho my ENT told me to put on a little polysporin. Each doc has there own preference. After two weeks I was able to be left alone. Again some sooner some longer. I am five weeks post op and am back to almost what was normal before surgery. I"m slower at some stuff and I tire easily, but doc said another couple of months for the brain to adjust. Please keep us posted on his surgery and progress once home
Jo

[NancyMc]

1. 24 hours in neuro ICU, 2 to 3 additional days on the neuro floor
2. No and no.  I was actually taking care of (cooking and cleaning and doing laundry) my family who visited the day after I came home and of my caregiver who was there just in case I needed a ride somewhere or help in any other way.  I did not.  He left on the day that I had my stitches out, 12 days post-op.  I drove the last half hour home from the stitch removal appointment.
3. You DO NOT need to ask Barker and McKenna anything.  They have a stellar record and have performed this surgery too many times to count.
4. My biggest concern was washing my hair and sponge bathing without getting my incision sites wet.  I was very nervous about having any direct contact of any kind of object with the incisions.
5. With translab, Dr. McKenna closes the eustachian tubes, so the only leak would be out of the incision.  Just look at the incision daily to see if it is wet.  I did not have a leak, so someone who did could tell you what to watch for.
6. My surgery was 9 hours, but I believe Bob mentioned that Dr. McKenna said it would take a little longer with a radiated tumor.
7. I "slept" on two large pillows (on my back).  I had a walker and cane on loan from my mom but did not need them.
8. You may have to wake him for his steroid dose at 2 am.  If he's on steroids like I was, he won't sleep for two weeks, hence, the quotation marks around the "slept" in item 7.
9. No, don't leave him alone.  Find someone to run errands for you.
10. Two weeks.
11. No.
12. See 6.

Bob has an amazing team.  Be in the ICU and on the floor with him to get the nurses to respond.  That was my only problem.  Get him on his feet and out of the hospital as soon as possible.  I didn't think I should sit up or walk initially and was very nervous, but then when I tried, it was easy, and I wished I had done it sooner.  Don't hesitate to ask if he can go home as soon as he feels ready.  Be sure to get the discharge instructions.  I didn't get them until I asked for the operative report a few weeks later.
Ask anything you like.
Nancy

[Migoi]

Hi Boss,

   First, there is no way to take up too much of anyone's time on here...we arrive when we want, leave when we want... if we're taking time on the forum, it's because we want to be here. So ask as many questions as you want.

   The problem is...a lot of stuff varies depending on what might seem like minor details. My suggestion is to go to the doctor and ask (sorry StoneAxe). They will be able to answer based on the details of his particular tumor and their particular protocols.

    My feeling...if someone is about the poke around inside the head of someone you care about...there is absolutely no such thing as a question that is too bold. If the doctor takes offense, find a different doctor. This ranks right up there with rocket science...

   But to answer your question based on my experiences... your mileage may vary...

1. How long is the typical length of stay in intensive care unit, then in the hospital?
      Grand opening and walking tour of my head on Tuesday ...napping on my couch on Saturday. One night in ICU, two in a step down ward (like ICU-lite), one night on regular ward.
2. Post op care at home, should I ask for a visiting nurse, will he go to a rehab place before he comes home?
      Didn't need any specialized care... being feed and watered regularly was the biggest tasks, I had post op loss of facial function and did need some help putting the cream into my eye before taping it shut at night. This was mostly due to me have issues with eye stuff.. I get queasy watching someone put in contacts.. but can eat lunch while watching abdominal surgery on the Discovery channel... go figure.
3. Do you think it is too bold of me to ask the docs, what their success rate is and how many of these operations have they done? (he is seeing McKenna MEEI and Barker MGH).
     As iterated above...if they get offended, get someone else.. http://www.anausa.org/questions_for_physicians.html pertains.
4. What are common ailments should I look for when he is home that would be of concern?
     Ask in pre-op meeting, ask again when they discuss sending him home post op.
5. Side effects, they mentioned a thing called a CSF (?) leak!!! How would I know what to look for?
    Ask just before they send him home.. when they start talking discharge, whip out your notebook where you have all these written down so you don't miss any.
6. How long does this surgery take?
     Mine was a middle fossa approach and took about 9.5 hours... if you take something to read, take something that doesn't require long periods of concentration, you will be a bit distracted according to my wife.
7. Will he need any special medical equipment, wheelchair, or something to prop him up at night when sleeping?
    I used a walker for the first few days at home due to balance issues, skipped the cane phase and went right to my most excellent imitation of a tipsy pirate (eye patch to keep temporarily non-closing eye from drying out so much), couldn't find a stuffed parrot to complete the look though- the medical supply house thought the request was odd, which I found a bit odd.
8. Do I have to wake him up through the night or if he falls asleep during the day?
    I suppose you could wake him up in the middle of the night if you like cranky StoneAxe (the nurses in the hospital will more than fill the quota of middle of the night, middle of the great dream sleep interruptions, by the time he leaves there shouldn't be any reason for you to wake him up...again, ask leading up to discharge.
9. Should he be left alone at home, if I need to run to CVS for a prescription should I leave him alone?
   Ask at discharge, there wasn't any reason I couldn't be left alone post op.
10. I can take time off from work, that's not a problem, I just thought someone out there might know how much time I should ask for off.
   As my request, my wife took very minimal time off. Post op patients are very boring, we sleep and rest alot.
11. Wound care: will he have drains...should I have a nurse do whatever needs to be done?
    There wasn't any special wound care, no drains, etc in my case... ask at discharge.
12. How long is the surgery... it's a translab procedure...
     As noted above, mine was a different approach...middle fossa, 9.5 hours

  Again, it might be that none of the answer above will apply in StoneAxe's case...it's very individual. Also, please visit the "Caregivers" section of the forum, folks there have walked in your shoes.

   If you have more questions, ask away or just stop by to chat, vent, worry, and commiserate... we actually do understand.

   ..take care.. tim b

  

[Cheryl R]

It is a scary time  before surgery as  one will wonder how it is afterwards.              It can vary how a person feels post op.     There might be some nausea for a day or so.     There may be some dizziness or maybe not.    I never had any.      Due to his history of the balance, he may not have any big problems with it.       There may no dizziness but the funny feeling in the head we call wonky head here.   There may be a bad taste or poor appetite.     Since Nancy was on steroids, he may be also.    Each dr has their own protocols of that.      Mine was to only get it while in the hospital unless having some kind of problem.             Same with care of the incision.     There willl be no drains.                I was home alone every day other than the day I came home.    My husband was home at night.                        There are headaches for some,but not others.       There can be neck pain just from how we lay during surgery and may even last for a time.                            I was bothered more with balance while outside and in large places like malls.                          If one does end up with some facial paralysis,it is usually temporary in most cases but not all unless the nerve was severed.    Eye care is important if one does have paralysis.         Many do not end with any paralysis.             Some of the long term problems can be due to the tumor size and location.                
        Ask us any questions you have but try not to get too scared about the what ifs.    Many of us have been thru this and we know what it feels like ahead of time and also after,                               Cheryl R

[Kate B]

Hi there,

Here is a post about my surgery experience. 

I think the *term* brain surgery can be frightening. It doesn't have to be.
I must admit that when reading the posts in the old format called a guestbook and on the
listserv, people were extremely satisfied with House. I believe that if you
go to an institution like House for surgery, you will get the best possible
outcome.

I had Middle Fossa Surgery for a 1.5 cm right sided AN on November 29, 2001 with Dr.
Brackmann and Dr. Hitselberger.  The staff there is very professional and
used to handling acoustic patients. As a matter of fact, House takes up the
whole sixth floor of St. Vincent's Hospital.

My surgery was 4-41/2 hours. You complete several tests the day before
surgery  including a hearing test, a meeting with the surgeons, bloodwork
etc..

The day of surgery is interesting.  They typically start the operations in
the late morning/early afternoon. You check into the hospital about 9 am and
you go to the sixth floor and wait in a private hospital room until surgery.
When it is time, you are wheeled down a corridor toward surgery. It seems
funny to remember this, but I remember the sunlight streaming in through all
of the windows. Then you are taken  to a room where you meet with the
anesthesiologist.  The doctor confirms the correct side of the AN and marks
your ear.  I remember the anesthesiologist asking me what I was most afraid
of prior to surgery.  I remember answering her and her reassuring me.  Then
I was out and before you know it they are waking you up and asking you to
wrinkle your nose and smile. These are actually informal observations that
they use to determine your facial nerve outcome.

You are kept in ICU 24 hours and then discharged to your own room. All of
the rooms are individual (private) by design. The first 24 hours were the
hardest for me because I was dizzy.  But before you know it, you are
returning to the sixth floor.    My surgery was Thursday, I was in ICU until
Friday night and discharged to Seton Hall on Monday. (Seton Hall is adjacent
to the hospital and is a facility where you recover). It is like a Holiday
Inn and the charge is a nominal $35.00 per night (2001) making the stay affordable.

By the following week,  I went to a restaurant in Hancock Park
and the waiter was in disbelief to learn that I had brain surgery the week
before. I must admit, I was tired afterward and that trip tired me out...I
set goals and stuck to them. I  just worked to get better.  I was 45 when
diagnosed and 46 when I had the surgery. I was *determined* to get back into
my routine ASAP without overdoing my recovery. I followed the doctor's
orders during my 5 week recovery time before my return to work.

The doctors  want you to stay in CA for two weeks.  I ran a low grade fever
for a few days about 5 days afterward.  Dr. Stephen (the internist that you
see out there) was not worried because of the low gradedness of it and no
headache associated with it. Fatigue was the biggest culprit the first few
weeks. I took daily naps. My facial nerve was preserved, my eye closed all
the way and I retained much hearing. (note: I had 100% hearing prior to the
surgery in that ear.  Now I have 50% low frequencies and ~80% high
frequencies and 84% word discrimination.)  My one eye did not tear for about three months.
Each day I grew stronger.  The
first day in my hospital room, I made a goal to walk around the floor once
per hour. The next day my goal was three times per hour.

I stayed at Seton Hall the
entire two weeks.  Some chose to move into a hotel after surgery.

The most important thing no matter which treatment you choose is to look at
the physicians and their experience.  On the listserv, people generally say
that the doctor should have more than 100 treatments under his/her belt.
Check out their statistics relative to patient outcomes for your specific type of treatment. 

Kindest Regards,
Kate

[saralynn143]

Hi, I had a procedure for a completely different condition, but I just want to say that if you have a question for the doctors, ask it. There is no such thing as a stupid question, and knowing as much as possible beforehand will decrease your stress level significantly.

Remember, you are paying the doctors, that makes YOU the boss, and THEM the employees.

Sara

[leapyrtwins]

Questions are good; as others have said, the answers vary from patient to patient.  We are all fairly unique in our surgical and recovery experiences.

Here are my answers, for what they're worth.

1. The hospital I was at didn't actually have me in ICU.  I was in a small, private hospital and my room was basically termed ICU for the 1st 24 hours or so.  Then the status was downgraded.

2. IMO a visiting nurse is not necessary.  Bob won't be able to do some things post op, but if you, another family member, or friend is there he won't need anyone else.  Definitely not a medical person of any type.  He won't be released from the hospital if his medical "issues" are something that can't be handled at home.  I never went to rehab post op, I think a fairly small number do.

3. It is not too bold of you to ask the docs these questions.  I'm sure they're actually very used to questions like these.

4. I'd say the biggest thing to be on the look out for is a CSF (cerebral spinal fluid) leak.  Usually characterized by clear fluid coming from the incision or even through the nose.

5. CSFs are a possible side-effect, but they don't happen to everyone.  The docs will tell you what to look for.  Don't be scared about the possibility - as I just mentioned, they don't happen to everyone. 

6. Length of surgery depends on location and size of the tumor, plus how "sticky" it is.  My AN was 2.5+ cm and my surgery was 7 1/2 hours.

7. No special medical equipment is required.  Some have used walkers or canes post op.  Another good thing to have, I hear, is a bench for the shower.

8. No.  In fact, his sleep schedule will be all goofed up for a while.  AN surgery tends to leave patients very fatigued.

9.  IMO he can definitely be left alone if you need to make a short trip to the store, etc.  and probably for a little longer than that.  A lot will depend on how he's feeling once he gets home from the hospital.

10. I'd try and take off for the first week to ten days after Bob's surgery.  A lot will depend on his recovery and the side-effects he encounters, but nothing really requires that someone is with him 24/7 for any long period of time post op.

11. I never had drains; don't think most do.  No nurse needed.

12.  I had retrosigmoid, not translab, but I don't think the approach is as relevant as the location and size of the tumor and the stickiness.

BTW, love your user name   

Jan

[sgerrard]

Hi Mrs. Stoneaxe,

Welcome to the forum. You might like to read what Rich and Chris had to say about being the spouse of an AN surgery patient:

http://anausa.org/forum/index.php?topic=9259.0

Bob seems like a sturdy guy, and he has a pretty small AN. I think he will do fine, and recover well after those first three days.

Might be an idea to hide the paddleboards from him for a few weeks, though. 

Steve

[EJTampa]

Hi Boss!  These answers are from my own experiences...
 
1. How long is the typical length of stay in intensive care unit, then in the hospital?
    I was told that typical is 3 to 5 days.  As Jo mentioned, mine was much shorter.  I had surgery on Thursday and went home Friday evening .

2. Post op care at home, should I ask for a visiting nurse, will he go to a rehab place before he comes home?
    I asked my wife if I could have a visiting nurse, but she said only if she gets to pick him/her out .  It is unlikely he will need one though .

3. Do you think it is too bold of me to ask the docs, what their success rate is and how many of these operations have they done? (he is seeing McKenna MEEI and Barker MGH).
   As was mentioned, they are great doctors.  But you should NEVER be afraid to ask the questions!

4. What are common ailments should I look for when he is home that would be of concern?
    I see swelling hasn't been mentioned, although you can't "see" it.  I started having pain that the meds weren't taking care of (around day 3 maybe?).  It turned out to be swelling and the doctors had me start my steroids.  That did the trick.

5. Side effects, they mentioned a thing called a CSF (?) leak!!! How would I know what to look for?
    Clear liquid from the nose, ear, or incision site.  Very watery, not sticky or slimey (like boogers )  Can I say boogers here?

6. How long does this surgery take?
    Mine was short, about 4 hours.  Most seem to be in the 6 to 12 hour range.

7. Will he need any special medical equipment, wheelchair, or something to prop him up at night when sleeping?
    My doctor had me sleep at a 30 degree incline for a couple of weeks.  That was tough for me.  I used a couch cushion to get the right angle.  I didn't need a cane, but it wouldn't hurt to have one just in case.

8. Do I have to wake him up through the night or if he falls asleep during the day?
    No.  Let him get his rest.  If he's in a lot of pain (I was not most of the time) try to stay ahead on the pain meds.

9. Should he be left alone at home, if I need to run to CVS for a prescription should I leave him alone?
    I don't think there is much of anything bad that can happen in a short period of time.  I would say he'd be fine on his own for a few hours at a time.  I was up and around from day 2, so I could have been alone even the first week.

10. I can take time off from work, that's not a problem, I just thought someone out there might know how much time I should ask for off.
      I would take 2 weeks so you can get him through the removal of the stitches.  Other than that, he should be fine.

11. Wound care: will he have drains...should I have a nurse do whatever needs to be done?
      We were told to leave the bandage on through the third day (Sunday).  The bandage came off cleanly and easily.  No drains, no special care.

12. How long is the surgery... it's a translab procedure...
      Mine was a 4 hour retrosigmoid surgery.
 
It's great that you have joined us on this forum! At first when I saw the user name of "The Boss", I thought a certain singer from New Jersey had been diagnosed with an Acoustic Neuroma! .
 
Ernie

[suboo73]

There is no such thing as a stupid question, and knowing as much as possible beforehand will decrease your stress level significantly.
Remember, you are paying the doctors, that makes YOU the boss, and THEM the employees. Sara

Hi Boss!  Welcome to the Forum!
I have no answers for you regarding surgery as i am still in W & W mode myself.
So ask questions - you already know what a fantastic group this is, wonderful people, lots of experience!
I agree with Sara, that you ARE the boss - and it sounds like Bob will have some of the best.

My thoughts and prayers are with you and Bob as you go thru this surgery.
Keep in touch and please post updates.
Sincerely,
Sue

[ppearl214]

Hi "the Boss"

Having the true honor of meeting you and that StoneAxe of your's, I just wanted to say hi and hope you are hanging in there. I know things have moved quickly for Bob since the Worcester brunch, so just wanted to let you know I am thinking of you both

Phyl

[stoneaxe]

She is the boss too...

Thanks everyone. This bump in the road will be behind us before we know it.

[ppearl214]

She is the boss too...

My bloke says the same...

*looks over shoulder for flying rolled-up ball o' dirty socks.......*

... well, sometimes, that is....

Will be looking for the updates Bob and da Boss.. and hang tough!

Phyl