Surgery in 1 week!

[Ancora Imparo Girl]

Hello! Surgery is nigh. After being put into a wait and watch status back in the fall, I got another MRI in February and the AN (which I not so affectionately call CiCi, due to it being shaped like a large candy corn) has grown slightly. Doc wants to remove it. Thankfully it's still small, just under 1cm.

I have my pre-op on Thursday and my last appointment before surgery with my doctors on Monday. Surgery next Wednesday.

I am a ball of emotions. I am excited to get it over with and start moving forward. I am excited because I will also be getting the BAHA at the same time. However, I am quite nervous and worried. I am a single mother to an amazing 6-year-old and I really want to be healthy and AN-free for him. But this is major surgery, so I am scared about a few things.

I am going into the whole process as a very positive person - I am hoping (obviously) for the best outcome and NO complications.

I have some questions from the members who have also had surgery. Some of these questions might seem silly, but I hope someone can answer them.

1. How long was your hospital stay? Doc says mine will be around 3-5 days. This sounds really positive considering I have read accounts of much longer hospital stays.

2. How long were you off work? I know everyone is different, but I would like to get a range of answers. My surgery is on May 4, and my goal is to go back to work on 6/6. Is that unrealistic?

3. What were the hardest things to adjust to after surgery?

4. Did you want visitors? I have friends who will insist on coming to visit in the hospital. I am not sure I want this to happen.

5. Did your lips get chapped? What was your comfort level after surgery due to being flat on a table for many hours? What were your non head symptoms? Sore body, etc.

6. How long was your surgery and how big was your AN?

7. Words of wisdom or advice going into surgery? I want to hear it all.

Thank you in advance and thank you for being my friend through this all.

xo,

Joey Mechelle

[Jim Scott]

Hi, Joey Mechelle ~

I'll try to answer your questions to the best of my ability.

1. How long was your hospital stay? Doc says mine will be around 3-5 days. This sounds really positive considering I have read accounts of much longer hospital stays.

5 days is the average unless some complication arises.  


2. How long were you off work? I know everyone is different, but I would like to get a range of answers. My surgery is on May 4, and my goal is to go back to work on 6/6. Is that unrealistic?

6 weeks is an average.  Some need much longer.  Your ability to perform your job will be the determining factor.
  

3. What were the hardest things to adjust to after surgery?

For me, fatigue, balance issues.  However, each AN patient is unique.  There is no 'normal'.  


4. Did you want visitors? I have friends who will insist on coming to visit in the hospital. I am not sure I want this to happen.

This is a subjective decision.  I asked friends not to visit and they respected my wishes.  Others love the company.  


5. Did your lips get chapped? What was your comfort level after surgery due to being flat on a table for many hours? What were your non head symptoms? Sore body, etc.

No chapped lips.  I was fatigued but had no body issues.  My head was sore at the incision point but not a big problem.


6. How long was your surgery and how big was your AN?

My AN was 4.5 cm.  My surgery was 9½ hours.

 
7. Words of wisdom or advice going into surgery? I want to hear it all.

Have an advocate, if possible.  My wife didn't leave the hospital (she slept in the nurses lounge) until she was sure I was O.K. (48 hours) .  Don't over-pack (you won't need it).  Keep that positive attitude.  It will help you get through this and make recovery easier.


Thank you in advance and thank you for being my friend through this all.

Its our pleasure - and I hope the answers are helpful to you.

Jim

[Ancora Imparo Girl]

Thank you so much, Jim. You've been great! Thank you for being here for everyone!

[Cheryl R]

Joey,    Good luck with your upcoming surgery.    I have been thru 4 due to NF2.       Each time I had varying ways of feeling.     2 of them I was very very sleepy for 2 days, the other 2 I wasn't.      I had the most nausea right at first on no. 1 surgery.    You will have balance issues post op.     This is not dizzy which you may have also and get rid of in your own time.     Off balance is a lightheaded kind of off feeling when walking and esp in my case outside and in big malls and stoes.          I never had much pain.     Your taste may be off for unknown amt of time.          While in the hospital I would ok for part of the day and then like crap some of the day.    A pain pill helped even that some.    I was up and walked on my own very soon in the hospital.   That varies per person.    Depending on the steroids, I had little appetite in the hospital.                I was in the hospital 4 to 6 days.         I was back to work in 2 mos as a nurse and had retired before surgery no 4.      One can be tired for a long time.    So depends on what type of job you have.            If you end up with any dry eye then a heavier liquigel is needed for daytime use and a gel one for night.    just plain tears aren't enough.              Being able to sleep comfortably was always an issue for a good 2 weeks once home.    I would try 2 beds and a chair every night for 2 weeks and several pillows for which would work the best.      The first 2 weeks was always the hardest and then it got better.      You will feel better in time, walk when you feel like it and rest when you don't.    Time helps.     Life will be more normal again!           I wish you well!                Cheryl R                     

[lauralynn]

Hi Joey Mechelle,

Welcome to the AN Family...you have found an awesome and very informative site!  I too came here shortly after I was diagnosed and I'd be lost without my AN family.  I will try to answer your questions as best as I can but keep in mind that my tumor was 4 cm.

1. How long was your hospital stay? Doc says mine will be around 3-5 days. This sounds really positive considering I have read accounts of much longer hospital stays.

I was in the ICU (which is the norm for any AN patient...as far as I know) for 4 days and then was moved to a regular room for 3 days.  I then was transferred to the rehab part of the hospital for another 7 days.

2. How long were you off work? I know everyone is different, but I would like to get a range of answers. My surgery is on May 4, and my goal is to go back to work on 6/6. Is that unrealistic?

I was off of work for 6 months and when I returned I did part time hours because full time was too much.  I am on disability now after working for a little over a year.  I work at a call center and talking all day can be very painful since I have some facial paralysis.  Since your AN is much smaller I would think you could return to work alot sooner than I did.  You may be able to return in June...but you won't be able to make that determination until after your surgery.  As you know, everyone recovers differently so I would totally focus on getting stronger for your little six year old and then determine if you feel you are able to return to work.  Take one day at a time.

3. What were the hardest things to adjust to after surgery?

The hardest thing for me that I had to adjust to was the fatigue and the facial paralysis/pain.  I was a very active person pre surgery but my energy level is still pretty low.  I have struggled with my facial paralysis...always felt like I stuck out like a sore thumb.  But as time goes on...more and more people tell me that I look great and that they can't tell that I had brain surgery!    As far as the pain...it comes and goes and thankfully I have a high pain tolerance so I handle it with a positive attitude.  It's been 2 years since my surgery and I am a different person because of it, but a better person.  I'm actually thankful for my AN because alot of positive things have come from it.

4. Did you want visitors? I have friends who will insist on coming to visit in the hospital. I am not sure I want this to happen.

I did want visitors!  My boyfriend visited me each day I was in ICU.  I have 4 kids...ages 20, 18, 12 and 10.  I told the older two what was really going on but the younger two...I told them that Mommy had something wrong with her ear and the doctor's had to fix it.  I figured if I mentioned brain tumor it would scare them.  I did tell them much later what I really had to have done.  I did not let my kids see me til I was out of ICU and in a regular room and more alert.  Visitors helped...gave me something to look forward to and they always took me on walks.  So I would encourage visitors!  

5. Did your lips get chapped? What was your comfort level after surgery due to being flat on a table for many hours? What were your non head symptoms? Sore body, etc.

My lips did get chapped and actually still do I think because I can't close my mouth all the way.  I use Neosporin Lip Health and it seems to help the best....and I have tried all sorts of chapsticks.  From what I can remember my pain level was probably a 4-6 when I was in ICU.  Mostly the incision bothered me.  The pain medications always helped in a short amount of time.  My non head symptoms were...I had double vision for a few days but it went away on it's own, my balance was very off and I needed to use a walker for a little while, I had some naseausness and felt very fatigued...but brain surgery will do that to ya.

6. How long was your surgery and how big was your AN?

My surgery was 14 hours long and my AN was 4 cm.

7. Words of wisdom or advice going into surgery? I want to hear it all.

Going into surgery...definately go in with a positive attitude.  Remember that 1,000s of people have had this type of surgery done and go on to live their lives.  I would write down any questions you may have now...so you will have them when the doctors come in to see you while you are in the hospital.  I had a friend of mine that set up an account on this forum.  She would call me (since she was out of state) and I would give her updates and then she would post it for me (while i was still in the hospital).  I was thankful that she was able to keep my AN family updated.  Just something to think about.  Bring your cell phone and charger.  Friends and family can text you or leave a voicemail in case you are sleeping.  PM me if you would like my phone number.  I'd be happy to talk with you before your surgery and after.  It's great to be able to talk with someone that can relate to what you are going through.

One thing that I would add is that you need a very strong support system.  Inform your close friends and family of your diagnosis, surgery and recovery.  Have them come to the forum if they have any questions or concerns.  I will be praying for you Joey Mechelle.  Please keep in touch.

God Bless,

Laura Lynn

[CHD63]

Hi Joey Mechelle .....

Well, you are exactly one week ahead of me for my second go-around with surgery for the same AN.  (Very unusual so do not panic.)  My first surgery was retrosigmoid, the next one on May 11th will be translab.  From what I can gather, recovery from retrosigmoid is a little more difficult.  I do not remember which type you are scheduled to have next week.

My answers from my first surgery three years ago:

1.  I was in the hospital six days (first 24 hrs in ICU).
2.  I am a retired school teacher so I did not go back to work.  However, I think I could have gone back about six weeks post-op, with some limitations of duties involving standing for long periods.  Going back to work in a month is on the short side, depending upon what you do.  If you have a sedentary job that is somewhat flexible and you have no complications, you probably can.  I would have Plan B set up in case it does not seem possible.
3.  Like Jim, balance and fatigue were the big issues for me.  No facial involvement or headaches, fortunately!
4.  That is a very personal thing that you may not even know until after surgery.  I found it very tiring because I had double vision and could not focus on anyone while they were talking.  My family being there was very important and I did not feel the need to keep my eyes open when they were there.
5.  Yup, lip balm was a must for me.  I remember having trouble getting comfortable in bed, but no particular aches/pains.  I just do not do well sleeping on my back and finding a comfortable side position was difficult.
6.  Surgery was 5 hours long, AN was 2.6 cm.
7.  Only words ...... and saying them to myself, as well ..... stay as calm as you can before surgery and your recovery will be much smoother.

As a side note, I, too, am having the BAHA abutment put in at the same time this time so I am just a bit uneasy about not being able to roll over on that side for three months.  I usually sleep on my "good" side with my good ear in the pillow ...... sleep much better that way ...... but get stiff if I stay in one position too long.  This will be interesting.  Maybe the hospital staff and/or doctors will have some suggestions.

Best thoughts and many prayers for you for next week.

Clarice

[cherrypiper]

OK by the numbers........

1. 4 days. 2 in ICU, 1 in advanced care, 1 in regular room b4 home

2. i scheduled my AN surgery over my Christmas break of 5 weeks. I am a college prof. it was enough , but the Dr. wanted 6. in reality i was pretty iffy those 1st 3 weeks or so back.

3. i would guess the hardest thing was the total wiped out feeling of this major surgery. Then it would be my facial paralysis issues and eye discomfort due to that.

4. Hospital no. in fact in ICU my direct family could only see me for about 1/2 hour every 4 so even they didn't come after i was settled into ICU. at home, no as well. i couldn't walk down the hall by myself let alone do anything. at Christmas i just kinda sat there. not very mobile. which was 21 days post op for me.

5. worst none surgery hurts i had was the staples in my stomach where they took the fat out to put around the surgery site and the 3 spinal staples. having a few folks look at me really strange and say to my wife "did he have a stroke?" hurt my feelings but actually that's almost exactly what i looked like.

6. 8 hours surgery, An was almost exactly shaped and sized like a big almond along nerves 8 and 7 . they had to scrape quite a bit. thus my facial issues to this day.

7. words of wisdom? a good friend asked me  "Steve is this life threatening surgery?" i said no not yet just major surgery, skull cracking and such. Then DON'T make it life threatening in your mind OK?

[texsooner]

Joey Mechelle,

Here is my experience (mostly good):

1) My hospital stay was 48 hours, including surgery. Surgery started on a Monday morning; spent Monday night in ICU; moved to regular room on Tuesday and sent home Wednesday morning.

2) I was off work for 5 weeks. I think your goal is realistic, but everyone is different.

3) For me, the hardest adjustment was getting used to my head feeling like a basketball for awhile and ability to focus for any length of time was difficult for a few weeks. I also initially had pretty severe dry eye (from facial weakness) and had to constantly keep lubricated with ointment and drops for several weeks before getting much better.

4) I didn't feel like having visitors in hospital, but was ok with it at home.

5) No chapped lips for me. Other than what was mentioned in #3 above, I was very sore on one hip (butt cheek), most likely from positioning in long surgery.

6) My surgery took 11 hours; my AN was 3.5 cm (golf ball size)

7) My advice would be to trust your doctors; get moving as soon as you can once you're out of ICU; having that positive attitude (that you mentioned you have) about recovering and returning to life pre-surgery should serve you well. 

Good luck to you.....let us know how everything goes.

Patrick

[cindyj]

Hi, Joey...in answer to your questions:

1 - 5 days, only one in ICU (remember very little about that day/night in ICU)

2 - I worked part-time at the time and went back at about six weeks, but could have gone back sooner.  Just happened to be around the holidays...

3 - The new level of wooziness/dizziness...subsided substantially within time, though.  SSD was not too difficult for me, even though my hearing was perfect going into surgery.

4 - I definitely did not want visitors!  Fortunately, I was way out in CA, so telling my GA friends not to come visit was not an issue   Once I was home from CA, however, I was fine and ready for visitors!

5 - Chapstick is the number one thing we recommend when folks ask us here what to take to hospital!  I used it non-stop!  No discomfort from surgery table for me...just the nausea from the dizziness.  Had a caffeine-withdrawal headache, but no significant pain otherwise.  Had them stop morphine as soon as I was conscious enough to tell them...was mainly just exhausted!

6 - AN was 1.5cm and surgery was roughly 4.5 hours

7 - As others note, positive attitude is key!  Post surgery - patience is key, along w/ napping and walking and more napping and walking

Best to you!  We'll be cheering you on!

Cindy

[leapyrtwins]

My experience - and keep in mind that everyone's recovery is different. 

1)  my doc said 4-7 days in the hospital.  I was there for 6, but I had extreme nausea and didn't eat (or get up and walk) like I was supposed to and was very weak.  My doc took pity on me and let me stay in the hospital an additional day.

2)  I returned to work half days (desk job) 2 1/2 weeks post op; I returned full days 4 weeks post op.

3)  Hardest thing for me to adjust to was being SSD.  I didn't get my BAHA until 9 months after my AN surgery - the longest, most miserable 9 months of my life.  The full-term pregnancy (with twins) I had 10 years earlier was a piece of cake compared to being SSD for 9 months.

4)  I had visitors - my parents, my sister, and my children (10 y/o @ the time).  They didn't stay long, which was a blessing because I was very tired.  My two cents, if you don't want visitors, politely ask them not to come to the hospital; they should respect your wishes.

5)  I don't recall chapped lips, my biggest problems were double-vision, extreme nausea, and a stiff neck from being positioned strangely during surgery (no other pain, not even in my head). 

6)  My surgery was 7 1/2 hours; my AN was almost 3 cms at the time of my surgery (was 1.5 cms when I was diagnosed approximately 6 weeks earlier).

7)  Best advice; have faith, trust, and confidence in your doctors.  Put yourself into their very capable hands and let go.  Don't stress about possible side-effects, you may not encounter lots of them and it's just a waste of time and effort to worry; deal with things as they come.

Good luck,

Jan

[Rivergirl]

Ancora.....wishing you the best of luck with your surgery and Thank You for asking those questions so much great information as I am right behind you on May 31st.

[Tod]

Joey Michelle, here are my responses. Please keep in mind that my experience was about atypical as one can get.

1. How long was your hospital stay?

--ICU for two weeks. Regular room for one night, then home against the desires of the rehab team - surgical team overruled them.

2. How long were you off work?

--Three months and I needed every bit of that time at home.

3. What were the hardest things to adjust to after surgery?

--Weakness and the shock of learning what happened with the surgery itself.

4. Did you want visitors?

--Yes, but ICU visitors are typically limited to family...though a few people were able to get through.

5. Did your lips get chapped? What was your comfort level after surgery due to being flat on a table for many hours? What were your non head symptoms? Sore body, etc.

--I had plenty of drugs for that. The pain was rarely bad, but I did have some rather severe bed sores and lots of tape wounds. Hematoma was present on right hip, and is still present, albeit smaller, almost 15 months later. I did receive excellent wound care with precious little scarring.

6. How long was your surgery and how big was your AN?

--32 hours surgery, 36 under anesthesia. All consults indicated 14-18 hours, but Bob turned out to be a happy little blood sucker with a good blood supply. Roughly golf-ball sized (see sig).

7. Words of wisdom or advice going into surgery? I want to hear it all.

--Every AN, every patient is different. Try to be calm  and embrace the confusion....not a whole lot else you can do.

-Tod

[kenneth_k]

Joye Michelle.

Hope this helps.

1. How long was your hospital stay? Doc says mine will be around 3-5 days. This sounds really positive considering I have read accounts of much longer hospital stays.

10 days for the original surgery (2008), 7 days for lumbar drain to treat csf leak (2010), 5 days resurgery to fix csf leak (2010), 3 days radical resurgery to fix leak(2011).

2. How long were you off work? I know everyone is different, but I would like to get a range of answers. My surgery is on May 4, and my goal is to go back to work on 6/6. Is that unrealistic?

3 months of, 2 weeks part time from original surgery.

3. What were the hardest things to adjust to after surgery?

Balance first, hearing second.

4. Did you want visitors? I have friends who will insist on coming to visit in the hospital. I am not sure I want this to happen.

Yes, my wife was with me most of the time. Very comforting. I don't remember much from the time in ICU. 4 days later I had friends visit me as well. I liked it.

5. Did your lips get chapped? What was your comfort level after surgery due to being flat on a table for many hours? What were your non head symptoms? Sore body, etc.

No chapped lips. Not really any pain first surgery. 3rd surgery is quite a different story but not relevant right now. Greatest discomfort was nausea from getting the balance upset

6. How long was your surgery and how big was your AN?

6 hours and 1,3 X 1,4 X 1,7 CM


7. Words of wisdom or advice going into surgery? I want to hear it all.

My biggest worry was the anasthesia. I thought I would be paralysed but awake. I was wrong. They know what they are doing. Simply trust the medical team

Good luck, Kenneth

[james e]

You will be well on the way to recovery before you know it!

I was in the hospital 3 days. They want to make sure you do not have any follow up problems before you go home, that you are eating, and you can walk.

I had a stroke, then a heart surgery, then AN surgery, in a 12 month period. I am now disabled, and no longer able to work. It is a combination  of the problems. After the stroke and heart surgery, I went back to work, but after the AN surgery, I applied for disability. Without the first two problems, I probably would have just retired. I worked on ladders, and I cannot be on a ladder any more. Other than all my problems, I am in excellent health, work out every day, and expect to live a long long life.

I am still a little bit wonky, but it is not a problem. I have a BAHA, and it is very helpful. My hearing in my good ear is not great, but it is what I have, so I am happy to have what I have. The loss of stereo hearing is my biggest complaint...I have no idea where the origin of sounds come from. Where is the phone that is ringing...where is that singing bird, where are grandkids when they call out to me. You will have to train your 6 year old to tell you where he is when he yells out "hey Mom!."

I did not want visitors to stay too long. My wife and daughter brought in Starbucks, gave me a kiss, and left to go shopping. I was tired, not worn out, but I did not want people sitting around me expecting to have a conversation with me. They were happy to go shopping, and I got good coffee.

There was no pain following the surgery. I was terribly constipated for several days, so be ready for that. I also had bad dreams for about 5 days, and was told it could be related  to the surgical drugs. I was dreaming I was caught in a sinking ship that rolled over, no lights, could not find my way out, and I thought I was going to drown...woke me up every night...horrible experience.

My surgery was 10 hours. To me, it felt like 2 seconds. My wife kissed me, and 2 seconds later, I woke up in ICU throwing up. I knew I would be vomiting, so I used that opportunity to discover if my face still worked by aiming the vomit into a LARGE tub they had put around my neck. Right then, I knew my mouth was working...ya hoo!

My wisdom to you...you are going to be different following the surgery. Most of use here have some type of disability...tinnitus, SSD, memory problems, wonkyness, etc following the surgery. My experience here and listening to other posters here, you will live a happy and long life. I am very happy with my life. I am SSD with a BAHA, have a little wonkyness, tinnitus and I am a happy camper. You attitude is the key to your future.

Best of luck to you. Get back on line as soon as you can, and let us know how you are doing.

[Kaybo]

My surgery was so long ago and so NOT the typical that I am not going to answer each, individual question but here is my weigh in on a few things:

CHAPSTICK, CHAPSTICK, CHAPSTICK - it'll be your best friend!!

On the visitor thing:  Unfortunately, I have had several surgeries...I am a a VERY social person and really LIKE visitors, HOWEVER, my main concern is how the OTHER person is going to feel.  One time, I was very sick from the anesthesia and I felt bad for the visitors because I kept getting sick!  Needless to say, they didn't stay long!    I will NEVER forget a friend that came to visit me while I was still in ICU for the AN surgery.  Everyone had gone to lunch but my daddy (which probably didn't help), and my good friend - who I taught with - was in Houston for a wedding so she came to see me.  I will never forget the look on her face or her discomfort - I just think she wasn't prepared for her 25 year old, YOUNG friend (the same age as her) to look like I did.  You have to remember that I had had a stroke too (NOT COMMON - NEVER FEAR!) so I was in pretty bad shape and had been the picture of health the last time she saw me...which was just days before because she was the one who went shopping with me when I INSISTED on getting everyone a Christmas present before I had surgery.  Anyway, that is just me...

K