Post Op - Expectations??

[LisaA]

Hi,

I'm having my surgery on 9/26  , and was wondering if anyone could tell me what to expect, in general terms (I know everyone's experience will be different) from when you woke up after surgery, through to the point where you finally started feeling mostly like yourself again?

Any hints and tips would be HUGELY appreciated.

Thanks so much!

~Lisa

[Jim Scott]

Hi, Lisa:

I'll try to be concise.  I have to mention that I had practically no post-op complications, so my experience may not be entirely typical, but I'll offer you what I have. 

When I woke up after my 9-hour AN surgery, I was tired and very thirsty.  I slept a lot and didn't 'come around' until  about 48 hours, post-op.  The head bandage was tight and annoying.  It was removed by the third day of my 5-day hospital stay.  I started eating on the 3rd day as well as sitting in a bedside reclining chair.  I was walking the halls (with my wife's assistance) by the fourth day  By Day 5, I was feeling good (but weak from lying in bed) and ready to go home.  I was discharged by noon that day.  I celebrated with a pancake brunch with my wife and son at a nearby diner.  It was great to be 'out'. 

You have my prayers and good vibes for your upcoming surgery.  Stay positive! 

Jim

[Lamsue23]

Hi Lisa,
     I had my surgery on August 6th, it was 10 hrs.  Right after surgery they brought me for a CT and MRI.  When they finally brought me to my room I spent 2 days with my eyes mostly closed.  They kept offering me (just had a laspe of memory) sorry....but I only took Tylenol because I didn't think I needed anything stronger.  I just had neck pain that gave me a headache.  On the second day the physical therapist made me walk, I must say that I had a little nausea for 2 days.   After 3 1/2 days I was sent home.  I also had a big turban, but had to keep mine for 2 weeks.  Jim, how did you get rid of yours so soon you lucky person. I couldn't wait to take it off and wash my hair.  I'm now 1 1/2 month post-op and I have just started driving a short distance.

     Good Luck Lisa, sending my prayers that all will be well for you too....... 

[NL]

Hi Lisa,

I remember posting a response to this question on an earlier thread. It has about 2 pages of responses where a lot of people shared their post-op experiences. I'm sure you'll get quite a few responses here, too, but since you're just one week pre-op, the extra info from the other thread may also help. Here's the link to it:

http://anausa.org/forum/index.php?topic=7146.0

My post on the other thread was from the perspective of nine days post-op, when my biggest issue was extreme fatigue. I took LOTS of naps during the first 2 weeks. I didn't have balance issues and was able to take short walks through the neighborhood, but overdid it one day and got a severe headache! At 3 weeks I took a short drive around the neighboring streets, but didn't quite feel like myself yet. I would say 4 weeks is when I began to feel more like my pre-surgery self. By week 5, there were time spans during the day when I forgot I had the surgery. (Either I was feeling good or having memory problems!) I'm now on week 6, and though my head's a little numb, I'm definitely feeling like myself again.

Hope this helps. Good luck on your surgery and please keep us updated on how you're doing.

You'll be surrounded in good thoughts from all on 9/26!

Nancy L

[leapyrtwins]

Lisa -

my biggest issues post op were double-vision (lasted 2 to 3 days), nausea (seemed to last forever), and balance.  IMO the first day or two are brutal - sorry, no getting around it - but I found I made improvements daily.   I personally was shocked by the degree that surgery can leave you feeling wiped out - but I'd never had a major surgery prior to my AN surgery.

I didn't have any headaches and didn't require major pain medicine, but I had a stiff neck for a while from the position I was in during 7 1/2 hours of surgery.   

Recovery takes a lot of patience - something I'm not very good at - and the fatigue is phenomenal for a while.  I was amazed how showering (about 10 days post op) could lead to the necessity to take a nap.  I found it totally exhausting 

Everyone's experience is different, so my best advice is just take things as they come.  The important thing is you WILL get through this and you have all of us to lean on for support.

9/26 is a good day for having surgery - Lori's having her 7/12 jump surgery the same day and I'm confident you will both do well.

Best of luck; you'll be in my prayers,

Jan

[LisaA]

Jan,  No headaches is what I'm aiming for!  Fatigue I can handle.   Nausea however...I'm not so good at.  Even if only for a few hours.   I hope saltine crackers and 7-up work as well as they did in college...

Nancy, thanks for the link - I'm still learning how to navigate this site, so I appreciate that.  I'm so excited to hear that you didn't have balance issues.  I thought that that would be unavoidable!  I got the impression that everyone was dealing with balance problems to some degree or another.  Is that different per person?  Also, THANK YOU for mentioning how long it took for you to feel like yourself again.  I'd say 4 weeks is GREAT!  I don't know why, but I was afraid it would take almost a year.  I'm looking forward to the day when I can forget (even if only for an hour or two!) about brain surgery.  I can't wait!!!!! 

Lamsue23, you were released after 3 1/2 days?  That's amazing!  As to driving - what is it that kept you from driving earlier than 1-1/2 months (from what I understand this is actually a little bit earlier than most people, but I never knew what exactly was keeping everyone off the road)?  Was it the dizziness?  Or stiff neck?

Jim, almost no post-op complications??  I want to be just like you (except with Belgian waffles)!

Thank you guys for your replies - they have helped keep me positive and strong during this very weird and scary time.

[MAlegant]

Hi there,
My surgery lasted about 4-5 hours and after that I woke up in the recovery room.  I was not in pain, nor was I nauseated.  I had asked the anesthesiologist in advance about that so he gave me extra meds.  I was in the recovery room for several hours until there was a bed in the ICU.  I had pain eventually but mostly it was my neck that hurt.  The pain was managed quite well by the team at UH.  I had some double-vision but it did go away pretty quickly.  They did not have to cut my vestibular nerve so the only dizziness I felt was just all the drugs.  Had lots of tinnitus (gone now) and my face was numb (still numb!).  I progressed quickly to my own room, sat in a chair then grabbed a walker and walked my first 4 steps.  Also, I tried very hard to eat the bad food (clear liquid diet, ugh).  I continued to walk, drugged as I was, throughout that day and by that afternoon was sent home.  At home I had trouble finding a comfortable position, again because of neck pain, but I used heat wraps and did my neck exercises religiously.  I stopped taking the pain meds during the day and replaced them with Advil, but continued with lots of drugs at night, just so I could sleep.  Continued to walk outside and built my distance very gradually from just to the mailbox and back to around the block and so on.  Now I'm almost back to feeling like myself.  Almost.

I was very lucky that I did not have the complications that some people on this site have had, so please know that it is so hard to predict your own post-op.

I will be thinking about you and wishing you all good things.
Marci

[wendysig]

Lisa,
I was very lucky and did not have a lot of post-op issues.  I did have headaches, neckaches mild dizziness and balance problems.  No nausea, no vertigo.  I was very thirsty and ate a lot of ice chips.   My headwarp was removed on the second day after surgery.  I remember my doctor  saying the reason I was able to have it removed this early is because he also closed the surgical site with titanium mesh which aso puts pressure on the sugical site and felt leaving the headwrap on any longer was not necessary.  It was a relief to have it removed as the pressure was very uncomfortable, but not painful.  I was also sitting in a chair on the second day and walking with assistance on the third day.  After that I was able to walk unassisted but did hold onto the handrails that ran along the walls in the corridor.  The nurses didn't like that too much as they considered me a fall risk but I didn't feel I was and just couldn't stand staying in bed -- walking felt better.  I was also given permisison by my neurotologist to take  a shower and wash my hair two days after surgery -- from what I've heard this is unusual but he said the bandage he used was watertight.   If  you're lucky maybe your doc will allow it too.

Wishing you luck and please know you will be in my thoughts and prayers.

Wendy

[lori67]

Lisa,

As you can see, everyone recovers at his/her own pace, so don't get discouraged if your recovery follows a slightly different path than others.

I didn't have any real pain after surgery, except for that darn bandage, which as Jim mentioned, was really annoying!  I remember I just wanted to sleep a lot the first day post-op.  Day 2 post op, I was up in a chair and taking my first walks with PT.  The first time out of bed and upright was a little scary, but trust the PT's and the nurses, they know what they're doing and after you get that first time over with, it just gets easier.

I had my bandage removed on day 4 post op and was able to wash my hair and take a shower, which I understand is not how it happens for most people.  I guess my doctor just likes clean hair, or he knows that even if he tells me not to wash my hair, come heck or high water, I'm going to find a way to do it!  I went home on the 5th post op day.

I had a good recovery, the only issue I have is the facial paralysis.  Well the right side deafness too, but that was expected.  I felt good all along, but I will say, I didn't start to feel like "myself" until about a year post op.  It took a little while to adjust to the hearing loss for me, as I had no loss prior to the surgery at all.  Just getting used to the little things - the eye drops, the occasional loss of balance...I don't think I felt like me again until I was able to deal with the changes.    But, once again, everyone is different.

I think arming yourself with the knowledge of what could happen post op will help. I wasn't prepared for the facial paralysis ( I think part of that was denial on my part) and I don't think I truly understood what it would be like to have only one good ear.  I'm not suggesting you be pessimistic about your recovery - but I guess, as the saying goes, prepare for the worst and hope for the best.

We will certainly all be hoping for the best for you!
Lori

[leapyrtwins]

Lisa -

I agree with Lori - prepare for the worst and hope for the best.

We are all different and our AN journeys are all different.  You aren't "running any races" post op; so don't feel the need to "compete" with others.  Take things as they come and you'll do fine.

Patience is key - as is finding a new "normal".

Jan

[Cheryl R]

Also don't push yourself too fast just to prove to yourself that there will be a normal life again.     I already tried that with my first surgery and it doesn't work.               It does all improve in time and one adjusts to any changes we may end up with.
                                          Cheryl R

[Pembo]

Lisa, I second everything Jan said. Prepare for the worst and expect the best outcome.

I wound up in the hospital for 8 days and in rehab for 8 days. I learned, the hard way, that I'm sensitive to Oxycontin. Once they stopped giving it to me my recovery sped up nicely but by then I had lost 20 lbs and had been in bed for 8 days straight. Have your family know where they are going to stay, how much time they can take off, and where a good rehab is...just in case. They wanted to send me to a nursing home rehab (I was 35) but my husband knew of a much better rehab at the local hospital.

I too was worried about how I would feel after surgery. I felt tired, off balance and my neck hurt. I learned that extra strength Tylenol is all the pain meds I needed.

I was not prepared for the tinnitus, who knew deafness was so loud?! The double vision, who knew facial paralysis meant the eye too?! And the dry lips, chapstick is my best friend! And M&M's were the best thing I packed. Once I started eating (and steroids make you eat and eat) I was glad to have some real food, M&M's, to snack on in the hospital.

Stay strong and good luck to you and your family as you begin your new normal.......

[cecile k]

Hi Lisa - I just want to wish you well...stay positive :-) I remember thinking on the morning of my surgery (7 years ago now), "Well, at least it's getting done and the end is in sight." I had a very challenging recovery but I found waiting for surgery was even harder, especially emotionally.

I was in hospital for two weeks, but actually gained 8 pounds during that time - ate everything in sight because I was so hungry due to the steriods. Recovery took me a long time but God saw me through.  Just count on lying low and please don't be shy to ask friends/family for help....people want to help and my recovery time was a time of learning to let go of my fierce independence and have others do things for me. I think the fact that I have five boys (then ages 4 to 14) slowed my recovery down as well - hopefully you will have a quiet environment :-) for your recovery!

[cin605]

Asking for help has been a big issue w/ me becouse i have been independant all my life.single mom of 13 yr old boy for 12 years lived w/just my son worked full time & enjoyed everyminute of it-now i have to depend on other people.i am still in the learnig to accept help process.Everyone likes to help its just me not likeing to ask.
I have seen my mom more in the last 3 months than i have in 15 years!

[leapyrtwins]

cin605 -

I can relate to the whole "asking for help" issue.  I, too, am a single parent (to 12 1/2 year old twins), I work full-time, etc.  My children spend 0% of their time with their dad.

My mom literally moved into my house with us for 6+ weeks post op and my sister moved in for almost a week while I was in the hospital post op.  My dad helped out when and where he could. 

Recovery can be a group effort and you as you say, everyone likes to help - but the asking is the hard part.

Cheryl -

I agree with your statement that you shouldn't push yourself too fast post op.  Being the impatient person I am, I tried this and it didn't work too well   

Oh well, live and learn 

Jan