Newbie here

[tbaxter1]

hi. my name is tracy and im having brain surgery oct.18th.I'm scared 2 death.how much pain am i going 2 be in afterward?how long will it take 2 recover?How bad is it really?
please be honest!

[Jim Scott]

Hi, Tracy ~

Your fears are natural - this is a complicated surgery - but thousands have gone through it and most do O.K. 

I'll try to answer your questions;  Post-surgical pain usually isn't too bad.  A headache is very common but that usually passes.  Nausea (from the anesthetic)  is also common, but not everyone experiences that.  I didn't.  I found that the large head-bandage was quite uncomfortable (hot!) but the doctor removed it within 72 hours, post-op.  The hospital stay, barring any complications, is usually five days, although a few AN patients that post here were released sooner (2 - 3 days) but I would figure on a 5-day hospital stay. Your total recovery should be around six weeks but, again, some AN surgery patients are recovered sooner and some need much longer. Total recovery can take months but that doesn't mean that you can't return to a job or resume your normal activities, just that you may not feel quite like 'yourself' for some time, even though you'll be 'officially' recovered.  Fatigue is generally a long-lasting reminder of AN surgery but even that improves over time. 

In brief, AN surgery is a bit daunting but not 'the end of the world'.  Try not to allow your fear to control you and know that many, many people have gone through what you're going through and come out just fine.  I did.  We'll be here to support you, Tracy, and I hope you'll be a frequent visitor to these forms where the folks who post understand what you're going through right now as your surgery date approaches.

Jim

[leapyrtwins]

Honestly, I had no pain post op except for a stiff neck.  I thought I'd have lots of pain in my head, but I never did.

Everyone's recovery is different, and the first 2 or 3 days after surgery are usually the toughest.  But I found that each day I got a little bit better.  Some days were one step forward and two steps back, but my surgery was a little over 4 years ago and I'd do it all again if I had to. 

Hang in there, you'll get through this.

Jan

[Syl]

Hi Tracy,

I stopped taking pain med on day 2 in ICU. I don't remember having any pain on the surgery site. In fact, I think it was numb until the staples were removed, and that didn't hurt either. My ear hurt more because it eas folded & got smashed by the head dressing. That was very tight & uncomfortable. I did have a very sore neck. It was very hard to move without the help of the nurses because of my sore neck. But these are some of the issues I consider minor.

My biggest issue is that I suffer from post-surgical headaches which seem to be most common with folks who have the retrosig procedure, but not everyone gets them.

I had my surgery over 3 years ago & continue to see improvement in many areas. Headaches not so bad anymore & I don't get them as often. However, they are still chronic.

Our recovery is a very long one. Though I returned to work 2 months after surgery, I didn't feel ready, but I was glad that I did. It forced me to push myself to get stuff done though I wasn't feeling like myself for a very long time.

There are many issues that are part of the AN experience other than pain, but you'll get through this.

Syl

[JAndrews]

Hi there! Can you give some more details? Do you know the approach the surgeon is using? Where are you going to have it done? I had no pain by the time I was heading home on the plane. Only mild pain by day 5.

[CHD63]

Hi Tracy and welcome to this forum .....

Pain and/or the perception of pain is always a very individual thing.  It always amuses me when the medical staff comes in and says "on a scale of 1 to 10 how bad is your pain."  I have no idea how they can tell much of anything by the answers I give.  (I know ..... they have the little charts describing it, etc.)

I was very uncomfortable the first 24 hours post-op, but not sure I would classify it "pain."  Lots of other stuff going on.  The good thing is, most facilities will do whatever they can to alleviate your pain, should it be troublesome.  They do not want you to be in pain or nauseated.  Sometimes it takes trying different things to bring you relief, but they will do whatever they can and usually very quickly.  You will be somewhat sedated during those first post-op hours so you will not remember much about that part.

The more relaxed you are the less pain you will have so try your best to relax your muscles ..... this is good to do before surgery, as well.

Many thoughts and prayers.

Clarice

[Brewers7]

The good news - For me the pain was minimal.  The tough part (for me) was the nausea.  Many are back at work in a few weeks.  God bless you.
Susan

[tbaxter1]

     thanx 4 the replies.im having my surgery at baptist hosp in jax,fl.Ur stories have helped.I really like my doctors and they have GREAT crudentials.My fear is i have crohns disease and lupus and dont heal well at all.I have a colostomy that i got at 22 and that was hell 2 recover from due 2 infections.I spent 3 mths in the hospital with that go round as well as many other surgeries and hospital stays.I wonder if my daughter even knew me the first year.So anyway u can c why im concerned. I put my life in gods hands now.And whats with this plug they half 2 take out of my stomach 2 pack my head(weird).My stomach is so scared up i wonder where thell even get the plug from!thanx 2 all 4 ur support!It really helps.ttysoon(i hope). tracy 38 yrs old in lake city ,fl.     

[Seamar]

My heart goes out to you, Tracy.  You have put your trust in the proper hands.  Please know that my prayers are with you.

[Cheryl R]

Tracy, I am sure you are nervous over more surgery.      I do not think that AN surgery should set off the crohns but can't say if would the lupus or not,             The fat taken from the abdomen is a small amt of fat to help plug the areas in the head at the site of tumor removal.     My dr only does it with translab and haven't heard of any that have had retro sig at Univ of Iowa.  He doesn't use it for mid fossa.       It would taken from the other side of the lower abdomen from your colostomy so won't bother it at all and is not a deep removal or involve what colon you may have.                        You will be on steroids in the hospital and possibly when go home orally if that is your surgeons regular protocol.     So that might help the lupus if have a problem.   
                I wish you well with your surgery.        Cheryl R

[tbaxter1]

the problem is i had a colostomy on rt side then got ganegreen and had 2 have my rectum taken out permentally and my whole colon removed and it was moved 2 the lt side.Oh well with my familys support and god i know ill get through this.thanx 2 all.

[moe]

Tracy,
I'm so sorry you have to be diagnosed with an AN, in addition to your other health problems. It doesn't seem fair, that's for sure.
But the doctors know what they are doing, and you should have complete faith in their expertise.
You go to sleep, wake up with a turban on your head, and maybe headache/nausea. Everyone is different.
Expect some balance/dizziness issues also. The first three days are no fun, but just try to sleep through what you can! Some are up walking right away.
Recovery varies from person to person, but the most important thing to do is walk and keep doing that every day with lots of rests/naps in between.
It is a total different type of surgery and recovery, but you will get through this,you'll see.
Stay busy and as focused as you can on other things, and it will be here before you know it. Any other questions, ask away.
Maureen

[james e]

I never had any pain at all except for the turban bandage that was tied around my head. It was so tight that the knot that was tied in it left a small cut in my forehead. The doctor would not loosen it. It was removed after two days. As soon as I woke up in recovery, I vomited a lot, but the nurses were prepared for that to happen, and had a small basin to catch it. I ate a full breakfast the morning after the surgery, and a physical therapist took me for a walk right after my breakfast. I was allowed to walk by myself after that, and I set goals for distance, and made lots of trips up and down the hall. My sleep schedule was normal, my appetite was good, and I watched a lot of TV. I was happy NOT to have visitors just so I could set my own pace. I told my wife and daughter to go shopping, and just stop by for just a few moments a couple of times a day. I spent 3 days in the hospital following surgery, and was happy to go home. I started physical therapy right after the surgery and that helped with my balance. I am a year and 5 months post surgery and still have wonky days, but that is just the new me and it does not bother me. I was 60 and retired following the surgery. Overall, it has not been a bad experience. If I had to do it all over again, I would be much more relaxed that the first time. I know that you will do well, so just relax and recover.

James

[tbaxter1]

thanx 2 all who replied.it really means alot.just so u all know i can spell and write correctly im just being lazy with it.i feel like im txting just keeping it short.anyway,i went 2 my pre-op 2day and im feeling alot more calm.my mom,husband,and daughter(in spirit)were all there.that helped alot.he says ill b in icu 4 probley 2 days.thats good 2 kno.so my support system is great.ttysoon,     tracy

[schmidtkat]

Hi Tracy,
You've had lots of great feedback already, but I wanted to add a couple thoughts. Several have commented how tight and uncomfortable the bandage was for them. I have to say mine was not. It actually was loose enough it started sliding up before they removed it. There was enough gauze or padding on my ear that the wrap actually felt like a comfort. I was more scared of them removing it and then me maybe bumping it in bed.
The surgical site was actually less painful for me than some of the aches I had from positioning during the surgery. My left shoulder and lower back caused me more pain than my head. As Clarice mentioned, the medical staff was really good about finding was to alleviate those aches and pains.
They physical therapist was excellent. Getting up and moving with her guidance made a big difference in my recovery. Trusting that she knew what I could handle and how much to push me was very encouraging. Practicing the exercises with my husband gave me more confidence and strength.
A bit of advice I received from my anesthatist really helped me and I'll share it with you. He said whatever mindset you take into the surgery is what you will have when you come out. If prayer or zen or meditation are what you need he said to use it and get to a happy place before you go into surgery. I do understand that relaxing going into this type of procedure is easier said than done. For me, it was prayer. I had to just Let Go and Let God or F.R.O.G. Fully Rely on God. Those two phrases really helped me and others supporting me kept reminding me of this. In fact, one of my family members bought me a small stuffed FROG to keep in my room as a reminder.
Thoughts and prayers coming your way ~ Kathy