What to expect when I wake up

[juliefromca]

I'm having my surgery on monday and I am curious what i should expect when I wake up. I know that everyone has a different experience, so I guess what I want to know from those of you who have been operated on, what did you experience? Any info would greatly reduce my anxiety...thanks so much!

And Happy 4th!

Julie

[susan]

I think it depends on where your tumor is and how large.

[peilynne]

Hi Julie, its Lynne, as to what to expect when you wake up, I would also reiterate what Susan said. As well, for myself, I woke up in intensive care, I knew my husband and my family, I was in no pain at all, and the next day I was moved to my room. I was very alert and very happy. It was a relief to know the tumor was gone. I'll be thinking about you and I'll keep you in my prayers. All will go well, I'm sure, think positive, I really feel the power of positive thinking is beneficial. Put all this aside and plan on doing something fun ands relaxing this weekend. The weekend before my surgery my husband and I had all my friends over and we had a lot of laughs and I'm really glad we did that. It got my mind off everything for awhile. Take care and all the best!!!!!!!!!!

[bethann]

Julie,

I woke up in the room I started in with my family all sitting around me! The doctor came in and poked my feet legs arms and hands. He was very happy I had feeling in all of my limbs. I came home on medications and did well....My second surgery a week later (because my first was only a biopsy) I woke once again in my own room with my family there! Still able to feel all the pin pricks. This time I had a very bad Migraine they took me that night for an MRI and I had to lay flat on my back for over 24 hours (thought I may have a SCF leak I did not) I went home still having the Migraines but they only lasted a week or less. There were other issues but non to bad. I am able to walk and use both arms just fine. For some reason I developed a tremor in my left hand and arm after my second surgery. (No good reason for that).

Hope this helps!
Beth

[Vanessa]

Julie,

You will be in my thoughts and prayers, you will have a successful surgery and soon you'll be looking back at this experience. I can't believe it's been 5 months since our son's surgery. Please let us know how everything went, or have someone post something for you on this site.

Always remember to let the nurses know how you're feeling, they will be your primary caregivers and will give you the drugs you need to stay as pain free as possible, especially during your first 3 days. It's always good to have someone with you during your hospital stay so they could be an advocate for you and your care.

God bless you,

Vanessa

[drummer904]

Good luck Julie, I'll be thinking of you Monday and looking forward to hearing some good results.

[Guest]

Night before surgery

I passed the time during the day waiting to call to find out when the surgery will be. Our process is that you call between 2 and 4pm and they tell you when to show up.

Off to the GYM for an easy bike workout. Scrubbed and scrubbed with the pre wash surgery soap. I was very apprehensive.

I was home for a late supper. I worried that I would eat too much.

I could not fall asleep. Tossing and considering.

Surgery Day 1

Up at 5.15 am. Off to the hospital.

The pre surgery holding area is interesting. Couples mostly and you try and figure out which one is the victim and which one is the supporter.

Then you the put 2 gowns on, one in the front and one in the back, they ask you a few more questions and an IV is put into your arm.

They took me up the elevator on a bed. I ask the man pushing if anyone ever backs out at this point. “No” he says, “then they would refuse to work on you”.

The weirdest moments are waiting in the hall outside the operating room listening to the nurses etc set up and talking like normal people starting a day at work.

I am moved from the hall into the operating room. I expect a theatre, with stands, but it a big industrial looking space.

I had 2 deep breaths of the “oxygen” mask they gave me and was gone.

Woke up in intensive care and felt absolutely wonderful. It is a drug experience - white light, feeling of pure oxygen high and what a rush.

Then the intensive care pros really work on you. Everything seems connected and correlated, blood pressure machine runs on automatic and they are describing how you push the pain button. Warm blankets, dressing for the wound everything is done quickly and with team like precision.

My doctor drops into the intensive care but it is not clear what he tells me other then it was long and difficult.

You wait then you push the button to test it and you are flying and sleepy at same time.

MY wife then came in to visit. I think all the tubes and equipment attached to me made her nervous. She has had a rough day since when I went in they said it would be done around noon but no one had called her until very late in the day.
I could not even raise my head to get a drink of water yet. Turning over on side was a big deal.

They kept me in the intensive care all night.

I felt stressed that everyone else was getting a room but I was not. People came in, were observed for an hour or two and then let go. Only I remained in the room.

Day 2

I am still in intensive care in the morning. I am much more with it.

The nurse asks me if I would like to try and sit in a chair and have breakfast. I am game and tying to put on a brave face.

When I sit up I have been laying flat for 24 hours. My head is very light and I feel like I will keel over. Breakfast is difficult and I feel very weak.

The nurse raises the stakes and asks if I would like to try and stand up. I do (mostly to show off since I am totally dizzy and disoriented). My feet, legs and buttocks are frozen and I stagger forward a bit.

Total failure and I return to bed. Some more confusion about a CT scan I am supposed to have

Then they take me to the spinal floor.

I am on a bag attached to my bladder for urine so there really is no way or reason to move from bed. I begin to feel like I am much worse then the initial rush.

I still have a pain button and IV, and another IV with steroids in it (for spinal cord swelling)

To sleep I just hit the pain button a few times and boom a trance

Day 3

Life begins. People arrive. Breakfasts arrive. Cleaners arrive.

I am still on heavy drugs, not much of much. I am hoping for a TV set or something to pass the time.

I make my first pass at standing up again. I am totally numb from the waist down.

I am on a bag attached to my bladder and an IV attached to my left forearm at the wrist

The first group of interns arrive (one of them appears to have been Benoit’s number 3). He describes my surgery as difficult and when I ask how it finally came out he says “basic carpentry”

I am now assuming that the assistant is my saviour and that Benoit left the work to his skilled assistant (How wrong this will turn out to be)


A soon as the bladder bag is removed I am “on the program”. I have to go to the bath room every 30 minutes

I can now sit up on the edge of the bed and pee into the plastic bottle. I wake up every hour at night to have one.

I hit rock bottom that evening in that I am trying to have a bowel movement, my IV is out in the hall, my buttocks are completely frozen and I just half sit there for 30 plus minutes.

No success at bowel movement

I try for a full night with no pain button

Day 4

I am almost human.

I hold off on all the pain medication to get started down the path to recovery

[cindylee]

Julie, my experience was a little different than the ones posted so far. I had no preparation for my surgery. My legs became paralyzed from the waist down. I was taken by ambulance to UPMC in Pittsburgh for surgery three days after diagnosis. My surgery was 11 1/2 hours but I did not end up in intensive care. I was returned to my room--I remember waking up and the nurse holding my hands and asking if I was a gardener. I could not answer because I still had the breathing tube in my throat. It is standard procedure to have one. I was a little queasy, but did not get sick. They gave me something for pain and I was out. I slept most of day two and I had a cath in also. On day three, they got me into a chair and removed the cath. I still could not move my legs but it wasn't bad sitting up. I had no pain at all. Two of the therapy girls came and got me standing on my feet and they physically moved my legs fa few steps with pretend walking. On day four I was returned to my hometown for therapy via ambulance. I had no one with me at the time of surgery. I could not turn over or anything on my own for almost 4 weeks after the surgery.

Every case is different. Everyone heals differently. I was fortunate to have the outcome that I have from all that was done surgery-wise. One thing I was free from after surgery was pain. Mostly because I was full of so much medication. I did not take pain meds then. It was only after I got home and was up and moving that I had to take something for pain. But I do remember being very, very fatigued. The kind where you just cannot keep going. I was a little wired until the steroids wore off, but otherwise I was fine. And so will you be. God Bless! Cindy

[susan]

Cindy-you had surgery at UPMC? So did I.
To Julie-
The reason I asked about the level of you tumor is because the higher it is, the more likely you might end up waking up with a breathing tube.
My tumor was at C2, but my cyst went to the top of C1, so I knew there was a high risk that I might wake up on a ventilator, but I was very blessed to be able to breathe on my own right away and did not even have an oxygen mask.
Most spinal cord patients spend at least one night in the ICU, mostly so they can monitor your blood pressure (BP) to ensure that your cord is getting enough circulation. I tend to have a low BP, so I ended up getting IV fluid boluses (a larger volume given in quickly) to keep my pressure up. To measure your BP, you might have a cuff on your arm &/or an IV catheter in your wrist that goes into the artery there.
One other poster said he was kept flat, I was kept with my head up at a 45 degree angle to decrease swelling because my tumor was in my neck.
You will probably have inflatable wraps on your lower legs that keep inflating and deflating to keep your blood circulating in your legs.
You will have everyone and his brother doing neuro checks to determine if you are having any problems.
I woke up with pins & needles in my legs that resolved that night. I could use my right arm (my tumor was on the right side of my cord), but I had a tremor (shaking when I used my arm) that I didn't have pre-op. You may have more symptoms right after surgery than you do now.
I have to be honest, when I woke up I was in PAIN!! I wanted to go back under anesthesia!. Plus the bladder catheter drove me nuts (I felt like I had to pee). The nurses were very prompt with the pain medication I eventually got used to the catheter.
You will probably have an MRI that night to check your surgery site.
I left the ICU the next day.
One the second day after surgery I had another surge of pain, even though my pain had been controlled on pills and extra IV medication here and there. The nurse explained that it was due to muscle spasms. I was then started on medication for that too and everything was under control again, but it was bad pain.
I had surgery on Tuesday and went home on Friday. (I work with insurance and utilization of hospital services and I knew it was time to go when my pain was controlled on oral medication, I could eat without getting nauseous, I could urinate on my own, physical therapy said I was safe to walk on my own and my surgeon said it was OK. You are better off at home at that point).
I'll continue to remember you in my prayers. Have a good evening.