Newbie 9 weeks post Op

[Kit W]

What I write here is partly my wife's memories and partly my own, some of which are taken from what I have been told by my wife Kay.

Where do I start? If what follows seems disjointed it is because I write as the memories occur.

 I only found out about my AN when I woke up in hospital following a seizure at home at about 2 a.m on 9/8/08. I was taken to the ER at the Wellstar Paulding County hospital where my first CT scan was done to find out why I'd had the seizure. It was then that an AN about 5cm+ in size, located behind my right ear, was discovered. A phone call was made to the Wellstar Kennestone Hospital to catch a Dr Tariq Javed before he went off call. I was then transfered to the Kennestone hospital.

I had an operation to put a shunt in my skull to relieve the pressure that had caused the seizure. I eventually woke up in ICU. My operation to remove the tumour was scheduled for 6:30 a.m on 9/11/08. The operation took 10 hours. Dr Javed was able to remove 99% of the tumour. I still have that 1% attached to the spinal cord. To remove it all risked putting me into a permanent coma.

My wife asked the surgeon Dr Javed how long I would have had left had the tumour not been discovered and he said a few days maybe a week. It wasn't known what condition I would be in following the operation. All I can say is that Kay is very happy to have her husband back. I feel I've been extremely lucky.

I spent the best part of two weeks in ICU. I suffered with hallucinations where I couldn't tell the difference between what was real and what wasn't. They had to sedate me for 12 hours because I wouldn't or couldn't sleep following the operation. For some reason I was like the duracell bunny full of energy and not really sleeping. It was also beleived that I was heading for ICU psychosis so I was moved to another floor. I was then moved to the rehabilitation floor for about a week.

During my week in rehabilitation I had to see my jar as half full and push myself that bit more with each session. My balance wasn't brilliant at the start but by the end I was able to walk unaided. Not that I need any although they did try me with awalker and a walking stick and they only served to hinder my progress so they were dispensed with quite quickly.

The effects of the surgery have been feeling has returned to the right side of my face. I have lost hearing in my right ear completely.
I had double vision following the operation but that has started to improve to the point that the upper third maybe a bit more of my vision is now normal.

I was released from hospital on our first wedding anniversary and went back in just under three weeks later with an infection at the site of the scar which turned out to be MRSA. So another operation was do to flush and clean the area with anti biotics. I am now at home and have a picc line in my left arm for IV anti biotics twice a day for two hours which is to end in just under two weeks.

The time leading up to my seizure is something I will leave to another post or this one could get quite lengthy. But suffice to say I did have symptoms but never really gave them much thought. Like I have said I will explain my symptoms in a later post.

Kit

[sgerrard]

Hi Kit,

Wow, that is quite a story. 5 cm is definitely in the very large category, where anything can happen. Your account reminds me why people try to get these taken out before they get that big.

I hope you have a chance to browse around on the forum. Some of your current symptoms, like deaf in one ear, facial numbness, double vision, even the picc line, are things that other members have had too. I'm sure some of them will be along to share their stories and hear more about yours.

I am glad to hear that you are up and walking about, and are able to continue your recovery at home now. Here's hoping it continues smoothly from now on.

Welcome to the forum.

Steve

[Dog Lover]

Wow. Quite the experience. So glad that things have turned out pretty good for you.

I, too, never used a cane or anything but my parents and my bothers arms while learning to walk again. My dr. believes that you progress much faster without one. I have to agree - at 2 weeks post op, I was walking on my own - slow but no help.

All I can say is keep looking at that glass as 1/2 full. You're through the worst part and things will only get better now.

Welcome and we're glad you're here. Folks here are a great group of people who can listen, relate, help you through the hard times and celebrate the good ones with you. 

Cathy

[MAlegant]

Hello and welcome.  That a pretty amazing story and I'm so pleased for you that you've come through it.  I'm sure it took more hard work then you bargained for.
All best,
Marci

[Jim Scott]

Kit:

Welcome!  Thanks for joining and posting your remarkable story.

You certainly had a rough ride but I'm pleased to learn that you're coming through it and seem to be rightly optimistic for the future.  Frankly, 'ICU psychosis' is not a term I've heard much but I have no trouble grasping it's meaning.  I was confined to ICU for a bit over 4 days, post-op.  It grew somewhat intolerable after 3.  The ICU can be very unnerving on many levels.

Although you've had your share of complications, you seem to feel you're improving at a fairly good pace and I'm delighted to read that.  Please do return to the forum and yes, post your account of the time leading up to the seizure.  By the way, your 5 cm AN has a medical name: huge! 

Jim

[Kaybo]

Kit~
Thanks for sharing your story and WELCOME!  We have a little unofficial club here that you are now a member of - it is for those of us that have PICC lines!  Sorry that you have to deal with that on top of everything else - we will certainly celebrate with you when you are PICC-less!!

K   

[Syl]

Welcom Kit,

5cm? That may be the record among the forumites. Thanks for sharing your story and I hope to learn more of the details leading up to the seizure. Seeing the glass as half full will certainly help you in your recovery. Keep up the positive attitude and keep us posted on your progress.

Syl

[wendysig]

Hi Kit and welcome!

Thank you for sharing your story.  Your AN was quite large, second only to another forumite, Satman,  whose AN was 8cm.  Unless you left anything out with regard to after affects of your surgery, you have had an incredible outcome and I am very happy for you for that, as I'm sure you and your wife are.  I'm sure I can speak for everyone when I say I look forward to hearing the rest of your story.

Wishing you a speedy and uneventful recovery,
Wendy

[Debbi]

Wow, Kit - what a story!  And as if a giant AN wasn't enough, you got the wonderful post surgical infection on top of it.  And, a PICC line - you won the tri-fecta!   My AN wasn't nearly as gigantic as yours, but I did have the post surgical return trip to the hospital for an infection in my incision site, followed by 30 days of picc line and twice daily infusions of antibiotics. 

Don't know what kind of antibiotic dispensers they gave you, but mine looked like little lemons (or maybe yellow hand grenades) and I was able to walk all over with one if my pocket while it infused.  Much easier than a pole and "bag."  I think I've got a picture of me with one of lemons somewhere on my blog.  The IV infusions really were pretty easy, once I got past the "yuck factor".  I had my husband do them the first day, then did myself after that.  Hopefully you'll get into a rythm with it.  And, I can guarantee you will be one very happy camper when it is time for the PICC line to come out - that was cause for celebration!

Oh, and one other helpful tip on picc lines - since you aren't supposed to get the site wet, showering can be tricky.  I found that Glad Press-n-Seal worked brilliantly to seal the entire arm and prevent any moisture from creeping in while I showered. Much easier than trying to encase your arm in a garbage bag! 

Hey, and by the way, welcome to the clubs - all of 'em!

Debbi, cheering you on from NJ