Hospital stay last week

StephN · 06-18-2006, 06:57 PM

Been away from my computer and just catching up with everyone today while hubby does yard work, which I can't do right now (otherwise we are out there together).
Some of you know that I have a post-brain surgery (last Feb 9) problem that is a fluid pocket formed at the surgery site and around it at the back of my neck. It was increasing and getting more bothersome, so my brain surgeon suggested trying a minimally invasive procedure.

I went in on Monday midday and had a Lumbar Drain inserted late that afternoon. The purpose of this is to control a slow decrease in the excess cerebral/spinal fluid that accumulated. The drip is calculated at between 10 & 15 cc/hour. This necessitates a hospital stay as they have to constantly monitor this drip level and see how it may be affecting the patient. The tiny catheter insertion was about like a poke for infusion and I was numbed for that. They plaster all the tiny lines down with Tegaderm and I felt nothing and could lie on my back all I wanted.
They also take a 5" Ace bandage and wrap it wround my head for compression. I am still wearing that for a few more days. (I look like a woodpecker with my hair curling out the top ...)
This procedure has a less than 50% success rate in curing the pinhole(s) from the surgery that are allowing the leak. In my case the fluid pocket is much reduced and hopefully the scalp and muscle can knit back together and what fluid is left will be managed by the tissues there. I have 2 little stitches in my L4 area where the drain catheter was removed and other than some resulting headaches from the change in fluid pressue inside my skull, am doing fine.

This is not something I recall seeing posted about on this board and even when I did a web search for "tap & wrap" or "lumbar drain" there is not much info on them. Since a piece of bone was removed at the back of my skull, there is a depression for fluid to form. Not all brain surgeries need to put the bone back, but this is not the main reason for the problem.

Since I was not sure how it would go, I decided not to post going in to the procedure, as I may have had to stay and have another surgery on Monday if this did not go as it did.
For the resulting headaches they gave me Tylenol and suggested I take something with caffeine. As I have been off caffeine for 5 years, I am sensitive to this and it worked pretty well. ALso another reason to eat more of my organic dark chocolate! (An excuse like this I could do without!)

Am busy catching up on my lost sleep, and what a treat not to have to go for a CT scan at 4:15am this morning! They do all the tests and blood work that early so it is ready for the docs and residents when they make their 7 am rounds.
If you have any questions, let me know and I will keep you posted on follow up.

rinaina · 06-18-2006, 07:04 PM

I just wanted to wish you well and let you know that I am praying this procedure works to it's fullest and you find the relief for your problems. Gosh, the more I read hear the more blessed I feel so far. I really never knew the full scope of what can happen with this Her2+ breast cancer when it reoccurs. I'm praying for you and so many of you others out there. I hope G-d is watching over all of us. Let the researchers continue strongly on their paths to find more and more that will lead them to a cure that is so desparately needed.

lu ann · 06-18-2006, 07:12 PM

Dear Steph, It amazes me the things we have to endure associated with this disease. It calls us for a strength which we never knew we had. You are a very strong woman with such a positive spirit. I pray that you stay strong and are able to continue your witness to all of us who need extra encouragement. Love and Blessings from Lu Ann.

Barbara H. · 06-18-2006, 07:21 PM

Steph,
What an ordeal! I agree, the lose of sleep that one suffers in a hospital is very trying. I'm glad your home and getting some rest, and I hope that this procedure works.
Best wishes,
Barbara H.

StephN · 06-18-2006, 07:27 PM

This past week is one of those time I had to just go on Cruise Control and let Mother Nature take Her course. This is not the easiest thing to do, but as a veteran cancer patient, is a skill I have developed for self preservation.

We are told that we have abilities to do things; it is being able to BELIEVE that and act on it that is the hardest part. Learning to relax and find a center is how I have managed to have PATIENCE through all my travels with breast cancer. (I think they misspell "patients.")
Sure, we are anxious to return to what was once our Normal lives, but for us, we have to accept that we have a new life. Make the most of the days you have some energy, and give as much of that energy to those you love.

The main thing I remember every day is that NO active cancer has been detected in me for over 1.5 years - and if it is, I have plenty of new ammo to throw at it. So far Herceptin has NOT let me down, and has been my best friend in my fight. I know I am joined by others such as Christine in this result. Now if I can get her track record after this, I will be most grateful.

Bev · 06-18-2006, 08:45 PM

Good luck Steph, BB

al from Canada · 06-18-2006, 08:52 PM

love ya Steph

Al

Lolly · 06-18-2006, 10:22 PM

Steph, you are amazing.

<3 Lolly

RhondaH · 06-19-2006, 02:24 AM

what a WEEK you've had. I'm glad everything turned out ok. Take care, God bless and REST.

Rhonda

IRENE FROM TAMPA · 06-19-2006, 04:38 AM

You are such a trooper Steph and an inspiration to us all.

pattyz · 06-19-2006, 05:50 AM

OMG Steph!!! We could have atleast been praying for you, girlfriend! this sound way more scarey than you report it to be...... imho!

It also sounds like what you really need most at the moment is a week of good nights sleep. I do hope that is the sum total of your recovery and that this procedure will provide you with permanent relief. Afterall, there is no reason why you can't be in that successful percent of "tap & wraps"!!

lots of hugs,
xoxopattyz

Ann · 06-19-2006, 06:16 AM

You have a great attitude and I admire you for this. To take each day one at a time and to realize life has changed is a philosophy that I am working on. May you have the best success with your latest medicap procedure!

Esther · 06-19-2006, 10:56 AM

Steph glad you feel up to posting, it sounds like things are coming along well.

mamacze · 06-19-2006, 09:00 PM

Here you are now, just barely post hospitalization and already, thinking about us enough to post right away. you are really something...and now it is no surprise that you are apparently pioneering this seemingly new tap and wrap or Lumbar drain procedure. Thank you for keeping us posted and letting us know you are holding your own.
Love Kim from CT

Kim in CA · 06-21-2006, 08:59 AM

Steph,

You are such a pioneer. I am so sorry you have had this to deal with on top of everything else. Try to keep your inner calm and work on healing. We old timers just can't let our guard down, can we?

Sending my best thoughts and prayers to you. Love Kim

TriciaK · 06-21-2006, 01:19 PM

Once again you are leading the way and showing that amazingly strong spirit! I am so impressed with how you take it all in stride and do what ever it takes. Surely "Amazon Warrior" is an appropriate title for you, Steph! Thank you for sharing---this procedure is totally new to me. I have learned so much from you and you are surely an inspiration in so many ways! Hugs, Tricia

madubois63 · 06-21-2006, 02:06 PM

Steph - I am glad things went well, and am praying all continues to improve. I do know about those early morning tests (4 am for blood every morning). Enjoy your sleep and your home...

G. Ann · 06-21-2006, 09:09 PM

Steph,

Thank you for sharing your experience and to all the others who are facing challenges. Steph, your spirit shines through. My thoughts and prayers are with you.
G.Ann