My CSF leak nightmare

I was on here last week talking about how I thought I had a leak...well I did, and last saturday night I started throwing up violently and was extrememly dizzy with the worst headache ever, I went to the ER at 8pm and spent most of the time being ignored by everyone - I was crying and throwing up and they stuck me in a bed in a hallway and gave me some anti-anxiety medicine I guess because they didn't want to deal with me. They did an MRI and saw the leak and sent me HOME at 1am with vicodin and anti-nausea meds and said to see my surgeon Monday (who they talked to).

4am came and I woke up to take meds and I immediately threw up after taking them and then blacked out and my husband thought I was having a seizure (my arms and legs were twitching) and called 911. So the paramedics took me back to the hospital and told me to get off their bed and go lay on the bed in an ER room and I collapsed and blacked out right beside the bed.

I don't remember what happened much, but the next 3 days were a nightmare, I had to wait until Tuesday to get surgery and nothing they were giving me was helping. I was in ICU the entire time on morphine and anti-nausea meds (which didn't help), no food or water, I was given 4 IVs by the time I left because I needed 2 originally and 2 became infiltrated. I couldn't stand, barely sit up, I wanted to die. At first I used a bedside toilet until even that was too much, I almost passed out sitting on that, I can't even imagine now what it was like for the 4-5 nurses/whoever in the room that came rushing in when I almost blacked out with my underwear around my ankles sitting on a portable toilet next to my bed - I wasn't even in a gown, just a tank top and underwear. I was wishing they would just give me a catheter I was in so much pain it hurt to open my eyes let alone move to get out of bed - so I was put on a bed pan after that, it hurt just to roll over on to it.

I finally had surgery on Tuesday around noon, I woke up around 4 I think and it was like night and day. No pain will ever compare to the pain of that spinal fluid leak. I came home yesterday, the day after my repair surgery and I have a good amount of pain from being reopened and from their carelessness with securing my head in place - I have all these cuts and my scalp hurts SO bad. I know it was emergency surgery and they had to fit me in between scheduled surgeries but still...ugh.

I don't know if anyone else has experienced such a horrible time with a spinal fluid leak, but nothing prepared me for just how sick you can get from a leak. My surgeon said I had 2 tiny little pinholes that fluid escaped from and that was it.

I am so sorry to hear what you have been through. It just sounds awful! :( I hope things are smooth sailing from here on out in your recovery!

What a nightmare! I'm glad you are home and hopefully on the road to recovery.

Diana

How horrible! So sorry you had to go though this. Hopefully you will have a smooth recovery from now on. What you went through is my fear also.. I still have a leak. I'm just praying it will resolve. Take care and be sure to keep us updated.

My CSF leak was horrible. Most people leak through their nose. Mine leaked into my mouth, then turned into meningitis (all after my MVD surgery). I am so sorry you had to deal with this. Please let us know how you are doing. Did they tell you to stay hydrated & to include caffeinated beverages? It helps with the headaches and to replenish your lost CSF.

I hope you feel better soon,

Tracy Z.

Thanks everyone, I am doing much better - my mom came over and saw that they shaved my head way too close and the pain I am experiencing on my head is razor burn - and MAN does it hurt!! Otherwise I feel pretty decent considering I was cut back open (70% of the incision reopened). My rant here doesn't even go in to full detail of ALL I went through with the ER and nurses and paramedics, if you knew it all, you'd be amazed as I am that I made it this far.

I had no idea a leak could cause such a terrible reaction - I was throwing up spinal fluid it had drained in to my sinuses and in to my stomach. Tracy Z - I had no idea about the caffiene, I've just been drinking water. I will drink tea and coffee then, yay! lol.

Wow! That is an awful story. I cant stand er's. A bunch of residents that call themselves doctors diagnosing and making calls on peoples lives. Its unreal the nightmare we go through with Chiari. Someday the doctors will have a better protocol. Until then we continue to jump through hoops and be looked at funny...

Glad you're on the road to recovery now. What a nightmare. Maybe your mama has some sort of fancy cream to put on your razor burn? Neosporin? Moisturizer? Ask your mama, not your nurse!