CSF Leak and My experence. Has anyone had something like it?

General General TN & GPN (Old Site)
1

Hi Everyone

I have read a great deal about having CSF leaks after surgery and this is making wonder

My story sounds different (sorry for the rambling)

I had a horrible experience after my MVD. In fact a few but well its really Brain surgery so I did not expect a picnic

The doc left the stapels in the wound too long so without numbing the area the nurse had to really yank them out just befor discharge. (sorry if this is unplesant). I was vomiting all the way home. I made a real mess in the now ex wifes car.

I had the worst headache from the point that I left the ward, Like my TN symptoms (I get a lancing pain through my eye like someone is driving a 9 inch nail through my head).. any way- The headache was Like getting my TN symptoms all over my head all the time.

I suddenly answered the question of Is there anything worse than TN (Yes).

So when walking out of the ward driving home untill i got to my bed about 4o mins later I was nearly unconsious with pain.

BUT as soon as I lay down (well 5 mins) the pain went away.

When ever I stood upright it was back in force

So I went everywhere stooped at 90 deg. (The toilet was a mission)

I was Later told by my doc that my CSF leak was so bad I had depleted the fluid around my brain and there was no more fluid to act as a shock absorber.

I stayed home and horizontal for 7 glorious pain free days (aside from the trips to the Loo) watching pay TV and being without Drugs and without TN Bloody wonderful.

I had to go back into the Nurolgist on day 8 (lay in the back seat of the car)

as soon as he saw me he called an ambulance and sent me back into hospital for 2 weeks and the pain free drug free time came to an end. BUGGA

They were saying the could do a "Blood Patch" take some of my blood into the lab get the nessisary clotting agent and inject it into the Spinal fluid. But the Brain surgeon said No.

They put me on Dexamethasone and I was sick for a year.................,.,., BUGGA

So

In my case I had a CSF

I could not stand Up right without almost passing out

The pain was like the worst TN shock but over my entire head and continuous

anybody else had this?

I had this surgery in 2006 and as the symptoms are coming back I am probably going to have to do it all again. (I hope all wont include a CSF leak again!!)

2

Hope it is better the second time around. Ive seen tooooo many here that report leaks to their Doctor/Nurse and it is NOT solved soon enough.

Be proactive and cautious - but I too would endure another MVD if needed!!!!

3

I had the opposite. I had a bleed during surgery & then I had swelling on the brain. Was vomiting, felt awful, likes head was going to explode. Then the doc tells me we think you might have a blood clot! So back for another scan! Thankfully it was just swelling, so more meds, as well as morphine, god I love that stuff when it takes your pain away. But it makes me throw up & when you have a sore head. I just wanted to die & didn’t know which was worse the TN or this surgery. Waking up in intensive care was the worst I have ever felt in my life! Any way, sorry, I’m going on. But yes I can imagine how you felt, even though I did not have the same.