Arnold-Chiari Malformation Support Group

Hi, I joined JUST to reply to this question. Looks like a great support group you all have going here.

Ks, you have a CSF leak, obviously. Please be careful!!

If CSF can get out (of the dura), bacteria can get IN. This means: meningitis! You do not want this!

Please do not take showers or wash your hair. Please do lie down flat, that is why you had the horrid headache. Keep the area, including pillow cases, very very clean. If anyone is cleaning the area for you, have them practice extreme hygeine, using gloves etc.

Some would question that you should be in a hospital...I'm not sure about that. But this is something that does happen post surgery (where the dura is compromised) but it's something very serious that needs to be really watched. I don't want to scare you, but also want to impress upon you that this is serious, you need to keep this very clean...did the nurse taking out the staple then leave them in, or put in new ones?

Don't take a shower yet!

Oh, if it were me, I'd ask the doctor to take a sample of the leaking CSF and send it to the lab to test for infection!! honestly, this is so important, I can't stress how important it is. Please ask your doctor to do this.

I hope this helps
here4ya

Hi, Thank you for your reply. The staples were removed which is when the leaking started. From what NS said there was a pocket of CSF under the staples which when removed allowed the pressure to release and the headache was relieved. I still have a small leak. Unfortunately when I called my dr earlier to let him know how I was doing he said I could take a shower and wash my hair. I focused of just washing the top of my head and tried to stay away from the incision. Dr did not seem concerned about this at all. Now what should I do?

Don't worry, or try not to. I know that feeling of wanting to take a shower after not having had one is so long (waiting for the staples to come out).

I'd try to keep it all clean, as I said. And on Monday, I'd call your doctor and ask to go in that day and ask him to take a sample of CSF for testing.

Unless you get a fever, then if that happens, I'd go to the ER.

Take it easy this weekend. I'd stay home, stay in bed or in chair watching TV etc and then on Monday, call them. It may be that the NS needs to go back in and repair the dura in order to stop the leak. But be sure they check for meningitis or infection.

I hope I didn't worry you too much. But I've known of a couple of cases of this so this is why I wanted to warn you strongly. It is something to be taken seriously.

Give it all to God, He'll take care of you!

any other questions etc, just write...

here4ya

Hi, I can't thank you enough for the information. It is very confusing to me that my NS is taking this so lightly. I awoke today feeling better. The leak seems to have stopped and my headache is gone. I am praying that the NS was right and it was a pocket of CSF beneath the incision and once it drained it would be ok. I will not wash my hair and have kept it covered which is hard because of my hair growing in until I know it is ok. Again, thank you for the information. BTW do you know how to go about getting a Chiari Malformation awareness braclet?

Hi...

I'm so glad the leaking has stopped.

I have thought a lot about you this weekend, and I thought long and hard before I posted because I hated to scare you over the weekend when you couldn't call your doctor.
But I felt it important to tell you the seriousness of a CSF leak.

I do feel your NS was remiss in not telling you that this is a major complication, even if it is something that is sometimes seen post PFD (a couple of years ago, the nat'l average for CSF leaks post PFD was something like 18% which is unacceptable!).

The rule of thumb is: if CSF can get out of the dura, bacteria can get in. Which can lead to infection in the CSF or meningitis.

Sometimes CSF does pool under the dura which causes a swelling near the incision. This can also be very painful, as you can imagine. ANd sometimes doctors do drain this via syringe and sometimes they let patients wait until it drains on its own.

But once it starts leaking through the incision, then it is something to take very seriously. I feel I can't stress that enough.

Certainly some people have these and never get an infection...but some people, a lot of people do, so I just wanted to be sure you were aware of that and took appropriate precautions.

I'm praying that your leak has stopped for good and all worries can be put aside! But be sure to have that good lookin' guy in the picture check it often for any reoccuring leaks and keep it all very sterile for you. If you run a temp, feel nauseous or any symptoms out of the ordinary, you surely should call your doctor asap. I'm not a doctor or nurse!! I did have a CSF leak from the nose post severe trauma at the skull base. And I've read a lot of posts and info about CSF leaks over the years. My own CSF leak could not be found (they can be impossible to find when they come from the nose) and it eventually healed on its own and hopefully I did not get an infection.

Google meningitis and CSF leaks on your own...and strongly advocate for yourself...you'll do fine!

Oh, the best place to get the Chiari wristbands is at
http://www.wishesandrainbows.org/o...

Stellar advice here4ya!

Addendum:
1. Stay still and drink lots of caffeine. Mountain Dew, etc.

2. Keep pad or folded pillow case behind head and sniff the fluid when you change it, it really should not have "scent", if so this can be early sign of infection. Keep track of how much fluid you notice too.


3. During the healing time try to eat as organic as possible, avoid processed and junk food. 6 months at least.

Thanks, I called my NS today and made an appt for tomorrow at 10. I still have bad headaches. The healing process is very slow with this surgery isn't it? It has been 3 weeks today and I feel like crap. It's hell getting old. I can't thank you enough for being there for me through this. Don't worry about scaring me. I already had an idea anyway just really helps to speak with someone that has been through it. My husband and family has been wonderful but I don't think they can truely understand.

I'll be so interested to see what happens with your NS.

This IS a big surgery...and will take a long recovery. Cut yourself some slack!! Three weeks out is a short time and your body has a lot of healing to do. Take good care of yourself!

Hang in there, I am 4 weeks post surgery and the pain is just now beginning to get better. But still have to be carefull. Had a couple of good days so I tried to do a little more than I have been doing and caused the severe pain again. Believe me I'm not doing very much, still can't lift over 5 pounds, can't hold my head up too long without support. This is supposedly normal and so far, I have not experienced any complications. We just have to be patient and give things time to heal.

Wedding Jean, did you go to your NS? How did it go? Did your incision stop leaking? I pray for you, that all is okay!

here4ya