CSF Leak after chiari surgery

[jenn1437]

I had my surgery on december 9, 2008.  All was well until last week and the symptoms started coming back- then the kicker....my head started swelling around my incision site and radiating out. I called my NS and I had to go in right away for an mri and an office visit directly after.  I have a spinal fluid leak which is filling up the back of my head (actually causing lovely visible swelling on my neck and base of my head) as well as the space above my eyes causing aweful headaches and other fun things.  He told me that it would heal itself after a few weeks and to take it easy, also gave me powerful headache meds.  The swelling has gotten worse over the last two days and the only way to feel better is to lay down.  Has this happened to anyone else?  I don't want to be opened up again, but is it right to just let it try to heal itself?  I'd love to hear from anyone else who has this problem!!!!

[thecake]

jenn1437
your brain is leaking i know because i went through it it going to be bad. you need to go to long island and you will be an emergency case so your insurance willl cover everything . the docter is lying to you and thats not rigth. nobody should go throu this pain i never know i had chairi into one year ago. i was passing out at work and my head ach were so bad i wanted to die. but now i have no head achs and im still in pain on and on medication is it worth to have surgery i don't think so

[thecake]

i had a leak in my neck too it will get worse if you don't go to the hospital. I had four surgery. the best place to get better is the chairi center in long island they specific hand chairi patient .the best docter is bolenese he saved my life  and i have a shunt it  been a year and im still in a lot of pain but im not dead. alot of fluid could cause damage. i wish you all the best.

[selmaS]

The more recent poster did not mention if they had surgery....so I think u r confusing it with the original poster and their PFD date......

[Kim60]

Hi,
I'm sorry you're going through all of this. Can this really happen so long after surgery??? It has been over a year for you. What could happen to cause this. I haven't had surgery yet but I am thinking about doing it in the Spring.  
Hope everything gets better for you soon.
Kim in NH

[angiebaby78]

Hello,

I have developed quite the bulge in the back of my neck since my PFD approx 5 weeks ago.  My NS is watching it currently, started me on a course of steriods to see if will go down on its own.  While my symptoms from the leak are way better, my swelling is not.  I am going back to see him on Tues, to discuss next steps.  He has mentioned  LP shunt placement, but I am not sure I am sold on that idea yet.  I would much rather try a blood patch and drain or something like that if I could, but we will have to see.  Will keep you updated on what happens! Positive vibes!

[selmaS]

Hi and welcome to the Chiari forum.

Did u have a PFD?...how did u acquire a CSF leak?

I hope U join the forum and share more info  about urself : )

"selma"

[apers]

I have the same thing.I actually passsed out at work,and had another mri which found the leak.The headaches are getting worse and more frequent.I have an apt. to see the Dr. in april,2010,but I worry if I should go sooner.No swelling,just headaches and ringing in the ears and numbness in my hands.

[selmaS]

Hi...it does sound like it could be a leak, but the oder?
Maybe an infection...how long since her surgery?If it is a CSF leak a blood patch can be done...it is an injection to patch the leak.

Has a bone scan been ordered?...an antibiotic rx'd?Osteomylitis is an infection of the bone......it comes from dead bone or blood loss to the affected area.If antibiotics do not work surgery to remove the dead bone to prevent it from spreading may be advised.

May I ask who and when was her decompression done?

Godspeed

"selma"

[Burney665]

My 47 year old neice had the surgery, but has had a clear leakage from the incision site since the surgery for several months. Until recently, it has begun to become odorous.

She is very freightened of being reopened.

Could this be a CSF leak?

She just cares for the area on the back of her skull on her own.

She finally returned to see the NS and the CT shows nothing abnormal inside from Chiari surgery. He mentioned something that about it being Osteomyelitis.

Please help with advice.

[justaxxgirl]

i posted my story about chiari in the threat about "chiari - severe headaches" i would highly recommend you read it. i would retype it, but it was a pretty long post.

if you have any questions for me, feel free to send me an email on here.

[Shane99]

I know that it's painful, but it's not all that uncommon. The best thing to do is rest. Lying down normally should help with the pain and the leak should repair on its own. If it gets to the point where the meds aren't working or you start having other serious symptoms, then you need to go back and see your NS.

Selma mentioned a Blood Patch; if it doesn't get better soon, that's what your doctor may recommend - basically they take some of your blood and inject it into the area. Your own platelets then repair the leak. Non-invasive and safe.

Give it another day or two if you can. If it's worse on Monday call your Doctor and let him know - especially if it's still growing. Ask him about an Epidural Blood Patch.

[selmaS]

Hi and welcome. I am sorry u r having this issue.....I have heard that this can happen.I also know that u can get a blood patch to repair it. A blood patch is an injection...it is used more to avoid having to have another surgery.Again I am not an expert or a dr, but I also was under the impression that if u had symptoms that last 4 or more days that action is required.
Since I have not had surgery , I can not add much else.I would agree to lie down as much as possible.If u continue to degrade, I would insist on seeing the NS.

I am sure some of the other member's that have had surgery will pop on.Please be patient.

Good Luck
Godspeed
"selma"