spinal fluid leak

[silverdolphin]

Hi, I am new at this and had a hard time figuring out how to get a box like this to type in.  Still not sure I've got it.  I clicked on the new post button for this but what to you click on if it is not a new topic?

I had surgery on July 11 for a left acoustic neuroma.  Right after the surgery I had something leak out of my left nostril one drop at a time.  This only happened when I stood up after lying down for awhile or when I bent over. The nurses asked about it everyday but  I could never get a feel for how much spinal fluid had to leak out in order for it to be a problem.  Last week I thought it finally stopped.  No leaks for several days.  One of those days was when I had an appt w/ the neurosurgeon.  He asked about the leak and I told him it has stopped. He said "good".  But the very next day it leaked again and continues. I worry that it might be a problem

I am not scheduled to see the neurosurgeon again because he thinks I am doiing great.  Several people have told me to call the neurosurgeon's office and ask them how important th leak is.  I really don't want to do this because 1) his office is 80 miles from my house in the midst of the Washington, D.C. traffic  nightmare and 2) I'm afraid he will want me to come back so he can do some other surgical procedure to stop the leak.  I've had enough medical stuff for now.

Can someone help me with this?

[Jeff]

Hi,

I had a spinal fluid leak after my surgery. My surgeons were very concerned about this. As they explained it, there is danger of infection to the brain as bacteria can move through the leak site and cause an infection of the brain. When I had my leak, I went directly from the doctor's office to the hosptital and was admitted. They used a spinal drain to allow the leak to seal itself.  A spinal fluid leak is a serious issue. Untreated, this can lead to menigitis. My suggestion is to call your surgeon and discuss this with him today. Best wishes,

Jeff

[wanderer]

As spinal fluid leak is an indication that there is a direct path from the oustide to you brain.   This greatly increases the risk that bacteria could get from outside to your brain and cause menengitis.   This could be fatal, or cause damage to the brain.  

If you wish to risk your life because you don't want to go through traffic that is your decision however I feel it would be wise to consult your doctor.

I have had many problems resulting from my CSF leak.   Good Luck.

[becknell]

silverdolphin, I agree with the other posts. You can get meningitis from an untreated spinal fluid leak. I have read a lot about this. This can be a life-theatening issue. Please don't brush this off any longer. I hope and pray you call your doctor and report this condition immediately. Please let us know that you did!! Jennifer

[Rayinpa37]

I also agree with other posts.  It may seem an inconvience but a few days lying in the hospital beats the symptoms of CSF Infection and meningitis.

Please followup.  Maybe your surgeon can instruct a neuro at a more local location for you.  They did that with me.  I had a csf leak that pocketed in my right temple.  They had to drain it, seal it and it continued to do this for several weeks post surgical.  I live in northeast pa and surgery was done in boston.  I had excellent surgeons who were in hourly contact with local dr's to treat my condition.

Good Luck and please keep us posted

[comphibron]

I have had 4 procedures done stop the CSF leakage which occurred after my AN removal.All have failed.My last being August 3rd.It started again on Monday the 22th.I had seen Dr.Steege at Swedish who told me to live with the leak as there wasnt nothing that could be done due to the fact that my bone structure is not very dense but spacy and it was impossible to stop the fluid from leaking thru.Dr.Steege has said that it does expose me to spinal mennigitis which also could stop the leakage because of the swelling it causes.I dont quite understand this logic.The fluid drips down my throat and will drip out my nostril,usually when my head is tilted forward.I have an appointment on Monday with Dr.Mangham but I'm afraid he will say the same thing he told my wife the day of the surgery that he has done all he can do.I feel like I have been booted out the door with a "go away dont bother me anymore" attitude.I had put my faith and confidence in this man to stop the problem but here I am really sweating it out.I am looking for alternatives and would appreciate any comments from anyone who can help,please.
Thanks,
Tony

[wanderer]

Call doctor Brackmann at house Clinic in Los Angeles and get his opinion.    I spoke to him regarding my situation.

[lynn]

who was your doctor in the washington dc area?  I have found several names but am not sure how to tell who has more experience.  I appreciate any names I can look into.