Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Neurology (Expert Forum)
CSF Leak - Is this normal?
Answered by
Cleveland - OH
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
CSF Leak - Is this normal?
by JanEllen, Aug 08, 2007 12:00AM
I am a 42 year old female who has just been diagnosed by my ENT with a CSF leak. She has since referred me to a specialist at Emory University in Atlanta and I was told he was the only doctor in my state (GA) who deals with this issue. My appointment with them is not until the 24th of this month. We are not sure how this could have occurred - the only trauma having been a dental incident in October where the dentist, using the normal power/air tools used during a root canal, accidentally gave me an air embolism to the right eye area. It healed after several days and I never gave it a second thought.
My CSF leak is only in my right nostril (same side as the air embolism). I leak upon leaning forward or doing anything slightly strenuous. When I lie down, I can feel it leaking down the back of my throat and it sometimes awakens me from my sleep making me gag or cough. This has all been going on for about 2 months. I also have popping in my ears, headache (more of a real "tightness" feeling in my head and neck), and very very mild nausea from time to time. All of this is combined with fatigue...I just want to sleep a lot.
Is this normal CSF related stuff? Is there anything I could be doing in the interim to help alleviate some of the discomfort? I know it's hard to "diagnose" over the internet - but anything you might be able to offer in the way of knowledge of this condition - anything to help me cope until my appointment on the 24th, would be greatly appreciated.
My CSF leak is only in my right nostril (same side as the air embolism). I leak upon leaning forward or doing anything slightly strenuous. When I lie down, I can feel it leaking down the back of my throat and it sometimes awakens me from my sleep making me gag or cough. This has all been going on for about 2 months. I also have popping in my ears, headache (more of a real "tightness" feeling in my head and neck), and very very mild nausea from time to time. All of this is combined with fatigue...I just want to sleep a lot.
Is this normal CSF related stuff? Is there anything I could be doing in the interim to help alleviate some of the discomfort? I know it's hard to "diagnose" over the internet - but anything you might be able to offer in the way of knowledge of this condition - anything to help me cope until my appointment on the 24th, would be greatly appreciated.
Doctor's Answer
by Cleveland Clinic, Aug 31, 2007 04:20PM
, Aug 31, 2007 04:20PM
To: JanEllen
Thanks for the email and not sure I have much else to add at this point. It sounds like they found the source of the leak and you will have it repaired. When patients loose CSF they usually develop intracranial hypotension and not high pressure as one of the readers suggested. In these cases the HA resolves when lying and increases when up. Some patients with spinal leakes end up have lumbar drains placed as well. Sounds like you are in good hands at Emory and I trust everything went well with the surgery, GS
My leak began about 2 months ago. At first it was nothing more than just the dripping nose when I leaned over. As of the last week though, I am having some headaches - most of which are mainly just a really "tight" feeling in the back of my head. I find it hard to get comfortable even when lying on a pillow - it feels like I am laying on a brick sometimes. Maybe it's just stress. I do know that yesterday afternoon when I was driving home from work, I felt a little disoriented and panicked. I wonder if it actually had to do with the leak or if I was having what some may call a panic attack? (never had one - there's a first time for everything, I suppose...)
I have called the specialist's office and asked that if they have a cancellation before the 24th if they might be able to work me in. They said they would let me know. Meanwhile, I just sit here with my head feeling like it's in a vice-grip and wait. :-P
I have been trying everything I can think of to alleviate the headache/nausea. I've been doing bed rest as much as I can and avoiding the sneezes, coughs, nose blowing, etc...but the leak seems to be worse? Usually when I would wake up in the morning - I would get about 4 or 5 drops out my nose, now as of this morning I am up to around 10-12. It seems I get this "gush" when I have been lying down for awhile and the stuff has a chance to "pool" for lack of a better term?
How much is too much? I am counting down the days til my appointment on the 24th. I thought about going to the E.R. beforehand to see if they would do scans or something but I didn't know what to ask for and don't want to get useless stuff that my specialist wouldn't be able to use. I just hate waiting for an appointment for so long, fully realizing that I still won't have a solution because they will just talk to me for ten minutes and then have to send me elsewhere (more appointments - even longer delay) for scans or whatever. I guess I am getting a little impatient - can you tell? ;-P
All this time I am missing work - and I am a graphic designer (contractor), so I don't get paid when I don't work. I also have NO insurance. (sigh)
Have you looked into intracranial hypertension or by its other name, known as pseudotumor cerebri? You have several symptoms of it (including CSF leaks). Especially the headache you describe. Please see: http://www.ihrfoundation.org/ , and also http://www.pseudotumorcerebri.com/ and especially, http://groups.msn.com/pseudotumorcerebri/_homepage.msnw?pgmarket=en-us (The MSN Group for Pseudotumor Patients). You will learn a lot at those web pages about this condition, or disease. Please read through them.
Sincerely,
Julie
Well, I saw the specialist on Friday and am scheduled for surgery to repair the leak tomorrow morning - yes, that quickly! I was amazed they could set it up so fast, but also relieved that something was finally being done. They were able to use the CT Scans I had from my E.R. visit (I finally went!) and had a basic idea from those of the general area of the leak - then the specialist (he's an otolarygolocist (SP?)...) used this long rod thing with a camera on it and stuffed it up my nose in the office on friday (and even though they supposedly numbed me - I still felt it...ouch!) and found where it was actually leaking. I got lost somewhere around words like sphenoid sinuses and cribaform layer? Anyway, just glad to be getting it fixed. I'm naturally anxious about my surgery in the morning though. They told me I would be in the hospital overnight and then out of work for a couple of weeks. I cannot imagine what kind of pain I may be in afterwards - yikes!
I will report back here when I find out more about what all was involved with the repair and where exactly the leak was.
Thanks everyone,
Jan