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Old 03-09-2009, 03:18 PM   #1
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EanneRich HB User
Unhappy I think I might have a CSF leak?? I need some opinions asap please!

For the past year I've been experiencing clear watery fluid coming out of my nose. Sometimes it'll happen when I'm bending over and sometimes it'll happen when I'm sitting or standing perfectly straight up. It pours right out, kind of like my nose is a faucet. It doesn't run down the insides of my nose or trickle like a runny nose would. It simply pours right out for about 2 seconds and then stops. Like I said, it's been happening for the past year (I remember it happening for the first time on my 19th birthday which was exactly 1 year 2 months and 17 days ago) however, in the beginning, it was very rare...maybe occuring once a month. Unforunately, for the past 6 months or so, it's increased to about 2 maybe even 3 times a month. Simply, whereas when it first started it wasn't happeneing enough to bother me, now it's happening enough for me to notice it and wonder. Not only has the occurence increased but I've started to get headaches in conjunction with the nose leaks. For about 20 to 30 mins before I get a nose leak, I feel light headed and weird and have a slight headache...almost as if I were high. And for about 20 to 30 mins afterward I feel the same way. This never bothered me before but, my friends and I just got back from spring break and while we were there, it happened 2 days in a row. I have a doctors appointment tomorrow with a highly accredited Ear Nose and Throat doctor...but as I do more and more research...my problem seems to be more with my brain and spinal cord?? Could the clear watery fluid be a CSF leak?? What else could it be? My dad knew somebody who had it once but his CSF leak caused a lot more fluid to come out of his nose than the fluid that comes out of my nose. Anyway, doing research on the computer is so hard and I'm really actually starting to get frustrated and kind of scared. If anybody has any opinions, advice, or information they could give me, I would really appreciate it. Thanks so much.

ER

p.s. I read somewhere that a CSF leak can cause a decrease in cognitive function....well in high school I was in the top 10 percent of my class. Now that I'm a sophomore in college, I am still in the honors college but I honestly feel like my thinking abilities have gone down the drain. And even before I started contemplating the fact that I might have CSF, I used to joke around with my friends and say that I was slowly developing ADD because I can't concentrate on anything. Just thought that might be some additional helpful information.... oh, and by the way, I have a headache right now. Anyway, like I said, any information- I would really appreciate it!!!!!!

 
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Old 03-09-2009, 04:28 PM   #2
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brainchild HB User
Re: I think I might have a CSF leak?? I need some opinions asap please!

Hey,

I'm no expert on this but from what i've read a CSF leak is classed as a medical emergency, I used to be convinced I had one because I was getting a lot of post nasal drip in my throat. There are many other things that cause similar symptoms though, such as allergies, and something called rhinitis?

With regards to college and school that could just be because you have a lot more going on in your life than when at school? College tends to be more active and social so that could be totally unrelated.

Definitely go and get it checked out though because if it was a CSF leak it can be a risk factor for meningitis.. but if you have had it for over a year its probably more likely to be an allergic/nasal irritation thing.

Good luck and hope you get it sorted

 
Old 03-10-2009, 09:05 AM   #3
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Re: I think I might have a CSF leak?? I need some opinions asap please!

there IS an actual way to tell whether this is or is not actual CSF,which i seriously doubt is what this is, just so you know. taking a gauze pad and placing it under your nose when this occurs, just to catch some of it. then lay that pad out for a couple of minutes. if it is indeed CSF, it would tend to seperate away from itself? it would create kind of a 'halo' affect surrounding the main liquid. CSF just has kind of an oily base to it so it tends to seperate out and create that halo affect when it is 'on' something like a white gauze pad? i worked EMS for many years and this does actually show it pretty clearly. CSF actually also has somewhat of a very light brownish,off tinge to it too. it is definitely not clear.

more than likely tho what you have is constant sinus drainage. unless you actually suffered some level of real trauma to your nose of forehead area, having a spontaneous CSF leak is just VERY unlikely. i am glad you are getting this checked out. just know that if you actually had CSF leaking for this period of time,you would have what would be probably one of the very worst headaches of your entire life when it occured, not just 'a headache'. it would bring you to the ER like right away, it would just be that bad. i really do think that what you have is much more likely some level of sinus drainage and not an actual CSF leak. i do hope this eases youir mind some at least. while anything is indeed possible when it comes to our bodies at times, i just highly doubt, from what you have described that you actually are leaking real true CSF. good luck at your appt and please let us know just what you find out. FB
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 03-12-2009, 08:26 PM   #4
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Re: I think I might have a CSF leak?? I need some opinions asap please!

thanks for your advice, both of you. but since i last posted my thread i've been to the doctor and they stuck these horrible cameras up my nose to check for any tearing in my sinuses. unfortunately, there were no tears to indicate that the leak is from my sinuses. the doctor who i'm going to is very highly accredited and during my visit he said it sounds like a csf leak. he said the only thing to do now is diagnose it. i'm carrying around a sample cup with me where ever i go to see if i can catch some of the fluid the next time it happens. i have a month to see if i can catch any and if a month passes, i have a ct scan scheduled for april 13th. i really hope its nothing serious because, knowing that i haven't had any head trauma, if i do have a csf leak, its probably due to some sort of malformation....and i'm really scared its a tumor. i know its probably not but its just on my mind because my dad has a brain tumor...specifically a petuitary tumor. idk...i'm just trying to pretend like nothing is wrong...because, who knows, it could be something else. but again, thank you for your replies!

 
Old 03-13-2009, 09:09 AM   #5
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Re: I think I might have a CSF leak?? I need some opinions asap please!

thanks for the update. honestly,i am really kind of suprised that your doc thinks this is indeed some sort of CSF leak, just cionsidering the symptoms that you DON'T actually have and the very rare occurance of a spontaneous leak actually happening as well. what did he say to you about how to go about actually finding out if this is indeed a CSF leak? i really would think, given the fact that if he looked into that area with tiny cameras,that 'something' would have actually shown itself as a possible leak prone area of some kind? you know what i mean?

did he state just where he feels this possible leak could be comming from? has he mentioned at least doing a spinal tap to simply check the pressure within your brain to see if there are any real deficiencys there within the dura/CSF? what he told you is just kind of a bigger deal,that i am kind of suprised he even mentioned this possibility without actually doing at least some level of real testing first,ya know?

is your dads tumor actually cancerous or just some type of tissue that is within his brain? its just not every actual tumor is from any type of cancer,there can be ones created from alot of different reasons and tissue too. is there ANY family history of bone issues or other types of brain malformations? just trying to check out every possibility here,thats all.

hopefully you can catch some of that fluid so it can be checked out by this doc. please keep us posted on just what you find out, this really does interest me in that i have never ever heard of ayone just having any level of spontaneous type of CSF leak without at least some level of real trauma occuring first,ya know? take care and let us know,K? sorry about your dads situation. FB
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 03-17-2009, 08:21 AM   #6
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EanneRich HB User
Re: I think I might have a CSF leak?? I need some opinions asap please!

Well as of right now we've only discussed trying to catch the fluid the next time it happens. If I do indeed catch it, they'll do a spinal fluid test and then decide where to go from there. The doctor mentioned doing a lumbar puncture however he said he would like to go ahead and see if I can catch the fluid first because the lumbar puncture and the other procedures available to test for csf are unpleasant and very invasive. Yes, it is definitely weird that I would have a csf leak without having had any head trauma. But I've done some research and after talking to the doctors, I really do think it might be just that. Also, if it were just a sinus problem, sinus drainage usually comes out both nostrils according to the doctor and others who I've talk to about my problem. Unfortunately, my drainage only comes out my right nostril. My dad hasn't had any surgery for his tumor so they haven't tested any of the cells. We've known about it for about a year and a half now and since that time he has been taking a medicine to prevent it from growing (I don't remember what medication it is at the moment). Since it is on his petuitary gland it has severely affected his hormones and blood levels. He is a very stubborn (but still very very intelligent) man and refuses to go back to the doctor to see if its grown any further. Fortunately, his hormones and blood levels are going back to normal which the doctors say indicate that it is very unlikely that his tumor is growing anymore and that it may have even decreased in size. I'm not sure of the medical history of my family...all I know is that one of my grandmothers died of skin cancer and the other of lung. As for my personal health, the only thing that I can think of that would even remotely have to do with a spinal fluid leak is the fact that I have a pretty significant case of scoliosis. And just in case you're curious, I've been going to MUSC for my appointments. The Medical University of South Carolina and it is a great facility. I'm sure my appointments there will be very thorough and hopefully I'll find out soon what has been bothering me!

 
Old 03-17-2009, 08:58 AM   #7
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Re: I think I might have a CSF leak?? I need some opinions asap please!

at least it appears you are in some good hands,and believe me,that alone is huge when seeking answers for really insane medical situations. been there done that too. did that doc happen to mention just trying to do a contrasted MRI on your brain? this could possibly show the problem. the only real connection i could think of with severe scoliosis and what you have if this actually is a real CSF leak, would really depend heavily upon just how really impacted your spinal area is right now. certain spinal issues, if they are impacting the cord area, can raise the pressure up there and could concievably create enough to create a possible leak from some weaked area up there. but that would be pretty remote i would think. i really am very curious to see just what you find out about this. hopefully they will get this all Dxed soon. please keep me posted. FB
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 04-16-2009, 08:31 PM   #8
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Ehlers Danlos HB User
Re: I think I might have a CSF leak?? I need some opinions asap please!

Hello. I just saw your post while I was googling CSF leak causes. It definitely sounds like you have a CSF leak. I couldn't get anyone on the East Coast to even test for mine. So I did extensive research and summarized some medical articles and went to my primary and said, "I have 25 out of 35 symptoms. I know a CSF leak is what has been causing my headaches all of these years." She agreed. The fluid comes out of my eyes, and I know I am swallowing it also. The ns who diagnosed intracranial hypotension failed to image my brain.

From my reading, those B2 transferrin tests are not stable, so you can get a false negative result. Another leaker told me about a new fluoroscien test. I am going to pursue this testing soon.

I did read an article by I think it was an otolaryngologist at the University of Pennsylvania who is experienced in diagnosing and treating endoscopically CSF leaking through the nose. What is published is that spontaneous CSF leaks are thought to be caused by an underlying connective tissue disorder, like Ehlers-Danlos syndrome. I would be curious to know if your ENT doctor has any experience in diagnosing and treating other leakers, and if so, how many?

So in a nutshell, it has been my experience that both CSF leaks and the underlying cause, EDS, of them are commonly misdiagnosed.

May I ask you if you ever had any joint hypermobility? Have you ever been diagnosed with a hiatal hernia, or TMJ, or mitral valve prolapse?

Contrary to what the other replier said, an MRI with contrast is not going to show a leak. A CT myelogram shows some leaks. They are very hard to image. But if you do get a CT myelogram, be sure to get them to test your CSF pressure first before injecting the dye. Low CSF pressure will prove you have a leak - somewhere. It just won't prove the location.



Quote:
Originally Posted by EanneRich View Post
For the past year I've been experiencing clear watery fluid coming out of my nose. Sometimes it'll happen when I'm bending over and sometimes it'll happen when I'm sitting or standing perfectly straight up. It pours right out, kind of like my nose is a faucet. It doesn't run down the insides of my nose or trickle like a runny nose would. It simply pours right out for about 2 seconds and then stops. Like I said, it's been happening for the past year (I remember it happening for the first time on my 19th birthday which was exactly 1 year 2 months and 17 days ago) however, in the beginning, it was very rare...maybe occuring once a month. Unforunately, for the past 6 months or so, it's increased to about 2 maybe even 3 times a month. Simply, whereas when it first started it wasn't happeneing enough to bother me, now it's happening enough for me to notice it and wonder. Not only has the occurence increased but I've started to get headaches in conjunction with the nose leaks. For about 20 to 30 mins before I get a nose leak, I feel light headed and weird and have a slight headache...almost as if I were high. And for about 20 to 30 mins afterward I feel the same way. This never bothered me before but, my friends and I just got back from spring break and while we were there, it happened 2 days in a row. I have a doctors appointment tomorrow with a highly accredited Ear Nose and Throat doctor...but as I do more and more research...my problem seems to be more with my brain and spinal cord?? Could the clear watery fluid be a CSF leak?? What else could it be? My dad knew somebody who had it once but his CSF leak caused a lot more fluid to come out of his nose than the fluid that comes out of my nose. Anyway, doing research on the computer is so hard and I'm really actually starting to get frustrated and kind of scared. If anybody has any opinions, advice, or information they could give me, I would really appreciate it. Thanks so much.

ER

p.s. I read somewhere that a CSF leak can cause a decrease in cognitive function....well in high school I was in the top 10 percent of my class. Now that I'm a sophomore in college, I am still in the honors college but I honestly feel like my thinking abilities have gone down the drain. And even before I started contemplating the fact that I might have CSF, I used to joke around with my friends and say that I was slowly developing ADD because I can't concentrate on anything. Just thought that might be some additional helpful information.... oh, and by the way, I have a headache right now. Anyway, like I said, any information- I would really appreciate it!!!!!!

 
Old 04-26-2009, 05:32 PM   #9
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Re: I think I might have a CSF leak?? I need some opinions asap please!

If this is indeed a leak, I am surprised that your doctor is being nonchalant about it. A leak could also be indicative of a tumor of the brain lining, just one thing it could be.

I have had a leak after a spinal tap and even though I had two patches, it was sufficient to do permanent damage to me. I wouldn't fool around with this. See a reputable neurologist.

ps The University of PA is the hospital that diagnosed someone I know of with the tumor of the brain lining. They could probably help with this also per post below.
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Last edited by dragonfly57; 04-26-2009 at 05:34 PM. Reason: added information

 
Old 04-26-2009, 05:57 PM   #10
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Re: I think I might have a CSF leak?? I need some opinions asap please!

I used to have this all the time, mostly when I would lean over but other times too. Mine was allergies. My husband has had this off and on too. His was allergies too. I never really thought too much about it until I read this post. It never occured to me it could be anything sinister.

 
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