I think I might have a CSF leak?? I need some opinions asap please!

[Bethany =)]

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!

 

[chgog]

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

 

[justin_mcnatt]

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.

 

[delta_beta]

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.

 

[Nallely]

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.