Nose is plugged & can't collect fluid!!!!

[Melissa36]

Hi! I am new to this forum. For 6 or 7 years now, I have had a leak coming from my nose just out of the blue. It has been clear watery fluid. See I had sinus surgery and it seemed to begin just shortly after it. I was dumb and just assumed they poked something so my sinuses were running out like crazy. Okay, that is what I thought for years. Well then I learned a thing or two starting like 1 and half years ago after I had a Suboccipital Decompression w/ laminectomy C1. I learned about CSF leaks. However, still I did not think anything of it. Then one day, I leaked for the 3rd time on my boyfriend (I have leaked alot but I had only leaked on my bf 2 or three times) and he said he thought I had a CSF leak. I said that couldn't be. He said I have all the signs and symptoms (seeing as though my symptoms have never gone away - the terrible headaches - worse when I move about, neck pain - could be from the surgery though, ear ringing - never goes away, etc...).

Anyway, I talked to a doctor who said that is what it sounds like I have. So one day when I had a severe neck pain and stiffness...I thought I had meningitis and went to the ER. I told them about the "possible"leak and they said, "so you have a cold?". I was like, "no, if I do then I have had a cold for every single day of the year for 6 or 7 years". They just dismissed it. Lucky I didn't have meningitis! Anyway, I finally got sent to an ENT specialist - 3 hours away from where I live. The doctors there took my leaky nose very seriously and wondered why I never did anything about it before. I was given a tube to collect the fluid - well wouldn't you know I couldn'f for once and it is going to look like I am lying! Oh I collected alright, right on my pillow. It just comes so fast that I can't catch it. Now I have a stuffy nose and can't get any anyway. I am so embarrassed and I have an appt tomorrow. I have a CT scan with contrast. I hope they find something!!!! Also they mentioned they have other ways they can collect it. So what besides the lumbar punture w/ dye, can they do to collect it???? Anyone here know?

Any input would be appreciated, a lot. My story is long and hard to put on here all at once. I am just sick of feeling horrible. I also have Tachycardia on top of all this.

Thanks alot.
Melissa

[vini]

hi I know how you feel, cold weather make it come out my nose , and before any one thinks yeah we all get that :rolleyes: out of one nostril only, enough to soak the whole length of a cigarette, but do people with a runny nose also have ringing in the ears , head and neck pain 24/7 balance problems and a salty sweet taste coming from the back of their throat, I had skull fractures and titanium plate,s in my head and had a leak out my nose pre surgery. I have an appointment with my nuro later this month you need 10 cc for testing , most go,s down the back of my throat , hes given me a pot to collect but like you I cant just make it come out I could before surgery by straining I am waiting for mri appointment that maybe able to image internal track of a leak

good luck

[MissyB]

Hi Melissa,

I'm a right nasal leaker, been leaking for years and thinking it was sinus related. May 2007 I got meningitis for the 4th time (my hole is large and in the cribriform plate). When I get meningitis is swells the brain and surrounding so much that the brain blocks the hole and I stop leaking. I've had periods of no leak post meningitis of up to 2yrs.

In 2008 I started to research my problems and came across the posibility I had a CSF leak, I knew I wanted to get tested but couldn't as I too wasnt leaking. I ended up going to have Cranial Sacral Therapy, just 1 session and I started leaking again. It certainly can't hurt to try Cranial Sacral Therapy, it might work the same for you, then you will be able to get the fluid tested.

Failing that, here in the UK they can do and MRI with flouresecen (sp?) to try show where the leak is, not sure if they do that in the US.

All the best.
Belinda

[vini]

Hi Melissa,

I'm a right nasal leaker, been leaking for years and thinking it was sinus related. May 2007 I got meningitis for the 4th time (my hole is large and in the cribriform plate). When I get meningitis is swells the brain and surrounding so much that the brain blocks the hole and I stop leaking. I've had periods of no leak post meningitis of up to 2yrs.

In 2008 I started to research my problems and came across the posibility I had a CSF leak, I knew I wanted to get tested but couldn't as I too wasnt leaking. I ended up going to have Cranial Sacral Therapy, just 1 session and I started leaking again. It certainly can't hurt to try Cranial Sacral Therapy, it might work the same for you, then you will be able to get the fluid tested.

Failing that, here in the UK they can do and MRI with flouresecen (sp?) to try show where the leak is, not sure if they do that in the US.

All the best.
Belinda

how can something that made you leak more help, Cranial Sacral Therapy is out there with the crystal wigglers in my opinion, squeezing my head in a vice might make me leak more but I would not recommend it but I know were your coming from , have they persponed your opp again missy ????

[MissyB]

Hi Vini,

I know what you mean. Before I went I thought it was in the 'crystal wigglers' pot as well but since experienceing it and seeing both cranitomies and spinal surgerys I understand it more. It does work with the pulsating flow of the CSF which you can see if you watch spinal surgery. Yes they do talk shakras which I never believed until having it done and seeing a number of the shakra colours well I can't deny it.

I'm not saying I'm 100% sold but that was my experience, I personally believe it helps to reduce the swelling in the meningies and in turn moved my brain out of the hole and allowed me to leak again... That's just my guess who can every really know. When you are desperate to leak to get tested you will try anything. No that doesn't help the problem but it did help get the answer.

No they didn't canx me again I had a 2 weeks wait from the last canx so in this Tues for surgery on the Wednesday. Here's hoping it all goes as planned.

Cheers,
Belinda

[vini]

hi Belinda good luck with the opp I too have a sound belief in the metaphysical, but a healthy mistrust of those who seek to profit from it

best wishes

[dagaz]

There was a guy that watched the forums for years and he had a theory that our CSF actually reverses flow when we yawn. I for one am one that after I yawn the csf pours out of my nose... just a thought try collecting it after a yawn. Please DO NOT put pressure on your leak site to try and collect it, because if you do happen to leak this way, air will more than likely fill the space ..very dangerous called a pneuomomenegecelle.. (spelling) It can cause a coma and death. I had surgery to remove a large mass of air sitting on my brain ( I think it might be back :eek: )

Connie

[vini]

There was a guy that watched the forums for years and he had a theory that our CSF actually reverses flow when we yawn. I for one am one that after I yawn the csf pours out of my nose... just a thought try collecting it after a yawn. Please DO NOT put pressure on your leak site to try and collect it, because if you do happen to leak this way, air will more than likely fill the space ..very dangerous called a pneuomomenegecelle.. (spelling) It can cause a coma and death. I had surgery to remove a large mass of air sitting on my brain ( I think it might be back :eek: )

Connie
thanks connie

this is something people with skull leaks must be aware of diagnosed or undiagnosed is that our leak site is essentially open to atmosphere and any thing that may causes a back flow is a potential risk I pointed this out once with reference to pressure chambers

are you scheduled for more imaging if you suspect air in your skull :eek:

[bpham]

Question about CSF leak. Do all people with CFS leak have headache all time time 24x7, of some of the time after certain activities like exercise, etc...?

I'm suspecting of having leak after Acoustic Neuroma surgery 1.5 years ago but do not have water leaking out of my nose, just some feeling that fluid is draining down my throat and definitely fluid in my middle ear (doctor drained it out 2 weeks ago, however, i have it now again). I do not have constant headache, just sometimes, and I do feel better most of the times after stair master exercise at the gym. However, I do have issue with tinnitus, and some neck stiffness (not pain). The issues that bother me the most is the pressure or pain when I lay down looking up when sleeping and the sensitivity to loud noise in the left side even though that ear is 100% deaf.

Thanks for any feedbacks.