I meant Fillough.....could you elaborate?

[GingerLox]

Please forgive my misspelling!

GLox

[dagaz]

Hi, sorry I don't post on here very much any more I don't know very many people. It's good I guess maybe the others had better luck than us. My leak is Cranial, from sneezing after a brain tumor removal bi-frontal wise:( . I've given up hope that it will ever be repaired because the neurosurgeons are throwing their arms up in the are because nothing works! My crainiofacialcraniotomy just made the leak or leaks worse. I can be making dinner slicing vegetables and just having my head forward for a minute causes my csf to make a pool on the cupboard. I lay flat for 80% of the day, and can't use a pillow at night. Life is just peachy, I hope things get better for you...

[Concerned Gal]

Dagaz,

I'm sensing you are having a particularly bad time at the moment. Just wanted to let you know, you are in my thoughts. And if you ever want to chat/vent we are here.

[Fillough]

I am really sorry to hear about your dilemma. As of this week, mine is recurring. I will explain.

I had numerous tests to evaluate what was wrong. A radionucleide cisternogram confirmed the leak. I will say this. You are your best doctor. My neurologist at the time was very unhelpful. They just don't see many spontaneous leaks. So getting them to understand that my headaches were not migraines was a fight in itself. I asked for the test, as painful as it was, to check to see if radioactive dye injected into my spine leaked into cottonoid pledgets inserted into my sinuses. The numbers showed that a certain pledget has the highest levels.

A beta-2 transferrin of nasal secretions test showed that I had CSF fluid in my mucous. I had to ask for that test as well. The neurosurgeon I was referred to did not realize that any presence of beta-2 in the nasal secretions is considered poisitive. It is just not normal procedure.

I fought with my insurance company to allow me out of network to USC ENT department. It took almost a year to approve the CSF leak repair using flourescine to show the leak. Had I not held out for the flourescine, it would have never been found. It was a 1mm x 1.5mm hole in the right sinus vault caused by a bony defect. No other West Coast hospital had done this specific procedure at the time.

The surgery was in August 05. It has been a rocky road but a Godsend. But a couple of months ago I noticed that I was leaking fluid out of both ears intermittently and having leaking out ofthe sinus when I wake. I had a beta-2 test again. But I am having speech memory and balance problems that are getting progressively worse. So it looks like the fight is starting again. This week has been especially bad.

For your sake Ginger, I would look into having a high resolution CT scan as it does not involve a lumbar puncture and is apparently more effective. If the leak is found in the sinus, do not have a craniotomy. An ENT can use your turbanate to create a patch. I guess mine is just going in for 10,000 mile tune-up. I am certainly not looking forward to it. But I have no choice.

I hope and pray you can get some relief. At least the patch has bought me some time.


Fillough

[Edward]

Hello Fillough,

This is "Ed." I just read your story and figured I should talk to you. I am undiagnosed as far as a leak goes but I am sure I have one. I sustained a skull base fracture five months ago and since then have had fluid in my ears that occassionally drips down my throat or out my nose. I've never had enough fluid for a beta transferin test though. Before long I will have a cisternogram that will hopefully show the problem.

I am curious about something you mentioned. Do you actually have fluid coming out of your ears? All my fluid is just trapped inside the ear on the other side of the ear drum and from what I have read, this is normal with a CSF leak unless you have a perforated eardrum or something.

Take Care...Ed.

[Fillough]

Dear Ed,

I went to my GP yesterday and am starting the process of being referred to USC ENT again for probable surgery. Among my symptoms are substantial drainage from the nose a few minutes after awakening, vertigo, trouble with memory, speech (my voice is now hoarse and weak), slurring when tired, problems with finding a word and then saying another, blurry vision, headaches, and coordination difficulties and varying body temperature(as low as 92.5 degrees). But also, I leak clear fluid out of both ears periodically as if it were Swimmer's Ear.

My doctor says that without a perforated eardrum it cannot be CSF fluid. He examined both ears and saw no tear. But I read other posters to BrainTalk that are having the same problem. They think we are crazy, but it is there. Well, I am not crazy. Since it drains on the side my head is on the pillow, an outside fluid source is not possible. Is it some other fluid, maybe. But why do I have my CSF headache after draining the fluid. I can feel the pressure building up. Before my surgery, the pressure in my ears was unbearable.

We may not be doctors, but I guarantee you that time will bear out my claim that a non perforated eardrum can leak CSF fluid. Especially considering yours is through trauma Ed, I would definitely not exclude the possibility. There are just not that many cases that seem to make it worth a full fledged study. The doctors I have dealt with such as GP, Neurosurgeon and a local ENT and one uncaring neurologist were not aware of many of the tests and symptoms. A very good neurosurgeon I was referred to felt my Beta 2 test was negative because it was "within the range of normal". Until I reminded him that the presence of any Beta 2 in nasal secretions was a positive test. So I will repeat this again and again. You are your best doctor and your best advocate. No offense to the doctors who are doing their best.

I hope I have helped you. I wish you and all of us in this forum the best and pray that we can be cured so that we are only here for support. Wouldn't that be great. It is very difficult for the unafflicted to understand our struggle.

Keep the Faith Ed and God Bless You,

Phil

[Edward]

Hi Phil,

I am sorry to hear of all your symptoms. I am starting to think that anything concerning the human body is possible and that there probably is a way in some people for fluid to escape through the ear drum. Perhaps there is a microscopic hole that they cannot see that leaks only when the pressure gets great enough or who knows! I am becoming such a skeptic of just about everything medical-related that I read or hear. The medical institution likes to talk about tests and diseases like things are black and white - which could not be further from the truth. Most tests, as you have pointed out, are subjective. Many times diseases or conditions do not present in a classical or textbook manner. Many times patients have legitimate, yet unnamed, conditions or diseases. And unfortunately, again as you have pointed out, many times doctors are not up-to-snuff on the more rare conditions. All these factors leads to a lot of uncertainty and frustration. And yes, like you said, you really do have to be your own advocate - cause nobody else will be!

God bless you too. Please keep me posted on what happens with you.

-Ed.

[GingerLox]

Dear Phil...........Thank you for posting. I found this quote from an article from emedicine regarding csf leaks. I am sending the link to the article. It states this;

....CSF in the middle ear drains to the nose in the presence of an intact tympanic membrane.

I'll try to write more later, but wanted to get this to you now!
http://www.emedicine.com/radio/topic139.htm

Even if we never had written verification that a leak through the ear is occurring, many of us here know for a fact that this is happening to us. I can't wait for one of us to get a doctor to admit that they determined that the fluid IS flowing out through the eustachian tube in lieu of a hole in our tympanic membrane.

GingerLox

[Edward]

Hey Ginger,

You said it. From my experience so far, the doctors act like if a leak cannot be seen then they are not concerned whatsoever. "Out of sight...out of mind" I guess. I even directly asked a neurosurgeon once about a leak going down the eustachian tube and he essentially told me that was a ridiculous notion. I truly feel sometimes like the only way I will prove I have a leak is to wait long enough to get meningitis. Then, assuming I live through it, I can go back to the docs and say "I told you so...I told you so.":D

Are you any closer to having your next test done?

Take care....Ed.

[Fillough]

Dear Ginger,

I have been redirected to my neurologist before they will send me out of network to USC. I am going to take the article with me plus a list of the symptoms I am having which is quite extensive. Ginger and Ed I sure appreciate the encouragement. Two weeks ago I logged in to support others and now I am back to where I started three years ago. If I don't get treated soon, the graft in my sinus will blow completely and the results are disastrous.

Thank you again and God Bless You Both,

Phil

[hydromom]

Hi

My son is a shunted 7 year old named Rafael. They want a sample of the fluid but he does not knowhow to blow his nose. I asked the neurosurg if I could bring him in when it gets bad so that they could suction in the hospital and he said no, it should be mixed with mucous. Am I to understand that ti does not matter if other fluids are present. If so, I need to get my son's nose suctioned and get on with treatment. The neurosurgeon has never seen a child with a spontaneous leak before. Well, he suffered from 4 to 6 with a faulty shunt so I believe the fluid found a way out!!! Some doctors do not believe in prevention, just treatment. It makes me mad.
Thanks...Please respond
Marilou
Good Luck with all your issues, I pray for a quick diagnosis for everyone.

[hydromom]

I meant to say that the sample I submit should not be mixed with other fluid.
It's Late
Sorry
Marilou

[barngoddess]

HydroMom--
My leak started out through one nostril, but once my brain hemmorhaged, it was trying to find any outlet so it also eventually came out my left ear (which is where I had the shunt). My doctor told me that it would find the path of least resistance to get out.

I originally saw an ENT doctor who diagnosed my CSF leak. I do not know if they can suction it out or not. My leak is not spontaneous. It was due to when having the shunt put in they drilled too close to the bone and that caused the leak for me--it just went undetected for years and years. When the headaches were getting SO bad I learned that pressing on my ear gave relief and then noticed fluid coming out when I did this. It relieved my head aches and that is all I cared about really--I had no idea I was leaking brain fluid.

I made a lot of calls to doctors after this to find ones that had any dealings with CSF leaks at all.I changed doctors a few times too when I realized they did not seem to know as much as I had learned on this site about them, until I found the right one who had plenty of knowledge on the subject. He then referred me to the neurologists and neurosurgeons I needed to see.

My advice is that you should call every doctor in your vicinity and ask specific questions about their knowledge of leaks. I will have you and your son in my thoughts and prayers!!!

One more thing---I no longer have a eustachian tube on the left side and it is very difficult and frustrating to blow my nose too--of course your child may be due to his age, but if he is missing a eustachian tube it is difficult to re-learn how to blow out. There are times I just sit with kleenex and try and practice blowing--I'm 41 now and have been blowing my nose for ages, so it's been a real trip trying to learn this simple task!! But it can be done, just not on demand like we are used to---

Again, Raphael will be lifted up in prayer and I will specifically be asking God to help him learn to blow his nose--that sounds silly, but I am very sincere!!