Monday, November 29, 2010
Everyone wants to know how I came to have this brain problem...so here it is!
I have a CSF (Cerebral Spinal Fluid) leak. A CSF leak is an escape of the fluid that surrounds the brain and spinal cord.
The dura is the membrane that surrounds the brain and spinal cord and contains the cerebrospinal fluid (CSF). CSF can leak from any hole or tear in the dura.
Causes of a tear in the dura include:
I have had chronic ear infections for about 4 years. They think those infections weakened the bones in my ear. Then about a month ago I hit my forehead rather hard. I immediately got a leak, like someone turned on the water faucet, from my right nostril. Turns out my whole right inner and middle ear cavity had filled with CSF (cerebral spinal fluid...aka brain fluid.) I have lost almost all hearing in that ear now and they do not know for sure if that will come back.
The moral of the story...it is not normal for adults to get chronic ear infections. Nor is it safe...too close to the brain. I have a hole in my dura (membrane that covers the brain and keeps it in place) and the CSF is leaking out into places it should not be. And on the flip side, that hole has opened up an opportunity for bacteria to get into my brain and I am at risk for meningitis until it is repaired.
If you get chronic ear infections as an adult, you should go to an ENT and let them rule out CSF leak. It can come out of your nose or ear, and is a watery consistency...not like normal mucus.
Spontaneous leaks into the middle ear are usually diagnosed by high-resolution CT scans. This may reveal discrete tegmen defects, which I have. These can be repaired via a middle fossa craniotomy. Surgical repair is used in patients with leaks in the skull, which I have.
Most patients have conductive or mixed hearing loss, the conductive component caused by CSF in the middle ear.
Everyone wants to know how I came to have this brain problem...so here it is!
I have a CSF (Cerebral Spinal Fluid) leak. A CSF leak is an escape of the fluid that surrounds the brain and spinal cord.
The dura is the membrane that surrounds the brain and spinal cord and contains the cerebrospinal fluid (CSF). CSF can leak from any hole or tear in the dura.
Causes of a tear in the dura include:
- Certain head, brain, or spinal surgeries
- Head injury
- Placement of tubes for epidural anesthesia or pain medications
- Spinal tap (lumbar puncture)
I have had chronic ear infections for about 4 years. They think those infections weakened the bones in my ear. Then about a month ago I hit my forehead rather hard. I immediately got a leak, like someone turned on the water faucet, from my right nostril. Turns out my whole right inner and middle ear cavity had filled with CSF (cerebral spinal fluid...aka brain fluid.) I have lost almost all hearing in that ear now and they do not know for sure if that will come back.
The moral of the story...it is not normal for adults to get chronic ear infections. Nor is it safe...too close to the brain. I have a hole in my dura (membrane that covers the brain and keeps it in place) and the CSF is leaking out into places it should not be. And on the flip side, that hole has opened up an opportunity for bacteria to get into my brain and I am at risk for meningitis until it is repaired.
If you get chronic ear infections as an adult, you should go to an ENT and let them rule out CSF leak. It can come out of your nose or ear, and is a watery consistency...not like normal mucus.
Spontaneous leaks into the middle ear are usually diagnosed by high-resolution CT scans. This may reveal discrete tegmen defects, which I have. These can be repaired via a middle fossa craniotomy. Surgical repair is used in patients with leaks in the skull, which I have.
Most patients have conductive or mixed hearing loss, the conductive component caused by CSF in the middle ear.
Tracy, this was very informative and helpful to those of us that don't get to see you regularly. Thanks so much for this and my prayers are with you and your support system.
ReplyDeleteAlan Talbert
Tracy,
DeleteI have a CSF Leak.. It's been going on since August. I was in the hospital in December for it as well. I'm allergic to the Contrast dye so they are talking about needing a Neurosurgeon to go through to find it and then I guess have the ENT repair it. It's somewhere in my sinuses they believe... I feel "pressure" in my sinuses and it leaks out my nose. Are you okay now? I'm nervous about the idea of surgery..
Yada...I am allergic to iodine but the contrast they use now is not iodine so you may be able to have it done. A good neuro-radiologist should be able to find it on CT scans of the head. I am in Atlanta...where are you? I have an excellent neuroradiologist at Emory, Dr. Pat Hudgins, and a Neuro-ENT, Dr. Danko Cerenko...they found my leaks but they were skull based so could not be repaired through my nose or my ear. If I were you, I would want a neurosurgeon to do it anyway!! My procedure was not that bad and I am healed now so it was all worth it. The problem with going thru the nose or ear is you may miss leaks. I had several leaks but they did not all appear in the images...the neurosurgeon found them when he opened me up and he was able to repair all of them!
ReplyDeleteGOOD LUCK!!!
Tracy,
ReplyDeleteThis is "yada" ... I fixed my profile name :)
I've been leaking since August.. At least that's when I noticed the leak. I was taking martial arts classes and got punched across the side of my cheek and nose(one hit that went across those areas). I noticed that my sinuses suddenly felt moist and that's when I started became aware of the random dripping. It went on for two weeks without any symptoms, so I just figured it was weird allergies or I had messed something up in my nose. After 2 weeks I suddenly felt a whip lash sensation when I was playing peek a boo with my son. After that was when the symptoms started... tingling, off-balance, weird fuzzy feeling on my skin, and more... I was sent to a specialist but by that time the leak stopped for a few days and he questioned if that's what it was. 2 months later, the leak started again and then the whip lash feeling happened after about a week. I was in the hospital for 10 days and they tried 2 lumbar drains, which was a bad experience in it's self. The second drain they tried, ended up being 3 attempts and took 45 minutes.. I now have leg pains from it... And after the 10 days, I was released because they pretty much ran out of ideas... Now it's started again.. I was sent for a followup the the 2nd ENT I saw that didn't quite believe it, but now that him, the ER ENT and one of the Neurosurgeon's that saw me in the hospital witnessed it at the follow-up they are finally showing some initiative. I'm not sure why he called the other doctor's over from the hospital at my visit, but I'm glad he did. I've had CT and MRI scans... and now even though the ENT said that he needs to coordinate with the Neurosurgeon, the Neurosurgeon is saying that he was sending me back to the ENT to figure it out.
They believe it was a spontaneous leak but I question that. I know I'm not a doctor, but I started getting migraines when I was young after some head trauma.. That's when I had my first spinal tap and they thought I had a possible hemorrhage in my brain then... If anything that is what I believed at least weakened the area and lead to the leak.. Not a punch (while sparring, so not at all a hard hit) to the nose that didn't even make my eyes water...
I'm glad to know that you have decided to write about your experience. The ENT started talking about having the Neurosurgeon cut open to get a look of where the leak is, then the ENT would go in and fix it. He didn't give me all the details.. I'm just frustrated because it seems to come in waves.. it's the uncertainty that's driving me crazy and the worry on my kid's faces when they see it leak.
I had 4 concussions growing up...the last one only 10 years ago. I think all the 'head trauma' definitely contributed or was a risk factor for me. I also had meningitis when I was in high school...another risk factor. When my leak started, I had bent over to pick something off the floor and hit my forehead on a bench. Hurt like heck and the leak was immediate upon standing up. I think I had had the leak for years but the bump finally caused it to come out of my nose and not into my ears (which was causing chronic ear infections!) In my case, the bump on the head was a good thing because the leak was obvious then.
ReplyDeleteAfter my surgery, I had a lumbar drain for 4 days. When they took it out, I had TERRIBLE pain upon sitting up. Had to get a spinal blood patch and thankfully, was better within hours. Lumbar punctures scare me now that I know how easily they can cause a spinal leak!!
Where do you live? I highly recommend Dr. Danko Cerenko if you want a Neuro-ENT to find the cause of and located your leak. He is in Atlanta.
On November 18th, I fell and hit the back of my head (top right side) while playing racquetball. I immediately experienced a rush of strange fluid from my right nostril. After getting my bearings with the help of friends, I went to the ER and had told them what happened. I also had a CT, which they said was clear, except for an "incidental" finding of fluid in the L Maxillary sinus.
ReplyDeleteI started to experience salty post-nasal drip and got really worried. My right ear also becomes clogged and I get the sensation that something is running out of it, even though nothing is. I don't get headaches, but the top of my head (in places other than where I hit it) has sore/tender spots. I saw an ENT (PA) and she put me on a 1 week course of antibiotics and did a CT of my sinus. The result was no leaks, no fractures, no infection.
I became weak in the legs, still had this constant, disgusting drainage and was cold (body temp below 97F). I went back to the ER and the doc there told me to try Claritin to dry up the drainage, which it did for the most part. I only took it for a couple of days and after two days of not taking it, my ear started clogging again. It's all very strange, because I don't have typical sinus symptoms, just the weird clogging of my ear.
I am going to see my regular doctor today and see what he thinks. Haven't even been able to see a Neuro yet.