my story

[vini]

hello all
I have had a head injury on the 19th of December last year were I got fractures to my, frontal / temporal / maxilla/ and orbital floor bones on the right side of my head I have no sensation in the right side of bottom eye lid/ nose top lip/ teeth and gum's also double vision in my right eye I came to in the waiting area of a hospital not knowing were I was or what had happen I could not see my phone so asked the receptionist to call my partner she said the police had phoned some three hours earlier and said I was in a bad way but was ok this was 3am my partner came out with my 7 year old when they arrived I was finally seen by a doctor I could not tell my left from right when xrayed I was given a letter to take to another hospital some 30 miles away ( the queen Victoria East Grinstead uk famous for its work WW2 fighter pilots burns victims known as the gini pig club) there I was scanned told the extent of my injury's they said they could not operate until the day after boxing day 7 days away they gave me some anti bots and pain killers and told me not to blow my nose ( No head injury sheet) a couple of days later I got a cough and cold every time I coughed I had clear fluid run out my nose (not mucus) from the cold about an egg cup full a day salty and thin clear liquid I now know was CSF leaking , I returned to the hospital for the op to fit 3 metal plates to the fractured bones I got into bed and told the nurse that I was worried about this stuff coming out my nose, she said can you make it come out so I coughed and it trickled out . she went and got the surgeon who done some neurological tests he said he could not operate and sent me for a brain scan I was to return for the op on new years eve which I did and the op was done the staff at the hospital were all very nice , but I am left with crushing daily head aches, short term memory loss, find it hard to think, low mood, and a salty taste at the back of my throat could this be the CSF leaking I have had to give up work as I could not cope with my job any more, I have an appointment on the 18 September with a neurologist , Can CSF leak internally ? will my symptoms get better if they can fix it ?
ps I was a victim of an unprovoked attack at a railway station but still have no memory of that night
kind regards Vini

[brainandspinalcord]

Oh my goodness Vini you have been through a lot. I'm just shocked that you weren't able to get better treatment from the beginning.
CSF is known to cause a funny taste (some call it metallic, or just gross!) and yes if you had a CSF leak you would be suffering terribly from a headache.
I wish there were some advice I could give you, if you were here in the states I'd say go to the ER but I'm not sure how the UK med. system works.
I can only keep you in my thoughts and hope the neurologist will be able to get to the bottom of this. Would it be possible to call early and see if you can get an emergency appt. any sooner than the 18th?

[jimc]

Vini, I've been active on the CSF Leak forum (http://brain.hastypastry.net/forums/forumdisplay.php?f=126) on this site for several years, and noticed your post. That forum is a great place to get info on CSF leaks.

CSF leaks can occur in two different places: the head, or the spine. The symptoms are quite different, as is the treatment. I've had both types several times, so I'm in the unfortunate position of being able to describe both of them first-hand.

A spinal leak causes a crushing headache when you're upright. It feels like your head is being crushed in a vise. The pain intensifies the longer you're up. The bigger the leak, the bigger the headache, and the sooner you'll get it. It can take anywhere from a few minutes to an hour for the headache to get really bad. Lying down brings relief. Caffeine helps a little, as does strong pain medication, but both of those just take the edge off the pain. The conservative treatment for a spinal leak is bed rest. If the leak doesn't heal, the next most common treatment is an epidural blood patch (EPB). There's also a treatment where fibrin glue is injected into your spine.

A cranial leak causes mild head pain, but not the crushing head pain that you get from a spinal leak. Instead, you feel fuzzy-headed and "out of it," as if you just woke up from an overly-long nap. CSF may drip out your nose, or down your Eustachian tube, and in some cases, out your ear. If it's dripping down your throat, you'll notice a very distinct taste. Some people describe it as salty, and some call it metallic. It doesn't take anything like the mucus that drips down your throat.

A common first treatment for a cranial leak is a lumbar drain. I've had this, and it's hell on earth. It's also very unlikely to work. They put you in the intensive care ward, stick a tube into your spine, and drain a bunch of CSF (e.g., 30cc) every 6 hours or so. This is like having a gigantic spinal leak, and your brain reacts by turning on every pain neuron it has. Most people get nauseous, even with anti-nausea medication, and this causes them to throw up. Throwing up causes a huge spike in your intercranial pressure, and this can cause your cranial leak to reopen and get even larger.

Other treatments include surgery to plug the leak (e.g., a craniotomy), and the installation of a shunt. Don't let them put a shunt into you until you talk to me and some other folks on the CSF Leak forum; that treatment has been a complete disaster for several of us.

Both types of leaks can be very hard to detect, even with sophisticated imaging. A common test for both types of leaks is a CT myelogram. They inject dye into your spine, tip the table you're lying on back and forth to slosh the dye around, then do a CT scan of your spine and head to see if the dye is leaking out anywhere. Sometimes, this pinpoints the leak, and sometimes it doesn't show a leak even when there is one. There's also a risk that you'll get a persistent CSF spinal leak where they stuck the needle.

Good luck.

Jim

[vini]

hi jim thanks for the info i think i may be leaking form one of the fracture sites or even my neck as i had damage there also, learning as much as i can, going into testing is a great help they are a real help over at the CFS forum i have pcs so not sure if it that or the leak it was a CFS leak i had coming out me nose think its now leaking down my throat

thanks for your reply

Vini :confused: