Hey! I'm new to this forum, although I've visited before. Just wanted to see if there are others who have been dealing with a CSF leak. Seems this is a rare and often misunderstood/misdiagnosed condition. I'd like to find a doctor who is familiar with spontaneous CSF leaks and how to locate them. I started having intermittent headaches about 5 yrs. ago with the classic relief when lying down, I'm now 26 yrs. old. Last summer I was able to convince my neurologist to get me tested and get a bloodpatch. It was a horrible experience, I had 5 spinal taps before the doctor reasoned that he wasn't going to get any spinal fluid. It seems that my pressure was so low that there wasn't enough to take a pressure reading. So I finally go my bloodpatch, which seemed to work for about 5 mons., until slowly the headaches came back. I was scheduled for a CT myelogram (sp?) but cancled it after mysteriously having a week pain free...weird but I'm back to the usual headaches and will hopefully have the test next week. Has anyone had a similar experience? And if so what treatment has helped? Thanks!

jmilphoto,

I do not have CFS Leak, but I am interested in nutrition. Somewhere else I read that CFS Leak may be associated with hypermobile joints. Is that something you have? If so, nutrition to support connective tissue health could be very helpful.

There are two things I would suggest that you consider. One is magnesium supplementation. I am taking Ionic-Fizz Magnesium Plus. I find that it is very effective. The other is chicken soup made with plenty of skin and bones, or soup made from beef bones - plenty of gelatinous protein.

I wish you all the best.

jmilphoto,

To see if you have other symptoms that point to an underlying connective tissue disorder, you might want to check out the connective tissue disorder site:

http://www.ctds.info/index.html

hello neuro talkers
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

Your body continuously makes CSF fluid, and reabsorbs it normally at the same rate it makes it, thus keeping the pressures in your head stable, some people need a shunt due to making too much and the pressures getting too high which if very dangerous and can cause a lot of the symptoms you are describing. You can also have serious pain from low CSF fluid caused by a leak, kind of like your brain sinking as it cannot maintain how it is supposed to float in your head. Either way the pain is intense and of the two I would suggest the High Pressure is worse than the low on how quickly the damage can occur but either way high or low it can cause damage.

I hope this helps. I suffer from a CSF leak myself, exasterbated by other issues.

That CSF should go back is heal it self or need an operation...
Coffee helps from big headaches cos push blood pressure up to head and squeezing out liquid, other wise air gets suck in and bacteria triggers super Headaches!?!? Hallelujahs
I'm just discovered I have an leak for 2.5 years..and doctor my doctor suck!

Regard Mac

I have just recently been diagnosised with spontaneous csf leak. I was in the hospital for 1 month. Currently I am at home on bed rest. Doctors are hoping the tear in the dura will seal on it's on. I have also had 3 spinal taps, but were unsuccessful at finding exactly where the tear is or get any spinal fluid at all. I do know that the tear is in my neck, but unsure how big a tear or if it is in the front or the back. I am willing to go anywhere for some answers.

I stumbled upon this site yesterday 2/18/09 while looking for more information on a great dr. I just saw at Cedars-Sinai in Los Angeles. Dr. Schievink is wonderful as I just got back from LA 1 1/2 wks ago after he attempted to repair a CSF leak on me. It sounds like you would be a great candidate for him. He is very easy to get in to see as he seems to work his patients in very quickly. He is extremely busy but his whole goal seems to be getting those with a CSF leak repaired.

How long did it take for your symptoms to go away? I had a seond BP with Dr. S a month ago. I do not have headaches now but still cannot walk far without feeling aggravation in my head and still have numbness, nausea, chills with lowered temperature and some draining feeling by my left ear. My symptoms are worse in the morning as I believe I may leak a little at night but then build fluid during the day. Any answers you can give me would be appreciated.

Thanks,

Mary

Hello everyone - My daughter was in a car accident almost 5 years ago. Four years ago, after many visits to doctors, she was finally diagnosed with a mild to moderate tbi. We have spent these past years doing whatever needed to be done. At this point, we are dealing with many, many endocrine issues as a result of the tbi. She has mentioned to most of the doctors she has seen about this fluid that comes from her ear. It used to be more red/clear and now it is pink/clear. She has also asked almost from the very beginning about this "crackling noise" that she feels is coming from the back of her head. Has anyone hear heard that noise? Has anyone here had the ear leak? We were told to see a neuro-ent. Waste of time, he prescribed flonase and told her that csf was only nose. Also, if anyone knows of a doctor WHO WILL LISTEN in the New York, Connecticut, Massachusetts area I would most definately appreciate the help.