CSF Leak - Is this normal?

[JanEllen]

I am a 42 year old female who has just been diagnosed by my ENT with a CSF leak. She has since referred me to a specialist at Emory University in Atlanta and I was told he was the only doctor in my state (GA) who deals with this issue. My appointment with them is not until the 24th of this month. We are not sure how this could have occurred - the only trauma having been a dental incident in  October where the dentist, using the normal power/air tools used during a root canal, accidentally gave me an air embolism to the right eye area. It healed after several days and I never gave it a second thought.

My CSF leak is only in my right nostril (same side as the air embolism). I leak upon leaning forward or doing anything slightly strenuous. When I lie down, I can feel it leaking down the back of my throat and it sometimes awakens me from my sleep making me gag or cough. This has all been going on for about 2 months. I also have popping in my ears, headache (more of a real "tightness" feeling in my head and neck), and very very mild nausea from time to time. All of this is combined with fatigue...I just want to sleep a lot.

Is this normal CSF related stuff? Is there anything I could be doing in the interim to help alleviate some of the discomfort? I know it's hard to "diagnose" over the internet - but anything you might be able to offer in the way of knowledge of this condition - anything to help me cope until my appointment on the 24th, would be greatly appreciated.

[Cleveland Clinic]

Thanks for the email and not sure I have much else to add at this point. It sounds like they found the source of the leak and you will have it repaired. When patients loose CSF they usually develop intracranial hypotension and not high pressure as one of the readers suggested. In these cases the HA resolves when lying and increases when up. Some patients with spinal leakes end up have lumbar drains placed as well. Sounds like you are in good hands at Emory and I trust everything went well with the surgery, GS

[alchris]

Hi how did she diagnosis you.  You can get spontaneious leaks and it cause headaches 24 hours a day and depending on the leak intermitent of a constant leak.  Did you have lumbar puntucre, or MRI to tell or did they test the fluid.

[JanEllen]

She tested the fluid. It came back positive.

[JanEllen]

Hi Dr. Carone, thank you so much for responding.

My leak began about 2 months ago. At first it was nothing more than just the dripping nose when I leaned over. As of the last week though, I am having some headaches - most of which are mainly just a really "tight" feeling in the back of my head. I find it hard to get comfortable even when lying on a pillow - it feels like I am laying on a brick sometimes. Maybe it's just stress. I do know that yesterday afternoon when I was driving home from work, I felt a little disoriented and panicked. I wonder if it actually had to do with the leak or if I was having what some may call a panic attack? (never had one - there's a first time for everything, I suppose...)

I have called the specialist's office and asked that if they have a cancellation before the 24th if they might be able to work me in. They said they would let me know. Meanwhile, I just sit here with my head feeling like it's in a vice-grip and wait. :-P

[MsMisunderstood]

Jan, thanks for letting me know I'm not alone. I just got insurance again and have been having this leak since the beginning of May.  It's gotten worse and I too feel like my head is in a vice.  I hope we can keep each other informed.

[JanEllen]

Hi all, thanks for responding - especially Dr. Carone, I really appreciate your taking the time.

I have been trying everything I can think of to alleviate the headache/nausea. I've been doing bed rest as much as I can and avoiding the sneezes, coughs, nose blowing, etc...but the leak seems to be worse? Usually when I would wake up in the morning - I would get about 4 or 5 drops out my nose, now as of this morning I am up to around 10-12. It seems I get this "gush" when I have been lying down for awhile and the stuff has a chance to "pool" for lack of a better term?

How much is too much? I am counting down the days til my appointment on the 24th. I thought about going to the E.R. beforehand to see if they would do scans or something but I didn't know what to ask for and don't want to get useless stuff that my specialist wouldn't be able to use. I just hate waiting for an appointment for so long, fully realizing that I still won't have a solution because they will just talk to me for ten minutes and then have to send me elsewhere (more appointments - even longer delay) for scans or whatever. I guess I am getting a little impatient - can you tell? ;-P

All this time I am missing work - and I am a graphic designer (contractor), so I don't get paid when I don't work. I also have NO insurance. (sigh)

[juleni]

Dearest JanEllen,

Have you looked into intracranial hypertension or by its other name, known as pseudotumor cerebri?  You have several symptoms of it (including CSF leaks).  Especially the headache you describe.  Please see:  http://www.ihrfoundation.org/ , and also http://www.pseudotumorcerebri.com/ and especially, http://groups.msn.com/pseudotumorcerebri/_homepage.msnw?pgmarket=en-us (The MSN Group for Pseudotumor Patients).  You will learn a lot at those web pages about this condition, or disease.  Please read through them.

Sincerely,

Julie

[JanEllen]

Hi everyone, thanks for your input.

Well, I saw the specialist on Friday and am scheduled for surgery to repair the leak tomorrow morning - yes, that quickly! I was amazed they could set it up so fast, but also relieved that something was finally being done. They were able to use the CT Scans I had from my E.R. visit (I finally went!) and had a basic idea from those of the general area of the leak - then the specialist (he's an otolarygolocist (SP?)...) used this long rod thing with a camera on it and stuffed it up my nose in the office on friday (and even though they supposedly numbed me - I still felt it...ouch!) and found where it was actually leaking. I got lost somewhere around words like sphenoid sinuses and cribaform layer? Anyway, just glad to be getting it fixed. I'm naturally anxious about my surgery in the morning though. They told me I would be in the hospital overnight and then out of work for a couple of weeks. I cannot imagine what kind of pain I may be in afterwards - yikes!

I will report back here when I find out more about what all was involved with the repair and where exactly the leak was.

Thanks everyone,
Jan

[[e-mail]]

Wow, what an ordeal.  Kind of sounds like mine.  October of 2006 I had ear surgery called a stapedectomy to repair my hearing loss. Well, that doctor never treated an infection I had and I'm now deaf in my left ear.  Since then I have had numerous episodes of "stroke" like situations where my vision in the corner of my eye blurs and then I can't seem to speak or make any sense whatsoever.  Then, in June of this year, I went to the chiropractor for an adjustment and then all kinds of new things arose.  I would be just sitting and all these weird sensations would take over my entire body from head to toe...almost like heat and numbness and tingling.  So that started the testing.  3 MRI's, 2 CT Scans, and blood work that would kill a cow!  Finally, my neurologist did a spinal tap and found low fluid pressure.  That is when the did blood patch number 1, well I ended up back in the hospital 4 days later with the same symptoms.  Major neck and lower skull pain and pressure that builds up in my head that makes it feel like it will explode.  I also have sinus pressure alot and it feels like my ears are pushing outward.  I have been down for 2 1/2 months now and I have had huge doses of steroids too.  I was on topamax in the very beginning of this and it seemed to be a little helpful.  But at this time, I'm only on klonopin for anxiety.  What is it?  What can I do?  I can't seem to stop these feelings no matter what I do.  Is something really wrong?  Is there someone else I should go to?  I live in Connecticut so I'm not really near huge cities or anything.  If there is anyone with any insight please, I am so desperate I can't even begin to tell you.  I have two small kids that have lost their very energetic mommy and I'm losing it!

[JanEllen]

Surgery is over and I am recuperating at home. My nose is still packed and I have a lot of nasal congestion - but can't blow my nose. FUN!

Anyway it turns out there were three little holes really close together, almost forming a tear. If I understood correctly - it was a difficult surgery for them because of the location of the holes and defect. The holes were in the cribiform plate - so gravity was against us. They had to form a patch out of cartillage and stuff taken from another area in my sinuses (again, hopefully I understood correctly).

I can't tell much of anything from the description (medical coding) of the procedure on my paperwork - check this out...Dr. Carone probably understands this - I do not.

31255: Nasal/Sinus endoscopy, surgical, with ethmoidectomy, total (anterior and posterior), 31288: Nasal/Sinus endoscopy, surgical, with sphenoidotomy, with removal of tissue from the sphenoid sinus, 31256: Nasal/Sinus endoscopy, surgical, with maxillary antrostomy, 31290: Nasal/Sinus endoscopy, surgical, with repair of cerebral spinal fluid leak, ethmoid region, 61795: Stereotactic computer-assisted volumetric (navigational) procedure, intracranial, extracranial, or spinal (List separately in addition to code for primary procedure), 20912: Cartillage graft, nasal septum

There was a typo on my paperwork - said they were to repair a CSF Leaf. LOL! How'd I get a leaf up there? (grin)

[Brian's Headache]

Hi my name is Brian ,i'm a 44 year old male . Nearly 12 months ago now ,while working in the demolition industry, i suffered a headache. This happened while i was in a bent over position, cutting a concrete floor. I'd been bent over cutting for approximatly 4 hours and stood up quickly to releave back pain/strain,suddenly i had a massive headache, to which i normally do not suffer from. I took some pain relief and continued my conrete cutting as my employer insisted i have it finished today ready for removal tomorrow. The headache did not go away, it got to the point where i could not cope with the pain, even effecting my eye sight. I had my lunch brake, to which i laid down and the pain eased and went back to work. After lunch i was loading out wheelbarrow loads of brick rubble, pushing them approximatly 50 m and into the back of a truck. My headache returned with a vengence, but in still managed to finished off the day. I went home and told my wife what had happend, laid down and went to sleep which was unusual for me.                                                                                                                                                      The next morning, upon waking, i still had a slight headache, but went into work anyway. Upon arriving at work i told my foreman that i still have the headache and was put straight back onto loading out brick rubble again. The headache became extreme,i took more pain relief ,once again telling my employer of the situation,but continued working. By lunch icould not cope with the pain any longer, i sat by myself in the lunch room with my head in my hands resting it on the table. I rang my wife and she told me to come home, i told my boss again,who was not impressed ,his father was making fun of me saying i just didn't want to push out barrow loads of rubble.                                                                                                                                                 Cutting a long story short ,i went my see my GP who thought i had a bleed on the brain a to gostraight to hospital. Once in hospital they ran numerous tests, even gave me a lumber punture to check for menegitisis. Test came back clear. They were stumped . I spent 11 days in hospital having more tests,lumber puntures,CT  scans, even MRI's. Coclusion was a CSF leak, i was given masses of tablets and released home on continus bed rest. As of today nearly 12 months later after seeing numerous speciaists/doctors i am still in pain. Unable to stand for long periods,bend over to pick things up as it brings on head aches. I've been told that blood patches may help,but my csf pressure has gone back to normal (when first tested in hospital it it was only 6psi). Also i 've been told that saline drip into my spine may help, but as pressure has restored it may be of no use.                                                                                                                                                      My question is, could this have been caused through my line of work? I have not been paid by my employer's insurance company in 12 months as they say work had nothing to do with my injury. Living on benifits is not living ,its bad enough haviving the headaches. My young family does not understand why their dad sleeps most of the time. Also what other non-invasive treatments are there out there for this , I have been told it could take months or even years to settle down or maybe not at all !

[Bits88]

I need help in finding an excellent Dr. anywhere in the United States than can deal with CFS.. of course I am looking for the best. I have been suffering and finally found, thanks to your forum, what this pain and discomfort is..I have been plagued fro years off and on by this and this time it is almost unbearable.. I need help in finding someone who can help and give me quaility to life back. Thanks Bits88.

[Bits88]

Thank you for your forum.. it has given me hope. I have been from Dr. to Dr. and no one has given me a diagnosis. When I red some of the letters in this forum.. i felt as if I'd written them myself.. finally I feel as though I have some hope in at least getting correctly diagnosed. The not knowing has been hell. I am searching for a Physician who specializes in CFS Leaks. I live in St. Louis Mo. and have access to wonderful health care. There's Barnes-Jewish , the Washington University teaching Hospital.. I know people come from all over to be treated there for various conditions. I also have at my fingertips St. Louis University Hospital , as which you know is also a teaching Hospital, with an excellent reputation. I'll go anywhere in the US. to be treated.. can you or could you give me some recommendations of Hospital and Drs ? and if you are unable for what reason where can I go to find someone who can help me with this.I need resources... I really need some help.. I am reaching out.. Can you help Me?Please!!!!!!!!!!!!!                    Bits88

[pian]

I suggest and I’m begging you to create a site where the symptoms can be enumerated and possible diagnoses can be given.  That would be a great help to both the patient and the doctor and your site will surely increase in popularity. I'm suffering from sleep deprivation eversince my accident last 6Sep03 which left me deaf and disabled (because I'm not able to balance probably because I’m deaf).  I think a brain trauma resulted in having to suffer what the neurologist in the Philippines termed as myoclonus where I couldn't control my right hand.  Although I could control my left hand, I couldn't control the tips of my fingers that's why I eat like a pig.  I've undergone Occupational Therapy in 2 hospitals in the Philippines but I feel it's not helping me for the Therapist just tells me to relax.  I asked myself, is this how you conduct Occupational Therapy to your patients where you just tell them to relax to achieve control?  I feel using Psychology to cure something Physiological is inappropriate.  What is happening to me is purely Physiological.  That's why my Father and I researched the internet often.  There's one drug that my dad researched and the doctor heeded, it's called Piracetam (generic name Nootropil).  It helped a great deal to reduce the shaking, but after a while, its effects weren't as dramatic.  I think my body has developed immunity which I also read holds true.  I’ve taken a drug my dad researched for Myoclonus called Sodium Valproate whose side-effect is that it makes you feel drowsy, I thought this was what I needed for I'm not getting enough sleep.  There are times when I couldn't sleep at all.  I’ve read in the internet that lack of sleep is not age-related (which is a common misconception) but a symptom, so that what is happening to me is most likely related to my accident.  I’ve taken Clonazepam (which I read was the first drug of choice for Myoclonus) for quite a while but it doesn't seem to work.
Before when I would attempt to button my blouse my nail bled and my right fingers would hurt.  But I think thru constant practice and the right medication this doesn't occur anymore.
I was prescribed an anti-depressant to deal with my sleep disorder but it didn’t work.  My current neurologist doubled the dosage combined with an anti-epileptic/anti-myoclonus drug and after 2 days I took a medication for Parkinson’s she also prescribed and this caused me to fall asleep earlier (really fall asleep) although I still wake up early, I still could not control my hands, and this effect lasted only 2 days.
People think my problem is not a big deal, but it’s really bothersome for me, because even if my eyes are really sore, I still couldn’t fall asleep.

[allcolorsofpink]

Have MRI done and have them check for Chiari Malformation to see if brain stem is herniated and if is, what mm it is. If it is hernitated, decompression surgery could alivate all your symtoms.

[Brian's Headache]

just to add to my story. Approximatly 4 weeks before my headaches began I had a lower back injury , to which I received physiotherapy for 3 weeks. This involved realining my spine. Also 7 years ago I had a bus knock over a brick wall while at work. The wall fell onto my head leaving a 3" gash on the top of my head. I was out to it until the ambulance arrived. Taken to hospital , received 8 stapples to seal the cut , but no x-rays . I had a massive headache for about a week. Could any of these caused a weakening of the Dura? Oh well hope someone can help me solve this puzzle. I just want rid of the headaches so I can return to work and get whats owed to me

[Katybug57]

Hi Bits88, so sorry to hear that you are having trouble with a CSF leak.  I have been suffering with my own CSF leak since June 2006. No trauma or accident.   Mine is a spinal fluid leak, confirmed via Myelogram and MRI.  I have been treated at a large teaching hospital since November 2006 with no resolution.  I have done hours and hours of research and there are two Doctors in the US with extensive experience in CSF leaks, aka Spontaneous Intracranial Hypotension.  My Doctors in my State of Florida have dismissed me from their care, saying that they've never treated anyone with this condition (this is at the University Hospital).  My leak is on the anterior (or chest wall) side.   I am currently awaiting insurance approval (oh joy!) to see Dr. Wouter Schievink at Cedars-Sinai in Los Angeles.  He is an expert in CSF leaks.

http://www.csmc.edu/1091.html      The other expert is Dr. Mokri at Mayo Clinic in Rochester, MN.  

http://www.neurologyreviews.com/jan02/fluid.html

I hope that this information is helpful to you, and if you have other questions feel free to write to me.  Also, if anyone knows of any experts in Florida please post.  Just for your info I have been on high dose Prednisone since August 2006 and it is the only med that alleviates the pain in my head.  I am also on Cymbalta for pain, it has helped the intrascapular pain (between the shoulder blades).  Take care.

[Katybug57]

Hi Brian, have you had MRI of the brain and if so what did it show?  Is there meningeal enhancement and/or thickening of the dura?  Have you had a myelogram done of your spine?  I too have a long-standing spinal CSF leak.  Only someone who has experienced this type of headache can fully understand the intensity of the pain.  Please see my post above to Bits88.  To answer your question re: line of work I would think that such heavy labor may have caused your situation. Just for your info  I take high dose prednisone and it has allowed me to continue functioning, although my quality of life is greatly diminshed.  If I stop the Prednisone I am right back to square one which is bedridden.   Prior to taking Prednisone even morphine was of no help.    I hope that you are able to find the help that you need and get better soon.

[felcity]

I was diagnosed with secondary IH... pseudo tumor cerebri in 2005. Luckily for me mine was secondary, so once the trigger was figured out I quit having episodes. My neurologist in Atlanta, GA currently treats me on a long term care program. His Name is Dr. Bydar Syed 770-972-3002. He currently treats about 5 to 6 patients with verious CSF disorders. Also a great website to check out for information is http://www.ihrfoundation.org. They have published papers and forums that exclusively deal with hypertension diseases. Good Luck  - Leigh

[Brian's Headache]

Thankyou for the information. I have had an MRI it showed sagging of the brain, slight meningeal enhncement but no thickening of the dura.The specialist was ment to order a myelogram , I waited for 4 weeks and heard nothing . So I rang and rang only to find out he went on holidays and forgot to order it. He insted gave me another lumber punture (hate them) to which showed my csf pressure had risen back to normal levels . To this he added a myelogram at this stage would be of no benifit , that there was nothing more he could do for me. As far as pain relief he told me to see my local GP and to book into a Pain Management Clinic. Great help he was. My GP was shocked and told me that the Clinic had a 2 year waiting list. He is trying to help me prove it is a work related injury. Medications i have been on are, Stemzine, Indocid, Endone, Endep, Triprim and Panamax/Tylenol. My GP cut most of them now stating I may be getting residual headaches from some of them. The only ones I take now are Endep and Panamax.  Thanks again ,hope your symptems subside. Must go to show that Australia is behind the times as far as treatments go

[Katybug57]

Hi Brian, I can certainly understand your frustration.  The sagging of the brain and meningeal enhancement are common findings with a CSF leak.  If I were you I would pursue the myelogram, hoping to find the exact site of the leak.  Ask for a digital myelography, as they are more precise.  Just because your pressure was normal with one spinal tap does not mean that all is well.  If you are still having unretractable headaches and your brain MRI findings are abnormal,  then you most likely still have a leak.  Hope that this helps.  

[Brian's Headache]

[Brian's Headache]

Hi & thanks again, my last MRI was back in October 06 and January 07. Even then Specialists had not explained them to me properly. All I know is that they could not pin point the leak. One other thing is my ears went funny about 3 weeks after the initial headache  and I started to leak fluid out of my right ear. They did not seem overly concerned, but it worried me. But because they could not confirm the cause of the CSF leak, I can not claim my workers insurane. This makes it hard and makes all the treatment I should be receiving take so much longer, 6 months or so between appointments. Also through all the stress of the situation I've developed a rash on my arms. Skin Specialist said it's Stress and called itPrurigo Nodularis. Its very hard to treat. he said to reduce the stress in my life (oh yer), apply steroid creams to the spots and wrap in plastic 1hr at a time. Also UVB light treatments 2-3 times a week. Stress free hey! Thankyou again  

[Sandi08]

A related discussion, CSF Leak was started.