CSF Leaks and Spontaneous Intracranial Hypotension

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Biology 202, Spring 2005
First Web Papers
On Serendip

CSF Leaks and Spontaneous Intracranial Hypotension

F Michaels

Spontaneous Intracranial Hypotension (SIH) is a condition where a patient gets postural headaches due to a leak of the Cerebrospinal Fluid (CSF) in the spinal membrane. (1) What happens is that the leak causes low CSF pressure within the nervous system, and thus causes a constant string of headaches to the patient. The problem with SIH is that it is very hard to diagnose and there is not a great deal of information on why it occurs. In 1995, a study showed that only one in fifty-thousand people in Minnesota had SIH. It also showed that SIH was more common in women than in men, and that the condition usually developed while the patient was between 40 and 60 years old. (5) When first researching this condition, my two main questions were: Why does it develop and can it be cured? In order to answer these questions, one must first examine how CSF runs through the body and the specific symptoms of SIH.

Cerebrospinal Fluid is formed in ventricles of the brain. It moves through the ventricles and leaves the brain at the base, underneath the cerebellum.(2) Then, the fluid moves into the spinal cord and the nerves, and finally returns to the brain. Throughout this time, the CSF is moving through a membrane, called the dura that surrounds the brain and spinal cord. The condition of Intracranial Hypotension (IH) develops when a rupture occurs in the membrane. Thus, the CSF leaks out of the dura, causing a dislocation of the brain downward and "pressure on pain-sensitive structures."(5) IH can develop as a result of brain surgery, spinal surgery, or any major trauma to the head. (3) However, as in the case of SIH, the rupture can sometimes occur spontaneously. In other words, there is no known cause for the rip in the dura. Some doctors speculate that the spontaneous tear is due to the initial weakness of the dura, or a traumatic event that went undetected; however there is not a great deal of information on this subject.(5)

The principal symptom of Spontaneous CSF leaks is headaches. The headaches only occur when the patient is upright, and gradually disappear when the patient is lying down. In most cases, the headaches gradually increase from the moment the patient wakes up in the morning. However, in other cases the headaches are quick and severe. The acuteness of the headaches varies in each case, which affects how quickly the condition is diagnosed. Some of the related symptoms of SIH are a loss of hearing, tinnitus, vertigo, stiffness of the neck, nausea, and even vomiting.(5)

Since the primary symptom of SIH is constant and severe headaches, it is often misdiagnosed. Unfortunately, misdiagnosis can increase the painful treatment for other conditions that imitate SIH (such as Chiari malformation) as well as the possibility for early treatment. In a study done by Dr. Wouter I. Schievink between 2001 and 2002, he found that 94% of patients who had SIH were initially misdiagnosed when they visited a doctor about their symptoms.(4) Some of the common treatments due to misdiagnosis included craniotomies (surgical incisions in the skull) and cerebral arteriographies (a procedure that uses an injection of dye and x-ray images to examine arteries in the brain). More than half the number of cases of SIH has been reported in the last decade.(5) Therefore, because SIH is so often misdiagnosed, it is not likely that there has been a drastic increase of the condition, but rather that more cases of it are being correctly diagnosed.

In some cases of SIH, the condition disappears as spontaneously as it appeared. Mild cases can be cured through a general increase in fluids, especially caffeine, and lots of rest. However, more serious cases will require a procedure called the epidural blood patch. This is a procedure where autologous blood is injected into the patient's lumbar spine. The blood travels through the spinal cord, finds the rupture in the dura, and clots the rupture. Success of the epidural blood patch in patients with IH can usually be determined immediately after the procedure. If it is not successful, the procedure can be repeated several times with a larger amount of blood injected (no more than 30 ml) and in many cases can lead to a permanent closing of the torn dura. (5)

However, in more severe cases of Spontaneous Intracranial Hypotension, the epidural blood patches that are injected into the lumbar spine are ineffective. At this point, an effort to locate the exact position of the rupture in the membrane can be made and then another epidural blood patch may be performed at that location.(5) This location-specific procedure is more effective than a regular epidural blood patch, and should cure the condition. However, there are a few cases where even this procedure is not successful. Further procedures to resolve the issue include an injection of fibrin glue into the specific location of the rupture and (in the most persistent cases) even surgery, both of which seem to cure the condition.(5)

In conclusion, Spontaneous Intracranial Hypotension is a very rare type of a Cerebrospinal Fluid leak, but unlike other types, it does not occur due to any specific traumatic event or surgical procedure in the nervous system. Although there is not much information on the possible causes of SIH, it is suspected that an intrinsic weakness of the spinal membrane or an abnormality of the brain structure causes the rare condition. The symptoms of SIH are so small and so common, that it can often be misdiagnosed. Therefore, the condition of SIH, although thought to be very rare, is probably more likely than one might think. So how can someone prevent SIH? Is there anything a person cando to prevent the rupture of the dura? Unfortunately, there is no clear answer because very little information exists as to the primary cause of the tear. All one can really do is avoid brain surgery or any head trauma that could trigger the onset of regular IH. Hopefully, as more observations are gathered about Spontaneous Intracranial Hypotension, the causes of it will be identified and the ways to help prevent it will become more apparent.

 

References

1)Abstract of two cases by T.A. Rando and R.A. Fishman, general information on SIH

2)Discovery Health: CSF leak, general information on Cerebrospinal Fluid leaks

3)University of Maryland Medical Center, general information on Cerebrospinal Fluid leaks

4)Archives of Neurology, Abstract of a study on the Misdiagnosis of SIH

5)Medscape: Spontaneous CSF leaks, A review by Dr. Wouter I. Schievink

 

 

Continuing conversation
(to contribute your own observations/thoughts, post a comment below)


08/31/2005, from a Reader on the Web

I have had this exact problem. It started in February 2004 and I have had it and the really bad headaches since then. Just recently, my headaches has subsided. A little background: I woke up one day in February 2004 with a excruciating headache. I went to numerous doctors and they all said it was migraine headaches. They gave me many different pain killers and nothing worked. Finally I went to a neurologist. After giving him my simptons, he said "let's check your spinal fluid." He then proceded to put a big needle in my back to check and have my spinal fluid analyzed. He got very little out of my back. He had a lab run some test, but everything came up negative. He gave me some pain killers, that did not work and then that was it. So I went to this other neurologist and he said that he had a patient two months prior that had the same condition and we should try a blood patch. Did that and that did not work, he had me try it again and that did not work. He then suggest that I check into the hospital and run a boat load of tests. He then consulted with another doctor and with all the different tests (MRI, Cat scans, etc) noticed that I had holes in the back of my neck. Both doctors decided that I would stay in the hospital and have my spinal fluid drained every hour and lay flat in the hospital bed to see if the dura would close. After a week and a half in the hospital, they did another test and some of the tear closed but I still had some still torn. (Mind you, I had many tears in the back of my neck and slightly down my spine). I was released from the hospital with the same headaches and continued to live with them until this day, though less severe. When I read your piece on spontaneous leaks, I could not believe that I am not the only one out there that has this problem! THANK YOU!!! I don't know what caused my leakes, I have had no trauma, nothing so I am at a loss. I would love to be able to talk to someone about my case and maybe sent my doctor's and hospital's records to you to put in your database to help other people. Lastly, I just read an short article about the actor George Clooney that had the same thing. I would be great to here more on this subject. I a wait your response. Sandra


11/10/2005, from a Reader on the Web

I had a Sponaneous Spinal Fluid Leak in 2003 for which I finally received a blood patch procedure after suffering for 3 weeks through countless tests. I have tinnitus as a result of this condition which began 2 weeks after the initial spinal headache. I was wondering if any one else has this same problem. Its very hard to find information on this since Spontaneous Leaks are so rare (1 in 50,000). I would appreciate learning more about this.


12/30/2005, from a Reader on the Web

Comment on the article on CSF leaks and hoping the person who posted a comment will read this one, or perhaps someone at Serendip could forward it to him/her. No, you are not alone with suffering a CSF leak and yes, they can be very hard to find and fix. Here's the link to a discussion community of fellow sufferers and those who suspect they have a leak and don't know. There are a lot of great resources here to help you go back to your Dr's and get more help. Two blood patches is often just the beginning of treatment, not the end, but many neurologists are not up on their reading on this rare problem and don't know what else can be done, or perhaps have never done it themselves and don't want to refer you..... http://brain.hastypastry.net/forums/forumdisplay.php?f=118

Pam Bryan

 

Additional comments made prior to 2007

I also have intracranial hypotension from two epidural shots for a lumbar disc problem. The back problem is not so bad anymore but I still suffer from moderate to severe head pressure 24/7. For two years I was bedridden with this terrible ailment, unable to stand along with many of the cranial nerve side effects (double vision, nausea, radicular neuropathy). Three blood patches failed to help....slowly over time I was able to do more. Myelograms and cisternographies have not been able to see my leak, though my spinal pressure was measured twice to be low, as well as my brain mris showing enhancement. Though I am functional again I still have many restrictions including exercise (frustraing as an ex-athlete). I'm also a licensed nutritonist and your paper touches on some interesting points....why doesn't the dura heal? The biggest obstacle with this conditon is the difficulty with diagnosis because most doctors believe the dura must heal in x amount of time and. So to accept that this doesn't occur with everyone is one problem and then why it isn't healing is another. I wonder if certain fundamental factors are missing relating to connective tissue. Not necessarily one of the conventional connective tissue disorders but something missing or interfering with attaining adequate amino acids to fully optimize connective tissue sythesis/regeneration. At any rate, this can be an unbelievably debilitating condition....check out Mass General Hospital's neurology department's...brain forum and look under csf leak diagnosis and you will see it is more common than perhaps once thought. Plus these headaches are so not like migraine, although it is not uncommon for migraines to develop on top of them. These headaches/pressure are all about physics...an intense pulling sensation..like G-forces pulling your head down. I'm praying for more research....maybe better imaging to find smaller leaks. Many thanks for your paper ... Cindy, 4 February 2006

 

 

It's wonderful to read the comments from others who have suffered with spinal leaks. I too went misdiagnosed for well over a year. I was told my headaches were caused by stress, menapause or even migranes. It was just one year ago that the pain became unbearable and my doctor now thought it was meningitis. I was put in the hospital and a neurologist found my leak. Although my surgery was to take place in another hospital, it was postponed because I had seizured. I was put into a medically induced coma so I could be stablized. I had never had a seizure in my life and it was believed that it was brought on by the extreme loss of fluid. My leak was at the base of my spine. After an extended hospital stay and complications, I am now happy to say I am cured. I have not had even the slightest headache in one year and hope I never do ... Julie L, 7 April 2006

 

 

My husband started w/ severe fatigue approx 4. months ago. The fatigue lessened,but he began having chronic headaches.He has had a headache now for about 3 months. Spinal tap results came back as low pressure and high protein. He seems to think it is a low pressure headache. This is all new to us. We have never heard of such a thing. Apparently there are more of you out there who suffer from this. We would love to hear from anyone experiencing the same thing. He did have a blood patch today. Waiting to see if it helps. Thanks for that great article. Very good and informitive ... Lisa, 15 August 2006

 

 

REGARDING SPONTANEOUS INTRACRANIAL HYPOTENSION I am a 36yo female I have had this condition also on july 19 2006 I went to bed with a bad headache and woke up the next morning with sore shoulders and neck when I tried to get up I suffered the most excruciating pain in my neck and head it was so bad I wanted to vomit . When I visited the local hospital the doctor gave me panadol and sent me home without doing any tests. After 3 days of getting worse I went back to my doctor by this time I could barely walk because the pain was so severe the doctor sent me over for a cat scan which they picked up immediatley as some kind of fluid on my brain . After that I was flown by Royal Flying Doctor to Perth . While there I had 2 MRI one on my brain and the other on my spine after the spinal one they picked up that I had a leak in my spine. I just want to tell any one out there who has had or does have this condition that I really feel for you because it's such a traumatic illness and no one has any idea how painful it is also anyone who is suffering pain in the head so bad please demand you have a cat scan ... Deanne, 26 September 2006

 

 

I am just three weeks out of having a disctectomy done. The week prior to that I received an epideral to try amd fix the blown disc that I had. Is there anyway to minimize the pan of the headaches? I am being admitted into the hospital again on Monday to now correct the spinal fluid leakage problem. Does anyone have any suggestios concerning this matter or that can supply me with any kind of information? ... Heather, 22 November 2006

 

 

I would like to talk to others who are suffering from spinal fluid leaks. Can you help put me in touch? Or, can I talk to you? ... Brad Hennenfent, 22 January 2007

 

 

I read the article on Spontaneous Intracranial Hypotension and felt compelled to share my experience with this condition, which is still unresolved but hopefully soon to be treated. I should preface this by saying that I have never had injury or trauma to the head or spine. I developed a headache a little over two weeks ago that was very migraine-like except that none of the pain relievers I tried got rid of it entirely, it originates at the base of the skull and spreads forward, and it's relieved within five minutes of lying down. Also, after five days of the headache, I began to have a feeling of congestion in my ears accompanied by a soft rushing sound, followed by mild hearing loss. The first doctor I saw in Urgent Care gave me some migraine medicine; the second ordered a CT scan; the third ordered a brain MRI and had me see a neurologist; the neurologist saw a report of the MRI that indicated enlarged ventricles, thought I might have hydrocephalus and referred me to a neurosurgeon for another opinion (the neurologist also prescribed Diamox, a diuretic - yikes!); the neurosurgeon looked at my MRI and thought I had a Chiari malformation, but wanted a second opinion so he had me see another neurosurgeon; the second neurosurgeon made the diagnosis of intracranial hypotension and ordered a lumbar MRI to see if they could detect a CSF leak. My dilated ventricles caused a lot of confusion because that's not usually consistent with SIH, but it was eventually concluded that I've probably had hydrocephalus all my life but have never had symptoms, and that the hydrocephalus is not what's causing my current problems. The next step was supposed to be a tracer study to try to identify a leak and its location. Well, my concerned husband got tired of all the shuffling and waiting around among our local doctors, so he took me up to Stanford (about an hour's drive) and checked me in to the ER; as you can imagine, we got much farther much faster by doing that. Stanford neurologists agreed with the diagnosis and have arranged for a blood patch next week -- no messing around with a tracer study. The blood patch will be injected and then my head will be lowered so that the blood coats the entire inside of the dura along the spine, with the assumption that if there's a leak somewhere along there, it will be plugged up. Let's hope it works!!! ... Larisa, 25 March 2007

 

 

I AM 45 YEARS OLD AND I TO WIND UP WITH MIGRANES I REMEEMBER JUST THIS MONTH OF THIS YR. MY HEADACHES WERE SO BAD THAT I LAYED IN A DARK COOL ROOM AND JUST SLEPT I WAS FEELING NAUSEATED EVERTIME I HAD TO USE THE RESTROOM THE SMELL OF FOOD EVEN MADE ME SICK. RECENTLY I HAD A MRI AND THE DOCTOR TOLD ME THAT THE FLUIDS IN MY BRAIN WERE LOW. BUT I ALSO WENT THROUGH 3 BLOWS TO THE HEAD FROM MY EX-HUSBAND NOW I HAVE A NEW LIFE A WONDERFULL HUSBAND AND I ALSO TO WENT TO THE COMPUTER TO FIND NUMEROUS ANSWERS BUT NOTHING SEEM COMPLETED I WILL BE SEEING A NEUROLOGIST HERE THIS AUGUST BUT TILL THAN OUR HOUSE IS DARK AND COOL AND TAKE MEDICATION FOR HEADACHES HOW SEVERE CAN THIS BE AND WHAT HAVE THEY FOUND IN TODAY TECHNOLOGY? I HOPE SOMEONE OUT THERE CAN UNDERSTAND WHAT I AM GOING THROUGH AND WHAT RELIEVED DID THEY RECIEVE DURING ALL THIS PLEASE IF ANY ONE KNOWS PLEASE SEND WHAT INFORMATION YOU MAY HAVE CAUSE I WOULD LIKE TO HAVE MY LIFE BACK TO NORMAL ... Susie, 26 June 2007

 

 

One morning in Oct. 06 I woke up with severe headaches and after 6 weeks of working up the ladder at my HMO, a neurologist finally diagnosed me with CSF leak (SIH). Not content to being mollified by being put on Prozac, I did some cursory research on the net and found out that others had what I had and found that some had been referred to Dr. Schievink at Cedars Sinai in Los Angeles for treatment. These can include blood patches, glue patches and surgery. His staff is very familiar with the disease and he is "the" expert.

 

My HMO refused to send me to him (right down the street in my case) the cost you know, until I developed large subdural hematomas. At that point they had no choice but to refer me because it was totally out of their realm to effectively treat the underlying cause, the CSF leak, or the subdurals.

 

A long story short--after 2 blood patches, 1 glue patch and 2 spinal surgeries(laminectomies)at T9-11 to remove benign Tarlov cysts, to repair 2 leaks, I can now function quite nicely. I have a 20 lb. lifting limit, can't hike up steep hills, and can't push or pull on heavy objects. These modified "val salva" maneuvers, I have learned, will cause undectable (on a CT myleogram) leaks. They come and go because I will still get positional headaches at times. At my last reading my CSF pressure is ZERO.(0) cm.

 

I'm very fortunate at 60 years old to be retired and thank God every day for the wonderful treatment I have recieved. I think mine was a severe case, I use to do a lot of physical work and ran for 25 yrs and maybe those were contributing factors ... Harvey Geiss, 16 July 2007

 

 

I had a spontaneous CSF leak in Nov 2004. After weeks of being told I had migrains, I was sent to a neurologist. He immediatly knew it was a CSF leak and put me on bedrest. After 6 weeks on bed rest, I still had bad headaches everytime I stood up. I then had a test to show where the hole was and they could not find it. I went to a different hospital and asked if we could do the test standing up because that was when I had my pain, and they said their machines can't go up that far. So I asked if they could do it with me on my knees, and they said yes. With in minutes they saw a large tear at C7. After two blood patches my major headaches are gone. From day one, to the last blood patch it was 4 months of bed rest! Yuck! Now I am living my life wondering if this will happen again, and taking Neurontin for these annoying daily headaches. Scary stuff! ... Elizabeth Kilik, 11 October 2007

 

 

Reading article and reader comments on intracranial hypotension. I've suffered over past 15 years from initially intracranial hypotension and flipped at some point to intracranial hypertension (or pseudotumor cerebri)! Living in Cleveland, OH diagnosis ranged from CSF leak to Chiari Malformation to POTS to migraine headaches. I ended up at Mayo Clinic where intracranial hypertension was diagnosed JUly 2007. Mayo has some of the leading experts on this area of neurology in the country. Medication was tried for a short while and in August 2007 a VP Shunt was placed to releive the hypertension. Almost 9 weeks after surgery some headache symptoms arise mid-day when I'm upright- started irregularly a few weeks ago now more of a daily occurance, including one episode of nausea and vomiting. I'm following up back at Mayo Clinic in 1 week. Looking for anyone with similar experiences, resolution of symptoms, and return to normal family and work life ... Robert Schneider, 22 October 2007

Comments

mark's picture

csf leak

Hello I am a 38 year old with the famous csf leak that they can't locate. It sucks to hear that I'm not the only one dealing with this. I have had the major headaches for 6 years. Three years ago I was finally diagnosed with a csf leak. It is hard to get a dr. To listen to u but I think so far I have found one @ the mayo clinic in rochester minn. Have done many tests,5 blood patches ,d of course no relief. I refuse to give up I fight the pain every day so I can support my family but its getting worse. I can hardly hold me head up when the headaches come on. Sleep or lay around all day so I can save up enough energy to go to work for 8 to 12 hours a day.something I have noticed is laying in bed it feels like my nose is stuffed up. If I'm laying on one side and roll to the other I can feel fluid transfer from one side to the other. If I stop on my back the fluid goes down my throata nd stuffy nose is gone. If stuffy nose I stand up and I can feel it instantly go down my throat and stuffy nose gone and head ache instantly so back to bed I go. Sure would like to be in contact with someone else deaing wih this no one understands what we r going through looking for some csf leak friends to talk to and hopefully we can figure out something these doctors can't. They say not a lot of studies have been done on csf leaks. WHY NOT!!! Hope to hear from some one thanks

debbie's picture

Csf leak

I too feel much better laying down and I also have cold like symptoms but draining from my throat. I have to constantly clear my throat during the day. Nose gets more stuffed up as day goes on. I can feel fluid even in my shoulders after I wake up and it slowly goes into my neck then goes thru my head. Then bad headaches. Sinuses feel full too. I cannot wait to go to bed. Foul taste when I wake up and now sore throat.

Do I sound crazy. I had sinus surgery in late Jan. while I was healing I sneezed very very hard and that is when all these sypmtoms started. Went to a neurologist and he said you always had sinus problems and just said it sounds like you have intracranial hypotension but I don't think you have a leak.. How could he say that without proof?

I live in Key West, Fl so we don't have modernized equipment so I have to go to Miami for anything serious. I am so disgusted that I made an appt with the ENT who did the sinus surgery on June 12th. I really hope he doesn't blow me off. I am sick of these doc thinking I am crazy.

Thanks for listening.

Debbie

Serendip Visitor's picture

CFS Leak

hello, please read my comment below your original...sounds as if you have the same thing I had. let me know..my name is Craig

Craig's picture

CFS Leak

I have read a lot of your comments on here. I had surgery in 1996 to repair the hole in my head behind my right eye that was causing massive CFS leakage from my nose. For a year and a half before surgery I would wake every morning in a giant puddle of it. Cleaned sheets constantly. I had headaches along with this, but could control with OTC meds. Finally got so bad I went to MD (im a guy) you know...we dont go to doctors..he said i had allergies since I was 40 yrs old at the time. Took all kinds of meds for a year under his direction and nothing worked, finally went to specialist ENT in the Woodlands TX, he asked for a sample and left room to get a sample cup to catch it in..while gone I saw two whiskey shot glasses in his office. I handed them BOTH to him FULL on his return 5 minutes later. I'll never forget the look on his face. Long story short..call or contact Dr. William Gormley at Herman Hospital in Houston TX, and tell him (Craig) sent ya. "not charlie". I have no syptoms what-so-ever for 13.5 years now...my surgery was in October 1996. What they did was, saw the top of my head off, picked up my pea pickin brain, put a bone graff in over the leaking area, refaced me, and left the light on , on the way out. Thank GOD for Dr. Gormley. Please feel free to ask me anything you like, if I can help but 1 it will be worth it. God Bless you all. Craig

Serendip Visitor's picture

CSF

WOW! Just left the dr.'s office and left a cup of fluid that drained out of my nose. He thinks CSF is what it is, I'll know in two weeks. This has been going on for a least a couple of years...now noticing more intense pressure headaches, entirely worse after using the CPAP machine. My goodness, i pray it's not too bad at this point, but it is definitely a menacing experience to have to deal with this day in and day out!

Serendip Visitor's picture

WOW! Just left the dr.'s office and left a cup of fluid that dra

Wow is RIGHT..you sound just like me back in 1996...doctor went to get specimen cup to catch my fluid in..on his return 3-4 minutes later I handed him as he came in the door 2 full shot classes I found on his window sill. I wish you could have seen the look on his face..tested mine right away..was on my back in Herman Hospital, Houston TX the NEXT day. You could contact Spinal Menengitis the longer you wait on this...im lucky I didnt...had the same drainage your talking about for 2 years...Dr's kept telling me as one get older one gets allergies...took all sorta pills, shots, pills shots...it started small ...prob like yours..at end of 2 years was running like a open water faucet..my daughter used to make fun of me because I always had some tissue in nose to catch fluid( allergies)..right...she was 11 at the time...even drew pictures of me..(still have to this day)...;-) and to this day..go figure...no allergies. one can DIE from S.M....hurry and get help...I had the BEST...call me and I will give you his name and number....Craig 936-697-1508

your Origianal post dated 8/5/2010:
WOW! Just left the dr.'s office and left a cup of fluid that drained out of my nose. He thinks CSF is what it is, I'll know in two weeks. This has been going on for a least a couple of years...now noticing more intense pressure headaches, entirely worse after using the CPAP machine. My goodness, i pray it's not too bad at this point, but it is definitely a menacing experience to have to deal with this day in and day out!

annette's picture

spontanious csf leak

I started leaking clear fluid out my nose in April of 2008. Then I went to dr; he said sinus infection, then I got pneumonia fought that for 2 months or longer, my dr sent me to a lung dr. He did biopsy which showed infection while the whole time my nose is still dripping. The dr. finally listened to me and sent me to an ears nose and throat dr. He right away said that he felt that it was a spontaneous csf leak. Then he sent me to a neurologist, which did many test, then I had a craniotomy June of 08. I had no headaches with this; now starting in July of 09 I started having severe headaches, lots of pressure in my head and ears. When I lay down it relieves it. I'm going back to my dr for test, looks like another csf leak.

Jennifer's picture

8 week headache

I have had very similar symptoms to what has been described on this site for the last 3 months. It all started with a "migraine with aura" they called it back in August. I experienced visual auras, lost peripheral vision, and then had an ache of a headache over the occipital bone of the back of my head for a couple of days. I had never had a migraine like this before. The next couple weeks were riddled with a sore neck and back, and then came another "migraine with aura". That migraine lasted longer. I was then back to the sore back and neck for several weeks. Then on September 13, the back of my head, my neck, and my upper back started to hurt and haven't stopped since. It has been eight weeks. I am in agony! I have been to the emergency room twice, hospitalized for 8 days once, had MRI's, CT Scans, XRays, bloodwork, 2 lumbar punctures, and they say there is nothing is consequence. The MRI shows a boderline low cerebelar tonsil, but not enough for Chiari, my xray shows a straightening of my neck, but they think probably from tension at this point. The opening pressure of the second lumbar puncture was 18, which they said was normal and thus was not a leak. But everything on this site sounds like what I have!

My head feels like it fills up with pressure. I am most comfortable laying down. Sitting is the worst position. I can't work any more. My brain is not functioning properly at this point, I'm not sure if from the pain or from the medicines, that don't even work. I am at my wits ends. I don't know what to do at this point or where I should go. I went to the Jefferson Headache Center in Philadelphia, but they are so focused on the headache, that they left me leave the hospital with a raging ear infection that is a side effect from one of the medicines they had me on. Nothing worse than an ear infection on top of a headache! All they are saying at this point is that it is a headache and we just need to find the right medicines to break the cycle. I just can't believe that a mostly healthy 44 year old woman would suddenly get sick with a headache that won't go away!

The only other leading up to this symptom that I had was that I was having some abdominal cramping, losing some hair, and feeling fatigued in July (enough that I saw the doctor about it, bloodwork showed nothing). Other symptoms that I have with my current headache are: ringing and pressure in ears, right eye dilates larger than left, dizziness, restlessness, random stabbing pains, constant ache at occipital bone, aching neck, ache and burn between shoulders, tingling in face, tingling in scalp. My head hurts all the time, but in varying degrees of intensity.

If anyone has any suggestions, ideas, doctor referrals, anything, please I am desperate at this point. I can not live my life like this in this kind of pain. I need help. Please contact me at jennifer@g-reenovations.com .

Thank you to anyone who reaches out to me.

Samtucan000's picture

Hi Jennifer It definately

Hi Jennifer
It definately sounds like Chiari to me. I had Posterior Fossa Deompression surgery with Duraplasty in June 09' for a 9mm herniaton. I had the same symptoms as you plus more. The herniation of the tonsils is NOT an indication of severeness of symptoms. You can have 15mm herniation and be asymptomatic. You can have a 3mm herniation and have all the symptoms. There are not many doctors that have even heard of this condition but you need to keep looking for a doctor that will listen to you and take your MRI's seriously. Check out the Chiari support websites, they might help.
Good luck
Cheers
Sam

Genie's picture

CSF Leak

Sure sounds like you've got the dreaded CSF leak. I started having what I thought were cold symptoms in November. By January I had the classic standing up killer headaches, lying down much better. After 2 weeks of this I went to my internal med doc. She very smartly ordered an MRI. By the next day I knew I had a spontaneous CSF leak. I was put in touch with a neulogist. She wanted me to get a blood patch but the local hostipal wouldn't do it. So without explanation, I was put on steroids 600 mg of caffeine every 6 hours and bed rest for two weeks. This made me psychotic. After two weeks and no change, feeling helpless I went to the Mayo clinic, medical records in hand, consulting with an internal med doc and a neurologist. I was given a random bloodpatch between L4/5 because they didn't know where the leak was. That patch didn't work. I pursued the ENT possibilities with a CT scan that came back normal. With the same symptoms you describe - facial tingling/pressure, loud ear ringing, running nose and fatigue but head pain has lessened. My Mayo neurologist wanted to do a Mylegram to help locate the leak but I chose to have a second blood put closer to L2. Well had that yesterday, and no change. I'm not really sure what to do next but for safety sake I will probably have both a meningitis and pneumonia vaccine. I'm functioning @ about 40%. It's been comforting to hear from so many.

Anonymous's picture

I think yours sounds like

I think yours sounds like Trigeminal Neuralgia. There is a Doctor in California, last name Kassim.He specializes in TN. He is world reknowned If you will email me I will give you the links.

Nancy G's picture

Dear Jennifer, Hi. sorry

Dear Jennifer, Hi. sorry about the pain. I have been reserching cranial nerve disorders for some time now. My present diagnosis is Menieres Disease. I have hearing loss, ear fullness, balance issues.. lost weight, my face and scalp feel numb. I was also diagnosed recently with Occipital Neuralgia. I am still searching for answers because my gut feeling tells me to. I have seen many doctors, and now seeking help from holistic care givers like accupuncture, nutritionist, Osteopathic physicians, Please look into neurologic disorders, especially cranial nerve disorders. I have been to the Peter Jannetta center in Pittsburgh PA. He is an expert in Trigeminal neuralgia. I am not sure how to place your symptoms.. but my guess is that its neurological. I live in New York. You can write to me anytime. Keep looking for answers, don't give up. Another doctor you may want to consider is a Physiatrist..don't know if I spelled that correctly, but it is a spine doctor.

R Bowes's picture

CSF Leak through Gums

So glad to find this site and all of the comments. I have been struggling for close to 2 years; teeth extractions, CT Scans, trips to ENTs, Oral Surgeons, everyone saying I am suffering from nerve damage from Endoscopic surgery 10 years ago. I now believe I had a CSF leak post surgery that healed but then opened up again Jan 08. Because I had 2 teeth extracted (one root came out of the sinus) the CSF fluid now leaks from my Sinus through the space at around my back molar. Of course getting no medical doctor seems to be worried about a salty sometimes foul taste in my mouth. It was that one symptom that I found some reference to on the internet and self diagnosed. I am now experiencing the Low CSF headaches, and fortunately have been able to get relief by resting; being horizontal, etc. Waiting to see a Neurosurgeon but feeling like I am not going to get my referral. Anyone in the Toronto, Canada area that can recommend a neurosurgeon? I have had so much pain, antibiotics for over 150 days....I want my life back!!

justagal's picture

leaking symptoms, annoyed, frustrated...

Hi, im also in Ontario Canada and dealing with similar situation. I am wondering what answers you have found, please email me to my regular email if you wish.

RBowes's picture

CSF Leak

Sorry, I didn't get your message about being in ontario. Connect with me at rbowes@everus.ca we can chat!!

Leah, thonhill, ont canada's picture

spinal leak

October 3/2009

I am home from the hospital after receiving two bloodpatches in the last two weeks. This is a crazy illness. At first I thought I was insane. I have suffered headached before, but not as severe as 15 out of 10. I had nausea, and vomiting, and the headaches increased whenever I stand or sit up.
It started Aug 2/2009, I was driving up north to the beach and boom, I got a headache after 10 minutes in the car, I started taking Advil, did not work. Reflecting back, I had to put my seat back all the way as I could not sit up. Coincidentally, my tooth cracked in half that evening and had root canal two days later (an added pain bonus).The headaches persisted where I could not go to work, and if I did I had to come home after 1 hour. I visited emergency and my cat scan was negative. My symptoms did not go away, so I visited my family doctor again. On Sept 8 I went to emergency again and again, they sent me home. Another week goes by, and I have been in bed flat on my back,lost 15 pounds, my husband calls an ambulance to take me to the hospital. We actually had to fight with them to admit me. They did another cat scan and found the bleed in my brain.
For the last few months, I was going crazy, everyone thought its migraine, but migraine pills did not help. I went to the chiropractor, massage therapy nothing seemed to help. I am safe to say that I have not had the headaches since I came home from the hospital but I have severe stiffness in the lower back and back of my legs.

Amy, 33, Illinois's picture

Spontaneous CSF Leak

I have been suffering from a CSF leak since July 16th 2009. For 14 days straight I had the most excrutiating headache. Symptoms occuring with this headache were hotflashes,nausea, vomitting, postural headaches, congested feeling and hearing loss, "ocean waves" sound, extreme sensitivity to high pitched tones, and overwhelming craving for sugar and caffeine.
My first trip to the ER included a CT scan, which was read "negative" and pain medicine (which didn't work.) My second trip to the ER resulted in being put on IV pain medication and hydrated for 6 hours then sent home with more pain medication (which didn't work) where the pain came back.
I then had a follow up with my family doctor. I was referred to a neurologist who began treating me for a migraine and put me on preventive medication. After 2 weeks the symptoms didn't subside and my dosage was increased. After 2 more weeks I was told that my symptoms were simply a side effect of this horrific migraine and that eventually they would subside.
I went back to my family doctore and begged for an order on a MRI. The next week the MRI results came back and showed insufficient amount of fluid surrounding the dura in my brain. I was referred to a neurosurgeon at a institute for neurology.
After my initial visit I was set up for a cervical myelogram to try and locate the location of the leak. This test did NOT render the location of the leak. A few weeks later I found myself in such pain, not being able to walk more than 20 feet without vomitting, that I once again found myself at the hospital. The ER doctor conferred with my neurosurgeon and I underwent my first blood patch that very day. I was sent home and no relief.
I then underwent a second bloodpatch procedure through a pain clinic. Again, no relief.
I went back to the neurosurgeon who set me up for another test, a cisternogram. With this, a lower lumbar puncture was done and nuclear mdicine was injected into my spine. Again, no leak was located with this test.
I was set up for a third blood patch at the pain clinic.
This patch was successful for 3 days. On the 4th day the pain in my neck radiating up the back of my head came back. By day 8 I couldn't be in the upright position for more than a 1/2 hour at a time.
This is my current situation. I have withdrawn from nursing school because of my condition and I am unable to hold a job.
I am suppose to have a fourth blood patch next week and meet again with my neurosurgeon the following Thursday.
This is a rare condition and I have read that only 1 out of 50,0000 people suffer from spontaneous CSF leaks. It is undoubtably depressing and seems that there is no relief in site!
If you are reading this, you are not alone.

Amy,33, Illinois Posted November 12, 2009

Anonymous's picture

I completely understand. I

I completely understand. I am 33 and my headaches began October 2007. I was a personal trainer and very healthy. I am now a consultant, but still exercise everyday. Monday morning in 2007 after playing in a golf tournament that prior weekend the nightmare began. I woke up and got out of bed and could not take the headache. I could not even walk to the bathroom. Went (crawled) to the family doctor and was told sinus headache. Continued for 3-4 days and could not get out of bed. I went back to the doctor and was told to see a neurolgist. Neurolgist said that I had migraines and gave me medication. I disagreed with the Neurogist, but I am no expert so I tried the medication. Nothing worked and 3 weeks later was sent to a neurolgist at Emory in Atlanta. After a minute of telling the Emory neurologist my symptons he said I had a CSF Leak. He said to rest and drink plenty of fluids. Went back several times, but I begin feeling better and could function so the doctor did not seem too concerned. I told him that I feel nauseau, neck stiffness, and headaches every morning. He was a waste, so I tried a third Neurologist. He ran several test to make sure I had a leak. The leak was found and two blood patches were performed. Neither worked and the second caused several complications and I was hospitalized. Since then the only answer I was given is different medications and hopefully over time the leak will heal itself. I am at a dead end. My next step is to try another neurologist. It is difficult everyday working and trying to show no pain with two small children and the wife.

mark's picture

i feel ur pain

Hello amy yes you are right this illness is terrible. I have had all the tests,5 blood patches, mylograms,cisternograms,mri's,ct scans,and some tests with radioactive stuff twice. Nothing yes a leak but can't find it.I am currently waiting to hear back from dr.Schievink at cedar sinai in los angeles. He is the worlds formost dr. On this. All this sofar has been done in the last 3 years at the mayo in minnesota. Good doctors. I am still working so far pain is unbearable but right now can't afford not to. I have a very supportive family and friends but I don't think they understand what I'm really going through. I work third shift and lay around and sleep all day long just so I have enough energy to go to work and deal with the headaches when I get them. Not easy as you know. I live in iowa have you seen anyone at the mayo or are all your visits local. Kinda nice to talk to someone who understands hope you get urs figured out. Good luck!

Pam's picture

CSF Leak

Hello my name is Pam and I have had a massive headache for a year and a half. I have been thru 4 blood patches, mylograms, 5 mri's and still can't find my leak. I can't get into the Mayo Clinic in Minnesota until May 2010. I am so scared I will be disappointed again and they will not find the leak. I don't understand how they can build a space station but can't help me? I am 44 years young and have a 13 and 12 year old still at home and it is hard for them to understand why I can't go to their school activitys. Most of the time I just do it! I look like death warmed over but I am there.I am sooo tired of hurting!! Does anyone know who can help??

colleen's picture

csf leak

My csf leak occured over 3 years ago. It was misdiagnosed for 3 months. A horrible period in my life as I know you can relate. I was scheduled for a blood patch, however I visited a pain management doctor beforehand, and he recommended abdominal binding. (One of those waist cinching bands worn down low on the belly)It helps to stick a small rolled up towel in there to increase the pressure on the abdomen. A couple weeks of this, bedrest,increased caffeine,and b12, and it went away. Every now and then I experience the beginnings of a csf leak, but I use the belly binder for a day or two and I'm good. Goodluck I hope this will be of help to you

Sylverta's picture

CSF Leak

My situation is very similar to yours. My nose started dripping end of January 2009. Thought just a cold but the drip was a clear fluid and had a salty taste. Finally in February went to the doctor, said I had sinustis and gave me an antibodic. Still leaking. He then sent me to have a CT scan on sinus and then to an ENT. Right away the ENT was sure it was spinal fluid and sent sample to be tested. It came back postive. Had another CT scan and then put me on diamox. Then had a MRI to try to locate leak. He was certain he found hole.
Next sent me to a neurologist and he did a wanted me to see an ophthalmologist who cofirmed optic nerves swollen and she referred to this a Pseudotumor cerebri. I have too much spinal fluid in my brain. Then neurologist did a spinal tap, pressure was good as by that time my leaking nose had stopped.
I had problems after that as I got brochitus but finally by August I was feeling good. I stopped taking Diamox in July.
I thought the hole had sealed it self shut. But my nose started leaking again in September. I am scheduled for surgery on 11/17and ENT is going to put a patch on the hole and also I will have a lumbar drain inserted prior so they can control the spinal fluid as I can not have any pressure so the patch can seal. Said I will be on Diamox rest of my life.
Never had any real sickness except cold,flu like eveyone else. I did have a lot of headaches but Dr also said stress etc. I would take Excedrine migrain, Tylenol does not work.
I also have the buzzing in my ears.
Like I said mine is not exactly like yours as I never had a blood patch and my neurologist was not recommending it.
Good luck in your search and I understand the depressing part.
Will follow up with my results in several weeks as I expect to be under the weather for several weeks.

Anonymous's picture

Spinal leak

Hi, My firends husband went in to have a deveated septem taken care of. Surgery went great. He then developed a CSF leak. He was admitted in to the hospital and on antibiotics for 3 days. They said the hole would close on its own, but it didnt. So they put a drain in his back to devert the fluid away from hole so that the hole would close. It seemed to work. But now the place where they put the drain in his back isnt closing and spinal fluid is leaking. My friends husband has had headaches since Dec 10thof 2009. They did 2 blood patches and they didnt work. Any suggestions as to what to do next?

Monica's picture

Find a neurosurgeon who will

Find a neurosurgeon who will surgically repair -- I had three stitches in my dura b/c it would not heal. I had to lie flat on my back for 16 days while fluid drained...finally surgeon decided to stitch it up. That was in 2006. Now I'm working and doing okay. still have pain from other back surgery -- but never had any problem with CSF leak again. Mine was caused by a screw from a back surgery - it ripped my dura. My posting is down below. God bless! Not sure where you are, but my doctor was Paul McCombs in Nashville TN and he is amazing!

Peter C.'s picture

Spontaneous CSF leak

Amy,

My daughter Leah (22), had the same symptoms. Her ordeal began in 2005 and the neurologists performed all kinds of tests including a cisternogram. They were not able to find the location of the CSF leak. After a month in the hospital the leak healed on its own.

She was OK for 2 years and in April 2008 her headaches, nausea, dizziness, light & sound sensitivity, etc. started again. After 5 more hospitalizations and numerous tests (MRI's, CAT scans, Myelograms) no leaks were detected. In June 2009, we were referred to a Dr. Wouter Schievink from the Cerdar-Sinai Hospital in Los Angeles. He was not able to locate the leaks either, but found about a dozen cysts on the membrane lining of her spine. He suspected that the leaks were caused by the spontaneous rupturing of one or more cysts.

My daughter was treated by Dr. Schievink over a period of 3 weeks with 2 double blood patches and one double fibrin-glue patch. The patches were placed on or near the suspected cysts. After the fibrin-glue patch her headaches went away.

She has been headache free for the past 3 1/2 months and getting better each day (her eyes are still sensitive to light, but they are supposedly the last to recover given the length of her ordeal and also that she has an underlying problem with her eyesight).

Serendip Visitor's picture

Misdiagnosed CSF leak

On Aug 6, 2009 I lost a precious friend, he was 45 yrs old. For months he tried to get someone to help him with these terrible headaches, N/V that were severe upon rising. He had always been in perfect health and never complained about anything, however this was horrible. He was taken to emergancy surgery on July 30th for evacuation of subdural hematomas that had formed due to the leakage. The CSF tear had been found the day before by Myleogram. After surgery his brain began to swell and he started having a series of strokes. These could have been related to the myleogram as well, they told us. We have suffered a great loss, my prayer is that more research will be done so that others will not have to suffer as he did.
Vickie, Tupelo, MS

Serendip Visitor's picture

Leak from upper jaw

Hi all,
can someone guide me whether severe saliva like watery leakage, which at times turns sour, without any accompanied headaches, be a symptom of SIH?

Serendip Visitor's picture

CSF Leak - Alternative Treatment

Recently diagnosed with a small CSF Leak coming through my dura lining, I'm not eager to have it closed surgically for a variety of reasons. I'm going to try the use of colloidal silver, colloidal gold and colloidal iridium to see if there is any descrease in the incidence or frequency of disharge through my ear. I am fortunate that I don't have signficant headaches and the occasional discharge is really all I notice.

Serendip Visitor's picture

where are the real success stories?

The stats on many pages places success stories for blood patch at 57 to 90%.

I've combed the internet to search for these success stories to see what they really mean. I can't find any.

My husband has had a blood patch on Tuesday and he's been lying down most of the time since then. However for the first time in 6 weeks when he stands up to eat or go to the washroom he has had no headache (except still fullness in the ears)...

I really want to hear from those 57%-90% who are "cured" if they go back to their regular life, including exercise and travel...

thank you, good luck and lots of health vibes to everybody.

Anonymous's picture

Blood Patch Success

I had a CSF leak in 1999. It took 3 weeks for the physicians to diagnose the problem. Finally an MRI was done and the diagnosis was made. Following the MRI, a blood patch was placed. It helped immediately, but it didn't last. Two weeks later they performed another blood patch, and that helped. I did however take celebrex and a drug called neurnoton for about 6 months following the episode, but since then I have been pain free, and can do almost everything. My only lasting effect is that I cannot lay down on my stomach and watch TV with my head in my hands. (A small price to pay.) Hopefully this will give you encouragement that everything will be ok.

Anonymous's picture

HEMORRHAGIC STROKE

I HAD A HEMORRHAGIC STROKE 5 YRS AGO. AND, HAVE SUFFERED WITH HEADACHES MAINLY RADIATING AT THE BACK OF THE HEAD.
ONE YEAR AGO I HAD MAJOR BACK SURGERY FOR A LAMINECTOMY AT L4/5 AND A SYNOVIAL CYST REMOVAL, A DISC REBUILT AND 2 SCREWS IMPLANTED. AND, YET THE SAME BACK OF THE HEAD ACHE PERSISTS. MY DOCTORS ARE AT A LOSS FOR AN ANSWER TO THIS 5 YEAR LONG SAGA. I HAVE HAD MRI'S, SCANS, ETC... LYRICA HASN'T HELPED. AND, PERCOCET DOES NOT RID ME OF THIS PAIN, IT ONLY DULLS IT A BIT.
DO YOU THINK THAT THE STROKE, WHICH LEFT MY ENTIRE RIGHT SIDE WITHOUT FEELING, BUT ABLE TO MOVE MY ARM AND LEG, BE AN INDICATOR OF A CSF LEAK?
I DO ALSO GET UNEXPLAINED RUNNING FROM ONLY MY RIGHT SIDE OF MY NOSTRIL, AS WELL AS FROM MY EYES SOMETIMES. I ALSO SUFFER FROM DEPRESSION AND A LACK OF ENERGY, WHICH I ATTRIBUTED TO MY DISABILITY? I ALSO SUFFER FROM UNEXPLAINED PROFUSE SWEATING WITHOUT ANY PHYSICAL EXERTION.
ANY ADVICE WOUKLD BE SO VERY MUCH APPRECIATED.
THANK YOU,
EZ

Joel's picture

Tried everything, and the doctors think I'm crazy...

When I was a young kid, I was diagnosed with Hydrocephalus, but they said that at the time, my ventricles were not large enough to call for a shunt. Eventually, the problem just kinda disappeared, and I didn't have any issues...That is until two years ago. I started having headaches every once in a while, which was unusual for me, cause I had never really had many headaches before. Every once in a while turned into an every day, 24/7 headache that has made my life miserable. We went to our family doctor, who referred us to another doctor, who referred us to a neurologist, who eventually referred us to a neurosurgeon. The neurosurgeon saw my large ventricles on an MRI, and thought that it could be the cause of my headaches. His first idea was to perform a third ventriculostomy, which effectively put a hole in my ventricles, allowing CSF to drain normally. Well, that didn't work, so eventually, he decided that we should put a shunt in. He put in a shunt with an adjustable valve, so he could adjust how much fluid was let off, but no setting has worked, and I am still suffering from the headaches.

I saw this website, cause I have been having some newer symptoms that I thought were odd, but no doctor seems to think that they mean anything, but I saw that many of you have the same symptoms that I have. I have noticed my vision getting worse, and I have had the tinnitus in the ears (which is really annoying, but no doctor seems to think it's anything), I have the obvious headache, but the really weird symptom is that will have spontaneous fluid leaks from my right eye, as if I am crying, but I am not... It also happens with my nose, and a really bad headache seems to follow every time this happens. It also feels like fluid is just going to start pouring out of my ears sometimes, but nothing ever happens.

It's been months since I've seen the neurosurgeon, cause I think they've given up on me, and think I'm crazy when I mention these new symptoms... Anyone with the pouring out of the eyes, or is it just me? Any advice?

Anonymous's picture

Joel, I hope by now you have

Joel,
I hope by now you have found someone to listen to you. With your past medical/surgical history, you really should stick with the neurosurgeon who performed the shunt procedure. I am a nurse and do experience csf leaks and hope to put an end to this condition with another EBP. My advice to you would be to ask them to give you the paper tabs that can test for csf. You can simple touch the paper to the fluid and if it turns a certain color---it is spinal fluid. Ask your doctor. Good luck to you. By the way, I have tinnitus and hope that someday it will go away too. I have had leaks for 5 months now, but I am functional after 3 blood patches.

Anonymous's picture

The dangers of this illness

What could this lead to besides spinal cord damage. Should I apply for disablity. How does this affect your careers?

Judy's picture

CSF Leak Caused by Cholesteatoma

I saw your request for a reply and I think you need to hear this.

In 1993, I woke up with a severe 24/7 earache for 3 solid months. The doctors thought I had an ear infection so they treated it and I went on my merry way. After the antibiotics wore off, the pain came back. I sat in the Dr.'s office at least 4 times a week. Always the same answer, we don't know, we don't see anything, etc. I was on an HMO plan back then and they didn't want to pay for any CT Scan or MRI period. The Dr. referred me to an ENT (ear, nose, throat) Dr. and they were like what's wrong with you? They almost laughed at me and I was so frustrated. I knew something was wrong but couldn't pinpoint it. The pain went away but the headaches were awful. The Dr. again referred me to a jaw specialist because they thought I had TMJ. I had day surgery on March 30, 1994 and that Dr. came out and told my husband that there was a slight tear and he didn't think that was the problem. I did seem to get better until December 1994. My left ear started leaking badly and my headaches were coming back with a vengeance. I also had bleeding coming out of my ears, dizziness, nose ran constantly and eyes seemed to be seeing fuzzy.

My Son was little then and he had contracted Strep Throat. That Dr's office refused to let him stay in a room so my husband took him home and we called the HMO people and got a new Dr. If we hadn't have done that, I might be dead right now. What a mess! Almost 2 years and nothing solved.

The new Dr. sent me to a new ENT specialist and he knew from the moment he looked in my ears what I had. He told me I had a tumor in my left ear (middle ear) that was called Cholesteatoma. He said it's rare, but people get these. He said I'd need surgery and would be out for about 5 hours.

Well, because the other Dr.'s couldn't find it, the tumor ate all my hearing devices in my left ear and caused the tumor to eat 3 holes in my brain. Luckily I was out of work for 4 to 6 weeks and have survived to tell my story.

I hope this helps you with your problems. Get checked out soon. Email me and let me know how you're doing. Always, Judy

P.S. GOD saved me.

Jill Jerdee's picture

Fluid from eyes

When I had my spinal fluid leak headache in 2005, my eyes kept watering constantly leading up to it. The neurologist said that wouldn't have indicated a leak, but I've never experienced my eyes watering like that before or after. I do have a lot of headaches, tinnitus, and neck soreness/stiffness to this day. Exedrin Migraine has become my best friend!

Serendip Visitor's picture

Leak from upper jaw

Hi, Could it be possible to have saliva like sour leakage from the upper jaw inside the mouth? There are no accompanied head aches like all others have described here, but there seems to be no apparant reason for the oozing liquid in the mouth. we have been trying to diagnose this since last three years & all doctors have failed till now.

Anonymous's picture

Leak from Jaw

I too have leak through my teeth; and low pressure headaches; did you get answers?

Serendip Visitor's picture

Fluid from eyes

Hello. I too have fluid coming from my eyes. Does your fluid leak out of the outside of the eyes? I have swelling above the tear duct on either side of my nose. I have Googled spontaneous cerebrospinal fluid leaks of the eyes and cannot find anything except for one 20-year old article of a 4-year old kid. There are a couple of recent articles on CSF leaks caused by trauma on patients in the Middle East; but nothing on eye leaks. I have low CSF pressure. A CT Myelogram revealed no leaks of the spine. I could not get my NS to image my head, but have heard he does not like to diagnose cranial leaks because they are hard to locate.
In any event, I am anxious to hear from a fellow eye-leaker.

Monica's picture

CSF Leak after Disc Fusion/Cage Replacement --- CURED!

Hello all,
I had a spinal leak in 2006 as a result of a bone chip or screw tearing the dura after my disc-replacement (L5S1) surgery. Was in hospital 5 days for initial surgery, went home, 3 emergency room visits later, I was eventually admitted back into the hospital w/dura leak. A drain was put in place and I was flat on my back for 15 days while the fluid drained out -- bags and bags of fluid. I was on heavy morphine and do not remember much of the ordeal except that the headaches I had and the vomiting was the worst feeling of my life. My (idiot)surgeon - Dr. David H. McCord (he is a QUACK!!!!) , had gone to Australia on Vacation!! Luckily, a FANTASTIC neurosurgeon, Dr. Paul McCombs, did surgery to repair -- I had 3 stitches in my dura to repair the tear. I was up and home within 2 days of the surgery and NEVER had the headaches again. Now, it's 3 years later and i have a lot of neurological issues and take Lyrica. Got addicted to pain meds, and now I am working with an addiction dr. who has me on Suboxone -- I FINALLy have my life back. Anyway, my CSF Leak / Dura TEAR was REPAIRED with stitches. I am in Nashville, TN. If anyone would like information on how to contact Dr. Paul McCombs, let me know...

Anonymous's picture

Bad headaches for the last 6

Bad headaches for the last 6 days!!!! It's great to read these comments because I'm going through the same thing. On Friday, June 26, 2009 I had an epidural injection to my lower back for a herniated disc. I woke up Saturday morning with a dull headache and took medicine for it and just waited for it to go away. It didn't. In fact throughout the day it got worse. I couldn't sleep Saturday night because of the pain. I spoke with the on-call doctor on Sunday morning and said since I wasn't getting worse standing up that it wasn't a spinal headache and said it had nothing to do with the procedure. He prescribed hydrocodine to help with the pain. Normally that works for me, but not this time. It didn't even touch the pain. I called the doctor's office that did the procedure and got in to see them Tuesday (6/30/09). They blew me off and said live it for the next week and then they'll refer me to a neuologist (sp). I said,"Another week? You've got be kidding me." Unfortunately, they weren't. I was finally told to take another type of pain killer and call back on Thursday. So here it is Thursday, still in pain and the doctor hasn't called. I talked to my primary doctor, but was told they can't do anything since I'm supposedly in contract with the doctor that did the procedure. I'm extremely frustrated because I hurt and something is wrong.

kathleenangelone424@yahoo.com's picture

The same thing...

I also received a epidural injection on Thursday June 25/ Immediately I had a horrible headache and the Dr who did the injection said it was a fluid leak, He said it would go away in a few days or he could do a blood patch. I waited the weekend out and the headache eased up some.. I seen him again on Tuesday June 30 and I told him that not only was I having headaches but I was having dizziness, weakness, a very sharp pain in the injection site,(not to the touch but inside) especially when I lay on my side. It takes my breath away, a runny nose and eyes.Plus my eyes are very sensitive when I look at an object and some light.He said that none of the other symptoms besides the headache were from the leak. But I feel sooo bad today, the crushing headache, nauseous, dizzy,lightheaded and HORRIBLE muscle cramps for the last 2 days.. I keep getting "charlie horses" all through my body< face, neck, hands, arms, stomach, legs back.. It is crazy, I looked deformed when this happens.. I am drinking plenty of water, very hydrated.. I don't know what else to do.. And the dr wont be back until tuesday.. I have been getting these injections for almost 3 years and never had a problem until now.

Todd's picture

How do I treat it?

I didnt know about this condition until two months ago. When I read all the symptoms I was elated because it is a dead ringer for every symptom that I have been going through. I used to have tubes in my ears for frequent infections, and bad nose bleeds that would not clot. I was trying painkillers and psychopharmaceutical drugs for years for headaches, etc., to no avail. So, I bought glucose test strips and found trace glucose in my mucus. Went to doctor and got an MRI and they said they didnt see anything so I don't have a CSF leak. I asked for them to look at my sinuses because they hurt so bad, or maybe do a CSF flow study. Nope. Where do I find a doctor to believe me? I've been semiconscious for months in bed with partial seizures; this is ridiculous at the least.

Anonymous's picture

JUST HAD LEAK REPAIRED

I had surgery for L,3-4 l,4-5 s,1 surgery in November 2008 to remove all of the metal and remove some over growth that had formed,I started having sever headaches in late December.I have gone from doctor to doctor looking for an answer with no avail.

At the end of my rope I picked up the phone and call a total stranger in the doctor world I saw him on the 8th of June and was in surgery on the 11th,
He ordered am MRI of my lower spine my luck was the leak was obvious on the scan
I had created a cyst about the size of an orange, He sent me directly back to my surgeon same day, the surgeon tried to drain the cyst which caused sever leg back and headaches. I went from there directly to the hospital via ambulance due to the fact my right leg had currled up under me and would not straighten out.

I spent two days in the hospital before surgery flat on my back no movement head had to stay below 30 degree incline, trying to get ready for the surgery.I had surgery on Saturday morning to close the leak the Dr stated he went directly to the leak which was just over a 1/4 inch long he sutured glued and patched the spot, my headaches and leg pain have not returned since and was released to come home the Tuesday afterward I will be on a 5lb lift restriction till the end of July.

My suggestion is if you think something is wrong keep looking you are the only one who knows your body. if you are told nothing is wrong try again I was blown off by three doctors even my surgeon.

t.sargent's picture

pressure in head

please help.... i have an 18 year old daughter who has pressure only on right side of head like if you cut your head down the middle it's the full right side,she has no pain just extreme pressure 24/7 in her head. nothing makes it worse or better,she has had this for 15 days now. They did a ct scan and it was normal.the doctor put her on sleeping pills so she can get some sleep and she still wakes up 3 to 4 times a night.the say it's just a stress/migrane headache,she has never had a problem with headaches and she has no pain,i just can't help but think it's something more then what they are saying,any info would be great thank you.

Barbara's picture

Help

I have "Trigeminal Neuralgia". I have had two "Right Sided Micro Vascular Decompression" surgeries. 1st one on March 23, 2007. 2nd one on January 26, 2009. From the 2nd surgery, I develop a CSF leak. I had the blood patch done on my "Dura". That was on March 6, 2009 No more leaks. And I don't have too much Trigeminal pain anymore. But what I do have on the right side of my is numbness and a BIG HEADACHE on my right temple all the time.

I am not getting much help from the doctors regrading this pain.

Thanks for any help you can give.

Barbara

nush's picture

Success story

I was told I had SIH in sept 2008.After two blood patch which did not work I was given a dose of caffeine through IV over 2 hours, I think it was 500ml of caffeine......and it worked!!!!. The caffeine somehow helps to make more csf and in turn helps the process of healing. what ever the reason it worked for me and I advise people to try this simple way to get fixed. I lay in bed for 8 months with brain pain until i got my great improvement. The problem is in the UK the caffeine is hard to get, but this does not mean you should not try and try like me and my husband did.

I am able now to stand all day, still have headaches but not bad enough to prevent me from standing up and getting on with most lowkey activities. I am improving- just very slowly day by day. But the important thing is I have most of my life back, apart from full time work. All the storys on this page are of people still suffering and I hope my story helps to give some hope to SIH suffers.

Caity's picture

So I'm not crazy?

For the last year or so I've been experiencing migraines, just once a month immediately following my menstrual cycle. A few months ago, things changed and I started having daily migraines. They would start out low grade every morning and increase in intensity as the day progressed. By evening, I could barely function. I was also starting to have other female problems right around the same time (I'm 40) so they chalked it all up to perimenopause, but the doctor sent me to a neurologist just to be sure.

My first neurologist ordered an MRI and put me on Topamax and Midrin. The Midrin had no effect at all, and the Topamax could've anesthetized a horse. I was in a constant stupor. Also, his whole attitude about my situation left much to be desired. He treated me like I was nuts. After six weeks of getting absolutely nowhere and still feeling like crap, I found another neurologist on my own.

The new neurologist looked at my MRI and found a small amount of clear fluid in one of my sinuses--not an infection and not enough to cause the awful headaches, but something to monitor. (She even sent me to an ENT just to rule out anything else, and everything was fine.) Also, she immediately took me off the Topamax and Midrin and put me on Depakote with Relpax as a backup medication.

For a few weeks, I got some relief but now the headaches are coming back. Again, they're low grade in the morning and worsen as the day goes on. Also, I'm experiencing nausea (which I've always had with migraines) but also pulse-synchronous tinnitus (whooshing sounds in sync with pulse rate and ringing in the ears) and I'm starting to have problems with my vision. The one other symptom that finally clued me in is that when I lean forward and strain to lift something heavy (Dandy maneuver), clear fluid leaks from my nose. I'm not congested or suffering from allergies. This is the only time I experience this.

After all my research and seeing all the posts here on this blog, I feel like I have a pretty solid case to present to my neurologist. I'm scheduled to see her in a week. Wish me luck!

Linda's picture

To "So I'm not Crazy"

I also have a CSF leak and a lot of my symptoms are quite like the ones you describe. The leak started about 1.5 months ago, and it took over two weeks to receive a correct diagnosis. I did the caffeine drip in the hospital, followed by a blood patch, but neither worked. I have nausea, the pulse-synchronous tinnitus you mentioned (thank you for putting a name to what I have been trying to describe to people) and my vision is definately "off" from where it was before this started. It goes without saying that I have the headache you described, too! I tried topamax and just started taking depakote. I really hope the depakote works; I need to get back to my life, as I have been bedridden for over 6 weeks.

I hope your headache is going away and that you are seeing results from your neurologist. After three trips to the hospital and seeing numerous doctors I have lost faith in our medical community. I like my new neurologist; he is trying to help me avoid having more spinal taps, but that may be necessary if I don't get better soon (spinal taps to locate the leak and apply another blood patch).

Hope you are feeling better and if you can provide further insights, please let me know!

Jill Jerdee's picture

Have you tried Prednisone?

I was put on a very high dosage of Prednisone for a week and then 'weaned' off of it to 'cure' my spinal fluid headache. It worked and I went right back to normal life...except for these annoying residual effects that seem to haunt me. My original headache occurred in 2005. Today I still have lots of headaches (none to the extreme of 2005), neck and shoulder stiffness, "pulse-synchronous tinnitus", (my son claims I'm going deaf!), painful sinus pressure at times, vertigo and an overall feeling of 'aloofedness' - can't concentrate and can't find words sometimes). I don't feel like myself and almost feel like I'm losing my mind. This has all happened since my spinal fluid leak and I find the symptoms go away when I take Excedrin Migraine (full of caffeine). I've debated going back to the neurologist, however I haven't taken the time. Anyone else experiencing 'left-over' effects from their spinal headache?

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