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

Milena's picture

CSF leak

I have an Spontaneous intracranial hypotension.
I have several unsuccessful blood patch and one unsuccessful surgery.
Nothing covered my leak( C10-C11)unfortunately.
Now i nave even worse symptoms( headaches and bachpain)
Can sombody tell me if blood patch procedures can demage my nerves. Why I have sach terrible pain.
Thanks,
Milena

Serendip Visitor's picture

CSF leak...needing treatment

Hi,

I have a friend in the NYC area that has been suffering from this for at least a year now. She just had an MRI and knows she has leaks, but is still struggling to find a doctor that will take a true interest in her long-term improvement, and has the knowledge to really help her get better. Can anyone refer a good doctor in NYC for a blood-patch, or some other proven treatment to close her current leaks/help her with long-term treatment ???

Thank you, Patrick

Bri's picture

Spontaneous Spinal Headache was my diagnosis

I was diagnosed in Oct 2011.
It started with a lower back pain on Friday evening. It was an uncomfortable pain, that I tried sitting, walking, and even stretching my lower back and nothing seemed to work. I went to bed early Friday night. I woke up the following morning, and maybe 10 mins after I was up I had an excruciating headache that felt like my head was going to rupture from the inside. I went to lay back in bed and noticed the headache had gone away. As soon as I tried getting up again that headache came back. I had never experience this type of headache, and I knew right away that this wasn’t normal.
I was taken to the ER and they run so many test and did a spinal tab and everything came back normal. I was sent home with pain meds. I was back and forth from my primary doctor to the ER for about two months, all I was given was pain meds and was misdiagnosed several times. Migraine headaches, muscle spasms, even thought I had bacterial meningitis. Morphine was being given to me every time I would go to the ER to relieve the pain.
Finally after several misdiagnosis, I was finally able to speak to a Neurologist, friend of the family. My family seeked out to him for a second opinion bc I wasn’t getting any better and were worried, since I was losing a lot of weight, vomiting, and day and night in bed (since this was pain free).
He diagnosed me with Spontaneous Spinal Headache which happens to 1 in every 100,000 people.
He told me to drink a lot of caffeine and that the caffeine would patch that leakage that I had. I had to be strictly on bed rest for 4 days while taking caffeine and laying only on my back.
I took Excedrin pills (contains caffeine) along with black Starbucks coffee for 4 days and would only get up to use the restroom. Other than that I was laying straight on my back (since this was the only way I could lay in bed per Doctors instructions.)
I did this and it worked!!! After the 4th day I got up and the headache was completely gone!!! It had worked and surgery wasn’t needed for me.
Thank GOD for the Angel sent, bc I seriously thought I was probably going to die without ever being properly diagnosed since I was sick for 2 straight months.
I was 25 years of age when this happened to me.

I hope by sharing this, it could help someone.

Serendip Visitor   C.J.'s picture

ARE YOU STILL DOING BETTER SINCE YOUR SPINAL FLUID LEAK?

Hi... I came across your comment regarding your experience with a spinal fluid leak. I was so grateful to hear of your success story of being able to treat it and successfully having relieved you PAIN. I thank God for that also for your sake. I have been dealing with excruciatingly painful spinal fluid headaches for 22 years now and just wanted to hear from you to find out if the blood patches have continued to hold and if you are still headache free.

I would love to know how you are doing in regards to the caffeine treatment for spinal fluid leak at this point.

Thanks.
Sincerely,
C.J.

Bri's picture

Hi, Putting me on caffeine

Hi,

Putting me on caffeine and bed rest did it for me. I have not experienced this headache again. Has never came back because the caffeine patched my leakage. I never found out how many I had and where. The doctor told me that putting me in bed rest and drinking caffeine would seal the patch. Luckily it worked for me and didn't need to take any other tests or have surgery done.

julia's picture

worst pain ever endured

It began with a thunderclap migrain and stiff, painful neck. Actually, more like someone stabbing butcher knives into the nape of my neck. Then, the most miraculaous feeling was to have the pain completely vanish after laying on my back. The pain would hit me in the early afternoon. Then the intense pressure in the ears, accompanied by nausia. I was very lucky to be diagnosed with SCSFL on my second trip to the ER. I have been on my back, drinking caffiene, and lots of liquids for a week now. Today is the first day that I am sitting at a computer, pain free, nausia free, and no pressure in my ears. But, I've lost a good part of my vision. The blurry vision started about three days ago, and it feels like it's here to stay. I just got a new percription 3 months ago, and my vision is already very poor. I really hope that my vision comes back, or at least does not get worse. I am scheduled for an MRI in 4 days. Being a mother of three, and working full time, this condition has robbed me of my sanity. The pain was out of this world, and now I live in fear that I will experience this again in the future.

Serendip Visitor   C.J.'s picture

HANG IN THERE JULIA

ARE YOU DOING ANY BETTER... Ive been going through exactly some of the same things that you described and was very touched when reading your experience and comment regarding your spinal fluid headache experience. Has your vision gotten any better I hope?

I would love to hear how you are doing.

Sincerely,
C.J.

Julia's picture

my progress since relapse

So wonderful of you to ask. I had my MRI and the doctor did not detect any hole. Of course...why would things be any easier? I am doing a lot better, although 6 months later. As long as I do not scream, or laugh too hard, do not bend over to pick up anything, do not exercise, do not dance for more than 2 minutes, and do not lift heavy objects, I'm fine. So I live a limited kind of life. I don't know how long this will last, the doctors don't know either. My recovery time is a guessing game. My chances of re-lapsing is also a guessing game. I am tired of resting, and really tired of experiencing the pain in my nape when ever I do something absolutely preposterous such as tickling my children and lifting them up during play fights. Right now the pain is more emotional and mental than it is physical. I am angry that it is taking so long, and I am in constant fear that the pain will come back. It truely was the worst pain imaginable. This site has helped me tremendously in understanding what I am going through, and I am happy if my experience helps others even in the smallest way.

Serendip Visitor's picture

update

Just an update on my condition. It is now close to 5 months since my diagnosis. I had two relapses and no MRI. The doctors keep on telling to rest and drink liquids, it does help, but I always relapse. Now I only suffer from eye socket pain when ever I use my peripheral vision. I also feel like my ears are blocked, and a numb pain in the nape of my neck. Sometimes laying down makes things worse, and I've read that this is experienced by other sufferers as well. If I am up all day it is best if I just keep going even if I am pain, because if I lay down and let myself recover, the pain is 10 times worse when I get myself up again. This summer I discovered that being in a pool is absolutely awesome. Being suspended in the water alleviates the pain since there is no pressure on the spinal cord!!! I highly suggest it! I am Canadian, and the Medicare system is ineffective. I need to wait 12 months for an MRI. Thankfully my sister in law works at a hospital, and she squeezed me in for an MRI for September. I am crossing my fingers and toes that the doctor is able to see the hole and get a blood patch because I cannot live a normal life anymore. I would also like to add that my relapses happen just before I menstruate, and the doctor believes that it is due to hormonal fluctuations, has any one else experienced this?

Serendip Visitor's picture

CSF LEAK

I totally understand what you're going through. Please consult Dr. Stil Kountakis at Georgia Regents University Hospital formerly Medical College of Georgia. I didn't know what was wrong with me until I developed meningitis. I was told that this illness is not common and like the doctors who treated me - most are clueless when it comes to diagnosing CSF leaks. Luckily for me the infectious disease doctor treating my meningitis was persistent in testing my spinal leak which was draining from my nose like a faucet. Even if you don't live in Georgia he could guide you in the right direction. He specializes in diagnosing this illness.
I also have a love for water now...I was surprised to see you mention this cause I thought it was just me. Water is my therapeutic escape. I can't stand loud noises and my vision is not the same. I am grateful for the support that I received from my doctor because it was scary. He did explain that it could come back in 3- 5 years if I did not lose weight and control my blood pressure. I had my cranium repair -blood patch over 2 years ago. Life is not the same and my peripheral vision is affected by the pressure on my cranium.

Don't give up.

Serendip Visitor's picture

csf leak

thank you all for your comments and suggested doctors I do have surgery scheduled for June 11th with Dr Schwartz in Denver Colorado my fingers are crossed that this will work I have hope and faith that one day I will be pain free

Mary Powell 's picture

My c sf leak

Dear friends,

I posted in 2012 about a leak that docs could not find. In August 2012
I went to see Dr. Linda gray at Duke Hospital in Raleigh NC.
She found the leak within 10 min in my C 5 and patched me. I no longer get headaches.
Work two jobs and work out 5 times per week.

I will no longer be corresponding on here due to busy schedule but urge you, if you have a leak, particularly that no one
Can find, to see Linda Gray. She is a neuro radiologist not a neurologist and that
Is the core difference. To this day, on the ct scan where she found the leak my former docs still do not see a leak.
Therefore, you must go to someone who is used to reading scans and performing them under fluoroscopic guidance immediately after dye
Has been placed.

Their phone number is 9196687221 and Jeff is her assistant/pa.

All the best to you.

Mary Powell

Lee Campbell's picture

There is HOPE

The CSF Leaks group on Facebook is a great place to find loads of information and real friendships. The information provided is based on personal experiences and it can certainly help you in navigating the maze of the medical field. For those who find themselves going to Duke for treatment by Dr. Linda Gray, we have arranged special hotel rates for our Facebook group members. Currently working on ways to get special rates in LA for our members who are being treated at Cedars Sinai. I'm fortunate to live within a 20 minute drive to Duke and delight in meeting new patients. I'm happy to help in any way. Often, i'll meet patients at the airport and take them to their hotel. Also, i'll assist if you need someone to sign you out, take you to pharmacy then back to your hotel. My wife is also very happy to assist. Come join us in the CSF Leaks private group. For members that need assistance, I provide a personal bio of me to ease any worries. COME JOIN US IN THE CSF LEAKS FACEBOOK private group. You can vent, ask questions, share, scream, cry and, yes, even laugh a bit. We aren't selling anything. We offer warm, sincere support. All FREE of charge. Keep Smilin'.

Lilly's picture

Leak?

I had an optic neuritis event 20 years ago that left me with limited center vision - permanent. About five years ago the eye began to hurt to touch and move. The pain quickly moved all the way back on the left side of my head. On February 8, 2014 I woke up with major, major pain above my left ear and my neck was SO awfully painful - across the lower neck and up the back of my head. Then I developed two very bad ear infections (struggle with those for several years and they are now looking at CVID since I have been dx'd already with hypogammaglobulinemia (reduced proteins in my bone marrow). The ear infections did not go away with ten days of antibiotics, and the head pain continues to be very bad, as one woman said, especially when I bend over to pick something up the pressure is SO bad. Also, when I lay on my RIGHT side, the pressure is like "falling" from the left side and so it is better to lay right on the painful side. The new symptom that got me this morning when I woke up was very bad dizziness, but also my right eye was "leaking" - it was not like tears or usual morning goop. It was pure watery that I had to dry off with tissue. Can a tear leak from the eye? Thanks!

Lee's picture

CSF Leaks

Cranial leaks can exit thee body thru ears, nose, eyes and down throat. It may sound gross but CSF fluid has a slight salt taste but mostly metalic due to the composition. While bending over, if you experience massive pain, you may suffer from intracranial hypertension, which is high pressure. High pressure can result in leaks. Please understand that you should always discuss this with your doctor and follow his/her advice. You may be able to visit an eye doctor and ask them if they would perform a beta-2 transferrin test for csf. They can also check optic nerve pressure which will often, but not always, show signs of high or pow pressure.

Lilly's picture

Yes, the pain is massive when

Yes, the pain is massive when I bend over... However, I have taken neurontin now for the past four nights and find that the pain has subsided. BUT, if I were to bend over, it would still be there but not as bad. I have recently been to the neuro ophthalmologist and my pressures are good as are my optic nerves.

Lee's picture

Also, many times high

Also, many times high pressure, if not totally dibilitating, can be controlled with medications like Diamox, Lasix or HCTZ. It is critical that you have your doctor verify if you have high or low pressure. Do some research to better prepare yourself for your doctors visit.

Lee's picture

There is what is known as

There is what is known as clinical normal pressure. That usually runs between 8-20. That is a huge range. For me, if my pressure is 11, clinically I'm in the normal range. Physically, I'm beginning to hurt really bad. Over the years, we have discovered my "sweet spot" pressure to be 14-16. If you have MRI images, you can seek advice from CSF specialist. The 2 top researchers and doctors are Dr. Linda Gray at Duke University Medical Center and Dr. Wouter Schevink at Cedars Sinai in LA. While MRI does not reveal leaks, the well trained eye of a specialists will notice abnormalities in brain position. Positional headaches are the number one symptom of CSF issues. A lumbar puncture can reveal what actual pressure is. Make sure you discuss your symptoms and concerns with your doctor. I think I saw about 6 different doctors and was hospitalized numerous times before I was accurately diagnosed and treated. I had never heard of leaks or high CSF pressure until I saw Dr. Gray. WHAMMO! I was wheeled in the hospital in extreme pain and walked out 4 hours later pain free. If you are into Facebook, our CSF Leaks group is very active and we have loads of files and research information. Shoot, we've even worked out special hotel rates for our group members.

Serendip Visitor's picture

csf leaks

I have heard about dr. Gray, but i have been told by a couple different doctors that since i have arnolds chiari malformation with a 60% blockage of fluid in the cervical region, that a lumbar puncture could make me worse. I struggle with this and never know the directions I am going in.

Lee's picture

With Chiari, you'd be better

With Chiari, you'd be better suited to seek advice from Wouter Schevink at Cedars Sinai in LA. Dr. Gray is outstanding at finding those "hard to find" spinal leaks. When the head is involved, Dr. S is the way to go. Have you ever had decompressing surgery? He's a full blown neurosurgeon and can perform for invasive surgeries. Dr. Gray is a neuroradiologist. Hers are less invasive and same day treatments.

pam's picture

SIH

Well you are all not alone. I just had my first blood patch a week ago. Although the headaches are not severe, I still feel pressure behind the ears, side of head above right ear and on top of head especially if I bend over to clean or to pick something up. Once I bend over, my head feels funny, my hands actually start to shake(I guess from weakness) and I get very tired. Ready to take a nap. Most times I do. I know this is not right and it concerns me that this has not been fully fixed. I too have been through numerous test. One CT and two MRI's. The anethesiologist that performed this precedure pretty much informed me that is long as I was not having the severe headaches, that the precedure worked. I told him about pressure I was having and he replied that he had heard some patients having that and for some it takes longer to heal. He added that there isn't anything else to be done and to give it time. After reading all of your comments, I'm not so sure I am going to get better. I see primary care doctor in two weeks, so I will be discussing this with her. I'm like the rest of you. MRI's are expensive. With or without insurance. You either know or you don't on how to fix it.

Lee Campbell's picture

HOPE

If you haven't joined the Facebook group CSF Leaks, I would suggest that you give it a try. Lots of people sharing experiences every day. Support, compassion and care like you've never known. Loads of information about symptoms and various doctors who specialize in treatment. There is a private group that enables medical discussions to remain protected behind the walls of privacy. No one can see conversations except the members of the group. Come check us out. CSF Leaks.

Jessica Horn's picture

Do I have signs of this? trying to figure out whats going on

With these symptoms did your your skull on the left side of your head go Numb? Mine did for about 15 min I got blurred vision and could a pulse in the bottom of my left foot on inner side of arch? Trying to figure our whats going on with my self.

Ben Dushi's picture

CSF LEAKS

I have the same problem.
I would like to talk to somebody with same problems.
please Email me at

Serendip Visitor's picture

we can't see your email add

If you Google CFS leak there is group on CSF leak . org. Also face book has great groups CSF leak public and private.

Lisa's picture

SIH

I am at the beginning of my problem. I left work one morning, I work overnights as a nurse, with a headache. It was so intense the next day we went to the ER. I was told, at 61, it was likely a migraine. I never had them before. My mother and daughter do. I had a CT of my head, normal, and told I had a tension headache. I was feeling better laying on the stretcher, but when I sat up the headache came back. I think I said something to the nurse, but I was discharged with narc pain reliever and muscle relaxers.......... Hind sight is 20 - 20. I should have complained harder then. Haha! After annoying my doctor's nurse many times and several ER visits and other doctor checks I got a neurology consult and confirmed my guess, and my doctor's nurse, who had been an OB nurse. At least I found out in a month. Now to see what will happen in my future. So far it was just confirmed by my symptoms. I was told no stress and drink lots of coffee, 2 to 3 cups a day. I get rebound headaches from coffee so I have not had any in a few years. I went a little overboard at first. No stress is too open. I live in the country and think nothing of loading wood for the wood stove....... So ....... Even one piece picked up next to the stove hurt. I finally put myself on bed rest for a few days and it helps some. I have been on the internet a lot reading. Lisa

Serendip Visitor's picture

Hearing loss, head pressure, severe tinnitus

Hello, my name is Mike and I am 52 yoa living in the USA (state of Ohio). I have been dealing with my symptoms for 3 years now. I had a motorcycle accident back in June 2004 where I sustained a leg injury and landed on the right side of my head, Two years later out of the blue I get ringing in the right ear and moderate hearing loss. The ENT diagnosed me with Meniers Disease without even giving me a test for Mineiers. I had no other symptoms for Meniers; drop attack with vomiting.

Late summer of 2010 I get the fullness in the head and ears, a lot of post nasal drip, and hearing loss to both ears. The ENT once again diagnosed me with Meniers Disease. I was a Police Officer and still working at the time, I could not hear what people were telling me and I had to go on extended sick leave.

My symptoms got worse, I started to get bad dizzy spells and still had the head and ear fullness. The ENT had me get an MRI of the brain/head to look for a tumor in which none was found. No other testing, still diagnosed with Meniers. I then had a couple of attacks of nausea and vomiting.

My sick leave was running out and I had to retire. I could have obtained Disability but chose to retire because I really thought that this would all pass and get better. I allowed the ENT to give me steroid injections into the left ear drum which killed the ear after the 4th injection. In Feb 2011 my symptoms continued to get worse. I would have these 4-10 hour pressure attacks, my head and ears felt like they were going to explode, but I did not get a headache. I could actually feel what appeared to be fluid draining in the right side of my head and behind the right eye. I now get a new symptom, my vision in the right eye is blurry. I went to an eye dr. and got a full exam. Everything checked out ok and had to get reading glassed upgraded.

My tinnitus was getting much worse and was 24/7, actually had 7 different sounds at one time. I spent most of my time lying down in bed listening to the tinnitus because it would not let up. I heard music, marching bands, a loud roar in the left ear and a ring in he right ear.

I Then go to another ENT-Neuro Dr. at Cleveland University Hospital. He ruled out Meniers and I had a complete blood work done which everything came back negative. I went back to the original ENT who admitted that he was "stumped" and suggested that I see a Neurologist. I see a local Neuro who was of no help what so ever. She had no idea what was causing my symptoms.

I have a vacation home in KY, about an hour or so away from Nashville. My aunt took me to a Neuro at Vanderbilt U. Hospitals. She reviewed all my records and symptoms and thought that I may have a spinal fluid leak. She has me get a spinal tap to rule out other things and a MRI of the brain and the cervical spine. The Mri revealed a cyst which is formed by leaking fluid. I can't remember the name of the cyst. I was scheduled to see a neuro surgeon when my insurance company changed to a PPO and would not pay for the surgeon because he was out of state.

I have an appt. with neuro surgeon at the Cleveland Clinic at the end of theis month (feb. 2014). some of my symptoms have improved; no more dizzy spells, seldom get blurry vision anymore, only get pressure attacks when I engage in certain physical activities.

I am sorry that this is so lengthy. I would appreciate any advice, May God bless each and every one of you and heal you!

Tina's picture

Replying to Mike

Hi Mike, sorry for your troubles. A lot of people are going to see Dr. Gray-Leithe to see if they have too little or too much pressure in the head. She also looks for spinal fluid leaks. I guess she does ct-myleograms. I have heard a lot of good about her. She is at duke university in Raleigh,NC

Ruth Clumb's picture

csf leak / headaches

How are leaks sealed if they can not be located by mylegram or scans? I have been through 2 blood patches and told I have no leak,and yet the headaches are here every day all day until I go to bed flat on my back.Will get a second oppinion by another neurologist next friday.My headaches started in September and I have tried all the regular fixes so I asked to try Botox,waiting for insurance to okay that, but I wonder if I don't fix the leak and just cover up with Botox what will happen? I'm really bummed after visiting your website cause I thought I suffered a long time, how can anyone live like this for 25 years? I'm flat on my back every day.
Well I hope to find an answer next friday, but I will check back to see if anyone responds with a true and proven cure. Thanks.

Serendip Visitor's picture

csf leak

All most one year and still doctors still trying to figure out whats wrong with me. Had a lumbar puncture in early 2013. Went to ER with dizziness, double vision and no headache 11 days after diagnostic puncture. Sent home and was told double vision would improve. Doctor prescribed predisone. Double vision went and after discontinuing predisone, double vision came back so severe I had to see a neuro-ophtamologists who perscribed prism glasses. I have been to another two ER at hospitals. Have to lay down to feel better. always in a fog when upright. Had TIA symptoms three times. Could of gone to ER many more times. What for no one will help. Certain anti depressents make me more ill and almost blacked out when taking one for first time. I have all the symptoms of have SIH or CSF leak, but no headache. Have radicular pain which intensifys when upright. Now have clumsy arms and hands. Can't do much.

Tiffany Challis's picture

Spontaneous CFS leak

I am 42 years old and was finally diagnosed with a spontaneous CFS leak after a month. I experienced the severe headaches and neck ache on Dec 2nd, 2013. I was throwing up from the pain and went to an urgent care center. The said it was a sinus infection and had m on medication for 2 weeks. Around the 2nd week I started to look online and the symptoms matched up to what I was experiencing so I decided to go to the emergency room and they performed a CT scan on me looking for rumors. I had specifically asked the doctor if it could be a CFS leak and she said she didn't think it was . I then went back to the urgent care doctor who again put me on more sinus medication. I went through that medication and then went back to him and he thought it maybe allergies. I decided at that point to see a ENT doctor which he assured me it was not allergies and had me go to a neurologist. I then saw y neurologist and told him my symptoms which I then told him that I thought it was a CFS leak and he sais, "you must have done your homework". He immediately had me go over to get an extensive MRI done which showed the CFS leak in my neck. I had a blood patch epidural done about a week ago and I am still recovering. They put approx. 20cc of blood in my S1 part of my spine and it was so painful. I am finally almost over the pain but now when I bend over I feel the pressure in my head. I saw the neurologist he put me on some anti seizure medication and I will see him again in 2weeks.

Candace's picture

Csf leak

Hello my name Candace,
I thought maybe writing my story would help someone out there or at least help me face this nightmare that won't end!
March 19 2013, I went in for a yearly injection to help with my chronic back pain. ( I was getting injections since 2001)
Maybe I should write a bit of my history first... I fell when I was 19 years old, August 30 1999, herniated one disc l4-5 and crushed l5-s1 I had 2 back surgeries from 2000-2004 then in 2005 I had a fusion on l4-5 then in 2009 I had second fusion on l5 s1.
I still had major pain after the last fusion with new symptom finally doc caught on MRI 8 months later that the hardware was undone so in 2010 I had surgery to remove the hardware. With still having lots of pain I went back to injection.

Now back to march 19 2013, I receive my injection went home to bed as normal, started to become very sick. Didn't think anything because I thought I had a cold.
Two weeks later I called the office told them my symptoms, they told me to come in during lunch hrs.. Explain to me that I probably have a leak, I ask how? He said there's always a small risk that the needle can tear the dura if the doc doesn't go in right.
So they scheduled me a blood patch. Said I should feel back to normal right after the blood is injected in.
I had 3 done. After the third one my head felt it was going to explode and legs started to hurt so bad I couldn't walk.
I was admitted into the hospital April 4 - may 1
The whole time I was in there they did 3 blood patches a drain and lots of scans.
Then I went home on strict bed rest and high does of morphine. May 14 I had back surgery so he could find the tears to stitch and glue it closed. I had to lay in hospital another week at a 30% inversion. I was miserable in so mush pain thought I was going to dye, and half of the time wanted to dye...
After coming home recovering in bed for two weeks I started to feel better each day, until July 10, out of the blue my headache came back!
Went back to docs ( one who did the injection and my surgeon) the surgeon basically told me there's no way... Like he's work is the best and couldn't possibly not held up.... I told him just in case lets run a MRI. Went to other doc to get meds.
So got MRI done aug 6, test results came back says collection of fluid greater then in may.

So I have been in bed on meds waiting till I go to Denver which better be soon because I can't live like this anymore, I have three kids ... How am I suppose to be a mother when I can't even get out of bed!

If any of you had this with good results in Denver area please tell me the name of your doc please!

Tina's picture

Intracranial Hypotension

Hello Candace,
As a mother of two I feel for you. I to have had a struggle with my health this year as well. Although I have not had back injuries like you have recently, I did however break my neck 17 years ago.That was a traumatic event of its own. I do however understand your symptoms and have also suffered them since August 2013. I have never been completely cured yet. I have been progressively getting more headaches in the last few weeks. All of these symptoms are gradually returning, distorted visual perception, tinnitus, dizziness, nausea, and the feeling of my brain moving around in my head if I make a sudden movement. I understand your pain and anguish all to well.
THIS IS MY STORY:
I travel for a living and can work some long shifts. In August of 2013 I was finishing a long two weeks of work. I had finished a 12 hour shift on Friday the 23rd and returned to my hotel thinking I would take a quick nap and pack and head out to airport. This was just the beginning of my new journey. I did lay down for about 45 minutes and when I woke up had an excruciating headache with eye pain and nausea. I thought I was just over tired and maybe coming down with a bug, so I took advil and packed up and went to the airport. Little did I know it was about to get worse. On the flights home it became apparent it was not getting better. I had extreme nausea and sever pain in my head. My ears also continued to pop which was weird as I am a regular flyer and am rarely bothered by the altitude difference. Some how I made it to my local airport were I still had to retrieve my vehicle and drive home. I have no recollection of the drive home by the grace of God I made it home safely. According to my daughter I came in and went straight up to bed. I only remember waking the next day to agony and called for my husband to take me to hospital. I have no recollection but throughout the night I had been violently throwing up. At the hospital the doctor on call assumed it was migraines and tried every drug available to him. Nothing worked. After 8 or more hours I actually felt just a hair better and with that the doctor said go home and rest and take the medications he prescribed. Unfortunately by 8 am the next morning I was back at hospital now continuously vomiting with sever headaches that no medication helped. They admitted me thinking I had contracted meningitis. When they did the lumbar puncture they did not get any fluid the first time and upon the second tap they retrieved very little. I was treated for meningitis for a week and when they tested me again they found the virus to be gone but I was still gravely ill. They continued to run tests and found that I had a negative csf level. I was diagnosed that day with Intracranial Hypotension. In the course of the following two weeks I had many scans, tests and 2 or 3 blood patches. I have little memory from my long stay in the hospital but the memories I have are burned in there of pain and anguish. Not only did I have the relentless headache I was also suffering from extreme nausea, dizziness, hypersensitivity to light sound and smell, visual perception was way off and I staggered to the right. I was unable to have light in my room was in the dark with sunglasses on for at least 8 weeks. Could not stomach much for food and was loosing weight fast. I remember thinking if I eat it will give me another reason to throw up and I was at my breaking point. The last blood patch was preformed just 5 or 6 days before I was discharged and finally I had some relief. I have not had a complete recovery but have hope that some day soon it will come. However as I mentioned above my symptoms are returning and it scares me.

Meagan Winston's picture

My mother has low spinal fluid but no leak.

My mother has had migraines all her life when I was in the sixth grade she was emitted into the hospital because she had gotten really ill due to the migraines. I was twelve then and I am now Nineteen yrs old. She has since been on disability income becuase of her getting migraines that would keep her in bed for days on end. It was eventually discovered that she has low spinal fluid, she has less than 1/4 of what the average person has, and there is no leak. Her body does not produce enough spinal fluid therefore she has a low supply. The specialist's she has seen, have not ever heard of this and cannot find a cause or a way to fix her condition.

Mark's picture

Hi Megan, Hows Your Mom?

Hello Meagan,

Did your Mom ever get this low spinal fluid issue addressed? I think I have the same thing going on.....M

Annette Stanfill's picture

Sons CSF Leaks

Hi all thanks for all the info I just read.....
My son is a normally athletic 17 year old. Till about a month ago. He started having really bad headaches. One early morning he woke me to tell me his head hurts so bad that he is vomiting. So I took him to the local ER. They took blood and something was off, it lead the Dr. to do a CT scan. His brain was bleeding. They life flighted him to the University of Utah trauma I neuro dept. there they did more Ct's, Mris. & Angiogram. They could not find any reason for the hemorrage. So after a week as an in patient, they sent us home. However the pain only got worse as time goes on. So back to the ER twice, the second time they kept him again. The only thing both times that would take the pain to a tolerable level was dilotta (sp) All the Drs. had been puzzled with this, one of the residence Drs. took all of his records and images to head radiologist. He found two csf leaks T4 & T5. So they did a blood patch last Monday. They dont think it worked, his head aches are even worse now. So either the drs. want to do another blood patch or surgery. My son said the blood patch hurt soo very much. I did not read anywhere that it was supposed to hurt that much. So my son is very much afraid of another blood patch. I am worried about the surgery, but he really needs to get well. Also with the csf, the blood on his brain will not absorb back into his body, which adds more pain :( if anyone knows anything about the surgery please let me know.

Thank you,
Annette

Theresa Coleman's picture

SIH headaches in teenage son

I am currently suffering from these types of headaches. Have a teenage son, myself. I live in area where the medicsl care is limited. Have been sick for sev eral years, passed from one Dr. To the next. In my research I learned about Dr. Linda Gray-Leithe. In Durhan, NC. I am going to try tovsee her, and would definitely get yourvson to her! There is info on several sitescabout her. Please hang in there. My heart goes out to your son as a sufferer, and to you, as a mother. My prayers are with you.
Theresa.

Tracy's picture

Facebook Group

Here's the link to the open Facebook group...we also have a private group, which you can request to join after joining the open group.

Tracy's picture

My CSF Leak and Brain Surgery

Here's my blog...

Serendip Visitor angela bathurst's picture

Brain leak.

Last year my nose streamed from September to march, I was treated with so many nasal sprays and tablets, permanent sinus infections, time of work for months, this year once again I have the nasal dripping, well pouring as I stand or bend over, finally I had a CT scan and my diagnosis was nearly missed, thank god for the consultant that was going to do a basic surgery on my nose, he found I had a gap at the front of my skull and part of my brain is sitting in my sinus cavity, now I have to have surgery to repair gap with cartridge from my leg and to remove that part of the brain which thankfully will not make a difference. So another five months of work has followed and still no sign of going back until surgery and recovery.

Gill's picture

update from a survivor

Two years have now passed since my experience with SIH. Suffering from exhaustion, I thought the headaches were from stress, lack of sleep and rainy weather (which has always given me headaches) until one day I couldn't get out of bed. I fel perfectly fine in bed, flat on my back, but when I tried to sit up, my body said "no no no" and I had to lie down again. On a scale of 1-10 for headaches, it was 10: I wanted to huddle up in a dark corner and find oblivion.

I was admitted to A&E and wheeled around half the hospital, eventually admitted to neurosurgery where I stayed, flat on my back, for a month. I didn't receive any treatment as such: the medical staff opted for non-invasive treatment, on the principle that the body is designed to heal itself if you let it do so, and also because by the time they worked out that the problem was a CSF leak, too much time had passed for the tear to show up on the MRI scan. They could only see where the fluid was pooling ("spinal cysts") but not where it was leaking from. I was allowed out of hospital after 23 days, because I could prove I coud sit up for 1 hour and walk the length of the ward, and therefore was capable of surviving at home, where I spent another month alternating lying down and sitting up for maybe 2 hrs at a time. That makes 2 consecutive months of complete rest - and I have had no relapse.

I had the full spectrum of symptoms, only present when I wan't completely horizontal on my back (i.e.no pillows or anything): headaches first, then dizziness (like a spinning top where your feet don't move but your upper body seems to be rotating in big circles); then that whooshing sound in my ears (like after flying and before your ears pop); then a feeling of complete weightlessness and the floor seems to move (like walking on waves: no sense of depth).

I also had the full spectrum of medical "opinion", from the correct diagnosis (from the neurologist in A&E, whom the neursurgeons chose to ignore completely), to (1) brain tumor, (2) crick in the neck, (3) ear infection, (4) psychological problems (i.e. hysteria), (5) spinal deformity, (6) the correct diagnosis again, this time by the consultant neurosurgeon who returned after having been absent during my first 2 weeks in hospital, and who had apparently diagnosed it by telephone after only a couple of days on the basis of the symptoms alone. I was treated as a charlatan, an inconvenience and also - unfortunately - as a pawn in the ward's power struggles between ambitious surgeons, several of whom believed that they should be the consultant medic, and, realizing that I didn't have a life-threatening condition (in a ward full of stroke and brain tumor victims) played their game at my expense. I was discharged the day after I should have been because the ward sister told me that "the handsome doctor who doesn't lift a finger but thinks he should be boss is on duty, and he'll discharge you with the wrong diagnosis. So we can't let you out now".

The tear healed itself, but the fluid has taken some time to regenerate, and I'm still not 100% convinced that it's all there after 2 years. No more sport for me, since I'm terrified my spine will spring a leak again, and when the rain comes on the headaches are worse than they ever used to be. Funny - I'd always put the weather sensitivity down to having low blood pressure, but maybe it's more related to low CSF reserves. Who knows?

Pocket Rocket's picture

still in pain

Hi Gill,

Sounds very much same.. Mine started 12.11.2013 just lost balance, then dizzy nausea sensitive to the light, vomit. I was diagonozed viral infection in inner ear by symptoms. I slept non stop tue to fri well toilet some food. Then went to back to work and pain started after I ran 1 hour exercise session. Neck and head but head mainly I decided it is nonce and worked next day too but booked gp appointment for evening. Same diagnose keep taking pain killers go home. Pain increase next morning I was in panic as pain was more than 2008 when I had subdural heamatoma. Next 3rd gp said try ibuprofein 400mg x 3 day for week. No help back to gp and got antibiotic maybe you have sinus problem I said no I dont I know how that feels. I ate antibiotics now 3 wk between visit to ae who send me out of hours gp who said virus take cocomadol, gone back to work in pain thought class exercise and pain only increased and went back to GP 5th one ok refer me for ct scan.. next morning pain increase i call out of hrs 6th gp they said they cant do anything go to gp in the morning 7th gp I found myself lying on the floor next to toilet due I was vomiting.Finally send to hospital where slowly Ct scan done to check my arteries my head finally spinal fluid attempt test I end it up 7 holes on my back how many hit my nerve and my spinal cord I lost account in pain while 2 different young doctors where trying to do it. (later senior doctor checked and they have tried in wrong place) Then they wanted to transfer me to another hospital I was in agony and great pain needles shooting all over my body walking was difficult. Pressure was measured 41 which could not be right and fluid was coming very slowly. first concern neuro ward was my back not my head mri scan of my test side was done and parently there was nothing to worry. I lost feeling from my leg also strenght from my hips and quadriseps but all returned now. MRI head done several days later no tumor found. Diagnose low pressure headache and I was allowed to fly to home. I was really ill before and after flight. I have now taken flight back to home and truly poorly ut no acccess to Neuro ward due they forgot to book me appointment and professor is going holiday. My work wants me out as they dont know how long this takes and effects my teams results if I am not there money is tight. I did go work after flight and was in great pain but was not allowed to lay down if i would I need it to go home I wanted so much be back at work so I stayed 10 hrs including train to work and walk. Next day and night I was so in pain that I have not now gone back to work and pain has not stopped even I lay down part of I need bathroom and food to take my medicine. Sometimes tramadol helps for few hrs. easy the peak of it. I am soo worried and how I am going to manage to pay my mortgage I am on my own and I need my health to keep my life together.

Serendip Visitor's picture

UK help

Pocket rocket. Mr Brown at Addenbrookes Cambridgeshire is brilliant.

Pocket's picture

Uk help

Thank you. I am now diagnosed by another neurologist that I have migraine? 2 now I had severe headache after I had shower?! Last one I was fine before I went for shower. It didn't easy by laying down. But I feel better laying down. If I sit or stand longer than trip to bathroom headache starts. I truly need to know what it is I want return to work and sports without causing problems. Any more information of this doctor? Thank you !

Serendip Visitor's picture

CSF leak?

For the last 3 months I've had an intense headache which gets progressively more intense the longer I am on my feet and is relieved once I have lay down for some time. It can be accompanied by nausea and vomiting, dizziness, ringing in my ears and pressure behind my eyes. It is not relieved by analgesia. It is very reminiscent to the 2 spinal headaches I had after the birth of my 2 sons. The first time, they went through the dura with the epidural needing leading to a spinal headache which went away after bed rest, fluids caffeine etc. The second birth was by planned c-section with a spinal needle but I ended up with a severe spinal headache which required a blood patch to cure it. I was told that the first procedure must have left a lot of scarring which meant during the second epidural the scar tissue must have ripped open when the needle was inserted. Could this scar tissue rupture on it's own as it's been weakened twice and cause another CSF leak?

Waiting :('s picture

CSF Leak

Please...can someone tell me where I can find a physician in Ontario Canada that does the blood patch treatment. I am a Registered Nurse who was diagnosed quite quickly however am suffering terribly while I wait for a neurosurgeon at Toronto Western Hospital to call me with an appointment for a consult. I have had all these symptoms and an MRI showed my brain was "sagging". The pain is terrible and I don't know if I can wait much longer. It's been weeks since I was diagnosed but my family doctor says there is just so few physicians out there who do this procedure! I would be happy for any advice. Thank you!

Serendip Visitor's picture

A possible reason for leaks

I have had neck problems (C1 and C2) for many years (nothing wrong by the way). Many years ago my PCP prescribed Vicodin to help with the pain. I can't tell you when exactly the positional headaches started but I have been doing the doctor, blood patch and lumbar drain that so many of you have tried and not fixing anything. After the blood patch I would get miserable hypertension symptoms for two days and revert back to the hypo-tension symptoms.

Come to find out, I found an obscure reference on one of the drug web sites that says you should not take narcotics if there is brain trauma as it can raise the CSF pressure. Well, la-te-da. No wonder I have a dozen nerve root cysts and four major leaks. I went cold turkey off the pain pills (misery) and the hypo-tension systems have dramatically reduced - that was three days ago. Hopefully my body will heal itself and I will not have to do the "hold very still" blood patches again.

Mylinda Casey's picture

The third in my family

For the past year I have had these symptoms and been told I have muscle tension, ect... I recently had an MRI and got news today its showing that my cerebral something is sagging but the neurologist want to double check it. I have two sisters that had suffered from this same thing having the same symptoms and being told the same things by doctors. Their MRIs even showed the same thing. They both ended up at the mayo clinic having surgery done by doctor mochrie to repair the dura. I have to go back in with a copy of my MRI and I guess I will go from their. But I have stated my sisters history to all my doctors. I know this is rare. It was hard for the doctors to believe both my sisters could have it, the doctors at mayo even did studies on them. So why can they not believe that if both my sisters can have this that for some reason it's so impossible for me...and why have I had to suffer with pain for a year.... What kind of muscle tension gives you these symptoms and this pain for a year...hopefully when I go back with my MRI they can figure this out and if it is this like my sisters fix it. I need a light at the end of this tunnel of pain idk if I can't deal with the possibility I will be stuck with it forever.....
Who knows if I have this to and am the third out of my sisters may they can come closer to finding put more about what causes it and how to prevent it.....

Serendip Visitor's picture

notes from a fellow sufferer

I am currently fighting with hypotension. I have had two blood patches that resulted in hypertension symptoms for two days and then changed back to positional headache, tinnitus and equilibrium issues. I haven't been able to work much less drive for almost a year. It is amazing how ignorant most doctors are to this problem. I have been through about 12 of them and still counting. Since I can't do much of anything, I have been spending a lot time researching this. I don't see any references to arterial and venous pressure in the posts. So I thought I would add my two cents. I have a lot of nerve root cysts and several of them are leaking. I also have had problems with my neck (C1 and C2) for many years.

The amount of CSF pressure is a function of mean arterial pressure and venous pressure. High blood pressure will cause high CSF pressure. A blockage in the veins in the head neck will cause high venous pressure and high CSF pressure. I have had multiple MRI, CT, sonogram, meylogram, MRA scans and many of the doctors have no idea what they are looking for. After understanding how CSF is produced and the symptoms I have, I had to practically demand that a MRV (MRI of the veins) be done. I have had to learn to read my own scans and point things out I think are wrong. Sadly, I usually get told that "that's normal" when in fact it isn't.

In my case, it is looking like C2 is rotated and compressing the right jugular vein, especially when I turn my head to the right. This causes me to have severe migraines. I am convinced that these episodes of high pressure have caused the nerve root cysts and leaks. I am currently waiting on another first appointment with a neurosurgeon to review this. He is talking about putting in a lumbar shunt. I haven't discussed the problems with C2 with him yet.

Anyway, if you guys are looking reasons why this happens, take a look at your neck and possible venous blockages. I also found a paper that mentioned that the tissue that absorbs the CSF is rich in vitamin A.

Serendip Visitor's picture

Dear fellow sufferer

First, get on Facebook to and ask Lee Campbell to get you into the private CSF leaker blog as there is great info on it, that is if you are not on it already. Second, you must fly out to see Dr. Linda Gray-Leithe at Duke University in Raleigh-Durham, NC. She is the only person who could find my leak and patch it with a special myelogram called a dynamic myelogram. No one else does them with the accuracy of her (she is a radiologist not a neurologist). She might find leaks that you didn't know were there as she has done with patients who had several leaks.

Don't give up; I was bad off and after seeing her am upright and working full days. I'm far from perfect but can manage my symptoms. She's the best!

Her assistant's name is Horace and his number is 919-452-9502. He can get you an appointment with her asap.

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