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.



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






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


Marie Ann's picture

Ear Tubes

I had several ear tubes placed which then caused all the liquid building up behind the eardrum to flow out. It was CSF (cerebrospinalfluid = brain fluid).

Unfortunately no one took heed to my word which was, please examine this fluid! Then, finally, after two failed mastoidectomies, first one exploratory, and first repair attempt, second emergency surgery 4 wks later for same, also unsuccessful, I was still not believed.

To make a long story short as I have written mine several times on this forum, I looked into the matter myself. You need to get the fluid examined for beta-2-transferrin. You drip into a small container, the contents of which must be examined in a lab in a timely matter, i.e., within 2 -6 hrs. max.

To strengthen the dura? I doubt there is such a thing except perhaps in alternative medicine to which I have to access.

Due to this debilitating condition getting worse over time, I now live in poverty. Everything I knew from my previous life has been taken from me. I volunteered to help the poor, I worked full-time, I took classes in continuing education, I was active in yoga, pilates and dance, I had a full social life.

Now I lie in bed 24/7. The pain in unbearable.

But you did not ask about all of this.

All I am saying is that if the leak is not stopped early, the defect WILL get worse to the point of disabling you possibly.

If anyone else out there has any suggestions, I, too, would be interested. But I cannot imagine any remedy which would push my herniated brain back into the dura and close a 3 cm sized hole and replace bone I am missing at the skull base, so........

Nothing more to say here.

Good luck to you and get help: FAST

Serendip Visitor Kate's picture

oh you poor thing, get another (multiple) opinions?

Marie Ann, your story made me very sad and angry!! You poor thing. Can you go and get second / third opinions etc! Keep trying.
Some (agreed not all) doctors and surgeons may like hta challenge to help somone who is a 'complex case study'
Please don't accept that this is it.

Try the Medical Teaching Hospitals?
Research TOP neurosurgeons in your area / or outside your area too ....
I hope you are doing a bit better than when you posted. Sorry you had to go through this.

Find a 'pain clinic' for the pain - get that managed? and then hopefully you will, in time , heal?

Take care,

marcia 's picture

Complications with a craniotomy

On Dec 27 of 2011 my 49 year old mother suffered a ruptured giant anuerism to the left side of her head, thankfully she woke up after passing out to call me for help, she suffered a large amount of blood on her brain. Thankfully 2 days later they performed a 12 hr surgery to have a clip installed deep in her brain. An internal shunt was installed and she recovered wonderfully, a little droop in the left of her mouth and left eye, no motor delays or physical delays what so ever. Anyway she suffered from numerous infection of the blood, stomach, lungs and wound incision resulting in the removal of all hardware in her head, to include the bone flap and ended up with VRE. My question is since after these incidences my mother has had some issues with the sight and smell of food, constantly needing medication for nausea and vomiting before after and during meals. Is there anyone out there who has dealt with these same issues or has a connection between smell and the left frontal lobe of the brain associated with surgery or in general? i need answers and can't seem to find them ?

Luana's picture

CSF Leaks

My 29 year old daughter was just diagnosed this morning with Spontaneous Intercranial Hypotension. She has been suffereing for a month now and has struggled to get care providers to listen. She's been to the ER three times, urgent care once, a pain clinic twice, and finally last week a Family Medicine Physician who finally ordered some lab. The lab came back with a high white cell count so they did a spinal tap and a CT of the head and neck. Those came back negative (which was a relieif) so he ordered an MRI with contrast which they did this morning. The physician told her she had spinal fluid leaking in her brain. Her symptoms were very different from any migraine symptoms she'd had in the past but struggled to get anyone to listen or believe it could be something else.

For the past month different providers have been throwing all kinds of drugs at her and nothing worked. Since she had a history of migraines (she hadn't had one in over five years) they just pigeon holed her into the migraine bucket and basically said there wasn't anything else they could do so they got her an appointment with neurologist but it's not until April 20, 2012!! Over the past month she's had injections in the back of her head, 3 different pain killers prescribed including percocet, oral steroids, and a non narcotic pain medication. One physician also had her take a depression test. Nothing helped her.

Since my daughter is 600 miles away from home and had cancer at 27 I was extremely worried so I called my best friend who's an RN and she told us to have the pain clinic set her up with an appointment with a family physician (she moved last April and didn't have a PCP yet) and what tests to ask the family physician for ie: Lab and an MRI w/contrast of the brain.

Thank goodness we finally found out what the problem is. We are releived it can be corrected with no permanent damage. She struggles to put thoughts together, noise is extremely painful, she would feel worse when she stood as opposed to lying down. She is so tired and fatigued from the struggle to get through the past 30 days which I'm sure her is related to her body trying to compensate or heal itself and of course the pain and extreme pressure in her head.

I'm sure her doctor, clinic, and hospital bills are going to be awful due to the run around. I know her boss was getting upset about the ill calls and time off for doctors appointments but thankfully he's been more sympathetic the past week especially since she has never used more than one or two sick days in a year until this happened. I am glad that they know what's wrong now and that it can be corrected. They are working on a care plan for her that includes a blood plug. They may do a couple more tests to try to determine the exact location of the leak.

I write this now in the hope that others will not be afraid to push providers for answers. We're their customers and are paying for their service. If I hadn't called my friend to ask for advice on what to do next when everyone had pretty much washed their hands of it, who knows where she'd be by April 20th?? I wish all of you the best and hope you all can finally get some relief from what is an extremely painful condition!

Serendip Visitor's picture

Your daughter

I am so happy that your daughter found relief. Have you heard of what to do if a leak is not found? I have low CSF fluid and it was brought to my attention by doctors that maybe I do not have a leak but produce too little of it. Any answers or docs you could point me toward?



Marie Ann's picture

Am happy for your daughter

It is always the same runaround, isn't it.....unbelievable.....I really like the point you emphasize about we being the providers' customers who pay their salaries! Their nice lifestyle is because of us!

Unfortunately here in Germany you cannot "push" a provider for an answer. I have tried that, in a calm manner, in an emotional manner, in a desperate manner, and the result was always the same: I was asked to leave the office. Here we have what is called "5-minute medicine." Not even my GP has the full picture on all my illnesses and health problems. To say, go get another GP: been there, tried that, and only got the same reaction: "What do you expect from me? I do not have time to read medical files, let alone take on a problem like yours. You are out of luck and have to learn to live with it."

OR, the other version:

"Your illness is psychological."

They say this to me, I have to suscept myself to this type of treatment despite that fact that I have had two operations on the skull/brain and my diagnosis was SEEN during those operations (and of course has been included in the hospital reports), unfortunately the 11 yrs. before was never taken seriously so before the first operation not even a ct scan had been done of the skull. I have a spontaneous osteodura defect, encephalocele, and persistent liquorrhoe. The pain and pressure in the skull forces me to lie down almost 24/7. I can only be up and about for brief periods, and then not symptom-free, but it is bearable. Then it becomes unbearable, and I have to lie down.

And I cannot find a medical practicioner who will be my advocate. After so many years I am bitter of full of hatred for those who have treated me as described above. How dare they. But I am helpless. There is nothing I can do to change the system. I cannot force a doctor to have compassion where there is none; I cannot force a doctor to have a calling when he has none; I cannot force a doctor to believe me if he thinks he knows all there is to know; I cannot force a doctor to help me research here in Europe to find competent surgical treatment if he is not willing to look further than the tip of his nose. And on my own, I have given up.

Yes, you will have psychological problems such as depression lying in bed 24/7 when your active life has been taken away from you by illness. Who wouldn't? Especially when support is lacking in being believed that you really have the symptoms you say you do. The fact that I have the above diagnosis is no longer questioned because I have it in black and white. But because there is no one to compare me to, they don't believe me when I say the pressure in the skull is so great, I have to lie down. I have proven that I have liquorrhoe. The very hospital where I was operated on twice continued to do the test incorrectly. The test for beta-2-transferrin has to be done in timely manner, within hrs. after the sample has been taken. Otherwise you run the risk of getting a false negative. I had so many false negatives although literally the clear, watery fluid was flowing out constantly through an ear tube they kept placing and replacing.

So I look it up on my own, went unannounced to the lab, walked through the doors for "authorized personnel only" and was soooo LUCKY to meet a doctor who listened to me and took my problem seriously, I "leaked" and filled a small plastic container up to the tippity-top and only then finally got my positive test results I needed to be believed.THAT is crazy, I am sorry.....

(You know, the though has crossed my mind that perhaps the surgeon did not WANT these results to come out for whatever reason....I don't know, am not behind the scenes, but I have received no support whatsoever from him for my disability petition even though he admitted he had never in his life ever seen what he saw inside my skull. The CSF literally squirted out at him when he opened the skull and I was missing bone where most people aren't, and I had that encephalocele and big hole in the dura....)

The hospital lab fiasco was back in 2009....now it is 2012 and doctors are now saying, although nothing has changed, except that I no longer have ear tubes and so I leak through the nose...they are doubting that it is CSF again!

So I phoned all the local labs outside of the hospital (have no access to that lab anymore as I am no longer a patient of the hospital) and they send the sample away for testing which means hrs. pass during which the sample usually becomes useless.

There is a GREAT CSF support group on Facebook in case you have not heard of it. They are starting a fundraiser for a "leaker" in the UK who has no access to competent medical professionals who can help her. This fundraising group also has the long-term goal of making this illness known because most sufferers are tormented needlessly due to not being believed and taken seriously by those around them.

That is why these forums have helped me so much. They are really the only place I know I will be taken seriously. Even my lawyer I hired to try to get disability benefits knows my files inside and out and still every now and again he will ask me: "Are you SURE you have to be in bed ALL THAT TIME?" It is hard for others to believe. And I know my lawyer takes me seriously, he even drives me sometimes to doctor appointments. But he asks that question every few weeks....because when he talks to me, while I am lying down, I am a normal, functioning (mentally) person! And he is also hearing from every doctor we consult the same story about yes, she has the defect, but no, these symptoms cannot possibly be true. Or, my surgeon who performed the two failed surgeries said, I cannot confirm your symptoms. Those are purely subjective. And the court has sent me to see two specialists, both psychiatrists....so my lawyer, too, although on "my side" sometimes asks himself as well, who is really telling the truth here.

It is truly awful to suffer from a rare illness. The illness itself is horrific, taking one's life away, but the added slap in the face of not being believed.....that to me is truly the worst of it all because psychological pain is almost more unbearable somehow.

Oh well, good night for now.

(pls. excuse any typos...too tired to proofread.....lying in bed all the time since 2006 has taken its toll on my endurance = non-existent...)


Serendip Visitor's picture

Facebook support group for CSF leaks

Can someone tell me how to find information on the support group mentioned above by Marie?



marie's picture

csf forum on facebook

if that does not work, go to facebook.com
then search for csf leaks and the forum will show up

teresa's picture

spinal leak(csf)

Hi every1! I have been going thru the same thing for the last past 3 yrs. It started for me in feb. 09 when i had my 4 th child. I had the epidural shot for pain. A few days after returning home i started having bad headaches, nausea, Fluid in ear, sensitive to light and noise, neck stiffness, floaters in my vision, and off balance, and so on. I been from doctor to doctor. They cant tell me whats wrong. They told me migrane, im crazy, and so on. It is so sad to see this is what our medical feild has come to. I have 4 kids my husband had to stop working to help me at the house because i am in a wheel chair due to this. We barely have a income to pay our house note. This is so sad people life get turned upside down and the medical experts dont see it. This lady gave me 3 shots in da back while giving me the epidural. What a mess up. Now shes still has her job. But im the one suppose to be crazy!!! This has taken a toll on me and my family.
I pray some better can be done for all of us that is suffering from this. Currently march 8,2012 i still havnt gotten the help i need.


Luana's picture

Hi Marie, It made me very sad

Hi Marie,
It made me very sad to read your story. I can't imagine what it must be like to deal with something like this for such a long period of time. Just dealing with the frustration of the situation alone is enough to send a person over edge. I know my daughter called crying after a couple of the Dr. visits this past month because she felt hurt that no one seemed to beleive her let alone care.

An anesthesiologist is performing the blood patch at a hospital near her home in about 15 minutes so hopefully she'll have some releif soon and can get back to normal again.

Thanks so much for your story and kind words. I hope very soon someone will listen to you and go the extra distance to help you try to resume a more normal lifestyle. Best Wishes! Luana

Serendip Visitor's picture

Myelogram Blood Patch - Intercrainal Hypotension

Well I Just read through some of the posts and wanted to tell you all about my experience - In June 2011 last year my ears went fuzzy, like on a plane and I could not clear them. Got told it was Ear Infection, then the vomitting started, Emergency room, Ear Infection sent home, 4 days later again - emergency room - CT/MRI - found Brain Bleed, hospital for 3 days and sent home, 7 days later - here we go again, emergency room and emergency burr holes and brain drain. Home after 5 days - on Steriods, made me feel like a drunk - No one could tell me why, also got weird headaches, food no taste and other weird feelings, tired all the time, thought I was in a deep depression. However they had also found a benign Meningioma and sent me to Duke Univeristy Hospital to see a specailist there. I did not go to Duke until Dec 20th - so had been fighting this weird feelings for 6 months - after talk to the Dr for just a few moments, he mentioned Intercranial Pressure. To cut a long story short, I went back on February 16th 2012 and had a MYLOGRAM BLOOD PATCH 6 - 8 leaks were found and with in hours felt like my old self, almost felt they took my head and gave me back my old one. I was amazed and everyone I have spoken to and seen can't believe the difference in me. My outlook on life has changed back to the old me and I feel like me befor I got sick - 9 months ago. Thank you Dr Linda Gray at Duke.

kim goodrich's picture

my symptoms after a head injury

My symptoms have just been described! I received a closed head injury in march '11 from a car accident. I've never been the same. My neurologist claims its either from the car wreck or from stress but has no positive answer. I now have something I can present him with and we can discuss it.!!! Im so thrilled to hear that this could very well be something and that I can do something about it.

Hugh's picture

CSF leakage due to surgery

Hi there, I had surgery to remove a cyst from my right Sphenoid Sinus last Feb (2011) Also the ENT Surgeon was to perform a Treffine on my left Frontal Sinus to investigate a large Ostioma tumour , which showed up on a CT Scan. While performing this he not only drilled straight through the tumour, but carried on through the sinus and into and through the Dura. I had emergency surgery to repair the hole. The Surgeon informed me it was repaired using bone wax and tissue. Hence my enquiry to anyone that can reply. Can I still fly or is the cabin pressure in an aircraft going to affect the repair as to it opening up again.
Regarding headaches' I've had severe occiptal (back of head) pain going on 3 years'. After numerous scans' 8 x MRI / 6xCT two with contrast which shows compression of the Spinal Cord at C3-4, C4-5 and C5-6. The Drs' and Neurologist think this is causing the headaches'. I'm on a low dose of Amitryptilene 20 mg which helps greatly.

Serendip Visitor's picture

CSF due to surgery

Hi there,

Please get a new ENT Doctor. Be careful with the Amitryptilene.

Thanks, Connie

Serendip Visitor's picture

low pressure headaches

I am struggling to come to terms with what has happened to me and was in tears when i cam upon this site. just to know that i was not alone...i thought i was going insane - everyone was telling me i had stress and low mood I knew it was more than that. Even giving the doctor all my symtomsshe still treated me for stress and i had antidepresants etc to cut a long story short . eventually i had bilateral burrhole surgery for subdural hematomait - it is thought the leak caused the bleeds. and they never did find the site of the lek. I am just thankful all the nasty headaches and other stuff such as hearing strange noises has gone. Now struggling to get over it all and worried that it may all happen again.

Serendip Visitor's picture

Low Pressure Headaches

All the stress I am going through right now makes me feel frightened. The question I have is this - - - - Could longterm stress (ie 4 years +) cause a spontaneous CSF leak? And - what are the chances of a leak happening again? Once a leak has occurred does this make the area more prone to it happening again? The doctors all say i am cured with the burr hole surgery to evacuate the bleeding - MRI scan did not show where the leak occurred. My doctor thinks I am overreacting - but this is very real to me.

thanks for listening!

Serendip Visitor's picture


MRI scans often do not show CSF leaks. I've been through three of them, best and brightest and they don't often show up on MRIs. You need a dynamic CT myelogram and Dr. Gray is the expert on these!

Serendip Visitor's picture

CSF Leaks

It's a difficult condition, and we have a medical foundation in the making at

Serendip Visitor's picture

medical foundation for CSF leaks

Where is the foundation?

Serendip Visitor's picture

i am into my leave my man

i am into my leave my man alone kit/dual casting with Dr.(), and today he emailed me out of the blue. this is on the 5th day of the 1st spell and he is already contacting me. wow, i was starting to think i was beating a dead horse since i have heard from him in 1 month. thank you so much, i can not wait to start the love me again dual casting. the incense and oils smell very good. thank you for helping me. i am going to recommend your service to my friends. thank you again and thank you Dr Gboco!!!!!!!

Serendip Visitor's picture

CSF Leak

I have recently been diagnosed with spontaneous CSF Leak. I guess I am fortunate as I was first diagnosed with Migraines (never before had them) but after a few days I KNEW something was not right and did research on my symptoms and found info on CSF leaks and I matched it to the tee. I emailed my doctor about this info and made an appt. She stated she read my email and did some research and she concurred with me and promptly sent me to a neuralogist. Just had an MRI without contrast (not sure why). He has also talked about a blood patch. Reading all these comments really freaks me out. Has ANYONE recovered completely?? When I asked what to do to heal this (without patch) he stated don't do anything to strenuous. REALLY??? Being on my feet for 15 minutes wipes me out. I will say that the pain is not SCREAMING anymore but it still is painful plus my ears feel very pressurized along with the ringing and sometimes "engine sounds" Tomorrow I have to go back to work, not sure how I will do this, just know I will have to take alot of breaks to lay down. It has been 7 days and I can not imagine months or years of this. Some encouraging news from people who have recovered completely would be nice.....are you out there??


Pocket Rocket's picture

Hi Betsy how are you now?

I am resting at the moment at home. But as I am on my own I do need to do reduced domestic stuff means cant be totally bed rest. I tried to go to work and failed many time.

I am desperate to get to back to work but to get back to Neuro Professor seems so far away which will be very bad if this rest is not going to heal me.

Anyone here knows any specialist in Wales or in UK who could help me?

Thank you.

B. Presnell's picture

Damage from enduring this condition?

I, too, would be interested in anyone who thinks they have recovered completely. Are they sympton free including hearing, tinnitus, and "swishing" noises? Also, what exercise do they take. Also, anyone with any permanent neurological damage---memory, confusion, lack of concentration, etc. ?????

jill's picture

Damage from enduring this condition?

I consider myself now fully recovered from my spontaneous leak - my dura ripped with extreme coughing but not diagnosed for more than six months - had blood patch which didn't work and eventually just resorted to staying horizontal - which worked eventually.
I had uncomfortable feelings when standing up for about two years post recovery - whooshing sounds and dragging feelings at the base of my skull. These never materialised into any problems - I just felt that nerves etc were still bruised and taking time to recover (purely my opinion - no medical base for this).
I completely avoided doing any excercise which needed me to use my core muscles (any heavy lifting) - in fact I still never lift anything which I have to really strain to lift - just not worth it. I avoided dancing for some time - I was extremely wary of doing spins. I started jogging again as soon as I felt like it. I have, and will continue to avoid any fair ground rides/theme parks - just doesn't seem worth taking the risk to me.
Life is now back to normal (although I would never have believed that would be possible when I was so poorly for so long). Even if it were to happen again, at least now would recognise the symptoms and immediately rest - which I think would help the leak to heal so much quicker.
Hope that this is helpful.

B. Presnell's picture

Reply and question

Did you ever have a blood patch---how are you now?

Serendip Visitor's picture

I had a blood patch done 2

I had a blood patch done 2 1/2 yrs ago after spending weeks flat on the bed. It took some time, but it worked. I am more or less symptom free now, but I take extra care and do not overdo things, especially lifting.

Serendip Visitor's picture

CSF Leak

I had a Myelogram Blood Patch done in February and I am now 95% back to normal, so I can't waterski anymore but at almost 60 years old so what. My mental state and attitude to life is so more like me. Its had been a long 8 months but now I just get tired and tend to fall asleep in the evenings, but hey I am back.- I had no trauma just brain bleeds, and had emergency sugery in July last year to drain the blood. then months of not feeling right until I saw a doctor at Duke University Hospital who diagnosed Intercranial Pressure problem and now all is well. I still have a meningioma to deal with but I am back.

Serendip Visitor's picture

You are lucky to have that doctor

You were lucky to have a doctor who took you seriously and actually was willing to look something up!

I did hear on Facebook (the CSF forum there) from a woman who wrote in stating that, as in most cases, she was healed so her life went on. Then she realized she "owed" it to the forum to at least check in with her positive progress report.

If you do not have a giant gaping hole in your head, as I unfortunately do, I have heard success stories. This is just to encourage you a bit, all is not lost. There are a lot more people on the Facebook forum. Just go to Facebook and search for "CSF" and it will pop up. There are lots of people on there with actual names of doctors, places they've been for treatment. The problem is, we humans are basically different. No two people have the exact same leak! And doctors are fallible. And there are no guarantees in life and no right to health. We all have our turn at some point in dealing with illness and death. It just seems to come as a shock whenever it hits YOU (and everyone else I have ever know faced with illness and ultimately death). At least, that is how it was with me. Unexpected to no end, and years of not being taken seriously.

Even after the confirmation, two failed surgeries, one neurologist had the NERVE to tell me I had migraines, when I also had never had them before. It was a load of baloney and, well, I will stop here. Only wanted to say something encouraging for a change and it is turning now, so good luck, and check out Facebook.

Jillikins's picture

CSF Leak

Dear Betsy
Just a short note to confirm that there are people out there who have recovered from this - me, for one.

I must admit that I was ill for a long time before I was diagnosed (about seven months), by which time I was convinced I had a brain tumour, or similar, and would die. Obviously not the case. But still scary to be diagnosed with a condition that most medics have never even heard of.

I did have a blood patch - it didn't work for me. In the end, I think I cured myself by remaining horizontal for as much time as possible. I kept trying to work through the pain but realised that this just kept the leak going.

I had my spontaneous leak in 2005 and it took about eighteen months before I had recovered to such a level as I could get on with my life - I think if I had been diagnosed earlier and had rested at the beginning, I am sure I would have recovered much quicker.

I still feel vulnerable in my head at times and there are still things which I wouldn't do - really heavy lifting for example. Occasionally I still get that dragging feeling at the back of my head and pulling on my eyes - but I think that some nerves were slightly damaged in the process and they have not fully recovered - only my guess though.

Anyway good luck. Please take it easy for as long as possible and stay horizontal when you can - it will help the leak heal.

B. Presnell's picture

Similar experience

I would like to have an email or verbal contact with you. I have just been diagnosed and really would like to discuss this with someone. I was having a baseline MRI with no active problems and the neurologist found this condition. (I had only had mild headaches and lack of concentration issues). I am not sure how this comment section works, but would love to talk to you as quick as possible as I am going to get a 2nd blood patch---Please reply to my email address---I am a very healthy, active female.

Serendip Visitor's picture

CSF Leaks - Myelogram Blood Patch

You can during the day Monday - Friday 8am - 5pm on my work # If I do not answer leave me a message and I will call you back, - My name is Maggie Ebersold and I would be happy to talk to you about this.

Kane's picture

Following Up

Not sure if you wanted to speak directly with me, but if so please feel free to contact me at

I travel a lot so please be patient as it may take me a few days to respond.



Mary Powell's picture

contacting you


Your contact info did not post. Can you e-mail me at ?

Serendip Visitor's picture

Kane's phone number


Can I call you to discuss CSF issues? If so, please e-mail me your number at


Do you or does anyone know of cardio exercise that is ok to do after the BP when you are still having irritated head symptoms or would you just not do anything?



Serendip Visitor's picture

Mary, I wouldn't do any


I wouldn't do any cardio yet. I had my last BP at the end of March and only started doing cardio recently.
I have had residual symptoms and they were intensified when I tried to move too quickly or exercise.
Good luck

Mary Powell's picture

Your cardio comment Denise


Can you e-mail me at ? I would like to speak to you more about this condition as I believe it would help me cope. Perhaps we can exchange phone numbers?

Serendip Visitor's picture

my email address


email me directly and then I can give you my phone number and we can talk. I think it would help us both.


Serendip Visitor's picture

What is your e-mail address?

I will e-mail you but need your e-mail address. please send it to

Mary Powell's picture

Denise on cardio with CSF leaks


I tried swimming today and feel better than I have in awhile. Have you tried swimming? Can you let me know how you did if so? I doggy paddled for 30 minutes or so and my head has felt great so far. Please contact me or reply to this on the blog.


Mary Powell

Serendip Visitor's picture

Mary, Sorry I have been


Sorry I have been waiting to here from you. I didn't realize I left my w
Email out. It is
I think swimming is the best. My neurologist suggested starting with that early on. I even swam when I was suffering pretty bad.
I have to tell you I've been symptom free for two weeks now! I that I would never get better. There is hope! Email soon.

Serendip Visitor's picture



Was your leak ever found or did you have low pressure only? My leak was not found so I was wondering if I am producing too little of fluid, something my doctors mentioned.

Do you suggest any supplements to take to improve pressure?



Serendip Visitor's picture

Accupuncture for Possible Solution

I had a blood patch in February 2011 which sealed my CSF Leak. However, I thought I would share what I learned today. I saw a Taiwanese accupunturist for a different reason today. As she was asking my medical history I happened to mention my Spontaneous CSF Leak experience. She got pretty excited and said how important it was that I shared this with her. She had a male patient that had suffered since he was in his late teens and even had the fluid leaking out of his ears. Nothing he had tried had worked. The Accupunturist was able to completely solve his issue and he is still headache free today. In our session, she worked to support my spine and my balance in my body in the effort to prevent another CSF Leak in the future. She also said there was still residual issues linked to this even though I had no symptoms such as the headache.

I share this in the hopes that maybe some of you will find an Accupunturist who is knowledgeable or willing to explore how they might bring you a solution that mainstream medicine is not able to provide you. As I learned in my own journey, we have to take responsibility for our health and for the treatment program as no one else is looking our for our best interest. The truth is, very few medical professionals understand or even acknowledge the CSF Leak is an issue. I did see it mentioned in two episodes of Grays Anatomy so maybe it will become more commonly known in the future.

Good luck and try accupunture... What do you have to loose?

Ruth Toops's picture

acupuncture works

Our 13 years old grandson has had a headache since the evening of Jan. 17, 2012. That day he took an inconsequential fall off his bike. He did not hit his head and didn't even mention the fall until several days later when he still had the headache.

We have suspected from the beginning that he had a dura leak; it seemed to match the symptoms, except it did not get better when he was lying down.

The doctors have done MRI, CT scan, EEG, and lumbar puncture, all normal.

On our own (not insurance paid) we went to an acupuncturist who helped him become pain free for several hours. Since then, two treatments a week, average, he is now pain free for 26 hours following each treatment.

The doctors are treating him for migraine, just increasing and increasing the meds which do nothing for him. Children's Hospital, in Los Angeles, basically wrote him off. The neurologist says live with it. He is not able to go to school, be out of bed, or function, except after acupuncture.

That do we do next?

Thank you.

Serendip Visitor's picture

My dural hole is 3 cm long

Possibly acupuncture could work in terms of feeling better, but it certainly will not repair a hole of that size. The osteo defect is even larger. And the herniated brain tissue will not "go back into place."

Acupuncture here costs a lot and without having been able to work now for so many years, I have nothing left. I am eligible for the free food handouts which are comprised of whatever the local grocers are ready to throw out. I have other health issues for which I require medicines not covered by the insurance and cannot afford those. I cannot afford to get my dental work done.

It is all due to the two failed operations which made the defects larger and due to the missing mastoid they pulverized away to get a "good view" and never wasted a moment's thought as to what this woman is going to do afterwards without that part of her skull! At least before the operations and the ear tubes I was able to work! I felt like crap all of the time, but I was still able to function! That has been taken away from me completely.

I am sorry, right before the holiday season, I have nothing, absolutely nothing positive to say about this. There are no alternatives out there accessible to me.

As long as I can stand (which is not very long and not very often) and talk, I need to focus on how to make the voices heard of countless numbers of patients who have been misdiagnosed, not taken seriously and were subject to malpractice.

That is what I need to hear on this forum and anyone out there who has an inkling of where I can direct that energy, please write in.

I no longer believe I will gain access to competent surgeons who can repair that defect.

Toni's picture

I found the following link

I found the following link great! I suggested to my doctor after still not finding my leak creating all of my low pressure headaches to put me on medication that will increase the pressure to balance me out. She let me know that she had discussed my case with a headache specialist and he made the same recommendation. Please check out this link if you are having headaches that go away when you lay down and they happen daily and the pain increases when standing up. I was having sinus pressure and pain, headaches that increased when I was not lying down and no medications over the counter would work. Excedrin extra strength did help take some of the edge off. check it out


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Serendip Visitor's picture


Most of this summer I have been having really bad headaches. Started with sinus infection that I left untreated for weeks I eventually got medicine and cleared it up. I continued getting headaches daily and then my hearing started to go in my left ear. So I went back to the Dr. They told me that maybe the sinus infection didn't go away so they doubled me up on medications and gave me Prednisone for my ear pain/plugged feeling. While I was on Prednisone I felt amazing. Once I was done with the treatment I started right back up with daily headaches. As soon as I stood up in the morning it would hit me. Sometimes the pain was so severe I was crying on the couch laying down when I should have been getting ready for work. After trying everything I could think of to treat it with no success I finally went to the dr again. The doctor thought that I had sinusitis and ordered a CT scan of my sinuses. When the test came back normal the response was since it was not what was expected she didn't know what to do. I called the Dr. a few days later because they were going to hope I would fall through the cracks. I tried to do my own research and come up with different things that could be wrong. I scheduled an appointment with an allergist, I went to the Chiropractor for an adjustment, and I did research online every night. Going to the Chiropractor was the worst thing I could have done, it brought on the most severe pain I have ever had! I was calling the doctor everyday sometimes in tears. The women at the front would make comments like "your are still in pain". Finally I had to yell at one of the nurses and explained that I am trying to do what the right thing is and threaten to go to the ER daily if they didn't do something and switch doctors. Finally, I was able to see a Dr. that did motor tests and looked in my eyes. When she looked in my eyes she said something was not right. She was able to see where there was pressure or something pressing on the back of my eyes. She got me in for a rush MRI where the outcome was that I have low intracranial pressure. Since I didn't have any injury or trauma they were concerned. It has now been since at least 3 months of daily pain. I still have not received a blood patch and bed rest is killing me.

I guess all I have to say is fight! If you know something is wrong and the doctors just are not helping call them every day and make them do their job!! I finally was able to stop calling daily and for a change they call me. Don't let yourself fall through the cracks.

Serendip Visitor's picture


You have no idea what strength reading these lines has given me!

This is exactly the medicine I need(!): Others who have had to fight, will ADMIT that it IS a battle, that so many doctors are NOT doing their jobs must share to spread hope, and ENERGY TO CONTINUE THE BATTLE.

I honestly do not want to hear about all the "nice" stories which worked out.

I suffer from four serious illnesses: skin cancer, fibromyalgia, spontaneous osteo-dura defect and hernias on both sides.

I write "serious" because they are all potentially life-threatening, including, though indirectly, yes, the fibromyalgia. But I will not go into that here. This forum is for another purpose.

In all four cases I had to search for YEARS to get my diagnoses confirmed. I went running from specialist to specialist, ....oh, you know what, I cannot even bear to repeat it.

What I need to help ME, which is why I am on this forum, also to encourage others who keep hearing it's "all in their head" (yes, it really IS in your head, you have a leak or some other problem!) is to hear from other "fighters" out there who did not give up and got results. I am not talking about healing. I am talking: results! We need to encourage each other not to give up.

To listen to how others are lucky to have such wonderful doctors does not help me one iota here in Munich! I am stuck in this horrible situation and I need to be in contact with and hear stories from people who have gone through the same hell I have.

Thanks so much for lighting the fire within me.....the flame was threatening to go out forever.

Patients are in a weak position. What if patients, except for the emergency and IU cases, simply boycotted doctors and hospital for awhile.

It has gotten to the point where I dread going to see a doctor of any kind. I feel like a mistreated dog, cowering in the corner with its tail between its legs. How could I have let it come to this? Lack of hearing words like yours.

I will keep them in mind when I call again tomorrow.


Serendip Visitor's picture

Thank you. You have to fight

Thank you. You have to fight for the treatment you deserve now a days and it is mind-blowing how much they get paid for patients having to do all the work. My neurologist says things like "So what do you want to do" my answer always is whatever you recommend I do. ?? Good luck with your fight!

Serendip Visitor's picture

And I thought it was only like that here.....

So this is quite interesting. Patients ALL OVER are getting the same arrogant, inconsiderate treatment.....I honestly thought it was a German thing, or a national insurance problem. (I am writing this fully aware of the fact that NO INSURANCE does not get you anywhere either.....so all those out there against a national insurance plan due to poor treatment they fear they will be subject to, well, even though they have a point there, it does not look like those with the private insurance coverage are getting much better treatment!)

Hey, at least your doctor was nice enough to ASK you what you would like to do as opposed to throwing you out of the office as has happened to me on numerous occasions. Four times I was asked to leave. The other times the doctors simply brushed me off by saying, "you have been dealt a bad hand" and "do not even think for a minute that our insurance system is going to pay for you to go seek the help of some miracle healer in Timbuktu" (this was in response to a question the doctor asked ME. He wanted to know if I had heard of any specialists and I said, yes. When he asked where, I mentioned Dr. Schievink in the U.S. That's when I got the lecture on miracle healers in Timbuktu!

One might say, gee, Marie, maybe it's your attitude....at this point you're d***** right it is! After what I have been through, I have developed a very low opinion of doctors in general and to even hear the word mentioned sets me off. So I had a 9-month time out, WITH therapy to try to make sense of it all. The conclusion is that it makes no sense whatsoever, but to be in a constant state of rage is not helping the situation any. I have an operation of a different nature coming up and in all fairness must say that in this case I know I am in good hands. But it has nothing to do with the CSF problems so this is not the place.

Yes, you CAN get lucky and receive competent medical care by a physician who is in it because he or she has a calling. But those people are far and few between.

Thanks again and should I not hear from you, enjoy the holidays.

Kind regards,

Serendip Visitor's picture

The Psycho Diagnosis

Can someone, anyone, out there give me a plausible explanation as to why doctors will say symptoms one experiences are the result of a psychological illness if they do not have a test yet to prove something?

A person wrote recently about the strange taste and fluid loss, and was told it is all psychological. Hello! The person had brain surgery and it is VERY LIKELY that he/she truly DOES have a CSF leak!

I have gone through hell due to this not-being-believed by members of the medical profession, and not just for one illness.

And in each case, four in all, it turned out, once the illness had progressed to a certain degree, that I was right! Getting the medical documentation to "prove" I was not imagining things after all does not make up for all that agony of not having been taken seriously.

For some strange reason, if the doctors can find nothing, family and friends tend to also jump on the psycho wagon along with the doctors.

I am an intelligent (at least semi-intelligent) person, once functioning, living life to the fullest. Why on earth would I begin to suddenly start imagining things?

I am honest about this, I would truly like to hear an explanation that will help me be able to forgive all those diagnosticians who cannot simply say, "Gee, I hear you, but I cannot find anything. But with your description of things, it sure does sound like ......(fill in the blank)," not only in my case, but in everyone else's who has gone through the same torture. Yes, it is torture being told you are imagining things when they are, indeed, real. And everytime I read those words "I was told it is psychological" written by someone else, I become so livid. Something needs to be done about this as it is unacceptable.

Are there any lobbies out there for patients??!?

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