spontaneous CSF leak

*denise · 06-01-2012, 12:37 PM

I am new to this forum and looking for solutions. I was diagnosed in Jan 12 w CSF leak. Have been hospitalized 4 times w 4 blood patches & have had numerous tests to locate leak(s) & determine next steps. Currently on extended med leave as can not sit up for long periods of time w out head feeling empty, build up of pressure & fluid leaks from my nose. I am trying to learn if anyone has come across self help measures that have worked for them? I am eating better, taking calcium & fish oil & will start a water aerobics class next week. I have read that yoga strengthens your inner core which is your spinal cord. I don't think I am quite ready for that so will see how water aerobics works to perhaps stimulate the production of CSF. My neurosurgeon here characterizes this condition as very frustrating for the patient as well as the doctor trying to treat them. He tells me it will be a long slow recovery. I am just trying to stay out of the hospital. In addition to self help strategies I would be interested to learn if there are any other medical treatments beside blood patches and infusions that have worked or anything new happening. I look forward to hearing your responses. Thank you.

vigipatrick · 01-19-2012, 11:32 PM

Quote:

Originally Posted by doctorslie

I have been diagnoised with , first a pituitary macroadenoma and ICHP and then a CSF leak. I have been to 2 of the most well respected university hospital systems in the state, only to have doctors disagree. I had a radioactive cisternogram (lumbar puncture and all) that came back "dramatically abnormal" which prompted a call from my neurologist to get to this surgeon at this big university hospital asap, but Do Not Fly. He made all of the arrangements and off we go. They told us to expect to stay 7 to 10 days for the surgery, spent time explaining it to us, etc. The whole family took off work, many were flying in from all over the states. My husband and I infromed our employers that we were on our way to have this surgery and that I needed about 3 weeks off for recovery and all. No problems there. We have the first appointment with an ENT who was supposed to admit me to the hospital. Let's call him Dr. I'm Smarter Than Anyone Else In The World. He took my cisternogram and said "this is garbage" these test are not any good. He then looked up my nose for a minute and said "I do see a glistening fluid, but can't tell where it's coming from". He then said he wanted to do a 10 slice CT with contrast and went on to explain that I would have an IV, etc., and that this would take about 30 minutes. Went in for the CT, no contrast, done in five minutes. I asked the tech about it and she said "Dr. I am Smarter Than Anyone In The World, didn't order contrast. Ok, whatever the smartest doctor on earth wants. We were then ushered back into his office and he said, the CT was negative. You don't have a leak. Relief right? He then sends me over to the Neurosurgeon about the pituitary issue. Now I must say, you have never met "arrogant" like this kid. He say's why are you here? I said, Dr. I am Smarter Than Anyone In The World told me I had to see you, he said "what for"? I stupidly assumed that they exchange information or something. I said well, I don't know, he's the one who sent me over here. So Dr. Arrogant calls Dr. Smater and and Dr. Smarter tells Dr. Arrogant about my pituitary tumor. So he say's, exact words..So, alll I have to say is that when Dr. Smarter repairs this leak I will snip out the tumor. I won't look at any films, I'll just take Dr. Smarter's word, we work together all the time. We are just stunned, what happened here? My husband then said, wait, we know nothing, and I now need some answers, my wife is sick and we are paying you guys alot of money to take care of her. Dr. Arrogant said, you aren't paying me anything, the University pays me. You cannot win with a physician that gets paid no matter what they do or do not do. So, we call home and tell the local physicians what happened and they sent us to a neurologist at "big university hospital" who actually called Dr. Smarter and said, "I think your wrong". Well, that did not go over very well and they argued, then a 3rd doc got in on the argument, saying this is a low pressure headache caused by a csf leak. Finally, the neurologist said, I am sending you to another university hospital and made the referral. He was not going to fight the infamous Dr. Smarter who is 2o years his junior. I still have a leak, I still have a headache, I still feel like you know what and I still have not received care.I talked to Dr. Smarter and he said, I did not see a leak on the CT with contrast and I said "you didn't do any contrast" and he actually said, YES I DID. I said I think I would know if I had and IV Doc. His nurse later called to tell me that I was correct, but the results were still the same.
The doctor I really like told me that when things like this happen that you will often get very poor medical care because doctors don't like to be wrong. So when another physician calls about history, they will not paint you in a favorable light, just FYI. To make it more interesting, I was the Marketing Director for a large hospital system. Now I know what the patients were saying to me when they said they didn't think their doctors were listening to them THEY WERN'T. I have actually been involved in conversations with physicians about patients that they were treating. Terribly unfair in retrospect, wish I would have know then what I know now.I remember one lady came to the ER with chest pains and the doctor called her a frequent flyer in need of a case of Prozac (long time ago) and discharged her, she died on way to her car of a massive heart attack. I am just saying to all, you are in charge of your health care. Do not be afraid to fight the fight it takes to get yourself well. I am not an aggressive or abrasive person and have been very meek to this point, but now I will fight, I want my life back.. Anyone else had a similiar experience?

I absolutely love your assessments but what really made me smile, no laugh was the Mr. Perfect Doctor anaolgies. This is so true. I am experieicing the exact issues. My PCP just prescribes meds to mask the issues after thinking it was ear infection, allergies, sinus probs...etc. So I take chronic pain meds and he sent me to a pain specialist. This doctor performed a spinal injection which magnified the symptoms 10-fold and then added some.
BUT, after teeling him the ER doctor said it may be a leak, he got an appt for a neuro which takes 3mos to get into for the next week! AWESOME DUDE...but he said it wasn't a leak in the same sentence!
So, I totally AGREE! Doctors don't like to be wrong and heaven help you if you suggest a diagnosis like I did. BUT...like you said...this is my body...so when I go into this neurosurgeon on Tues...I am taking this list of symptoms a mile long!
I will take NO PRISONERS! I am tired of suffering! I am sick of these self-righteous know-it-alls! I am the same kind of person...very meek and mild and VERY GOOD at hiding my pain and suffering. BUT...no more MS. NICE PATIENT!.....

swtmisstry · 12-24-2011, 09:07 AM

First, I want to say thank you all for sharing your stories on here. I have been dealing with a leak for almost 16 years now. What I would have given for a site like this when I was first having difficulty. I was 17 years old when I first began having symptoms of a CSF leak. It took 5 years for the original diagnosis and another 5 years and 2 surgeries to finally repair the leak. I have had numerous CTs/MRIs and finally the myleogram was the tool that showed the the location of the leak. They were not able to see the extent of the leak until the myleogram. I'm not sure what medium they used for contrast (its been 6 years since the procedure). It was injected in the lower spine and then they tilted me (head down) so the contrast could travel through the spine and brain. I ended up with a secondary leak from having the myleogram. They treated that one with a couple of blood patches. The nice thing is that since they now know the location of the leak, I only have to have an MRI(with contrast) to monitor the leak and any changes to the area. The fight for treatment of this condition never ends. I belong to an HMO and every time I have symptoms I have to see an ENT in my "home" area to get a referral to "my team." Every time I see a new ENT they want to go through all of their own theories before giving me a my referral even though I tell them what my situation is. Once they finally look at my record to see the history (usually takes me getting angry and making my headaches worse), it takes several weeks for the referral to come through. Then I have to wait for an appointment with my neurosurgeon/ENT team which takes another 1-2 months. Fortunately, "my team" (a neurosurgeon and an ENT specialist) are only a 2 hour drive away and are definitely lifesavers.

pupp · 12-30-2011, 05:04 AM

Thanks for the myleogram examples.

My neurologist & his consultant anaesthetist have been very reluctant to make any more holes in my dura since I don't seem to be healing on my own from the suspected sponaneous leak.

I totally understand why he thinks it's counter intuitive to stick needles in me and possibly make it worse but I feel that after 8 months of not healing on my own we may have to crack eggs to make an omlett.

My thinking is that if they find the site of the leak they can try a blood patch there and also where they go in for the myleogram. If they don't find the leak then, if needed, they can still do a patch at the myleogram site to mend that & i'm no worse off than now.

I know that having a blood patch isn't a breeze but if it's what I need to get some relief then, knowing the risks, I would opt for it at this stage.

If there are any other tests, procedures or advice out there I'd be so thankful to hear about them!

Here's to 2012 x pupp

alexis817 · 06-16-2012, 09:08 PM

so has anyone at all found a dr that has fixed this long term???

SommerLeigh · 07-02-2012, 12:08 PM

Dr. Wouter Schievink at Cedars-Sinai in Los Angeles, CA was my neurosurgeon for my CSF leak. I was diagnosed in November of 2011. After two unsuccessful blood patches, Dr. Schievink performed the glue patch. 2 weeks after the procedure I was fully recovered. 7 months later I have had no headaches or complications. He is one of the leading doctors for CSF leaks and I encourage anyone suffering from this to see him or reach out to him.

ryaneason · 01-13-2014, 04:21 PM

Quote:

Originally Posted by SommerLeigh

Dr. Wouter Schievink at Cedars-Sinai in Los Angeles, CA was my neurosurgeon for my CSF leak. I was diagnosed in November of 2011. After two unsuccessful blood patches, Dr. Schievink performed the glue patch. 2 weeks after the procedure I was fully recovered. 7 months later I have had no headaches or complications. He is one of the leading doctors for CSF leaks and I encourage anyone suffering from this to see him or reach out to him.

I am in a similar position to where you were - I've had two blood patches with some success, but I still have a leak and symptoms (though not consistently). I'm in the process of figuring out next steps and have been in touch with Dr. Schievink - I'm getting him my scans/history now. My question to you is: did the blood patches you had prior to the glue provide any relief? How did you decide it was time to do glue (vs. additional blood patches)?

westg8 · 07-06-2012, 02:27 AM

I am 22 years old and I have a csf leak. I was in a car accident when I was 19 and was ejected out of the vehicle and I broke my face/head causing the csf leak.

Basically at random times i will get really bad headaches that will only feel better when I lay down. there is a clear (water like) liquid (not mucus) that will periodically leak out of my nose. especially if i am doing something with my head down like tying my shoes. i have had this for two and a half years now so i am pretty used to it. Most mornings i do not eat because if i do i get sick from the headaches. (unless i have medicine to help my stomach)

if i am really stressed out or cough a lot the fluid will leak out more. (im guessing from the pressure)

they said at the beginning there was a really big risk of infection and to get the surgery. but i didnt happen to have 80,000 dollars in my pocket so that was not going to happen.
it has been two and a half years and i have not gotten any infection and i am still alive. i think as long as you drink a lot of water and don't abuse your body (by drinking excessively and drugs) you should be fine.

i hate the doctors and i hate pain medicine. they always seem to mess up on something. when they were testing for my csf leak they injected this stuff into my spinal fluid and turned me upside down. I asked if i was going to have any side affects (cuz im that person) and they said not to worry there was a less than three percent chance of something happening. well that something happened, my brain swelled and i had to lay around not moving taking steroids for a week. steroids make everything taste horrible.

i decided against getting my head cut open. again. I am just going to deal with the problems i have because the surgery is not even a sure one. and at least i can walk again

i am just curious if it is really that dangerous to be walking around with a csf leak???

djflake · 03-03-2014, 08:22 PM

Quote:

Originally Posted by jmilphoto

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

So on June 17, 2008, I was riding as a passenger in a car and got this insanely painful worse than a migraine headache, which reduced slightly by laying back but man was it bad. By that evening I was in the hospital ER throwing up, and unable to function due to the explosive feeling in my head. I had not had a spinal tap to bring this on, but after going to two different hospitals and many tests from a disease specialist and long stays at those hospitals I was sent to St. Joseph's in Phx and admitted there.

I had developed a spontaneous spinal fluid leak, to which they gave me a blood patch. The pain during the patch was intense however the relief it gave me was virtually instantaneous. It worked for about a week, then failed. Back to St. Joe's I went for another, and it gave me no relief whatsoever. During the next week of hospitalization they discovered a blood clot in my brains vein system aka Left Transverse Sinus Thrombosis. They Stented that but the pain still existed in my head. Long story short I have a bone spurs in the posterior or front side, inside the T2 and T3 vertebrae where the spinal canal is, that continuously causes a CSF leak.

I have been on many pain meds, oral and patches and seriously cannot stand the side effects. The location of the spur, combined with the fact that I am Factor V Leiden (I clot to easily) and have already had a blood clot in my brain means I am not a surgical candidate for repair. So sometimes my pressure is high and sometimes it is low due to the constant pop heal pop, that is caused by the bone spurs. I have had multiple blood patches but they all have failed and that really is because I am on blood thinners, they take me off of them for a while prior to the patches and keep me off for a while after the patches but frankly the risk there is also high so they now will not do anymore blood patches. My only solution at this point...Pain Management and prayer that it will somehow spontaneously heal itself. I have been to the Neurologists at Barrow's and the Mayo Clinic and have heard from one of the doctors I do not remember which one that he knew of one patient that it was 11 years of this and then it healed itself.

The things that make it worse for me, exertion of any kind, barometric pressure changes, hormonal changes ect... Laying down gives some relief, but at this point I experience other types of headaches as a result of stress, medications, ect. on top of the CSF leak that I am now having Hemiplegic Migraines which cause periods of random paralysis on the right side of my body so if I were to have a stroke I would not even know because I am so used to ignoring the Migraines and dealing with the paralysis at home instead of calling an ambulance like the doctors would prefer just in case it might be a stroke on a weekly or even more frequently in some cases just to have them send me home and run up unnecessary hospital bills.

It all seems so daunting and I really know every case is different...I am looking at a pain pump option, but honestly I don't know how effective that will be as I already have a CSF leak that is not a surgical candidate.

The most frustrating part is the only fix being pain meds...pain meds can cause headaches too. So if you hear of any solutions please let me know as well.

I am sorry to hear you are going through this because as you know CSF headache is worse than a migraine. I understand why the doctors don't want to risk the surgery, but when I am looking at another possible 40 years of this it makes it hard to keep a positive point of view.

I wish you the best of luck and a speedy recovery.

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