glue patch? whats that... my mom just recently diagnosed with a leak... did three patchs... not working...did surgery ... she also has lupus, .... she wound up with infection in her spine,then they figured out the leak.... three patches and surgery later, shes worse i think.... and weve never been thru or heard of this before, now i look at all the posts, and other sites, and im amazed noone has come out with a good story saying their surgery or patch has healed and never have to go thru it again...seeems to be ongoing... scary...im sorry for you...just as sorry as i am for my own mom...

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

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 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???

Hi I'm 20 and suffering with a spontaneous Csf leak, been bed ridden for 6 months and hospitalised 5 times as my symptoms are pretty severe. I've got my first blood patch booked in for this Weds but just so many questions regarding it all that have gone unanswered as no one seems to know! The neurologists in my hospital and all my doctors have never seen it before so don't really know what steps to take so I'm just hoping so much that this blood patch helps!!!

Hello,

A doctor in Japan found spontaneous CSF leak from my wife's lumber and neck.
She had 1st blood patch and improved her headache and other symptoms she had. But it seems spinal fluid leak is still happening.

We brought back her contrasted MRI and CT result from Japan.

I'm trying to find a good doctor for spontaneous CSF leak in San Francisco - bay area, so she can continue the treatment locally.

Does anyone know a good doctor for spontaneous CSF leak in SF bay area?

Regards

Hello Tom,
You might want to make a New Thread, or you can use the search options to find specific things that might already be posted.

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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)?

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.

Your body continuously makes CSF fluid, and reabsorbs it normally at the same rate it makes it, thus keeping the pressures in your head stable, some people need a shunt due to making too much and the pressures getting too high which if very dangerous and can cause a lot of the symptoms you are describing. You can also have serious pain from low CSF fluid caused by a leak, kind of like your brain sinking as it cannot maintain how it is supposed to float in your head. Either way the pain is intense and of the two I would suggest the High Pressure is worse than the low on how quickly the damage can occur but either way high or low it can cause damage.

I hope this helps. I suffer from a CSF leak myself, exasterbated by other issues.