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!
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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.