Finding a Doctor: How important is it to find a doctor who specifically does blood patches for spontaneous CSF leaks? My neurologist does not do the procedure himself but said I could go to the hospital to have it done. I hoped for some advice from those who’ve been through this crazy scary diagnosis:ġ. I now can usually be “up” (though relatively inactive) for about four hours, then lie down for an hour, then up again for three more hours until the headache becomes unbearable. Given I seem to be improving with increased water/caffeine intake, I decided to hold off doing a blood patch to see if my body will heal itself. I did a steroid pack and dramatically increased my water and caffeine intake, which lessened my symptoms noticeably, and I just got MRI results back that show the leak is “small” located in my upper lumbar spine. After reading other people’s stories and experiences, I’m so thankful to have been diagnosed early on in the process as I can’t imagine living with this for years.Īfter some unsuccessful treatments early on didn’t work (occipital nerve block injections and two different drugs for nerve pain and anti-seizures), my neurologist suspected CSF leak. Hello: I first experienced symptoms eight weeks ago that came out of nowhere (unbearable headache when upright, nausea, tightness in throat/trouble swallowing, changes in taste and vision, ringing in ears, fatigue, brain fog). ![]() ![]() If you think you have an emergency, please call your doctor or emergency services immediately. The information we share in this community is not intended or implied to be a substitute for professional medical advice, help, diagnosis, or treatment. The Spinal CSF Leak Foundation does not guarantee or make any warranties, express or implied, as to the quality of medical advice, advice, treatment, or care given by any physician whose contact information we share. Mention or discussion of doctors who treat spinal CSF leaks does not constitute a recommendation, endorsement, or certification of these physicians. We do not have any ownership or direct financial interest in any of the specific doctors or clinics that may be mentioned within this community, or the doctors or facilities that are on our Medical Advisory Board. We also do not offer medical advice, provide individual advocacy to patients or caregivers, or direct any medical care. We are not a medical facility, and we do not treat patients. The content on the Spinal CSF Leak Foundation website is provided for general informational and educational purposes only. The Spinal CSF Leak Foundation is a 501(c)(3) nonprofit health foundation focused on raising awareness, providing education, and funding research for spinal CSF leaks. ![]() This Support Community connects patients, loved ones and caregivers affected by spinal cerebrospinal fluid (CSF) leaks for informational and social support.
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