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Cranial csf leak

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  • Cranial csf leak

    Hi all, I will tell u about my csf leak and my experience so far. Any help or advise would be greatly appreciated. I noticed I had clear fluid coming out my left nostril. I had just recovered from being sick with a cold, so didn't think much of it. I noticed it was just my left nostril, hmm again no worries. I noticed after a week it was getting worse. It is positional. I noticed after getting up it got worse. I started looking online. I read and read for days. I knew I had a csf leak. I walked into my ENT office first thing Monday morning... and told them I has csf leaking out my nose. The nurse told me I would have the worst headache ever if that was true. I had a slight headache. Actually a pressure. I asked for a beta2 transferrin test. I saw the PA in their office. She was great and believed me from the beginning! She was the only one. The ENT told her the beta 2 transferrin test would take 5weeks to get results. Untrue. Either way I would need a Ct of my sinuses. I was sent home with a prescription for nasal spray, I didn't fill it. So, did the Ct on Thursday, they read as normal... no sinusitis. Everything looked good. We used glucose test strip to test my drip..that was positive also. I was told csf has sugar other drainage shouldn't. I asked for the beta 2 transferrin test again.. I found a lab that said u would get next day results... it was ordered. It actually took about a week to get back. Guess what! Csf! I knew it! I was 99% sure when I walked in Monday. I had done my research. Waiting to get MRIS done tomorrow! Yeah! That took weeks to get insurance approval. I have noticed my vision is off and I feel confused at times. Not normal forget stuff...this is much worse. I am having my boyfriend drive me around. I'm afraid to drive. I have seen 2 ENT DRS so far and a neurosurgeon. I am not just letting anyone operate on me. I will also mention no surgery or trauma. Thanks so much!! Tracy

  • #2
    Hi all! Wow my leak got way worse si I ended up in the ER, Friday. I am now getting that headache I really didn't have before. Seeing new ENT for consult tomorrow. I need surgery soon. Bed rest now! I'm miserable! Thanks Tracy


    • #3
      This is very interesting, Traci. So sorry that it happened. Glad thst you advocated for yourself. You saved yourself!

      What to you/they think caused it and how is it fixed?

      There comes a time when silence is betrayal.- MLK