Hi Baby Diver
I was very interested in your message. I had a lumbar puncture and leak in 2011 following a car accident. I was left in a really bad way following the leak but wasn't given a patch. The headaches subsided but I am however continuing to get strong heart palpitations three years on. These seem to be directly linked to how hydrated I am - hence my interest in a possible ongoing leak.
If I don't drink about 4 litres of water a day I'll get the palpitations at night and if I drink any more than 3 glasses of wine they'll come on very strong. The palpitations give me insomnia. I've been back to the hospital and been checked out my multiple consultants relating to cardiology but they haven't found any cause.
If you have any updates to your enquiries I'd be very grateful if you could share.
Thanks!

I've had my fair share of experience with csf leaks. Started having the headaches in November (along with the vomiting, etc.). One neurologist tried telling me it was migraines from being a woman and eating chocolate. I was discouraged for some time and figured the migraines would just go away. Time passed and they got worse. Even my high pain threshold couldn't handle it by the end. I couldn't be upright without vomiting. One day I started losing my hearing and that ultimately got me moving to find out what truly was going on. Two ER visits later I was hospitalized to figure it out. Ultimately the chief cardiologist on my team figured it out based on my symptoms and my elevated heart rate when I was upright. They did an mri and found the telltale signs. They did two blind bloodpatches but the symptoms returned within days if not hours...I knew as soon as they put me upright that it didn't work. I had a myelogram to determine where the leaks are and they measured how low the pressure was and the doctor said it was the lowest he'd ever seen. They did a third blood patch where the leaks were located and it improved a bit but again the symptoms were slowly returning. I was then told to consult a neurosurgeon at an educational institution.

Long story short in total I had those three initial blood patches that didn't work and had complications including hearing loss problems and tinnitus, as well as vision loss problems. I then had two fibrin glue injections and three more blood patches, all of which failed. I then had invasive spinal surgery where they did two dural patches and put in a temporary drain while I was completely immobile and on flat bedrest for five days while hospitalized.

The symptoms have greatly improved. I think there's still a leak since the hearing and vision loss are still there and a "lighter" headache. But the neurosurgeon I'm working with in Chicago is experienced with csf leaks and says he won't be satisfied without having his patients back at 100%.

Has anyone else had a dual patch? And what talked / was it successful?

Following a DIY ear syringe & a 6 week long ear infection in Jan 2005, I was left with Tinnitus & fluid pressure on the left hand side of my face. It feels like fluid is constantly draining down my Eustachian tube & through my nose & throat. I sometimes also have a feeling of fluid moving around my head in the temples & at the back. Lying down helps & im at my best in the morning and as the day goes on the pressure and fluid pressure builds up. Steroid nasal sprays help & some days are better than others but at the moment its bad. I had scans (CT & MRI) some years ago in the UK which showed nothing, but then I understand they don’t always show anything & taking a nasal sample to identify the presence of CSF should have been done. None of the Doctors I saw mentioned CSF & didn’t have a clue what the problem was, only upon doing my own research did I see this & now believe this could be the problem. Does anyone have similar symptoms ?

I was recently diagnosed with a spinal fluid leak, had a blood patch it seemed to work in that my traumatizing headache is gone....however I have vision problems now, a full ness in my ears, lightheaded, and tingles in my head that feel like pin pricks. I fear the postural headaches are just around the corner. Can anyone comment on this, and does anyone now of an experienced doctor in Milwaukee or Vhicago that they would recomend?

wondering who your working with in Chicago as i am post chiari surgery and cranial instability surgery having bad csf leak and ear symptoms. Not having much luck finding a neurosurgeon experienced in the leak area? Could you PM me or respond. Thank you