I had Pulsatile Tinnitus that started in early September 1987. It took me thirteen years to finally have a diagnosis as to the cause and relief. There was no joy or peace in my life because of the noise. I had almost lost all hope.

The day I finally found out I had a Chiari Malformation and then the pseudotumor [cerebri] was the best day ever for me.

Here is my story....I always had headaches daily since childhood. I just suffered with them. When I was twenty three I was married and went to Hawaii...a long flight to and from New York. When I returned home, the next day, my right ear was pounding in pace with my heartbeat. So, that started the saga of doctors' visits. I saw everyone, had every test and no help. Finally, four years into doctors' visits, they told me I had pulsatile tinnitus but there was no cure and just live with it.

I saw the best doctors in New York. I had MRIs and MRAs and standard angiography to look at my blocked jugular vein. One surgeon thought the block was from a glomus tumor but when the angio ruled out a tumor, there was nothing he could do to open the blockage. So, I just continued to see doctor after doctor and I carried those heavy films everywhere.

I would arrive to each office exhausted with my ear pounding like crazy because all the walking around pushed more spinal fluid through my head which could not move properly due to the blockage. Plus, my head would throb with pain. No one could help me.

Finally in 1999, I became pregnant and during the pregnancy, my noises intensified. My head was killing me and my pounding became a roaring. They said the blocked jugular vein was causing the extra blood volume to slow down and that after delivery, the noise would just go back to pounding. At that point, I still was not told I had a Chiari Malformation. By my seventh month, the pounding and roaring became the sound of water running constantly and a constant swooshing. I was miserable and still seeing neuros, radiologists, neurotologists. You name the doctor, I saw them. No one had a clue.

Finally, in Feb 2000, I had the baby but needed a spinal. After they gave me the spinal, my noises all stopped for three full days. I had no ringing, no roaring no water running....just peace.

The day I left the hospital, my ear started to throb in pace with my heartbeat and roar and the water noises were back even stronger. I was horrified and I had a newborn. I started again to see doctors to no avail. Everyone said the jugular vein was blocked and nothing could be done ever.

Ironically, years earlier, I had purchased a book on Tinnitus and there was a chapter written by Dr. Sismanis about Pulsatile Tinnitus. It sounded just like my symptoms. I started showing the chapter to doctors thinking it would help get a diagnosis but they all dismissed me and the chapter. So I put the book away after a while.

When in January 2000, I started hearing the water run, I wrote to Dr. Sismanis and he looked at all my MRIs. He called me back in March, after I had my son and they clearly saw the Chiari Malformation on all of my films and [determined] that it was the cause of my troubles. I was stunned because I had the films for years and no one ever mentioned the Chiari until Dr. Sismanis. So that day was the turning point for me. I am in his debt forever. He is a wonderful doctor. I was sad to hear he retired but hope he is happy.

Finally, I found the greatest neurosurgeons ever to grace this world and they repaired the Chiari Malformation and placed a VP shunt to help drain [the blockage] of spinal fluid from my head and to bypass the blocked jugular vein.

So, please read about Arnold Chiari Malformations and Pseudotumor Cerebri. I am not saying it is the cause of your noises but it caused mine and it took a lifetime for me to find the reason. 

Dana