My name is Joy. I was just newly diagnosed less than a few months ago. In July 2017, I started having whooshing sound/pulsatile tinnitis. (Pulsatile tinnitis is different than regular tinnitis because it has to do with a blood flow issue.) I was sent to an ENT who sent me to an audiologist while somewhat dismissing my symptoms. To make a long story short, 3 months later I had an MRI in which they discovered a brain tumor on the right posterior fossa. I started going to Kaiser shortly after all this, and they referred me to a neurosurgeon/neuro-interventional radiologist. I had CT scans, MRIs, and a cerebral catheterization angiogram. At the time, they thought the tumor wasn’t causing my symptoms, but they couldn’t guarantee that. Either way, I had my brain tumor removed in October 2018 because it was growing too fast. A few months after my tumor was removed, the whooshing sound came back. I also started having regular tinnitis. I couldn’t bend over without having a pounding sensation in my head. I also couldn’t sleep in certain positions without waking up with a terrible headache. I was having terrible neck pain. I kept thinking that the symptoms were related to my recovery from brain tumor surgery. After many months of suffering and countless visits, my neurosurgeon decided to send me for more testing including a dynamic catheterization venogram and a CT scan of my neck. Behold! I’ve been diagnosed with Eagle Syndrome with internal jugular vein compression. Both my neurosurgeon and the neurosurgeon/interventional neuroradiologist all believe that the compression is causing intracranial hypertension and compressing some of my cranial nerves. I’ve had 2 “attacks” of suddenly having a massive burning sensation and trouble talking. I have a ton of other symptoms including numbness in parts of my face and elevated heart rate. I’ve had 2 “attacks” of possible Trigeminal “suicide headaches.” I’m on Gabapentin and Nortriptyline. I have been doing a little better with pain since being on the meds.
I am scheduled for surgery the second week of June barring any COVID-19 issue. My NS and an ENT surgeon will be performing the surgery together on both sides. My NS said that he does not want me to have the surgery through the mouth. He told me that there is a bigger risk of complications. They are going in through the side of my neck. He said the incision would be closer to the back of my ear. Either way, I don’t know a ton about my surgery. I will be talking with him more in the coming weeks hopefully.
I guess my questions would be the following:
- Should I have the surgery or try to live with my symptoms? I’m so scared that something will go wrong.
- I’m worried about recovery. What is recovery like? Brain surgery recovery was quite the trauma situation. My NS said the surgery will hopefully be performed on an outpatient basis.
I’m sure I could ask my NS these questions, but I feel like this is a better place to get answers from people who have been through this.
Thanks for reading my novel, and thanks for whatever insight you can provide. I’m really glad I found this website.