Hi all,
Long time lurker who finally signed up for account here! I’ve been dealing with ES for the last 3 years and wanted to share my story. I tried to keep it brief, but want to make sure I’m also informative in case anyone else has similar situations… So sorry it’s a bit long. In short I have been in pain almost every day for the last 3 years. I feel good in the mornings but by the end of the day I am in really bad pain. I’m in my 20’s and I just feel so jealous of everyone my age who gets to be “normal”. But I know I will get back there someday, it’s just going to take some work! Even though this had been hard, it’s made me a much stronger person, and I know I’ll find a solution. I don’t ever talk to anyone about this outside of my partner, immediate family and doctors, so it’s nice to have a place to share.
My symptoms
- Tinitus
- Dizziness
- Double vision
- Shaky vision (almost like when you look at footage someone has shot on an iPhone while walking)
- Severe dry eye
- Ear fullness and constant need to pop
- Ear pain
- Pain in neck and head, more prevalent on my left side where my vein was impinged. Gets worse throughout the day.
- Pressure headaches
- Headaches that are around my temples at the end of every day. Feels like someone is pressing in on my temples.
- Facial pain and pressure
- Migraines
- Back pain
- Pain gets worse throughout the day
- Pressure and throbbing if I try to lay down during the day. Without Ambien I would have it as night as well.
- Higher resting heart rate and high heart rate while exercising. Beta blockers have helped significantly though, so not as much of a problem for now.
In 2018 I was in a car accident and at the time thought I only had severe whiplash and a concussion. I spent the next year feeling ok, but did notice I was getting more sore despite being in PT. I was also getting more tired and had some migraines on and off that become more frequent.
Then one day while I was doing yoga, and I lifted my head up after downward facing dog, and what looked like water came rushing out of my nose. I then had a migraine that lasted 3 days! I went to the ER and they confirmed I had a CSF leak at the base of my skull. I was referred to Dr. Hepworth (somewhat of a legend in this group it seems). He repaired the leak a few days later, and I thought that would be that… Turns out that was only the beginning of my journey. A few days after surgery I was in agony. Terrible headaches, back and neck pain and worst of all was double vision. Hepworth said all this was normal after surgery as your body tries to re-balance its self, so I was playing the waiting game. I was put on Acetazolamide for the inter-cranial pressure and a slew of other meds to help. I went to see a neuro-ophthalmologist (which I highly recommend if you have visual disturbances caused by ES) for my double vision.
She checked my eye pressure, my ocular nerves, everything- and couldn’t find any cause for my double vision. I also had developed severely dry eyes which I’d never struggled with before. She told me it could take up to I think 16 months to resolve if for some reason the surgeon had hit the nerve (very unlikely but it does happen). After 6 months I still was feeling terrible, but that’s when COVID hit, so I was pretty much stuck for the next 6 months. Right around a year is when I started to feel dizzy all the time. Felt like I was spacey anytime I was doing anything physical.
Once Covid restrictions were down a bit I finally started to seek help. I had a CT of my neck done and Dr. Hepworth said I could have another CSF leak, so I was scheduled for a lumbar puncture. They injected me with contrast to see if there were any more leaks and saw nothing. I then ended up like many people here going to a slew of other doctors to check for more problems. No one could figure out what was wrong. I even had a neurologist tell me the pain was all in my head and gave me meds for anxiety. I went to an audiologist who specialized in dizziness and she put me Amatryptalline, an antidepressant that they found out actually works better as an anti-dizziness med, as she thought maybe I had vestibular migraines. The amatryptalline did help some. My primary doc told me to take over the counter anti-dizziness meds like Meclazine, and it also helped some.
Cut to October 2021, when I went back to Hepworth and he ordered a CT scan of head and neck again. The CT scan showed I had compression in both sides of my neck. I went for the ultra-sound and it came back normal. I was so disheartened. But Hepworth, smartly, did not trust the ultra-sound and scheduled me for a Venogram. They found that my ride side was totally fine, but my left side Jugular was severely impinged. So much so that they couldn’t even fit the camera up past that point. This was January 2022. They diagnosed me with ES and believe it’s from the car accident I was in, in 2018. Hepworth said he thinks that I had a small skull fracture, and as the styloid calcified and the pressure was put on my jugular, it caused my internal pressure to go up and for that membrane to pop, creating the CSF leak. Which would explain why it happened almost a year later. I’m somewhat of a “special” case in that my ocular nerve didn’t show any signs of this, apparently that happens to about 10% of people.
I had a left styloidectomy and jugular decompression on May 4th. They had to balloon my vein to get it to re-open and so I’m on Plavix until I’m 3 months out from surgery.
I was feeling great for about 3 weeks. I had multiple days of no pain for the first time in years, my vision started changing, and the shakiness went away! Unfortunately I then fell off a cliff. One day all my symptoms came rushing back. So now I’m almost 2 months out from surgery with no real improvements at all. I went and got another ultra sound, which said my vein was still open, but I’m very skeptical since they also said that the first time. Wondering if anyone else has had experience with this? I know my swelling still will probably take about 6 weeks to go down, but I’m to the point where I think if I don’t feel better by then I am going to request another venogram.
Sorry for the long story! Would love to hear anyone else’s opinions or stories. I’m looking forward to being part of this community, and open to any questions anyone might have.
