ES Surgery- Story and Setbacks

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.

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Wow, the similarities between our stories is crazy.

I had bilateral compression of my internal jugular veins due to my styloids and I actually just had my second/revision surgery last Monday.

I had almost every single one your symptoms. I’m actually surprised Hepworth didn’t immediately order a neck CT because those are some pretty classic iih.

I also had double vision without paps!

After my first surgery, they only removed part of my left styloid and I actually felt better for about two weeks before everything came crashing down again. We think my vein collapsed because there was still compression at the very top.

I now got that remaining nub on the left removed and my entire right one to skull base. Since this past surgery a lot of my IIH symptoms are gone. I still have a lot of pressure from my surgery that can mimic iih pressure so only time will tell how I truly feel.

I’m trying not to dwell too much on what if my veins collapse again, but I guess that’s what balloon angioplasty/stents are for.

The fact that you saw relief means your body can do it. You have the potential and might need just another angioplasty and time to get those veins open again.

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I totally agree with @elijah, these are classic IIH symptoms. I have most of them as well. BTW, ultrasound measurements highly depend on the skill of the technologist and any misplacement of the probe can skew the result as the blood flow depends on the appropriate angle of the probe, the right area …etc

When you fell off the cliff, did your head or neck area get impacted? Was your compression of the Jugular veins due to Styloid alone or both Styloid & C1? Perhaps, you might need a work on C1 as well. May be the other side is not ok anymore after the falling off the cliff so I agree that you get another CTV.

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Very sorry for all that you are going through! Most of us here share the same experiences more or less. I think worse of all is the struggles and the challenges dealing with doctors and providers who usually make it worse for us, causing more anxiety and confusion ! They just love to diagnose us with “anxiety”. Just to make it clear, by saying “I then fell off a cliff” it was figuratively and not literally ? @KoolDude took it literally …? Praying that you get some relief; and if I can advise you that you not stress your body much with yoga and other stressful exercises at least until you figure out what’s going on with your body.

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So sorry that after all this you’ve gone backwards again, that’s really rough especially as you’re so young, but you sound an incredibly strong person! Glad you feel ready to share & join in, hope that the support helps!
It would be interesting to get another CT & venogram done- was your other styloid elongated at all? had you done anything at all to set the symptoms off again?
It may be that you need a stent to keep the vein open, I was told it could perhaps be needed after my styloidectomy but I’ve been very lucky & it wasn’t…
Glad you feel ready to share & join in, hope that the support helps! Sending you a hug :hugs:

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lol @Aboulog1, that is right I took it literally. Thanks for catching that.

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Wow! So crazy that our stories are so similar. It’s really encouraging to hear that you got better. I’m hoping that’s in the cards for me eventually. I totally agree that the fact that I saw relief means it’s possible- I feel so encouraged by that every day. I definitely need to push them to give me another venogram, but I think I have to wait until all the swelling is down? Which I think might be another 4 or so weeks, so hopefully that will show something.

Did your double vision resolve after you had the last surgery? If so was that an immediate thing or more of a slow adjustment? And did they just balloon you again after your vein collapsed?

So glad that you’re doing well, and I really appreciate you sharing your story with me!!

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Haha this made my whole day! Luckily I did not fall off an actual cliff… If I had that would definitely explain the re-occurrence of symptoms haha. I just meant that after surgery I was feeling better and then all of the sudden all my symptoms came back.

I’m thinking the same thing that you said in your first post, that maybe the other side is over compensating now. When they do my venogram again, I’m going to ask that they check both sides just to be sure. From what I understand no problem with C1 on my CT, but I’m not really familiar with that issue, so maybe?

Oh and thank you for the info on ultrasounds- that makes me feel much better to know they can be so inconsistent. I’m trusting my gut that it’s wrong again.

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Hi Jules,
Thank you! This community has already offered more support than most of docs in the last couple years. I feel like I can really get this solved. No styloid elongation as far as I know.

I’m not sure if I did anything to set off my symptoms. I was taking it easy, but because I was feeling well maybe my version of ‘easy’ wasn’t easy enough. I’m crossing my fingers that it’s just that my vein collapsed again. Venograms and ballooning are pretty easy. The vascular surgeon I spoke with says he likes to try not to place stents there if at all possible, so we’d do a balloon again and then if it kept collapsing we’d discuss.

I’m so glad to hear that you didn’t need a stent. Thank you for your kindness and warmth. Pretty cool to have a community that’s so supportive! Sending hugs right back

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Thank you! I will take your advice and try taking it easier for a bit. Sometimes I feel like I just need to push past the pain, but that’s not what’s best for my body… I need to remember I can be tough and cautious at the same time.

Luckily it was a metaphorical cliff, although would be a much more interesting story if it had been real one haha.

It seems almost all of us here have dealt with doctors doubting us or making it worse. I’m so glad there’s this little community to help! Thank you for your prayers, you all have already made me feel much better.

Cheers!
Emma

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This is what impaired brain by vascular ES looks like. My brain is thinking about the first accident and translated (wrongly in this case) the cliff falling as another accident which could have relevancy to your continuation of symptoms. Thanks to @Aboulog1 who carefully pays attention to words for catching that.

When you get the second venogram, you could share some of the images here so we can have a look. I know Dr. Hepworth is usually very thorough but even the best of doctors overlook subtle things since they tend to be very busy.

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Emma,

You have an amazing attitude in spite of the recurrent symptoms after surgery. I believe you will get well, too. A positive mindset even in a difficult time always helps ease the burden, & I believe can help promote a better outcome. I’m glad you’re here. We’ll enjoy “chatting” with you as you update us on your situation. :gift_heart:

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Well it’s still very early for me for this surgery so I wouldn’t say I’m better yet.

Last time my symptoms improved about 5 days after surgery, including my vision but then returned 2 weeks later.

We didn’t do angioplasty because we knew we needed to anyways do another surgery so we are saving it for the future, if needed. Hopefully I won’t.

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Ahh that makes sense! Well I also hope you don’t need angioplasty, and that your recovery goes well. Would love to hear your updates as you continue your healing journey =)

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I thought she meant off a cliff literally as well! Great minds think a like Kool dude :rofl:

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Emma,
Wow you are so young to be dealing with this. I do know there is a few others your age lurking around here so you are not alone. Luckily you are in good hands and you will get past this and get back to a hopefully full normal life. You have a very interesting story. Thanks for sharing.
I had whiplash at your age (Im now 66) and been struggling with neck issues and many of the same symptoms you have for decades. I also have EDS (Ehlers Danlos-hypermobility). I had ES surgeries in 2020. Although everything seemed to be fine after my surgeries, (I did have a concussion in between surgeries), a tooth extraction “put me off a cliff”. Im now struggling with vertigo, ear issues, possible TOS and likely some sort of compression(s). I go in for a venogram myself next week.

I sure hope so. I’m gonna keep updating my case on my main thread about my surgery.

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Thank you for the support. Man this group is just awesome! That’s crazy you’ve been suffering so long with this. I consider myself quite lucky that I’ve only had to deal with if for 3 years. I always think that even if it takes up a couple years of my life, there will be normal days ahead and eventually I’ll get to smooth sailing.

I’m sorry that you had a re-lapse, I totally get how that feels. Hopefully your venogram reveals something and you move forward with some treatment for all those issues… I’m not sure if you feel the same, but I always feel odd hoping a test comes back and shows something wrong. Because at least then I know what I’m dealing with and it’s very calming in a weird way. I’m not sure if you’re posting to the main thread, but I’d definitely love to hear how your venogram goes! Sending lots of good vibes for your venogram, and healing energy overall.

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LOL Emma. Funny I feel the same…I want them to find something…so then they can FIX it! I too also get calmer once I know what is wrong. I will post how it goes.I haven’t been on here much because I have been so miserable and sitting at the computer aggravates my neck.

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@KoolDude Sorry I meant to write you back with a question and then this month just totally got away from me. I still work full time- so I’m pretty exhausted all weekday nights. Is IIH common with Eagles? I haven’t heard very much about it from Hepworth. All of my symptoms came on after my initial CSF leak repair, and have continued to get worse (some I assume caused by that impingement of my left side jugular) but that seems to track with IIH since that repair changed my internal pressure. When I was looking it up the only “cure” I could find was losing a significant amount of weight. Just very curious about anything you could tell me about IIH and your experience!

Oh I also have pain/pressure right at the base of my spine, do you have any of that?

Sorry for all the questions, and if you don’t have time to answer no worries at all!