Hi everyone. I am new to this site and vascular eagles in general. I have gotten a lot of information over the months, especially from this website(thank you), and thought I better chime in and ask some questions as I try to navigate what is causing what…
My symptoms started long ago in 2003 when I was 17 and unfortunately we haven’t gotten to the bottom of it yet. I became totally bedridden in 2005 and only about 3 years ago did I start to get a little better. My main symptom is vertigo. Non stop vertigo not. Spinning so bad at times I feel like I’m going to lose consciousness (however I never have). I also have g force sensations, horrible head pain/fullness/pressure in my head, awful constant trigeminal nerve pain, tachycardia, stomach disturbances, hot flashes, achiness at times in my back and neck like I have the flu, a shaking feeling in my head, bouncing with my pulse at times in my eyes, nausea in my head, fullness in my neck, and other weird symptoms. It’s hard to put into words to what I am feeling and that is so frustrating.
I have had 5 spinal taps which were all high. But without going into a ton of boring detail, it has basically been ignored. Diamox has never helped but I will say I didn’t tolerate it very long. I also have this debilitating trigeminal nerve pain. (Also long story) And I wondered is eagle and this nerve pain ever related?
My surgery is scheduled for Oct 5 with Hepworth who I know is a good Dr but I will be honest, I feel like I read a lot of people who have the surgery, and aren’t really better. And some worse off… Am I seeing this wrong? Just trying to understand what I am reading. Also I had a surgery in 2018 that left me with worsening numbness and pain in my trigeminal nerve (face) and I am really scared this surgery might make it worse somehow.
So I guess for anyone who has the jugular variant, can I ask you what symptoms have resolved for you? And what symptoms did/do you have? Did you have head pressure?
Thank you for any input you may have. I really appreciate it and have appreciated hearing your stories
Welcome to our awesome forum. First off, I want to say you’re fortunate to be having your ES surgery with likely the most experienced vascular ES surgeon we know of. All the symptoms you described (except trigeminal neuralgia) are associated w/ IJV compression so I expect getting your IJV opened up so the blood can drain from your brain at an adequate rate will make a HUGE difference for you. It’s possible your situation improved a few years ago because when a person has severe IJV compression, the body develops collateral veins to help drain the blood from the brain. It’s possible you developed enough collaterals over time to help relieve your intracranial hypertension enough it allowed you to feel better.
Trigeminal nerve pain is one of the most common ES symptoms so I expect in the hands of this excellent surgeon, you may also get some good relief from your trigeminal nerve pain.
I’m sorry you’ve read that many people aren’t helped by ES surgery. There are people who don’t have good outcomes from surgery but often it’s because the surgeon doing the surgery wasn’t experienced w/ ES or didn’t remove enough of the styloid &/or calcified stylohyoid ligament. Also, in bilateral cases where only one styloid is removed, the remaining styloid can continue to cause symptoms & some that even cross over to the side no longer containing a styloid. This can give the illusion that the first surgery didn’t help so a second surgery won’t either when it’s the second surgery that really turns things around.
We have many members here who’ve had great outcomes from their ES surgeries. Recovery can be very slow, taking up to a year or more, but once vascular flow is restored & nerves heal, it’s life changing in a very amazing way. I expect you will have this experience over time once you have your surgery(ies).
A month ago I was terrified but having the surgery for me has been incredible… I speak for no one but myself when I say the following… I could tell the moment I woke up after surgery that things were different. I can best describe it as running with weights on all the time and then suddenly running without them. Like you said though, everyone’s experience is not the same. I hope you find some relief and I hope I have helped!!!
I guess the best judgement can be done around 6-12-18-24 months after the surgery, when all the nerves have healed, internal tissue fully recovered, revascularization either happened or not, no more inflammation remains…
Early months are different, everything is still “fluid” I guess. E.g. six months after my surgery I lost my voice. It became very hoarse, as if I had worst cold ever. Also started having swallowing issues. Was it surgery related - I don’t know. But early this year (a year after the surgery) an ENT suspected that one of my vocal cords felt a bit weak. Which could indicate some vagus nerve irritation/injury (and my uvula was a bit deviating too). Now the voice mostly recovered, though I still have episodes of hoarseness lasting a week or so, and need to be careful when downing big gulps of fluids.
On the other hand, I have been doing various stretches/exercises for my neck muscles. It could have been the cause of this malfunction too. Or maybe opposite, it helped to recover. Who knows…
Hi, I’m not really that active anymore because my symptoms are pretty much gone, but I had surgery with Dr Hepworth October 2021 and am happy to report I’m doing great: I still have the occasional flare up which has been managed well with massage and physical therapy. But I went from symptoms 10/10 pretty much all the time to the occasional 5/10 pain. The dizziness and tinnitus I experienced is completely gone it’s just some lingering pain. I had right styloid removed along with jugular decompression, he found scar tissue on my jugular and scraped it off. I would guess you don’t read much about the successes because many people move on from these forums once they are feeling better. I reported my recovery here though so you can read more about that if you search my username. I consider the surgery a major success for me and I am incredibly grateful for Dr H and his team. They honestly changed my life. One of the unforeseen results has been I am a much calmer, happier, less anxious person. My friends and family have noticed a huge difference in me since the surgery. Even Dr H could tell. Sending you all of the best and just know you’re being taken care of by one of the best doctors in the country! Can’t say enough good things about him. Hang in there!
Hi @Stac & welcome to the site!
I had bilateral jugular compression, although my symptoms weren’t as severe as yours I still had some quite scary IH ones, painful head pressure, off-balance feeling, vertigo… I had the worst side removed first & the vascular symptoms improved pretty quickly. After the 2nd op they went away almost completely, so for me it was definitely worth having surgery. I get TN as well, it started when the Eagles symptoms started, & is helped by Amitriptyline. It has improved since the surgery (I was getting numbness & tingling as well which has gone) but hasn’t gone away completely. I have some other neck issues though which could perhaps be causing this.
Dr Hepworth is very experienced with vascular ES so you’re in very good hands, & from what members have said on here he won’t just abandon you after surgery if you still have issues but seems to be happy to keep looking.
We do see people on here who haven’t been helped as much as they had hoped; lots of members have complicated medical conditions so surgery may not help everyone. Sometimes it’s a big step forwards on the journey to try to fix everything…and remember as @vdm says, it can take a year for healing, so sometimes people are struggling for the first few months and can be very discouraged- we’ve had members come back months later & are much more positive.
I can understand if you’ve had a previous surgery which didn’t work that you’re wary about this one, but leaving the styloids in won’t help either…
I hope this helps reassure you a bit!
I had bilateral compression of my IJVS and was practically disabled from my symptoms. I had bilateral styloidectomy this June by Dr Hackman and I got my life back. I don’t have any of my iih symptoms anymore and I’m back to living life.
That’s great to hear, thanks for sharing your experience @elijah
Isaiah, I have been reading your posts. I found this forum kinda late (my surgery is this Monday in PA). If you get a chance to read my post and if you can respond to it would be very much appreciated. I am a bit concerned (to say the least) with my situation and about my reading of first bite syndrome.
Thanks for your help.
I wouldn’t worry about first bite- it can be painful & annoying, but is nothing compared to ES symptoms, it’s a small price to pay!
Who is doing your surgery?
Elijah, thanks so much for your information. I am so glad that you did well after your surgery. That is good news that your intracranial hypertension went down or no longer exists.
Thanks again for your input!