Hi all,
Had a few questions I’m wondering if this group might have some experience with. Long story short I have ES and compression was seen in my CT on both sides of my neck. They did a venogram and only my left side had jugular compression (did the venogram before and during surgery). I was feeling better after surgery, then one day all my symptoms came rushing back. I am requesting another venogram to see if my vein collapsed.
However, I’ve noticed the pain in my neck, shoulder and head has switched from being mainly on my left side to now my right side.Could this switch in pain location be caused by the compression they saw on the right side of my CT even though the veins are open and flowing just fine?
Does anyone’s pain get worse when they lay down? If I lay down during the middle of the day I get a headache and what feels like pulsing inside my head. At night I take Ambien, which seems to take all those symptoms away though which is nice.
I’m also wondering if anyone has had issues with severe dry eye? I had a skull based CSF leak repair back in 2018 and they removed my ethmoid sinuses to get to it, went up on my left side. I’ve had double vision and severe dry eye, eye pain and photosensitivity ever since. With having Eagles and that, I’m not sure what is causing what. Sorry if this is a bit rambly, today has been particularly tough and my mind is a bit scattered.
We love long rambly posts as that’s how we get to know each other. Please feel free to ramble any time!
The answer to your question is YES! It’s very common for people w/ bilateral ES to notice symptoms flaring on the non-operated side, & sometimes even on the operated side, after one styloid has been removed. There has been speculation as to why this happens. The main thought is that when the first styloid is removed, the soft tissues in the area shift around a bit which can put more stress on the remaining styloid causing symptoms to flare on that side. Some symptoms can “cross over” to the side that’s already been removed, too. Also, in cases of bilateral ES it can be difficult to tell which styloid is causing which symptoms, so when one is removed the symptoms being caused by the remaining styloid become more pronounced. Those symptoms are initially more “quiet” after the first ES surgery because of the anti-inflammatory & pain meds given post op for the first styloid removed. Once those meds are out of the body, symptoms from the remaining styloid become more obvious.
The symptoms you’ve described having now can be caused by irritated cranial nerves i.e. the accessory (shoulder/neck pain), trigeminal, facial & vagus nerves (head pain - can also be caused by vascular compression as you know). These nerves are all known to be affected by ES & often recover nicely once the styloid that’s irritating them is removed.
We have members who’ve had pain get worse when laying down - especially headaches flaring up. Try keeping your head elevated when resting or sleeping. A wedge pillow can help w/ this. Some doctors recommend head elevation post op to help relieve swelling in the throat & neck. Many of us found a wedge pillow to be tremendously helpful post op & some even before surgery. Some people have also found icing their necks (15 min on & 45 min off) is helpful, even the non-surgical side. If ice makes it worse, try heat.
Some of our members have dry eyes & mouths as part of their ES symptoms. There was recently a discussion about that. The facial nerve stimulates the lacrimal glands for the eyes, & trigeminal nerve is responsible for salivation. Both of these can be irritated by elongated styloids so it is possible that your dry eye trouble is related both to your ethmoid sinus removal & nerve irritation. We have some members who also get the eye symptoms you’ve described as part of IJV compression from ES so getting a follow-up scan to make sure your IJV is still open is a good idea.
The following thread contains some discussion about dry eyes & mouth & possible helps for those:
Uhhg, Emma! I’m so sorry you’re going through this. As if you haven’t been through enough already.
This is a hard process. We don’t want any more surgeries than necessary so knowing if/when to address the intact side is a roll of the dice, it seems.
I wish I had more to offer you along the lines of advice to help you make sense of this and/or to make a clear choice. But I wanted to chime in and just acknowledge what you’re feeling.
Perhaps your surgeon can offer more advice—he’s very experienced and should be able to help guide you.
I agree with what Isaiah has said, I’ll just add in that the headache when laying flat is often because the pressure increases inside the head then- lots of us who’ve had jugular compression notice this. As Isaiah says, sleeping propped up a bit will help.
It’s easy to think that the surgery hasn’t worked, but often it is as Isaiah has said because the 2nd side is still causing symptoms.
Hope that you can get to the bottom of the symptoms…sending you a hug
I agree with both @Isaiah_40_31 & @Jules regarding elevating your head. Lying down not only brings on headaches for me but amplifies all my IJVS induced IIH symptoms such as tinnitus, visual symptoms. When lying down, Jugular Veins become prominent in draining the brain and since our jugular veins are impaired due to the narrowing brought on by years of compression of styloid/C1, they can’t efficiently do that hence the onset of IIH symptoms on a Steriod. So one way to mitigate this is, to use wedge pillow to elevate your head as both @Isaiah_40_31 & @Jules pointed out. When we elevate our bodies to 30 degrees or more, collaterals veins along your cervical spine become prominent in draining the brain thus improving the drainage a bit since collaterals use gravity to drain the brain they work with elevation. I think this might be the possible mechanism behind why lying flat brings on more IIH symptoms than in upright position particularly in IJVS patients.
Thank you Isaiah! This was so so helpful. I’m definitely going to buy a wedge pillow and see if that gives me any relief. I’ll be asking for a repeat venogram and let you all know the finding when I get it. This community is a god send. Can’t tell you how much I appreciate your thoughtful answer!
Thanks, Jules! Yes I’m very interested to see if it’s my jugular vein still being compressed, or if it’s my other side. Hopefully the repeat venogram will give me that clarity. Definitely trying sleeping propped up. You all are the best!!
Hi @Jules , back again! Wondering if you or anyone else in this group you know of has experienced muscle spasming months after the styloidectomy. In the last 2 weeks it feels like my veins (although I know it’s the muscles) right by the incision site are just spasming all the time and causing me some major headaches. It gets worse when I talk. It’s from the lower part of my chin to where my neck meets my collar bone area. I have some other stuff going on that might be contributing, but just curious if anyone has had that type of issue before.
Good to hear from you but I wish it was because all is well!
I’m sorry you’re having this problem! I have something slightly similar but only when I sing. If I sing in my normal vocal range, my throat tightens up & hurts, & my neck muscles spasm (mostly on the left side). If I sing an octave lower this doesn’t happen. My problem started after my ES diagnosis & went away briefly after surgery but has come back with a vengeance now. It has been suggested to me that I seek out help from a craniosacral therapist which I haven’t done yet. Someone like that might be helpful for you.
Interesting to hear! I would think that would be very annoying to happen while you’re trying to sing.
I have some imaging and a venogram to do, but once that is done I’m definitely looking into a craniosacral therapist. It’s an odd feeling, but I wouldn’t mind it that much if it didn’t cause headaches.
That sounds rotten, you might find the posts about magnesium supplements/ gel interesting as well as the therapy @Isaiah_40_31 suggested…here’s a link: VES- magnesium footbaths - General - Living with Eagle
Others have had issues with scar tissue post surgery, I can’t think of anyone mentioning muscle spasms exactly, but could be wrong…cold laser therapy has helped some people with that. Otherwise it might be worth seeing a physiotherapist?
Thinking of you
I’m sorry you are still experiencing some symptoms after surgery. I had that problems with my scar after previous surgeries that could be managed with Neural Therapy and Osteopathy by a doctor for integrative medicine and pain management. Neural Therapy sounds a bit like witchcraft but I can confirm it really works and releaves symptoms. I think it can be a big help for ES Patients.
Would be great to know if anyone else has also experience with Neural Therapy…
Wishing you all the best for a full and quick recovery.
As always you all are just the best! Thank you @Jules@Isaiah_40_31 and @TheDude for the well wishes. Sometimes just knowing you have people who are rooting for you is such a big help =)
These are all some great ideas and give me some good paths to go down. The Dude- honestly I’m game for anything at this point, witchcraft or not haha. Will update you all once I get my venogram, hoping that will shed some light on my symptoms, or at least rule some stuff out.
Thanks again for all your continued support, this forum really is a god send. Wishing all of you the best!!
Hi everyone! Finally have an update to share. Sorry I’ve been a bit MIA, between the pain and a full time job, I’m having a hard time juggling everything. My CT of the neck/cervical spine looked good on my left side (the one I had surgery one), but there was still slight compression on my right side (even though it isn’t impacting blood flow). Hepworth said his surgeries get so far booked out he wants to schedule me for a right side styloidectomy in the spring. My pain has migrated to the right side, so I feel very good about that.
He also wants me to try Brilinta for 3 months instead of Plavix. @Jules, @Isaiah_40_31 or @KoolDude any experience with that one? I’m always nervous to be on new meds… I’m pretty much in pain all the time now, and thinking of adding something else that might cause worse side effects freaks me out.
I originally went in wanting to request a repeat venogram, but the CTV found that I have a “tremendous amount of collateral blood flow around the base of the skull.” From what I understand these are all the little veins my body made while my left side was impinged. I was told this originally by the vascular surgeons who did my first venogram, but that was before I had the surgery which is important. Anyone able to better explain this issue?
Here’s where I could use some major advice. Hepworth recommended an intercranial +neck venogram (with possible stenting). I wanted to use the same Vascular group that I used for the first venogram and he said I couldn’t because they would be “too scared” to go up into my brain like that… However they are the ones who found all those little off shoots, so I’m confused. Which makes me feel uneasy. They are the premiere vascular group in the state, so if they are unwilling to do it, I do wonder why. I also still feel like there’s a chance my vein on the left side collapsed and needs to be re-ballooned or maybe my right has been impinged now.
My question is - am I crazy for asking for just the simple venogram first, and then if that comes back normal going down Dr. Hepworth’s route? The doc he recommended here works at a hospital that doesn’t have a great track records, and my nurse friends have always advised me to stay away from. The next options would be someone out of Hawaii or out of NC (Dr. Fargen). He said lots of people won’t do these types of procedures… And I know that might just be the space, but something about it is making me feel off.
I think I’m in pain more because I got off the plavix, but then I’ve also developed visual snow and am just having a really hard time living in pain every single day.
Would really appreciate any type of advise or just general thoughts on the matter. Thank you all in advance!
First of all, I am really sorry that you are not feeling well and can only wish that you get better. I am really not familiar with blood thinner medications as I have never used them so I can’t give any educated/experience based opinion on it. I think @blossom or may be @TheDude can better give advice in this realm as they may have used blood thinning medications.
I am not vascular doctor but I find this finding bit strange. Collaterals (network of veins at the base of the skull down to the vertebrae) are always there even if you do not have compression on your Jugular Veins. They drain the brain mostly when you are upright but can also come to the rescue of the Jugular veins when they are impaired (narrowed/compressed by a bone, clot, muscle, tumor…etc). In my limited knowledge, they are not created by compression of the Jugular Veins. It is true that alternative vascular system (vascularization) is created/formed when there is clot blocking a vein where there are no alternative pathways present but in the case if IJVS, the nature has already presented us with the collateral. So the "tremendous amount of collateral blood flow around the base of the skull.” is only indicative that your Jugular Veins are impaired and the blood is rerouted to collaterals which could be overwhelmed and cause a whole host of symptoms.
I really do not know the background of the Vascular Group you are referring to here but I would stay away from stenting the jugular veins so long as there are routes like removing your styloid on the right side which could open up the right jugular vein (I am assuming it is compressed by the styloid here since I did not see the images). Again, I am not a doctor, but stenting the jugular veins would require all the bone compressions to be removed (C1 & Styloid) so that the stent does not get collapsed by the bones and cause irreversible damage to the vein. There has to be enough space for the Stent to move around in this tight area. It has to be only the last resort when all other interventions are exhausted. Again, this is my opinion and I am not doctor.
The visual snow thing is linked to increased intercranial pressure. So one hypothesis is that your optic nerve sheath could be dilated (a sign of IIH) by CSF fluid causing compression on your optic nerve and this can manifest in myriad symptoms including visual snow.
I think you need to remove the Styloid from the right side if it is deemed to be compressing your right jugular vein. Also, you can try wearing a soft neck collar to keep your head straight (helps me lessen the compression of the styloid on the IJV when flexing my head or reading your smart phone…etc).
If Hepworth is busy, try another doctor to get it removed. Hackman is another one if he can do the surgery earlier. Anyways, my 2 cents. Getting venogram is ok too.
I don’t know much about brilinta but it looks to be an anti platelet medication just like plavix. I didn’t have any side effects from plavix other than more bleeding/bruising with injuries. If plavix helped you I’d guess that this one will too.
So sorry that you’re still in pain & have other symptoms. I’ve not heard of the new medication, personally I’d research it & look up side effects & then make a decision about whether to try it.
It’s a difficult decision- Dr Hepworth is one of the best & has an extremely good record from what we hear on the site, so should be trusted, but on the other hand, he does seem to be extremely thorough with testing, which it sounds like you’re wary of going through. It’s your body, so you must do what you feel is right, & if you feel that you want a simple venogram is best for you, then go with that…although others have waited for a long time to see Dr Hepworth as he is so respected, difficult! I agree with @KoolDude that getting the styloid out before any stenting is done is a must…
I’m sorry that I can’t give you more specific advice, but will pray that you make the right decisions for yourself
