Frustrated- Questions on Changing Pain and Symptoms

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.

Any thoughts appreciated!

1 Like

Hi @Emma123,

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:

3 Likes

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.

Be well, my friend!

5 Likes

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 :hugs:

5 Likes

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.

5 Likes

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!

2 Likes

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!!

1 Like

That makes SO much sense! I’m hoping my repeat venogram will give some clarity on exactly what might still be the issue. Thank you!!

1 Like

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.

Hi @Emma123,

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.

1 Like

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.

2 Likes

Feel better❣️

1 Like

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 :hugs:

1 Like

Hi @Emma123,

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. :four_leaf_clover:

2 Likes

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!!

3 Likes

I will be praying for you, @Emma123. I hope the venogram shows something that helps gives an answer.

1 Like