While searching around on this issue i saw an ENT article on the problem with imaging the vagus nerve in the cervical area. They talked about a successful novel approach. Transcutaneous sonography. GOOD LUCK with any of us getting that but i am going to pursue more info on it.
They used grey scale techique with setting on thyroid gland. The problem is not that it cant be done but getting everyone on board to do it and understand it. This article was from Taiwan so if anyone is there you might be more successful.
I couldnt even get Indiana University radiologist on board with a carotid doppler ultrasound done with me in various positions that did show the problem as I now know it. I saw it with my own eyes as we were doing it.The supervisor had said they dont have a protocol so send me to Cleveland Clinic.
I also saw on reddit people talking about the fiesta mri and some posters said they got it but just didnt know it because it wasnt said in report that it was used.
From what I’ve read it sounds as if it’s generally used for skull base & evaluating the cranial nerves where they exit the skull, which is the area you want to be looking at…worth checking that one. You shouldn’t need contrast for it hopefully, I don’t know if it’s usually done with that or not- although sometimes blood vessels can compress the nerves so that would be something to ask about if you found somewhere to get the scan…
I have been able to control the gastric symptoms using very soft but nutritious foods. A member of my family volunteered to help me so at least symptoms have been tolerable on that front.
But I’m developing more symptoms. I’m getting severe facial pain. A constant dull but intense ache with occasional shooting pains. And severe flu like body aches as well.
The evidence builds that I may have a combination of vagus nerve, trigeminal nerve, and accessory nerve microvascular compression. I am planning to get a CISS MRI as soon as possible.
I am currently not taking any medication but thinking of amitryptline. I don’t think that should have gastric side effects. I can’t take NSAIDs anymore because of the gastric symptoms.
Please let us know what the CISS mri shows. You might ask for the 3d Ciss which is equivalent to fiesta C.
In trying to figure oùt this software i did see quite a bit of different scans that can be done. I think a radiology site pointed out all the software that can be used. My eyes and brain glazed over trying to figure it out
@Bowser it seems that my husband shares a lot of your symptoms. The gastroparesis and the nerve pain. JC’s is oral-facial, the nerve pain shoots up from his jawline up to his eyes. He has been put on 50mg of pregablin (lyrica) 3x per day (total 150mg) and 400mg of carbamazepine (tegretol). It is the only combination that has treated his nerve pain, and it doesn’t seem to have any affect on his digestion. Of course, everyone is different.
If you haven’t heard of the low FODMAP diet, it might be worth checking it out for the time being. It is an elimination diet for people who have food triggers. In the worst moments, JC did low FODMAP + soft food + low/no fiber. One of the foods that I would make is a variation of Turkish soup called yayla, it is a rice, yogurt and mint soup which was easy to digest and the mint stimulated stomach motility (watch out for dairy/mint if you have acid reflux as they can be secret culprits).
I have been reading about people having systemic nervous system reactions to surgery. When the body hasn’t been able to self-regulate for so long, it openly fights against change (even if it’s positive change). The body creates pain, inflammation and other nasty stuff because it thinks it is helping you get back to your pre-surgery baseline… even if your baseline is way off normal. It can take weeks and months for this to subside, and sometimes with the help of a good physiotherapist or a counsellor who is trained in pain management.
I’m so sorry for what you’re going through, but I have to ask, what are your thoughts now towards your surgeon? As you might know from previous posts, we are considering using the same one. Do you still consider him to be a capable surgeon with unlucky outcomes, or do you hold him somewhat accountable? If you have a moment to write (here or privately), I would be ever grateful to hear your opinions.
I still hold the surgeon in very high regard. I think both my Eagle syndrome surgeries were successful. I had TOS surgery with him in 2023 which was very successful as well. My symptoms right now seem to be a separate issue. I don’t think I can hold him accountable for that.
I’m glad you’re able to eat something @Bowser , it all sounds grim…I take low dose Amitriptyline for nerve pain which help, but then mine’s not as bad as yours from the sound of it- it doesn’t affect my stomach at all. I don’t know about the other common nerve pain meds, but I don’t think that’s a common side effect with any of them. Thinking of you & let us know how you get on with having the MRI, there have been lots of questions about that on here
whole 30 diet is another one that can help. you go back to the basics and then add in foods gradually to see what changes.
I did feel much better on that diet but mentally couldn’t handle that much of a change for a long period. I like my diet coke even though it isn’t good for you. Bread can greatly affect people without them realizing it.
I’ve done Paleo, Keto, South Beach, & Whole 30. Of those I like Paleo the best because it’s not as restrictive. For me, eliminating grains, legumes, & dairy from my diet made a world of difference in how I feel. I am not eating strictly Paleo at the moment but will get back to it soon.
Well, since they have dug up two skulls from the Holocene era with elongated styloids we cant blame it all on processed foods . Ha ! One article put forth several theories. One related to chromosome 6p. I will have to look up the article they referenced and check my Dna report.
The radiologist report says the left trigeminal nerve and right vestibocochlear nerves are compressed by small vascular loops! The left trigeminal nerve thing I suspected heavily, but I think there could also be accessory nerve and vagus nerve involvement. I don’t have any symptoms on the right though. The tinnitus is only in the left ear.
Well, at least you have some answers, but not all you were hoping for…I did have a quick look at the scans but don’t really know what I’m looking at! Do you know if they were able to see all the cranial nerves in that area, or do they only look at certain ones? I wonder if the vascular loops are collateral veins which form if the jugular veins compressed, or if they were always there?
Ben’s friends to have a Facial Pain group, they discuss nerve pain meds & info for microvascular decompression surgery, it might be helpful to have a look there to consider your options: Finding support for facial pain? Connect with people like you. - Living with Facial Pain
An amazingly important step forward - HUGE result! Well done to all in this thread who suggested this idea and great work from @Bowser for taking on this advice and getting it sorted so efficiently!
It must be somewhat of a relief to have some answers, and a new path to follow for resolution. I was looking at this condition online and it seems this isn’t a rare surgery, so if you have to go that route there may be local options for you. Please keep us posted! Take care and wishing you all the best with these next steps.
I am disappointed that this scan did not show vagus nerve etc. I thought it was going to be something that would give us a lot of info
One of your eyeballs looks much different than the other but i have no idea what i am looking at
For those that get the sudden ratcheting up of ringing when lying down i just had it and got it to stop by moving my head. Lying on right side, jugular compression on right side but left ear facing ceiling was ringing loudly. I didnt pay attention to which movement stopped it.
I think there may ve vagus involvement similar to @1speechpick, just that it wasn’t noted on the report because it isn’t common. I am waiting to see what my surgeon has to say.
I think you should ask for your scans to be re-read specifically to be evaluated for vagus compression or irritation. We have another member who has bothersome tinnitus,& his FIESTA MRI showed a tiny artery up against his vestibulocochlear nerve. I don’t know if he brought this up to his ES surgeon, but I think it could definitely be playing a role in his tinnitus.
Did you ever hear back from the surgeon? Hopefully he had constructive feedback and some options for moving forward (even if it’s pain management for the time being). Praying this doesn’t mean more surgery and things will settle with time and alternate therapies.
Wishing you all the best under these circumstances.
