ES can definitely cause Trigeminal Neuralgia, yes, quite a few of us have had this, it’s one of the most common nerves to be affected. There are nerve pain medications which can help if you’ve not tried any, like Gabapentin, Amitriptyline, Carbamazepine…
The styloids can also compress the IJV too- did your scan show this?
Here are dr heims report.
I am wondering if my styloid is also making trouble for my nerves that are in that area?
That could answer for a lot of my problems
Vagus nerve - constpation
Trigeminal nerve - pain in face, teeth , jaw
Glossopharyngeal nerve - sinuses
Accessory nerve - pain in shoulders and arms
And since the Ijv is compressed these nerves will also be affected?
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That’s an incredibly thorough report, if only all radiology reports were as good! He certainly knows what he’s talking about and explains really well the structures which are being affected, how, & what symptoms they would cause, so personally, I’d take notice of this report and definitely consider having the styloid removed. The CT shows the IJV compression between the styloid & C1 process, I don’t understand how the team at Rikshopitalet think this is not related to Eagles?
The nerves you mention can all be caused by styloid compression/ irritation, yes.
@emma Did you have the bilateral ablation of C2-C5 at the same time? One doctor (pain management/ anesthesiologist) said doing C2 can cause permanent dizziness (?) and a Physiatrist said he’d do one side and then the other… so am a bit confused.
Have an appt with a Physiatrist (that I saw 20 years ago!) to check back into this and get on her schedule. Will wait until after surgery unless doc (which doc tbd) gives the ok.
Hope you are doing well )).
Leah
Somehow I missed your post earlier but have just read it along w/ Dr. Heim’s report. I completely agree w/ @Jules. That’s an amazing evaluation of your CT scan! I’ve never seen one that is so thorough & explains so well the possible ways an elongated styloid can create pain.
If you haven’t had your right styloidectomy, I highly recommend you let Dr. Heim do the surgery. If you’ve had the surgery, we’d love to hear how it went for you & how you’re feeling now.
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Leah. RFA is an intense process for c2-c5. I would try to find a good Physical Therapist to work on as much of the mid back and lower neck even the C1 rotation if you can tolerate it. I cannot advise really on having RFA done prior to surgery. Knowing what I now know, I do not think that I would even think about it prior to ES surgery. I am pretty sure that ES surgery and PT would have been the end if I did not have a deformed jaw. I have not looked at the rest of the post to see your situation. I have seen some things that VDM posted and I believe that is right on for why some of us suffer and others do not. VDM knows more about anatomy than 90% of the surgeons and doctors that I have seen. I did as much
PT as I could tolerate before ES surgery, then I did ES surgery. I found it difficult to get my neck and jaw working after, but I got some NECK and upper and thoracic spine, and shoulder PT for almost 3 years between and after the 2 ES surgeries. I think that might be your best bet for now. Do not think too far ahead.
Medicare only allows so many RFA procedures every 6 months. Doctors with Medicare patients have to do bilateral at the same time if their patients need it. I fell from a rental moving van in 2003 and landed backwards on my butt and head. I am pretty sure that my already progressing jaw defect was accelerated at that time. I began having neck problems in 2006 followed by other things including Eagles Syndrome. My jaw is not stable and I believe it pulls my neck out of place. I had c2-c5 done 4 times in 6 months bilateral. I have recovered well from the last 3 and still recovering from this one. Yes, C2 is an issue for some doctors, and some do not do it. If you go that route, find someone who is sure of his ability and if you can find someone who has had C2 RFA with a provider and has a good relationship with that provider, then speak to him or her. Ask around because there are good ones and not so good ones. It is a last choice for me.
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WOW, @emma! What a journey you’ve had w/ your neck! I’m really sorry but am glad you’ve made progress toward keeping it somewhat functional. The jaw deformity is definitely a setback, but it sounds like you’ve learned to manage your symptoms & proceed with life. I applaud you for sticking w/ PT for 3 yrs to help strengthen what’s weak & work on flexibility. Thank you for sharing this experience for @Leah. It’s nice to hear from you again.
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@Kristoffer82 if you have MS and had annual MRI scans with Gadolinium contrast, you might want to read about Gadolinium toxicity, as some people are extremely sensitive to it and get huge setbacks/relapses in various neurological symptoms approx between 1 day and 2 months after each MRI scan.
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Thank you so much for all the good information. And interesting to know that some doctors are not comfortable with C2 nerve root. That certainly was the feeling I was getting without them telling me that. So I will use your wise words in looking at that down the line. Wishing you all the best with your continued challenges.
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Hi guys
This is a respons from Nils Heim. I do not like him anymore.
So next week I do have an appointment with Patrick Axon. Hopefully he will be able to help me
Just as you are, I’m so very sorry to read what Dr. Heim wrote to you especially since he’s such a great ES surgeon. It was especially distressing to learn that he considers ES surgery as an “expensive hobby”. He clearly has no idea of the benefit he’s providing to his patients by his willingness to treat ES. It would be great if there was a way the German ES community could appeal to him to help him understand that his “expensive hobby” is far more valuable to the German ES community than he can possibly imagine.
I’m glad you have an appt. w/ Mr. Axon but am sorry you have to travel so far to see a reasonable ES surgeon. I hope & pray he is willing to help you. 
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So sorry that you can’t get the surgery with Dr Heim, hoping Mr Axon will help …