Need a doctor

[Kristoffer82]

Hi
I was diagnosed with MS in 2010.

In 2012, I had pain and pressure in my sinuses and had “lids” on my ears for a year. In the end nothing was wrong with my sinuses and ears.

I put facets on 4 front teeth 6 years ago due to acid damage.

After 1 week the pain came, and my teeth iced on sour and sweet things.

Pain spread to the jaw, oral cavity, face and other teeth.

I was admitted to Ullevål hospital for the pain, but they couldn’t do anything.

After 2 years, the dentist I use today thought the facets were too big. There was pressure on the front teeth, which created the nerve pain I have today.

This was possibly the triggering cause of today’s symptoms:

• pain in the face

• Involuntary muscle contractions behind the left eye and also around the face

• Pressure in the ears, especially the right, and typically in the morning when I wake up

• Can become light sensitive

• Pain in the jaw

• Pain and stiffness in the neck

• Pain in the head, especially in the temple

• Feels constant pressure in the head

• Difficult to bend down

• When I twist my head or neck it gets worse

• Pressure in sinuses

• Fibromyalgia

• Tmd

Gets worse when I get stressed

I have constant pain, that makes talking, eating, drinking and functioning in daily life difficult

I have been told that eagle syndrome may be the cause of my problems.

I have had a CT scan of the head and neck. My right styloid was 5cm and left was 2,4

I have tried to contact Nils Heim, and was told today that he will be away til september. He will have kids.

Can someone recommend me a surgeon that is equally Good as Nils heim?

[Jules]

So sorry that you’re in so much pain; certaily your right styloid is very long s could be causing you issues, although complicated with the dental work you’ve had done…
We have 2 names on our doctors list, I don’t know much about them, you could try looking in the past discussions for any mentions:
•Dr Henrik Stenwig Li, Rikshospitalet, Oslo
•Dr Nils Petter Fossland, St Olaves Hspital, Trondheim
Have you tried any nerve pain medications? It does sound like your Trigeminal nerve & maybe the Facial nerve are being affected (common with ES), sometimes the meds can make this pain bearable. There’s information in the Newbies Guide Section about treatments, there might be some other tips there which could help you.
Ben’s Friends do also have a Facial Pain Group you could look at for more information, and a Fibromyalgia group if you need extra support?
I hope that you can get some help soon!

[Kristoffer82]

Thank you for the respons.
Can any one of you take a look at my ct images?
I need an opinion before am talking with Rikshospitalet.

[Isaiah_40_31]

My first observation, @Kristoffer82 is that you have “military neck” i.e. you’ve lost the important lordotic curve in your cervical spine. This results in “forward head position” which translates into the shoulders & muscles of the upper body as it compensates for the loss of the curve in the neck. In this era of cell phones & computers, many people have this problem because of the amount of time we spend looking down at our devices. @vdm has posted a lot of good information about this & also links to exercises that can be done to help restore the cervical curve. Your very straight cervical spine is certainly contributing to your ES symptoms. You can search for that information using the magnifying glass icon above.

Aside from that, your right styloid looks very long. It appears your right internal jugular vein is your dominant one, & it is significantly compressed. From the images you posted, it looks like the right transverse process of your C-1 vertebra is more to blame for the compression than the right styloid. It’s possible that restoring your cervical curve could help relieve some of the pressure the TP of C-1 is causing, though getting your styloid removed & having the right TP of C-1 shaved so there’s more room for your IJV could also be very helpful in relieving symptoms.

Your left styloid looks more normal length, but the left IJV also looks compressed. I can’t tell for sure if the angle the styloid is growing is causing the compression or if the left TP is more at fault. Hopefully someone w/ a more trained eye than mine will give some feedback. Based on your list of symptoms, it makes sense that you have IJV compression.

I really hope your appointment with Rikshospitalet goes well and whomever you talk to recognizes how severe your situation is. Please let us know how it goes.

[Kristoffer82]

Thank you so much.
I have a hard time to find these exercises you are talking about. Can you help me?

[Jules]

You might find this discussion interesting:
Question for those with military/straight neck (loss of cervical lordosis) - General - Living with Eagle
If you get a consultation as @Isaiah_40_31 says, the C1 processes certainly look like they’re involved in the compression, so that’s something to ask about; it may be that removing the styloids would be enough to free the IJVs, but some members have found that it isn’t, something to consider…
Your hyoid processes (the Greater Cornu) look quite long too, & looks like they could be potentially be having an impact on the arteries? Hopefully one of our other members with more anatomical knowledge can chip in about this?

[Isaiah_40_31]

@Kristoffer82 - Jules made a good observation that I missed. I also just noticed your stylohyoid ligaments are both calcified starting at the lesser horns of your hyoid bone.

[TheDude]

Hi @Kristoffer82,

Good that you found this nice forum. You already got good information where I can’t add anything. Except, there is one former colleague of Dr. Nils Heim who does ES surgery in Solingen, Germany now as Director of maxillofacial surgery clinic there: PD Dr. Dr. Markus Martini. Unfortunately I can’t tell you much more about him. The knowledge when it comes to vascular ES is very limited here in Germany. Here is the link to his St. Lukas Clinic:

MKG | St. Lukas Klinik Solingen

(See the extention menue “Eagle-Syndrome” in the Download section at the bottom of the page.)

[Kristoffer82]

Thank you all for Your replies and good tips. We will use them at Rikshospitalet.
The good News is that Dr Nils Heim has replied. He had received our photos and will make a report.

[emma]

Hi- I am just here to tell you that I had surgery and have been in therapy for 4 years since to help the neck. Would I do it all over again, yes? Before surgery, I could not even lie down, and touch my neck to a pillow. Sat up to sleep and only touched the top most crown of head to a pillow. However, I did not have really good therapy before surgery. Someone mentioned that the calcified ligaments may be a way of your body trying to help stabilize your neck.
Plan on rehab with a good physio before and after surgery. I am 4 years from last surgery and now getting neck injections and therapy. I can lie flat and that has relieved my sciatica and low back pain.
Lately, therapy has been so effective,(dry needling and exercises) that I may postpone my next radiofrequency ablations. I am still a month from that appointment and that good feeling may only be temporary, but I think you live in an area with very good physio therapists. My best therapists have come from your area of the world. Now I look for therapists that are trained elsewhere than the US. I hope you get some positive feedback from Dr. Heim.

[Leah]

Hey Emma,
I have that same situation of nothing can touch my neck … I’m thinking occipital neuralgia (?). Were you able to identify the source… Not sure I know how the styloid would be affecting the occipital nerve, but haven’t looked into it enough. TIA

[Isaiah_40_31]

Occipital neuralgia type symptoms are definitely among the common ES symptoms. I had that in spades, & it went away after my styloids were both gone. I tried to figure out which nerve caused it but was never sure.

[Jules]

I did have it regularly too- I put it down to muscle tension from the pain of ES trapping the occipital nerve, I’m not an expert in anatomy, but from what I’ve read the occipital nerve arises from C2, C3, so hard to see if it could be compressed by the styloids?

[Leah]

@Jules and @Isaiah_40_31 thank you. I think this might be the connection for me… accessory nerve irritation, which goes to the trapezius.
I’m having trapezius spasms. Those are clamping down on the occipital nerve at the base of the skull. That’s my hypothesis at this point TBD.

[Isaiah_40_31]

Makes good sense @Leah! I probably had the same thing going on because I also had significant claviclar & shoulder pain as a symptom.

[Leah]

Me too on Clavicular and shoulder. It’s really unbelievable how this has affected me for so many years.

[Leah]

@jaylaeb Welcome to the forum! I have many of your symptoms. This is what I am ‘thinking’ about my trapezius muscle and occipital neuralgia … Like you trying to get to a neurologist … but don’t have great hope as like your ENT seems they also don’t know much about this.

I have also passed out a couple of times… seems to have come from intense muscle spasms due to ‘something’ hitting ‘something’. My internist thinks it was a vaso vagal response… and that may be…I’m wondering if my vagus nerve was hit… Those have settled mostly settled down.

I have found the great relief from the occipital pain with Gapapentin. Was on Tylenol 3 which helped but traded it out for Gabapentin and am doing much better.

So sorry for your suffering. You’ve found the right place to get the answers you need. This forum is a God send ))).

[emma]

Leah, I am still in therapy. I cannot find the actual source, but clavicle and trapezius and Sternocleidomastoid and digastric are all involved for me. For most it is the clavicle and trapezius only. I would recommend finding a good therapist or physiotherapist or chiropractor if you like to help. I am in pain management and I believe that with and after Eagles, our necks have become compromised from years of compensating. I recommend that everyone get neck therapy to retrain the tight and loose neck muscles. I am now getting radiofrequency ablations of facet joints in 2 different bilateral proceedures c5-T1 for the first time and after will get C2-C5 again if needed. I have hopes that relieving C5-T1 will help the trapezius and C2-C5 will function because my MRI’s show that C5-T1 are the worst. However, we can followup with C2-C5 again soon after if necessary. I have put off my first C5-T1 in order to be able to try that sequence if necessary. Radio frequency ablations of one region cannot be redone for 6 months and I wanted to be able to follow in a close sequence, if necessary. As I have learned from multiple therapists, it seems that relieving the clavicular region relieves my upper neck pain and gets rid of headaches. I actually ask a lot of questions in therapy and I think they help more than medical doctors with regard to helping me understand my body.

[Leah]

Emma, thanks for all that info. I was on that track before I met my styloid 10 weeks ago. I suspect that will be me as well, as I have a lot of left sided dysfunction from jaw, neck, shoulder, upper to mid thoracic… My styloid is only on left… But I also have a rotated C1 which affects the left side, so I’m working on pulling those two issues apart if I can. TY ))

[Kristoffer82]

Hi

I was at Rikshospitalet yesterday. They think that all my problems is NOT related to eagle.
Got a report from Nils Heim. He recommended to remove the right styloid. I do not know who to believe……

Also wondering, I have pain in the face similar to trigeminus pain. Can eagle be the reason for this? Compressed Ijv and so on