New here

[MaryLouise]

Hi,

Another newbie here and have read through loads of threads and see that you are all so kind and helpful!

I have a lot of history with mental illness as well as pain and fatigue. It’s all really muddled up because physical symptoms can make the mental health stuff worse, and MH symptoms can make the physical health worse.

I was informed about the ES in January after having an X-ray in December. I know I can’t add images yet but can try to later if anyone would like to see them.

Looking at the other images on here, my Styloid processes are pretty long.

I’ve also been diagnosed with ME/CFS, ADHD, Autism and Depression/Anxiety. I have significant hyper mobility in my shoulders, hips and hands.

At the moment, I’m managing (barely) taking Naproxen twice daily which I think helps keep the inflammation down around the calcification. Even with daily Naproxen, I’m regularly in significant pain (5-6/10), and if I forget to take it regularly, then I’ll be in 8-9/10 at some point most days.

When I need to do anything, I top up the Naproxen with Paracetamol and Codeine but prefer to not take these too much. I’m very reluctant to add any more medications, especially anything that might affect my brain because I often react badly to those meds and end up in crisis. Having said that, I’m now regularly in crisis from the pain and fatigue anyway.

The pain is almost always neck and occipital region, and down my neck and into my shoulders and spine. When I’m not taking the Naproxen, it includes what I suspect is nerve pain down the left side of my body, and I often get a headache on the left side that feels like my eyeball is too big for the socket. I suspect inflammation pressing on nerves.

I am struggling to drive. I suspect that all the head turning involved causes more inflammation which aggravates things. I can manage about 30 minutes at a time and max 1hr in a day. Even limiting that much leaves me with much more pain by the end of the day, or through the next day.

I get mild tinnitus and pulsatile tinnitus which is, again, worse when I’m not taking the Naproxen.

My brain does not like to work. Sitting or standing for longer periods make my head feel like my skull is shrinking.

I had a flare like this about 9-10 years ago, which lasted 18 months then settled for the most part, with a few minor relapses. Then about 18 months ago, something triggered a massive relapse and this one isn’t lifting.

I’m in the UK and absolutely love the NHS but am very worried about how long things are going to be taking to get any help or relief. If at all.

Now I know about ES, I’m questioning the ME/CFS diagnosis but don’t think I’ll know for sure unless I get some kind of resolution to the ES.

I’m seeing my GP in 10 days. I already have a referral to local ENT but it sounds like they can’t do much. In the meantime, I’m exhausted, in pain and totally fed up!

Sorry. Very ranty and long.

[lsheep]

I am so sorry for all the pain and health issues you have been facing. It’s such a tough road to get a correct diagnosis…

I can completely relate to several of your symptoms. I am also having a hard time driving (dizziness). It’s very isolating and stressful.

Thank you for sharing your story here . There are so many wonderful and helpful people on this forum.

[Isaiah_40_31]

@MaryLouise - Welcome to our forum! I’m also sorry for what you’re going through but am so glad you’ve gotten a diagnosis so at least know what you’re dealing with. I just checked your account & you’re good to go for posting images in your next post if you decide to. Please make sure any personal information is blacked out or removed.

Elongated styloids can affect nerves whose symptoms cause symptoms such as ME/CFS, depression/anxiety so it is possible that once your styloids are shortened, the symptoms you have in those regards will significantly diminish or resolve. Unfortunately, we haven’t noted a link to ADHD or Autism, but if the other symptoms are less pronounced, dealing with your ADHD & Autism may be easier.

@MaryLouise

At the moment, I’m managing (barely) taking Naproxen twice daily which I think helps keep the inflammation down around the calcification.

Please be careful w/ the Naproxen. It’s very important to take it w/ food & plenty of water/fluid i.e. 8-16 oz w/ each tablet. Naproxen can strip the mucous lining out of the stomach w/ prolonged use & if not consumed w/ food & adequate fluid. I have gotten stomach ulcers from Naproxen in the past so can no longer take it. There are prescription NSAIDs (Celecoxib, Meloxicam, etc) which are buffered so aren’t as hard on the stomach.

@MaryLouise

I often get a headache on the left side that feels like my eyeball is too big for the socket…I get mild tinnitus and pulsatile tinnitus which is, again, worse when I’m not taking the Naproxen…
My brain does not like to work. Sitting or standing for longer periods make my head feel like my skull is shrinking.

These symptoms suggest that you may have some compression of your left internal jugular vein (IJV) being caused by your left styloid. Was your diagnostic CT scan done w/ contrast? If so your IJV & internal/external carotid arteries may be visible in your images & sometimes compression can be seen. If you do have IJV compression, Mr. Axon would be the best doctor to have a consult with. @Jules can say more about that since she’s in the UK. I’m in the US.

Try sleeping with your head & shoulders elevated at night as that can help reduce the head symptoms. Icing your neck, w/ a thin cloth between ice pack & skin, for 15 min. every couple of hours will help reduce inflammation & may also reduce your need to take Naproxen as often. Gel ice packs are great because they nicely conform to the shape of the neck. If ice doesn’t help or makes your pain worse, then try heat. Moist heat is best. Some gel packs are designed to be either heated or frozen & come w/ covers that can be used dry or damp.

I hope you’re able to get in to see a doctor who is knowledgeable about ES & is able to help you control symptoms until you see someone who does the surgery you need.

[MaryLouise]

Hi, Thanks for your reply.

Yes, I’m aware that the ES could be causing/contributing to the ME/CFS and Depression/anxiety but doesn’t cause the AuDHD. Although yes, both are much harder to cope when combined with the pain and fatigue.

W-rays below: 1-4 are from December 2025 (to look for CCI, yes I know CCI can’t be diagnosed by a static x-ray but… gotta jump through the hoops) and are what the ES was diagnosed from.

Panoramic dental X-ray is from June/July 2024, and does show the calcification.

I’m prescribed the Naproxen by my GP and take Lansoprazole daily to help with the issues associated with the Naproxen. Probably 20% of my time awake, I’m using hot or cold to help with the pain, and when I miss a dose or 2 of the Naproxen, the pain is horrendous I’ve not had a CT (yet) and no idea if/when that will happen. The joys of the NHS.

[Isaiah_40_31]

Thank you for your pictures. When we see segmentation of the styloids, as in your case, it’s more that the stylohyoid ligaments have calcified which creates the appearance of styloid elongation. Your left side obviously has a significant & very curved section of calcified stylohyoid ligament that extends below your mandible. The thick “joint” in the right one plus it’s length also make it look quite alarming. It’s no wonder you’re having the awful symptoms you have. I’ve annotated your first image to show the odd curve you have in your cervical spine. Typically we either see a proper lordotic curve, military neck (no curve) or a reduced lordotic curve. Your neck is straight in the top 2/3rds & has retained a curve in the bottom 1/3rd. That “interesting” cervical alignment could also be contributing to your symptoms. The lordotic curve can be restored but it takes time & patience. We recommend waiting to work on that until after the styloids have been dealt with but you could begin thinking about that now as a future project. Here’s a link with some excellent information in that regard.

You should request a CT scan w/ contrast & done dynamically if you can get that when you see the ENT you’ve been referred to. Any ES surgeon you consult will want CT imaging. Hopefully the ENT will be willing to at least refer you for that.

I’m really glad that the Naproxen you’re taking is by Rx from a doctor & that you’re alternating heat & ice to help manage your symptoms to some degree.

List of my favourite resources on YouTube to learn anatomy

I’ll update this list if I remember/find more. These people are academics/practitioners/physiotherapists and so on, none of the “I tried this magnetic bracelet and it did miracles!” personae. Sam Webster https://www.youtube.com/channel/UCMRHZcgwdSE_9wbwcP8aRJw The Noted Anatomist The Noted Anatomist - YouTube Bob and Brad Physiotherapists https://www.youtube.com/user/physicaltherapyvideo Brian Abelson https://www.youtube.com/c/kinetichealthonline The Visible Body (not the person i…

[MaryLouise]

Thank you Isaac.

I am aware that my spine isn’t quite right. I do have a lot of range in my neck and shoulders as well as winged scapulae.

I have some level of A&P knowledge; I trained as a Personal Trainer a few years ago, although that didn’t cover much of things like this.

I know I need to collect info and recommendations before I go to see ENT.

I am aware that I have trouble recruiting my traps and some forward head posture, both very common in ADHD/Autism, and with my hyper mobility. I have sorted this in the past but that has lapsed since this pain and fatigue returned. I am very frustrated because I know that doing the effort will help with the pain, but I haven’t got the energy to do the effort. Also frustrated with myself and my ADHD because I can’t get into habits and routines (grrr).
I’ll take a look at those resources tomorrow. Thank you.

[Jules]

Do you think that the hypermobility is linked to the autism/ADHD, or have you ever had testing for EhlersDanlos Syndrome? That does seem to be linked to ES… As you have mentioned that you get pulsatile tinnitus then maybe Mr Axon at Addenbrooks would be good to get a referral to… The waits are so frustrating, but if it’s not too long to see your local ENT then hopefully they can refer you to Mr Axon, that’s how I got my referral, through the MaxFac clinic at Ipswich hospital, as they didn’t know much about ES. There are lots of research papers linked on here which mention IJV compression, one written by Mr Axon & a colleague at Addenbrooks, so you could print one of those off to show your GP or ENT.
Here’s the one by Mr Axon:
Dr. Higgins & Dr. Axon : Spontaneous Intracranial Hypotension Complicated by Subdural Effusions Treated by Surgical Relief of Cranial Venous Outflow Obstruction - General / Research Papers - Living with Eagle
And there’s another couple which you might find interesting:
CFS/ME, CFS Leak and IIH induced by IJV compression - General / Research Papers - Living with Eagle
Interesting Article by Kjetil Larsen; AAI/ CCI/ Jugular Outlet Obstruction - General / Research Papers - Living with Eagle
I don’t know how long you can concentrate for though to read technical articles, I had brain fog with IJV compression, & with ADHD on top it might be too much!

[MaryLouise]

Hi @Jules

Thank you for that info. Yes, reading jargon is hard going but I can manage it sometimes.

I actually got a text this morning from the hospital (Norfolk and Norwich) asking me to call and book to see ENT so that it this Sunday!

Their estimated wait time is 16 weeks but I was only referred mid January so I’m pretty stunned​

I will definitely try to read the article by Mr Axon before the appointment, but will at least take a copy with me.

I have GP in a couple of weeks and will be asking for some kind of nerve pain medication. Much as I’m reluctant to go for any meds that affect my brain, I’m in 5-6/10 pain most evenings even when I’ve taken paracetamol and 60mg codeine sooooo…. Just got to wait and hope he agrees to that.

If the problem is ligaments, is there any chance that I’ll be able to get surgery locally or will it still be Mr Axon? At least Cambridge isn’t too far to travel for me.

[Isaiah_40_31]

If it’s just calcified ligaments that are not contributing to IJV compression, Mr. Axon wouldn’t see you. He pretty strictly operates on ES w/ internal jugular vein compression where pulsatile tinnitus is one of the symptoms.

There are other doctors on our Doctors List in England who will resect the styloid &/or calcified stylohyoid ligaments.

[MaryLouise]

Even if the calcified ligaments are causing IJV?

I get typical symptoms of IH and get the tinnitus

[Isaiah_40_31]

Good point, @MaryLouise. I edited my post. Thx for the heads up!

[Jules]

Great that you have an ENT appointment this weekend, I hope they’re helpful… If you are able to get referred to Mr Axon & he is willing to do surgery, that would be the best option- often if there is IJV compression, the styloid compresses it pretty close to the base of the skull, and most doctors who don’t do the surgery very often aren’t skilled enough to remove the styloid that high up. Mr Axon is very experienced so can do that- if not enough of the styloid is removed then you might still have symptoms afterwards.

[geppard]

Hi Mary Louise! I was diagnosed with ES in October 2025. In addition, about 2 years ago I was diagnosed with MTHFR gene mutation via a simple blood test. I was drawn to your statement about ADHD/autism, mental health, and hypermobility. It is my understanding the MTHFR contributes to those symptoms plus many more. We get MTHFR by inheriting a gene from each parent. My children have been tested and both have MTHFR. The two resources I have used to learn more about it is Dr Ben Lynch and Dr Amy Myers, both of you have MTHFR. Dr Ben Lynch has written a book, which is available via Amazon, the name of which is “Dirty Genes”. A woman who has had miscarriages or has trouble getting pregnant generally are tested to see if they have MTHFR. My adult daughter has had two miscarriages. Another key factor is if they know you have MTHFR and you’re dealing with cancer then they can determine the best chemotherapy for you. The same is true if you struggle with depression. By knowing you have MTHFR, they can better determine what kind of anti-depressant works for you. There is so much more information to this MTHFR stuff so I suggest you check get Dr Lynch’s book. There is a great webinar Dr Lynch has that I watch that was so informative.

Oh my! I Just googled the following “does MTHFR contribute to causing elongated styloid process”., Info returned was yes and even info on hypermobility. Google the same phrase I did to see the ton of information returned. There was info from Tulane University, and the National Library of medicine had an article entitled “Folate-dependent hypermobility syndrome: A proposed mechanism and diagnosis” . I am having trouble getting the link to copy here. Those with MTHFR need folate, not folic acid, vitamin B12 in the form of methylcobalamin NOT cyancobalamin. Please read info from Dr. Ben Lynch and Dr. Amy Myers for more important information about MTHFR, which is too much to put in the spot. I hope this helps!

[Jules]

That’s really interesting @geppard , thanks for suggesting the gene testing!

[Isaiah_40_31]

@geppard - The MTHFR gene mutation can be transmitted by one parent, however, the symptoms it causes when both parents transmit it to their children can be significantly worse. My husband carries the MTHFR gene mutation from his father. I, however, am not a carrier of the MTHFR gene mutation. Both or our children have autoimmune issues as does my husband which I suspect are related to MTHFR. I know our son has a heterozygous version but our daughter has never been tested. My sister-in-law & brother-in-law are both carriers. One of their children ended up w/ homozygous MTHFR & had many miscarriages but was able to find a doctor who helped her carry several pregnancies to full term. Her brother does not have the MTHFR gene mutation at all. It’s very interesting how genetics play out.

I appreciate the information you shared about the link to ADHD/autism, mental health, hypermobility, & possibly ES. Dr. Lynch’s book sounds like a great resource. I’ll get it & read it & pass it along to my family.

[geppard]

I, too, had purchased Dr. Ben Lynch’s book, “The Dirty Gene”. I don’t recall if I shared this in my previous post, but when I had my mild stroke in July of 24, from my hospital stay they referred me to a doctor of hematology since I had the MTHFR. It was this doctor, who told me about Dr Lynch’s book. This doctor also has MTHFR. Just a couple of days ago I via the patient portal, I messaged her and asked if I My level of vitamin B12 could be checked to see if I am absorbing vitamin B12. Having a normal vitamin B12 level, does not mean your body is observing it. I also read today in the Facebook MTHFR group that I joined a lady wrote she has kidney cancer. She gave a very good description of the journey she has taken. The short version jer body was not capable of detoxifying the problem that was causing her kidney cancer. Not long after they moved into their new house, she began to have all kinds of symptoms, which eventually led to a diagnosis of kidney cancer. What they discovered her body was not capable of detoxifying the mold that she had in her body. Not long after her diagnosis of kidney cancer, her husband was diagnosed with kidney cancer. She knew it had to be something there be exposed to in their new house. They found mold and an ice machine that had been left in the house they had just purchased. She gives more information about the mold and the test that they had to determine the specific kind of mold. I am so thankful for her post because we too have been battling mold in our house. I highly recommend you Google Dr Ben Lynch and hopefully would be able to listen/watch his presentation concerning MTHFR, etc. It is so interesting. Take care!

[Isaiah_40_31]

Thank you for the mold info. We’ve had other members who’ve had struggles w/ illness from mold so I know it can be a serious problem especially for people whose immune systems are already compromised.

I’ll look up Dr. Lynch & watch his MTHFR presentation.

[geppard]

I can’t thank this forum enough, it’s admins, and members for being available to us. It has really helped to calm anxiety knowing help is nearby.

I was in the hospital this last Sunday and Monday. Unfortunately, I got to experience/see how there are so many medical personnel who do not know about ES. The 2nd different neurologist who saw me Monday morning, shared because all the tests they gave me did not reveal a stroke, she felt the cause of my double vision was a problem with the muscles in my eyes and that I should see my eye doctor. It just so happened my regular 6-month check up with my eye doctor was today. He did test to check how my muscles in my eyes were working. He told me my muscles in my eyes are fine, no problem with them. When I first got my diagnosis of Eagle Syndrome, I had the attitude of just living with my symptoms in order to avoid the surgery that scares me. However, after experiencing double vision on Sunday, and knowing my muscles in my eyes are okay and are not the problem, my opinion has changed. Now I need to find the right doctor with experience in ES to advice me me I what my next step should be. I live in Missouri, and only one doctor is listed on the forum’s list. Take care…

[Jules]

Good that your eye muscles are fine, but not so good that it could be ES causing the problems you had last weekend… are you able to travel out of state otherwise?

[geppard]

Yes, I am willing to travel out of state if I cannot find a doctor closer. I live in the far southwest corner of Missouri, Tulsa, OK is 2.5 hours away from home, St. Louis, MO is 4 hours away, Cleveland, OH ( Cleveland Clinic) is 12.5 hours away from me. Just want this over with!! Thank you so much for all your help!