New member, from energetic man to 24/7 suffering: looking for members help

[ryanab]

I am really happy I found out about this group a few weeks ago, after a really bad experience with the medical world (dismissing, gaslighting, lack of knowledge…) I started recently to take my health problems in my own hand now. I haven’t interacted with any post yet so let me present myself and will try to give as much informations as possible:

Presentation of me & brief story:

I am soon to be 25, living in Europe (BE), I was pretty normal/energetic in the past (job, sports, …)

Since Jan 2024 I’ve been suffering from, permanent 24/7, head (& neck) pain/pressure that have been increasing and getting worse (we’re close to 2 years now) with many other symptoms. At first I was very unwell but I could still combat myself and go to work until my situation worsened a ton more to the point where I now can’t do anything because of the intense suffering, I am just at home pretty much all the time, lost everything. Mentally I am “good” meaning I’ve never been depressed or anxious or had mental issues: obviously this hardship took a super huge toll on me but I did everything to stay strong mentally. So it’s the permanent physical head suffering that causes everything. (I usually have to always start with this disclaimer with doctors, I am sure you guys have been used to it at this point.)

The period just before I had this I was doing lots of weighlifiting and lots of valsalva (I know it’s bad but was so used to doing it, subconcious addiction/habit I guess) that’s the only potentially “bad things” I can think of doing. After the valsalva I used to always feel dizzy for a bit but would become normal within 10 minutes and that’s it. Was living normally.

My current symptoms (24/7):

• Head:

  • Huge head pressure, & whole head feels heavy. Pressure is way stronger in the back of the head (forehead area feels pretty low pressure compared to the back & left-side area)

  • Sufferings are even worse when waking up in the morning (everyday without exception!) and late ate night before sleeping.

  • When bowing down superficial scalp veins (forehead, next to temples): mainly on the left-side of the head, inflate a lot. Unable to stay in a position with the head bowed down for more than 10 seconds. feeling like a lot of liquid/blood accumulating.

  • Left-side of the head feels like the source of the suffering. Most of the deep & sharper pain is stemming from this side. The area being and aorund the ear. Lots of strong pressure.

• Ears:

  • Tinnitus (stronger in the left ear) whistling-stable sound: horrible, it didn’t start at first until the 3/4 months mark, it started slow at first but after 4 months it became very very strong. And now I live it with everyday.

  • Sometimes (not 24/7) pulsatile tinnitus hearing blood pulse/liquid flow.

  • Ears feel clogged/full (24/7): i have to push my jaw and it pops like some popping paper.

• Neck:

  • Neck is quite tight, especially the left side (very tight all day everyday, even after going to physio etc, they can relax the muscles, 50% temporarily, but it all comes back within a few days maximum.)

  • Feeling derangement in the right side of my neck under the chin/jaw. This started only a few months ago.

  • and there’s strong blood pulsing, most of the time, (mostly the right side of the neck) I can easily visually see it in the mirror it’s quite frightening. the strong pulse can be felt in the superficial veins going next to the ear as well. it’s quite strong, can hear it when I am on my pillow and the pulse from the skin touches my pillow and you hear it. From what I understood that’s also the side where most of my venous flow has to pass thru (my right side)

• Sleep: Before the health issues I used to sleep very well 8/9h a day. Now before of the horrible state of my head etc I have an extremely hard time to sleep, lots of insomnia and sleeping only 4-6h a night without exception (for a close to a year now!)

• Appetite: lack of appetite, eating half or less of what I was eating before.

• Blood pressure: my blood pressure started to get high after these health issues started! I am regularly at 140! I take (med) 1 pill of coversyl a day for that that my doc prescribed me. That’s the only med I currently take. I also feel the blood pulsing thru my head every morning when I wake up, quite strong, worrying

And obviously: feeling extremely tired all day, very dizzy, vertigo, unable to ever sleep well. Forced to stay at home 95% of the time, going out even for basic stuffs is a hard mission and can’t stay out for a long.

So yes, as you noticed my state is quite hardcore, I can’t live any normal life and my days are just full of suffering from morning to night non-stop.

Exams & appointments:

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Before taking matters in my own hand:

Had many neuro appointments, many physiotherapist and chiro appointments, 2 ear doctors appointments): the neuros just did a brain-MRI (had 2) & cervical-spine-MRI & sitting LP at ER by the neuro (but no measure of the pressure!! they just analyzed the csf liquid to check for meningitis.. so to this day I don’t know my intracrannial pressure!): which ruled out brain tumor, MS and few other stuffs and since then → they’ve dismissed me they didn’t try to look any further they said “we don’t know what you have there’s no point in coming back just take these migraine & sleep/depression meds. and go to an ENT/physio/acupuncture… I went to 2 ENTs for my huge tinnitus and ear fullness and they said my ears are fine, good hearing and they didn’t notice inflammation etc, and yea they told me that they don’t know & bye. Went many times to the chiro & physio and they didn’t help for more than relaxing the neck muscle temporarily for maybe 2 days. the first neuro mentionned in my file that i potentially had occipital neuralgia (Jan 2024) and since then all doctors dismiss everything I say and just tell me u might have occ. neuralgia like parrots. When I genuinely don’t have anymore symptoms that looks or feels like occipital neuralgia!! it’s way more than that (at some point my occipital nerve was irritated and it sometime is. I don’t know why but I am sure that it’s not neuralgia it’s because of something that impacts it). In the past my gp prescribed me topamax (med) which I had to stop after 5 days because I had a huge crisis in the night and felt like my head would explode right then and there (went to ER etc) so stopped since then.

(cervical-spine-mri image (will upload it later) I seem to have little scoliosis as well)

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After taking taking matters more in my hand, lots of research (very recently):

I paid for ChatGPT 5 Pro (the 200 dollars/month subscription, that is the most powerful AI model currently available, it does lots and lots of web research before answering) to chat about my health issues and finally have something that’d listen to me for more than 3 minutes like these doctors and know more than them. It’s been really helpful, with my symptoms and story it directed me towards issues like: IIH, Eagle syndrome, venous congestion in the head, craniocervical instability etc etc.

I had to go to germany last week (I live 1h away) where you go in private radiology center and pay out of pocket for exams without needing a doctor’s referrals to have a CTV of the neck/base of the skull + I also paid for a new brain MRI few weeks ago (I asked the radiologist to add an venography sequence but he failed to do it well as he tried to take both arteries and veins which cause arteries to show more and we barely see veins. but we can see the transverse sinus a bit in 3d which is good). these 2 exams were expensive but hope they can help.

• Brain MRI link/images: https://easyradiology.net/view/7ukffhvi-e64n4vqq-1oit0t7j-oco7p0uf#_A2UNLEIt-8S96hiQk-HxuQDsI4-DaEBWjaL

  • Hypoplastic veins in the left side: left side is a lot small/thinner than the right side specially for transverse sinus and jugular vein. (He said that it’s congenital/born with it and that blood flow shoud naturally go more to the other side and it isn’t an issue from what he knows) I obviously don’t trust random doc/radiologists opinions anymore my goal is to just have the images.

    

  • 

• CTV of the neck & base of the skull -images: https://www.dropbox.com/scl/fo/qfuzdn30nkqz69hburs3k/AKwKwY2y7HVA7m_2XCM4X8U?rlkey=mboa03zj1bh54zppfgf8a3mpo&st=1k5jgc7v&dl=0

• ( or https://www.dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.1.20250928211722158.97800392655665795825 )

  • radiologue asked the CT tech to take the images, saw him for 2 minutes after the exam where he just confirmed from the images I had hypoplastic/small transverse sinuses etc in the left-side of my head and that “the majority of your venous flow passes thru the other side” he said that my jugular foramen hole on the left is very small and that it was so since birth. He wasn’t really aware of ES issues more than (”ES is when the styloids are very very long which is not your case” he measured mine quickly and said that left-side was 2.8cm). He said from his pov all of this is interesting to know/find out but he doesnt think its problematic and told me to have a nice day. Thankfully I asked of the CD with DICOMs to do 3d reconstuction of the bones (he didn’t take thin slice of the jugular veins… but we can see them in the different 2d view)

  • I am not a specialist but noticed myself from what I’ve seen from my research: something that looks like very clear compression from Styloid/C1 especially on the right side (dominant side). potential stenosis of transverse sinus (dominant side, the non dominant side is barely visible as it’s very thin). What do members here potentially see, would be really grateful for all your opinions.

  • the space between my styloid & C1 atlas seems to very VERY VERY TIGHT, especially on the right.

  • My C1 atlas doesn’t seem aligned/straight, it seems titled .

  • Images are found on the links I uploded but I put some here for those that can’t check the links:

Members opinions, feedback etc + what’s next ?

• Would appreciate anyone’s comments on my situation and case. What do you potentially see, dots connection etc ? Am i dreaming or eagle syndrome is ALSO very clear in my case ?

• What’s next ? I am based in europe (Belgium) I can also physically go to consultations in Germany or the Netherlands if needed as I don’t live very far from the border.

  • I can also book (online) teleconsultations with competent specialist that offers them, any best recommendations ?

• Are my current exams “enough” so would I ideally need more imaging/exams done (if so which ones, or maybe a real MRV etc).

• In the meantime, any meds or therapy recommended to at least alleviate the symptoms. Should I maybe talk with my gp to test diamox for a few weeks ? I am in a such state that I just want to feel slightly better so I can suffer less in my days in the meantime of finding solutions.

• Looking forwards to all your comments and stories, I’ll be try to active on this forum from now on.

Thanks everyone!

@KoolDude @Jules @Isaiah_40_31 @elijah

@vdm @MsBearshark

[CathyB]

I am a brand newbie so I can not offer any useful suggestions! I have been reading some of the posts and the members here are awesome at sharing info and referrals.

[TML]

@ryanab welcome to the forum. I think you’re in the right place.

Regarding C1/C2 rotation - that’s normal. Almost everyone has an off center C1, so I don’t think that’s an issue.

It appear higher up in C1 both your styloids and C1 are compressing your IJVs. However, when you go down a bit, the compression is mainly happening from C1 (i.e., the styloid isn’t touching the IJV). So I don’t think styloidectomies alone will help you, I think you may need a C1 shave, particularly on your right side. Your right IJV is your dominant IJV and it’s pancaked against C1. So your vagus nerves are likely compressed between your IJVs and C1 as well.

[TML]

In the axial view, can you scroll down to the horns of the hyoid like this:

And also down to your thyroid superior horns like this:

Sometimes they dig into carotid arteries and can cause pulsatile tinnitus. But so too can IJV compression, so it’s always good to double check that there isn’t multiple things happening.

[TML]

You may also be experiencing some IJV compression by your SCM & anterior scalene on one side:

[ryanab]

For sure I took a video of the whole sequence, here is the link of the video, let me know what you see:

• Dropbox

And we can’t get to see the carotids on this CTV right ? or can you still notice them ? Thanks

[TML]

Yup, you can see your carotids. I’ve labelled your ICAs in green at the level of C1.

Your hyoid greater horns do touch your ECAs but I don’t think it’s significant enough to cause your symptoms (i.e., you wouldn’t be able to hear them because they aren’t getting compressed). I think your symptoms are likely coming from your IJVs at the level of C1.

Your difficulty is going to be finding a surgeon to operate on you. There are many surgeons who religiously go by the “not ES if styloids are not greater than 3.0cm”. I don’t think your styloids are quite long enough. Doctors are slowly becoming more accepting of the idea that ES has more so to do with the angle of the styloids and what they are in contact with. In your case the IJVs. You’ll need a surgeon who is knowledgeable about IJV compression and willing to cut your styloids above C1 and shave your C1 transverse process

[Isaiah_40_31]

@ryanab - You’ve done a great job of researching to discover the potential cause of your symptoms. I agree w/ @TML that your right IJV looks very compressed. I also annotated one image & marked what I think is calcified thyroid cartilage that looks a little ominous in the way it’s jutting up toward your hyoid bone. From the angle of the image, I’m not sure how close it really is thus it may not be a problem at all & it’s only the angle in the image that makes it look concerning.

Also of note is that you’ve lost the lordotic curve in your cervical spine. When the cervical spine is straight, it’s referred to as military neck & the straightened position brings the styloids & greater horns of the hyoid closer to nerves & vascular tissues in the neck. The lordotic curve can be restored via gentle PT exercises. This post by @vdm has a lot of good information about the cervical spine & exercises to help with the cervical curve:

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…

Here are images of proper cervical curve vs military neck:

There is suspicion that ES can contribute to slight scoliosis in the cervical spine for those who have it alongside ES as muscles compensate for the pressure that the styloids are putting on nerves in the area which, over time, can adjust the spine to one side or the other.

Regarding doctors who can help you, Dr. Ladner in Belgium has done surgery for a couple of our members & Dr. Martini has recently been mentioned as a good surgeon to see in Germany. I don’t know if either of them do IJV decompression when shaving C1 is required. It would be worth getting a consult & asking about that. The two doctors we know of in Europe who do the surgery you’ll need for the best outcome are Mr. Axon in England & Dr. Aghayev in Turkey.

•Dr. Thierry Ladner, Hospital CHIREC, https://www.doctoranytime.be/d/stomatologue/ladner-thierry?utm_source=gmb&utm_medium=organic&utm_campaign=profile

•Dr. Markus Martini at St. Lukas Klinik in Solingen/Germany,
Mund-, Kiefer- und Plastische Gesichtschirurgie, https://www.martini-klinik.de/en/contact - works together with Dr. Sarah Neering

•Mr Axon, Addenbrooks Hospital, Cambridge (Otolaryngologist/ Skull base surgeon, very experienced with ES surgery, special interest in Pulsatile Tinnitus. Also does private work at Spire Lea hospital, Cambridge, for Spire Health care. Mr Patrick Axon - ENT Surgeon (Ear, Nose & Throat) | Ear, Nose & Throat Surgery | Spire Cambridge Lea Hospita

•Dr. Kamran Aghayev - https://kamranaghayev.com

Our member @Felix had successful ES surgery in The Netherlands but didn’t post his doctor’s name, however, he did give us this information. You can send him a DM to ask who did his surgery:

I will ask the doctor if he minds that I add his name (and the one of his disciple to the list). In any case I would say that there are at least 4 hospitals in The Netherladns where there are experienced doctors with ES:

1- LUMC in Leiden

2- RadboudUMC in Nijmegen: This one is already in the list

3- ErasmusUMC in Rotterdam

4- AmsterdamUMC in Amsterdam. This hospital/University has also been doing a lot of research on ES. Here one of their latest papers if you are interested. Eagle syndrome: tissue characteristics and structure of the styloid process | JBMR Plus | Oxford Academic

[ryanab]

@TML

by your SCM & anterior scalene

Thanks the comments @tml ! I also noticed I had an old neck CT of the carotids done in the past and my carotids looked ok. On the neck level the jugulars seems to be where most of the compression is at.

• And good catch for the “SCM & anterior scalene” muscles compression on my left side’s jugular, does this need surgery or can it be decompressed “naturally” with specific exercices and physiotherapy ?

• Btw will a catheter venogram/angiogram be necessary ? Should I push to get one done via an IR?

• Did you notice a potential transverse-sinus stenosis on my right side ? I know they usually fix that by stenting via IR

[Isaiah_40_31]

Based on how your imaging looks, I’d say you don’t need an angio/venogram. Those come with the risk of a stroke. Your symptoms are significant enough to suggest your IJV compression is serious.

If the pressure the SCM is putting on the IJV is significant, a bit of the SCM can be removed to allow the IJV to open in that area & that would be done at the same time as the C1 shave. It’s possible that taking care of the upper end of your IJV will relieve pressure on your spinal accessory nerve, which innervates the SCM, & might allow the SCM’s pressure on the IJV to reduce, thus no need for intervention there.

[ryanab]

Thanks a lot for your first impressions @Isaiah_40_31, it’s good to know that you also confirm seeing a strong compression of the IJV by C1/styloid. Does my situation looks like both sides should be done or decompressing the right side first only should preferred ?

• As for the “calcified thyroid cartilage” I just took more screenshot of both side of my 3D reconstruction, tell me what you see

  
  

• Good to know that my neck doesn’t have the natural curve it should ideally have, I’ll check out the post by VDM about the topic. Did any members improve significantly improve their curve ?

• You said “There is suspicion that ES can contribute to slight scoliosis in the cervical spine” → on m cervical-spine MRI I noticed that I might have a clear scoliosis (in the thoracic area?) I’ll upload the image here:

  

• I’ve heard good things about Dr. Aghayev, i also read his article about eagle on his website he seems to be quite competent about this condition. His receptionist told me he does 30 minutes online consultations as well. ——— Dr. Ladner & Dr. Markus Martini & Nils Heim are close to where I live and seem competent but I’ haven’t seen them mention cases with C1 resection, which I wonder if it’s useful in my case to just remove the styloid without the C1 shave as @ TML pointed out my C1 is also very problematic ? And hanks for the rest of the list of hospitals in NL.

[TML]

I don’t think the amount of compression caused by your SCM/scalene is overly significant. It isn’t nearly as bad as your C1 level. I think getting the surgeries up at C1 will cause your symptoms to dissipate. And physiotherapy can help at the SCM/scalene level, or even neurotoxin (botox) to the scalene. Wouldn’t jump to surgery on that one.

For a comparison, here’s my IJV compression from my SCMs/scalenes. (Can’t see my right IJV, but it’s happening over there as well)

[Jules]

I can’t really add in anything else as the others have covered it all! But I agree that it looks like a C1 shave might be needed as well, & we don’t know of as many doctors who do that… If you don’t get anywhere with the doctors in The Netherlands or Germany, or hopefully Dr Aghayev in Turkey, or Mr Axon in England could help…
If you’re not already, try sleeping propped up as that can help with head pressure. Some members have been prescribed blood thinners like plavix, brillinta, eliquis, this helps sometimes.
Also a few members have found that supplements seem to help, there have been discussions about creatine and citicoline.

[ryanab]

thanks jules, any feedback on Diamox for my case ? as it seems that my Intracrannial pressure is very high, i seem to suffer from all the symptoms fot it, a lot, caused by the venous congestion in the head I guess (even if my pressure wasn’t measured via LP).

• Should i talk with my GP to see if he can prescribe me Diamox or blood thinners for a few weeks to see if there is a bit of an improvement in the symptoms ? not sure what @TML @Isaiah_40_31 & other members think about that/from their experience. (in the meantime I consult with specialists and see what can be done as it could be a long time).
  • 
• On my first post images doesn’t my transverse sinus look a bit problematic, I want to mean the problem might be from 2 sides: at the C1/styloid level + at around the transverse sinus level ?
  • Axial view of the CTV: Dropbox
  • Image of sinus transverse on the MRI, 3D reconstructed:
  • 

Thanks to all members

[Jules]

Yes, blood thinners can sometimes help when there’s IJV compression, so that might be worth trying. I’m afraid I don’t know enough about transverse sinus issues so I’m sorry I can’t comment on that…

[tesla001]

@ryanab You have presented your condition in detail and shared important information for analysis, so I can give my opinion.
It is good that you are persistent in educating yourself and looking for solutions, because ultimately you make the decision about the choice of treatment and your fight, so you should act wisely when making an important decision about surgery.

The other members have explained a lot, but I would like to draw your attention to the fact that the narrowed jugular foramen is a rather big problem for you. So I suggest that you consider in consultations with your doctors how much sense it makes to do C1 grinding, if this foramen above is causing you to narrow.

In your MRI scan, I noticed that you have a narrowing of the right vertebral artery, it is hypoplastic, so (if you haven’t already) you should do a transcranial color Doppler to see the flow values ​​through the vertebral and basilar arteries.
This can cause you a lot of trouble, if not now, then as you get older, but there is a therapy for that that can improve the condition. I speak from my own experience, because my right VA is also hypoplastic and I have been taking medication for the past 6 years (I am now 47).

I marked your MRI that I looked at:

Regarding IIH, you have reason to believe. What immediately struck me on your MRI image was that your sella is empty, which is a possible indicator of IIH, but that does not confirm the diagnosis, but rather raises the possibility.

I also have an empty sella, but IIH has not yet been confirmed. In 15 days I will have another MRI of the brain and I will do an MRI of the orbit for the first time, so we will see what happens next.

Unlike me, your symptoms started much earlier, because for me everything started going downhill at the age of 42, but we have a lot of symptoms in common, so you can see my story:
https://forum.livingwitheagle.org/t/my-problems-with-es-c1-and-scm-are-causing-compression-on-ijv/16546/4