My problems with ES, C1 and SCM are causing compression on IJV

To share with you, any opinion, experience and advice are welcome.

Greetings from Bosnia and Herzegovina! I am 45 years old, male, my problems have been going on for 5 years.

I’ve been following the forum for a long time, but I didn’t want to introduce myself until I did the diagnostics.

To begin with, I will post my CTA/V that I did a few days ago, and this is how the radiologist read it (I’m only listing what’s wrong):

Right side:

ASE — adequate width of the lumen in the initial part, in the further course discretely more graceful without significant stenoses.

Artery vertebralis hypoplastic, diameter up to 2mm without significant stenoses.

Evaluation of the venous system of the neck reveals moderately compressed jugular veins on both sides at the level of the larynx, most likely as a result of a spasm of the sternocleidomastoid muscles, which are clearly traced to the area of ​​the venous angulus.

Punctiform calcifications are detected in the area of ​​the tonsils, which indicates chronic procedural changes, and in the area of ​​the front wall of the oropharynx, slightly more pronounced, moderately expressed adenoid vegetation.

As an incidental finding, I note the prominent styloid processes on both sides.

Analyzing the scans, I see bilateral compression of the IJV by the transverse processes of C1, and the radiologist’s report does not mention this, but compression caused by SCM spasm.

CT scan:
https://www.dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.3.202406299542966.4587529021416331131263

Images:




My problems started 5 years ago and the trigger was shaving my head in a cold bathroom. After that I was woken up by tinnitus, crackling, dizziness, nausea, painful and limited head movements…

In the diagnosis, among other things, I also performed a CT scan of the cervical spine, where spondylosis and bulging C5/C6 were noted, but at the end of last year, during research, I discovered elongated styloid processes on both sides of about 5 cm, and I presented this to the doctors, where I was diagnosed with “Atypical styloideus processus”:

The doctors have no idea what to do about further treatment. Some claim that this is the cause of my problems, and some that it is not, but they look at the 3D images with amazement.
Let me go back to the beginning of my problems.

In the first year, there was nausea and severe attacks of stomach pain with vomiting and diarrhea. GERD and biliary reflux due to loss of pyloric sphincter closure function were diagnosed. After that I lost 25 kg and now I eat food in smaller quantities that is not fatty and very spicy, so I adapted my lifestyle to that and it does not cause me any problems.

I think there is compression on the vagus nerve.

After that, the headaches started getting more frequent and stronger, so I was put on therapy for neuropathic pain, currently Lyrica.

After hypoplasia of the vertebral artery and reduced flow through the basilar artery were established, I was started therapy with the drugs piracetam and vinpocetine and the dizziness disappeared, vision and cognitive abilities of the brain improved.

My symptoms since the beginning:

• Pain and stiffness in the neck, quite limited head movements in all directions. When turning the head beyond the limits, the symptoms of tinnitus, pain and stiffness intensify in a few minutes, and if the head remains in the turned position, vision blurs and the feeling of fainting soon occurs.

• Occipital headaches that wake me up at night (almost every night), so I have to take Diazepam and Tramadol.

• Tinnitus: constant beeping on both sides, occasional buzzing and pulsating noise during exertion or after standing up, more pronounced on the left.
• Occasional headaches in the front, more pronounced on the left.
• If I bring my head to a position lower than the body for a short time, headaches and pressure in the ears occur, and the symptoms worsen in the following hours.
• Frequent sore throats, bilateral or on one side, more often on the left.
• Hypothermia of the oral cavity when exposed to cold and eating cold food, after which inflammation often occurs.
• Toothaches.
• Limited jaw movements with cracking.
• Problems with swallowing, food remaining in the throat, difficult swallowing of probes (gastroscopy), problematic intubation during general anesthesia.
• Tip of tongue numb.
• Occasional speech problems, difficulty choosing and pronouncing words.
• Frequent runny nose, activates spontaneously and is short-lived, and sometimes several days in large quantities of liquid.
• Visual disturbance, blurring, gaps in the field of vision and diplopia when looking to the right, blacking out when standing up suddenly.
• Balance disorder.
• Digestive disorders.
• Hypersensitivity to colder air in the head and neck area, so it almost always has to be covered, otherwise the symptoms get worse.

The first CT scan of the cervical spine from 4 years ago showed these styloids:

I inquired about surgery in Turkey with doctors who perform styloidectomy and thought to do it immediately bilaterally and thus get rid of the problem.
I thought that IJV compression was caused by the styloid, but now this new CT finding has disappointed me to the point that I am giving up on surgery for now.

I somehow believe that styloidectomy alone will not bring good results without decompressing the IJV by grinding C1.

It is an additional operation for which it is necessary to secure financial resources, and I am not sure that the doctors with whom I was thinking of performing the operation do this work.
Now I will try to commit to relaxing the SCM with physical therapy to see what the results will be. I must mention that I have recently been using an infrared lamp at home and I have greatly reduced the intake of the drugs Diazepam and Tramadol.

I am gradually introducing CBD oil.

I have suffered from back pain for many years, I also had a failed lower back surgery, so I fixed it by exercising and swimming for years. I also have two herniated discs in the thoracic spine, and as for the cervical spine, the doctors say it is not that bad.

I don’t know if I have CCI, EDS, intracranial pressure and cerebrospinal fluid leakage, because I haven’t done diagnostics, although in my country I’m not sure I can do that.

I am constantly visiting doctors, doing research and keeping myself mentally stable.

Since I have been suffering for many years, I somehow learned to deal with the pain, but I am fighting for my future, because as I get older, this situation will not go well, and even now I feel it getting worse year after year.

2 Likes

It sounds like you’ve coped really well with difficult symptoms for a long time, and done a good job of advocating for yourself, researching yourself & great that you didn’t give up!
From your symptoms, it does sound as if you could have vagus nerve compression, and nerve pain too- the hypersensitivity to cold, toothaches etc (is Lyrica helping with that?), plus given the pain and stiffness in your neck, so getting your styloids removed would hopefully help with that. If you’re fainting with your head turned, this sounds as if there could be carotid artery compression with your head in that position, so again this might be improved with getting the styloids removed.
Obviously it’s hard to say whether removing the styloids would make that much difference to the IJV compression as it’s been noted that the C1 processes and the SCM are involved, although sometimes removing the styloids can free up enough space so that there might be less compression.
Overall there could well be some benefits from removing the styloids, but maybe not a total ‘cure’ for your symptoms, as you say a C1 shave and treating the SCM muscle may well be needed too- I guess it depends on cost, & the logistics of having just a styloidectomy for a partial resolution of symptoms versus waiting longer to have it all done at once?
Just a note looking at your second image- your neck looks quite straight, without the natural lordotic curve, I’m not sure if that’s just the angle of the image or not? If you do have military neck, that could be something to consider as improving the curve with exercises & posture could perhaps improve some symptoms. @vdm has posted exercises to do this:
List of my favourite resources on YouTube to learn anatomy - General - Living with Eagle
If it is just the angle of the CT image then ignore this!
I hope that your treatment plan and what you’re already doing helps you keep managing the symptoms until you’re able to have surgery!

2 Likes

Interesting as I gave many of your symptoms but a recent consultation points to cervical spine disease from c2-7 so I am awaiting a referral with rheumatologist and pain specialist. Everything takes forever in the U.K. belt me know how you get on?

2 Likes

@tesla001 - You have obviously done a good job of researching your situation using the scans you have & reading the information available here & elsewhere. Your styloids are extremely long. It’s hard to tell if your styloids are contributing to your IJV compression but it is clear that C1 is a problem. Just because your radiology report doesn’t mention the styloids causing IJV compression doesn’t mean they aren’t. We have many members whose radiology reports have not been thorough & have left out important information such as that.

I feel strongly that it would be good for you to contact the doctor in Turkey & send your scans there & discuss your IJV compression with him to get his opinion & find out whether or not he feels he can help you. You won’t know if he does IJV decompression/C1 shaving or perhaps knows another doctor that could assist him who does unless you ask.

Based on your comment that you have a “Frequent runny nose, activates spontaneously and is short-lived, and sometimes several days in large quantities of liquid.” I am concerned that you may have a CSF leak. When you get these runny noses, do you get a metallic or salty taste in your mouth? If so, that can indicate a CSF leak which can be the result of high intracranial hypertension especially if it’s gone on for a long time (5 yrs is a long time!). This is all the more reason that you should discuss your situation with the doctor in Turkey as there may be resources there to help you get everything taken care of in one surgery since you are not finding help in your country.

I applaud you for being very proactive in finding physical therapies & medications that help reduce your symptoms when the medical doctors have not been helpful to you. This speaks highly of your determination to keep functioning at the highest possible level even with the debilitating symptoms you have. In the US we would call you “one tough cookie!” That’s a compliment that says you are dealing with many difficult health problems but are fighting back and working hard to overcome them. You are not letting them get the best of you.

Is Dr. Aghayev ( https://kamranaghayev.com ) the doctor you contacted in Turkey? If so. @gramos just posted this information today - https://forum.livingwitheagle.org/t/my-story-help-and-opinions-needed/16409/20:

:blush:

1 Like

Thanks @Jules, I’ve done a lot of research on anatomy and radiology reading, so I’m pretty much left to fend for myself and diagnosis, as I don’t get instructions from a doctor, so I pay for the scans.

Since this is new in diagnostics, I will work step by step and make decisions that way.

Now I will have material to present to the doctors in the health care system that is covered by insurance and I will see what they have to offer me.

I still have to find out and somehow insure myself if I went abroad for surgery without a doctor’s prescription from the health system. If I do this and there are complications, and they usually are in the first few months, medical care will be needed.
So I have to fight with the bureaucracy first and make sure that I have problems in recovery.

Lyrica is helping me a lot, because I don’t have the severe headaches I had before and the toothache. For the pain that wakes me up at night, I drink Diazepam to relax my muscles and probably improve the flow through the blood vessels, because at such a stage the pillow blisters me like a stone and I drink Tramadol, since I can’t take NSAIDs at night without food.

As for my curve, it doesn’t look that bad, but there is an abnormality in the backward tilt of the skull and probably the anatomy has adjusted in that position so that the styloids don’t interfere too much. There is a deformation in the C0-C1 joints, so it seems that they are not really in any movement, because in the peripheral parts they are sharp-angled instead of oval.
C1 is moved forward enough to narrow the pharynx, thus pulling and narrowing the IJV.
I’ve been doing posture exercises for many years, but I can’t do any neck exercises, not even isometric ones, i.e. when you use your hand to resist the head to activate the muscles, because right after that there’s a noise in the head, muscle spasms and pain.

2 Likes

Thank you @Isaiah_40_31

Today I received a notification from the radiology facility that the addition of my CT report was completed, because the day before yesterday I submitted a request to re-read the findings regarding the flow of the Jugular Veins (IJV) in the part of the transverse processes of C1, because it is evident that the processes of C1 are in contact with the veins both sides and perform a certain compression.

I am not yet in contact with the doctors in Turkey, because I had no intention of doing the surgery before next year. I’m not in that much of a hurry, I’ve learned to deal with the pain. It is important for me to take good care of myself before and after the operation and form a high-quality clinical picture. When I’m ready for that, I’ll contact them.

I also believe there could be a cerebrospinal fluid leak.
Every night when the pain wakes me up, I have to spit out the bitter-salty contents that form in my throat and this has been going on all these years. Some think it’s GERD, so they refer me to a gastroenterologist, but to them it’s an unusual phenomenon and they don’t know what it could be, so I go around in circles.
Several doctors recommended that I be hospitalized at a neurology clinic, as a detailed evaluation is required. I had it done 6 months ago, but I’m not satisfied with the treatment and they discharged me without a diagnosis revealed.
The neurosurgeon I visited recently said that evaluation is still necessary and that I should try another hospital.
In November, I will do a control MRI of the brain and neck, so after that I will insist on hospitalization in the winter days.

Thanks for the compliment and I have to admit that I’m tough and hold my own. That’s what everyone tells me, even doctors, because I really have a long list of diagnoses.
I am still active at work, I rarely take sick leave, because I love the work I do.
I work as a fireman by driving fire trucks and machines when there are actions, but no hard work. I also do administrative and financial work for my fire station.
During duty, I can often rest, if I feel bad, and do exercises in the gym.

This information about Dr. Dr. Aghayev is very useful to me, I did not know about him.
Also, the post from @gramos is of interest to me, since he is near me, so I will monitor his condition and be in touch.

2 Likes

Hello @tesla001
I am sorry to hear for all the symptoms you are experiencing through these years. I respect your determination because we are often accused to be crazy by all even doctors, and you could understand me better since we are kind of in the same region.

I think it’s extra tough for us to deal with these conditions since the possible examinations are limited and probably the only option is in Turkey but its costly.

Comparing your SP to mine, mine look inferior but I don’t know why they are still causing problems especially high heart rate. Which is not a common symptom, that’s why I am afraid to rush in surgery. But if I was in your place with that length and variety of symptoms I would not question twice. @Bowser has already done surgery to that doctor and has very good outcome.

I would recommend you to at least have an online consultation with doctor see what they have to say.
For my case they said I have compression on both sides but didn’t really provide me with some screenshos or something. I don’t known how to make those measurements myself. So if anyone could help me with that I’d appreciate.

I am amazed how you are continuing work and everything with all that going. Since three months my life is in total pause, I lost nearly 20kg as well. But luckily things got a bit better this last two weeks.

I tried physiotherapy as well, but I decided to stop since they don’t know anything about ES, and symptoms started to get worse. Now I only do some simple home exercise for neck. Let me know what kind of oil you use please?
Let’s stay in touch and hopefully we can resolve our issues. Wish you good health

2 Likes

Yes I highly recommend Dr. Aghayev. He not only did my right side ES surgery with excellent results, but he also did my TOS surgery in 2023 which had an excellent outcome as well.

A short update on my own situation is that I will be returning to Istanbul for left side surgery this month as I had an explosion of symptoms on that side.

But Dr. Aghayev is perfectly willing to do bilateral surgery if the patient wants to get it over and done with.

In my case it’s unique that he decided to do only the right side because it wasn’t initially clear how symptomatic the left side was as I had only nerve compression and zero jugular vein flow on the left side, which was a fairly unique clinical finding.

2 Likes

@gramos
I am also sorry that you are going through such troubles.

I believe you will get better as long as you adjust to that condition.

At the very beginning I was very bad, pale in the face, losing 1 kg per week, in a short time I lost 25 kg, so I was 60 kg.

It was a difficult journey, because everything was happening during the pandemic.

The oil I use is CBD (cannabis oil). I don’t know if it is legally allowed in your country and if it is available for sale.

In order to feel an improvement in such complaints, it is necessary to use it for about 3-6 months. I just started taking it and I still don’t know what the outcome will be, and I do it for the reason that it relaxes my neck muscles and helps with back pain.

For now, I will focus on breaking this spasm on the SCM, because there is also a terrible condition, and the vagus passes through there as well. So it doesn’t necessarily mean that styloids do it.

I will try to find out.

Later, when I arrive, I will post 3D images of what kind of compression it is on IJV.

I will look at your pictures and what I think about it, I will write on your thread.

3 Likes

@Bowser
I am glad that you are satisfied with your surgeon and that is important information for me.

Elongated styloid processes or calcified stylohyoid ligaments are very old and an integral part of anatomy. All it takes is some trigger that will activate them causing problems.

After surgery, there are anatomical changes and new mobility, so it is difficult to predict how this will affect the ES, so it is quite normal that complaints may be activated.

For this reason, I was thinking of working bilaterally, but with this new knowledge that my IJVs are not pressed by styloids, it changes my knowledge and plans, so now I have to go step by step in making plans and decisions on how to proceed.

It is very important to get informed and research. I will work on it a lot.

In due course, I will probably contact your surgeon.

I wish you a successful operation and a speedy recovery.

3 Likes

I hope that you’re second surgery is successful, let us know when you have a date so we can pray for you :pray:

2 Likes

@tesla001, @gramos, @Bowser - I’m sorry all three of you are having such severe symptoms and for the way those symptoms have negatively affected your lives. @tesla001 & @gramos - it’s good you are both in a similar part of Eastern Europe. @Bowser you’re a bit further away, but we really appreciate you sharing Dr. Aghayev’s name & how he’s helped you. I believe he will be a valuable resource for our members who live in that part of the world.

I hope for good healing for all three of you as you decide on & follow through with whatever treatment you feel will help you most.

@Bowser, please make sure to give us your surgery date as @Jules said, so we can pray for you. :pray: :blush:

4 Likes

@Isaiah_40_31 @Jules My surgery is on the 23rd of July. Thank you!!

3 Likes

Very similar to my Daughter, she had a zoom appointment yesterday with Dr Michael Elloit in Sydney Australia, he mentioned she may have Stylojuglar syndrome, he wants her to have more scans. On his web page you can what his video on Stylojugular Syndrome.

2 Likes

@Christine1955 - I’m glad your daughter had an appointment w/ Dr. Elliot. He is one of the most experienced ES surgeons in Australia. She should receive good care if he does her surgery. I am sorry she may have stylojugular syndrome but it’s good Dr. Elliot knows about it & is sending her for the proper testing.

1 Like

From your symptoms it sounds like you have some that are more ‘pure’ eagles (throat/mouth/jaw issues) which might be expected to resolve with styloidectomies.

For some people, styloidectomy is enough to allow their jugular to open up too, though I think frequently the c1 needs to be addressed too.

On the SCM, I found this Facebook group useful for resolving pain at the skull where the SCM meets the skull:

https://curalistic.org/starthere/

(I ignored the claims about how it cures every ailment though!!)

Thanx @Christine1955, I wish your daughter a successful treatment!

@IJVCompression ,
My primary problem is a headache that wakes me up at night, and that’s why I take the most harmful drugs. Then the problem due to the inability to rotate the head, and then the aforementioned symptoms with the throat, mouth and jaws follow.
I’ve been in that fb group for a long time and maybe I’ll follow the instructions the woman shares through the videos more.

Since this topic is about IJV compression by SCM, I’m posting a picture of what it looks like.

1 Like

Thank you for posting the images, @tesla001. They’re very interesting and explain how one can experience vascular outflow obstruction symptoms w/o styloid or C1 involvement. We’ve seen that more often w/ a nerve or other blood vessel wrapped around the IJV but it’s true that other local soft tissues could participate in IJV strangulation.

2 Likes

I have to comment on the claims of the FB group (I did read your disclaimer) & will pick on curing Meniere’s Disease aspect. I was diagnosed w/ MD in 2015 after a cycling accident w/ a head injury left me w/ left ear hearing loss. I was in the thick of my ES journey & had already had one surgery & was awaiting my second. The second surgery did help to relieve some of the MD symptoms but unfortunately not the chronic tinnitus & hearing loss. In 2021 I received the link to a medical research article that mentioned IJV compression had been found in a number of people who had a MD diagnosis. When the IJV was decompressed, most of the people in the study had hearing restoration to at least some extent. That motivated me to check to see if I had IJV compression, & though it took more than a year, I found out I do so am now pursuing surgery to get that corrected & hopefully get some of my hearing back.

I’m intermittently on an MD forum & can only say that just as w/ ES, the symptoms are many, varied & complicated. What works for one person doesn’t always work for another in regard to giving symptoms relief or reduction.

1 Like