Eagle syndrome with IJV Compression.New member from Russia

[Ruslan]

Hi everyone
It’s day 21 after my bilateral styloidectomy and partial C1 resection.

From the symptoms: the pressure in the back of my head is gone. I can now sleep through the night without those terrifying awakenings and without the feeling of suffocating. The brain feels calmer.

My hematocrit, which used to be 51–52%, dropped to normal values. It looks like it was a compensation for chronic oxygen deficiency in the brain — the blood was thickening to deliver more oxygen. Hemoglobin and red blood cells also went down; they are still slightly above the upper limit, but much closer to normal now.

Ultrasound showed normalization of venous flow in the internal jugular veins. On the left, it was 110–120 cm/s at the top and 80 cm/s at the bottom — now it’s around 40 cm/s. On the right, it was 120 and 105 — now about 80. That’s a clear shift.

There are still muscle spasms in the neck and a feeling of tension in the back of the suboccipital area. I think this is due to biomechanical adaptation after the removal of the styloids and part of C1. I added light torso and leg exercises to take pressure off the neck, and it seems to be helping. I still sometimes wake up from muscle pain, but it’s not nearly as frightening as the suffocating feeling I had before.

But tinnitus remained, and although brain fog got about 30% better, it was still far from ideal. So I kept searching.

I noticed that my fasting glucose had always been high, but my HbA1c was low or normal, and my triglycerides and HDL cholesterol were very low. That made me think that there was a problem with how my body uses fuel. Glucose was in the blood, but my brain cells probably couldn’t access it properly or burn it effectively. At the same time, fats were also unavailable due to low levels and possible bile issues.

I tried a microdose of trimetazidine (8.75 mg), and after about 3 hours, my brain fog significantly decreased. My head felt clearer, calmer, and more stable. Tinnitus has also decreased by about 30%!

Trimetazidine helps cells switch from using fats to using glucose more efficiently. In a situation where the brain is under stress, or where oxygen supply is limited, this mechanism helps neurons produce energy in a cleaner and faster way.

I’ll keep experimenting with it and also work on improving bile flow, since that’s clearly another weak point for me.

Right now, my daily support includes:

• Rhodiola rosea extract (5 drops in the morning) as a mild adaptogen
• Trimetazidine 8.75 mg in the morning and at night (though I might reduce the evening dose as it seems to stimulate vivid dreams)
• Ursodeoxycholic acid (Ursosan) to support bile flow
• Light morning exercises to improve posture, circulation, and unload the neck muscles

I also stopped taking gabapentin - before surgery it used to give me a sense of stability and “life,” but now it just creates mental fog and heaviness. I tried citicoline as well, but it caused too much stimulation and internal tension. I’ll bring it back later, once the system is more stable.

[Isaiah_40_31]

What a great report at 21 days post op, @Ruslan! It sounds like your healing progress is coming along well. It may take several months for your brain fog to naturally go away as your brain is relearning what it’s like to have normal blood flow after some time without it. I’m glad you’ve found that Trimetazidine is helping reduce the residual brain fog you have. We’ve had a couple of members comment that Creatine has helped reduce their brain fog. Without doing a Google analysis, I wonder if the two supplements are relatives?

Please continue to update us regarding how your recovery is going. I’m very happy to know things are going so well for you at only 3 weeks post op.

[Jules]

I’m so glad that the surgery has helped with lots of your symptoms, that’s great to hear! As @Isaiah_40_31 says it will take a while for your brain to adjust so hopefully the brain fog will improve with time…
Interesting the trimetazidine helps, not heard of that before, has your GP prescribed it? I’m doing the opposite, I eat keto so switched to fat burning & feel lots better on that, but I guess if you have bile issues then that would be difficult!
I hope you keep healing well

[Ruslan]

Hi everyone,

I’m currently around 4 weeks post-op after bilateral resection of the styloid processes and partial resection of the C1 arch for jugular vein decompression.

My condition has worsened recently — after a long car trip and increased head/neck mobility. I’m now experiencing disturbed sleep, episodes of waking up in sweat, pressure spikes during the transition to sleep, and persistent fascial/muscle tension in the neck (especially on the left side).

I’m mentally exhausted and trying to understand what’s part of normal recovery. I think it’s permanent, and I’ve started thinking about giving up. It’s very difficult.

How long did recovery take for those of you after similar decompression surgeries?
Is it normal that my neck still can’t find a stable position for sleep after a month?

Any input would be greatly appreciated.

[Jules]

I’m so sorry that you’ve had a set back; it does seem to be common to have ups & downs, but isn’t easy to stay positive & keep the hope…sounds like the vagus nerve could have been irritated and it needs time to settle? Nerves can take months, even up to a year to heal properly. So really 4 weeks is still very early on in your recovery… If you can focus on any positives there are post surgery, try to keep your mind on those…
It might be possible once you’ve had full healing to start physiotherapy to strengthen those neck muscles, and hopefully that will make your neck feel more stable, hopefully others who have had this surgery will give you some information about recovery, praying that this improves

[Isaiah_40_31]

I’m also sorry to hear about your set back, @Ruslan. As @Jules said, there can be some backwards steps during healing i.e. going from feeling pretty good to feeling pretty awful again. You can try icing your neck again for a few days or maybe now putting heat on it will feel better & help relax your tense muscles, & sleeping w/ your head elevated at night. Taking over the counter pain medication may help, too. Make sure you’re taking it easy during the day for the next week or too. It’s so easy to jump back into activities once one starts feeling better even though the body isn’t quite healed enough to do so. Unfortunately, then there is regression & pain returns for a while. I feel confident if you take it easy & give your self more rest than you may want, the symptoms that have returned will gradually go away again. Nerves are definitely slow to recover & sometimes the process is so gradual you won’t notice the symptoms are gone for a while once healing is complete. In another month, you can start PT for your neck & facial muscles.

How are your vascular symptoms doing? Have they gone away? Those can take some months to go as well because your brain is having to adjust to a new level of blood flow that it isn’t used to.

I’ll also pray for these new symptoms to go away as quickly as they came.

[Ruslan]

@Isaiah_40_31 @Jules thx for your care and supporting! its very important thing for me.

Hi everyone! Here’s an update on my situation at day 40.
Recovery is really not linear – there are moments of regression that trigger anxiety and apathy.

After the my long road trip it took me about a week to get back to myself.
I spent a long time experimenting with pillows but finally settled on a flat one. Occasionally I still have episodes of night “choking” that was before the surgery (as if the brain was suffocating). I associate this with fascial pressure on the veins/brainstem. But it was one or two times.

I also don’t tolerate heat well, and it’s clear that my body is trying to adapt blood pressure to the new venous outflow – it fluctuates, especially the diastolic. This is triggered by nerves and long sitting, sometimes by prolonged walking.

I started taking myo‑inositol (2 g) and Coenzyme Q10 (100 mg) in addition to trimetazidine, and in the last 4 days I’ve felt almost as productive as before the surgery.

Tinnitus is still with me, but its level is not constant – it decreases during the day, and trimetazidine really helps to regulate it.
I can watch movies, listen to music, and communicate with people again.

Unpleasant symptoms:
Sometimes I feel pressure in the right jugular vein – it makes me slightly uncomfortable, but it passes.
I also have strong deep fascial tension on the right side, which pulls my neck and sometimes causes spasms in my forearm.
My sleep is relatively normal, though sometimes I wake up with neck pain.
My ears have regained about half of their sensitivity.

Overall**:** life is manageable, and most importantly, I can now share my story with doctors, which opens the path for new patients. I flew back to Moscow and started going to the office part‑time after a long period of remote work – and I can manage it!

Tomorrow we plan to start very light physical therapy and observe my reactions.

I’m still very concerned about how my body will compensate for everything and whether new complications might appear. But the biggest part of the journey is already behind me. Thank you all for your support! Together we’re opening hope for others who are still suffering.

[Isaiah_40_31]

What a great update, @Ruslan! Since you’ve had your surgery, we’ve added another member from your country who’s already had surgery & is awaiting the second one. I’m happy that we have been able to add a couple of doctors names onto our list for Russia. I don’t know if either of them treat IJV compression, but one at least seems very competent w/ doing styloidectomies.

I’m glad your symptoms from the long road trip have settled back down. You will likely continue to notice symptoms coming & going for 6 months or more but it gets less & less as the months pass. I hope no new symptoms pop up.

It’s also good news that you’ve been able to go back to work part time in your office vs having to work at home. That’s a very significant step in recovery.

@Ruslan

the biggest part of the journey is already behind me. Thank you all for your support! Together we’re opening hope for others who are still suffering.

HOORAY! that the worst is past, & the present is giving you hope of returning to normal even if that’s a journey in itself. In the US, there’s a say, “What doesn’t kill you makes you stronger.” It may not make you physically stronger, but it can strengthen character, endurance, patience, faith, & other important things. Hopefully you’ll gain strength in every area.

[Ruslan]

I also know one center of the Moscow Research Institute of Neurology that deals with styloid appendages, but with my appendages of nominal length and jugular vein compression, they refused to refer to the lack of relevant experience. They performed about 10-30 operations to remove the styloid appendages with decompression of the arteries and nerves in classic Eagle syndrome. You can also add them to the list. Taras Andreevich Shatokhin, operating surgeon and Head of the Neurosurgical Department Синдром шиловидного отростка (Синдром Игла)

[Jules]

I’m glad that you are seeing some improvements & have been able to go back to working in the office a bit, that’s good news! Sounds like you still have a way to go, but hopefully you’ll keep seeing more improvements and your body can adjust to the venous outflow changes…hope the physiotherapy helps too

Thanks for that doctor’s name, I’ve added him to the list, we’ve just had another two new Russian members join today! @Valeriy & @Jora

[Valeriy]

Ruslan, hello. My name is Valery, I also have internal bright veins wedged between the awl process and the C1 transverse process on the left almost completely, on the right side of the last CT scan the distance is 1.5 mm. Now I’m looking for a doctor I can entrust with surgery. Can we call you?

[Jules]

@Valeriy, if you click on Ruslan’s avatar, it comes up with the option to send a private message to him, so you can communicate privately that way.

[Valeriy]

Unfortunately, when I click on Ruslan’s avatar, I don’t see the opportunity to write a personal message there.

[Isaiah_40_31]

@Valeriy - Welcome to our forum. Try clicking on the magnifying glass image in the top right of this page. When the search bar comes up, type Ruslan into it & click return. Three entries will appear. Click on the bottom one which just says Ruslan. A page should come up w/ a blue bar in it that says Message. Click on that & it will take you to where you can start a private message to him.

If that doesn’t work, maybe @Ruslan can start a private message with you.

[Jules]

@Ruslan , how are you doing now?

[Ruslan]

Hi everyone,

I’d like to share a post-operative update and ask if anyone has had a similar experience.

After surgery for Eagle syndrome, my jugular veins are now fully decompressed.
Post-operative imaging confirms that the internal jugular vein diameter at the surgical site is ~6 mm, so the venous outflow obstruction appears to be resolved.

Most symptoms related to venous compression have improved.
However, two issues remain:

1. Persistent neck pain (mostly cervical / muscular in character)

2. Ongoing tinnitus, which has not resolved despite successful venous decompression

Tinnitus characteristics

The tinnitus does not seem vascular or pulsatile. It is:

• a non-pulsatile, shushing / hissing noise

• often described as “radio-static” or broadband noise

• fluctuating in intensity, with a wave-like increase and decrease rather than a fixed tone

• worse in silence, in the morning, and during stress

• significantly reduced with external sound, movement, chewing, conversation, or distraction

Audiometry is largely unremarkable, and the tinnitus does not behave like a classic cochlear or purely somatic type. Clinically, it seems more consistent with a central / gain-related or neuroregulatory tinnitus, possibly triggered or maintained after prolonged venous compression.

My questions to the community:

• Has anyone had persistent tinnitus after confirmed jugular vein reopening?

• If so, did it improve over time, and on what timeline?

• Was your tinnitus later attributed to:

  • central nervous system changes or maladaptive gain?

  • residual effects of long-standing venous hypertension?

  • cervical or somatosensory factors?

  • autonomic / stress-related dysregulation?

At this stage, imaging suggests the vascular problem has been corrected, so I’m trying to understand why tinnitus can persist after successful Eagle syndrome surgery, and what approaches (neurology, rehabilitation, physiotherapy, medication, sound therapy, etc.) have helped others.

Any shared experiences or insights would be greatly appreciated.

Thank you.

[Chrickychricky]

@Ruslan I found this book very helpful: Rewiring Tinnitus: How I Finally Found Relief From the Ringing in My Ears Kindle Edition

by Glenn Schweitzer

[Jules]

I’m glad that your IJVs are decompressed and flowing better now!
Unfortunately tinnitus is one symptom which doesn’t seem to resolve very often with ES surgery, especially when it’s not pulsatile tinnitus from the IJV compression…
There have been a few discussions about tinnitus, here’s a couple of discussions which might be helpful:
Tinnitus - General - Living with Eagle
TINNITUS DRIVING ME CRAZY! Anyone else - General - Living with Eagle
I don’t know anything about all the different causes or types of tinnitus though; I’ve learnt something from your post!
Tinnitus does seem to be very common in the population, so I do wonder if it’s maybe not related to ES? Although quite a few members report that it started when their other ES symptoms did…

[Isaiah_40_31]

Great news that your IJVs are open & the one in the scan looks remarkably good! I’m sorry you’re still experiencing tinnitus. You suggested many possible causes (none of which I was aware of either), but logically it makes sense that what remains could be a function of residual effects of long-standing venous hypertension. I have learned from ES journey that it can take well beyond a year for nerves to heal & symptoms to subside so given more time, your tinnitus may reduce or disappear if it’s related to ES &/or your IJV compression/intracranial hypertension.

I’ve had tinnitus since I was a young child so my world has never been quiet, but I now have a chronic, loud tinnitus problem which onset in 2015 after a head injury. I’ve just looked into getting a hearing aid that makes a background sound which helps my brain defocus from the sound of the tinnitus.
Previously, a friend suggested sound therapy. She had me upload a sound wave generator on my phone & had me try to match the pitch of the tinnitus w/ the sound generator. I wore headphones that fit behind my ears to generate the sound through bone via my ear drums. Unfortunately, I didn’t stick w/ it long enough to see if it helped plus I was never able to match the pitch of my tinnitus to the extent I was satisfied. My friend is a Z Health Master Instructor - https://zhealtheducation.com.

[Emerald]

Hi Ruslan,

You may find this article useful in explaining the possible cause and thus the reason why you still have tinnitus.

Cerebral venous congestion alters CNS homeostatic plasticity, evoking tinnitus-like behavior

“a rat model of cerebral venous congestion exhibited tinnitus-like behavioral manifestations at 14 days postoperatively; from that point onward, they showed signs of persistent tinnitus without significant hearing impairment. Subsequent neuroimaging and neurochemical findings showed CNS homeostatic plasticity disturbance in rats with cerebral venous congestion, reflected in increased neural metabolic activity, ultrastructural synaptic changes, upregulated synaptic efficacy, reduced inhibitory synaptic transmission (due to GABA deficiency), and elevated expression of neuroplasticity-related proteins in central auditory and extra-auditory pathways.”

I should imagine that any changes in nerve synapses would take a particularly long time to return back to normal after internal jugular vein decompression surgery. Otherwise maybe improving neuroplasticity by regular exercise ?