What are the chances of permanent deficits?

General
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Hi, my name is Igor. I am originally from Poland but currently live in the Netherlands. I have been struggling with what seemed to be post-concussion syndrome following an assault. It is true that I initially had a concussion. It took me 10 years for my symptoms to resolve to the point where I could function close to my old level. The symptoms were severe cognitive issues that took a long time to improve, such as, fatigue aphasia, slowed processing speed, depression, anxiety, headaches, pressure on the top and side of my head, blurry vision, nausea, and severe sleep disturbances, among others. However, these symptoms were slowly resolving.

After about a year, I was 95% back to my original functioning. Then, I bumped the back of my head where it connects to my neck, and my deficits returned—not as severe as initially but still strong enough to cause trouble in daily functioning, especially with cognitively demanding tasks. I originally thought I had reconcussed myself or caused neck instability.

A few days ago, I started having swallowing difficulties. When I reached to the back of my mouth with my finger, I was shocked to feel a bony structure instead of the normal soft tissue. Since it was late and I had little access to my GP, I used ChatGPT, which suggested it might be Eagle syndrome. I then did some research and found your group.

I had an MRI with DWI technology done in the third or fourth month of what I thought was concussion recovery, and it showed no signs of lesions or deterioration. So, my symptoms don’t entirely align with a simple concussion, because they were improving over a prolonged period—much longer than typical for concussion.

The re-injury happened when I hit my neck trying to lie down on my bed (I know, kind of stupid of me). Since then, my symptoms have remained stable.
After re-injuring my neck, I immediately experienced nausea and balance issues—for example, I could no longer stand on one leg with my eyes closed, a simple test I used on myself. My cognition worsened again that day, but it improved after two weeks and then plateaued. The re-injury happened when I hit my neck trying to lie down on my bed (I know, kind of stupid of me). Since then, my symptoms have remained stable.

I did some neck work to see if I could trigger symptoms and, Eureka, I started getting nausea and headaches again. Since then, my symptoms have stayed the same.

What worries me is that my oxygen supply to the brain may have been limited for so long that it caused structural neural damage. I will ask my GP and push hard for a CT scan of my neck. But I want to ask you: have any of you had similar issues, and after the operation, did your symptoms—even if severe initially—resolve completely, especially cognitive ones?

For me, my high cognitive skills have always been a source of self-worth. I’ve been wondering if I will ever regain my old self and intellectual proficiency or if I will remain disabled for the rest of my life. I have already decided that if surgery is possible, I will undergo it without hesitation. An 80% chance of symptom resolution after one year of suffering and pain seems optimistic to me.

So, did any of you have moderate to severe cognitive symptoms and recover completely? What are the chances of permanent deficits and damage in my case?

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I had brain fog and fatigue with IJV compression, but only mildly, mine’s improved with surgery, I felt better straightaway after surgery but I think I was more lucky and others have taken longer to recover… Hopefully other members will chip in with their experience, but I think if you can get the blood flowing from the brain and resolve the high intracranial pressure then you should be able to improve your brain function… I hope that you can get a CT done soon!

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Thanks for fast reply, I begin to read about it and the operation, not going to lie I begin to get scared, so another issue that I may struggle for life with? I hope not. I am in the Netherlands so I don’t know if there even is a doctor that can operate relatively safely, and even if how long will scheduling take? Probably around a year. I thought it’s a relatively simple prossidure, but boy I was wrong. My ES stems from injury and it might complicate the issue even more.

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First, here is the only doctor we have on our list for The Netherlands:
•Professor H.A.M. (Henri) Marres, Prof. H.A.M. Marres (Henri) | Radboud University

He’s done successful ES surgery for at least one of our members.

A number of us think our ES was the result of a head neck or jaw injury. I had a significant whiplash injury that I expect contributed to my diagnosis. I’ve also had 2 traumatic brain injuries (TBI) from cycling accidents. The first occurred when I was 13 & included a skull fracture. Bike helmets didn’t exist back then. It may have been an early precursor to ES for me. My second occurred between my first two ES surgeries. I got IJV compression from the second head injury, but it wasn’t diagnosed for 8 years, however, my brain fog resolved after my second ES surgery to at least some degree.

I understand why you’re concerned about permanent memory impairment, but as @Jules said, I think if you have vascular compression in your neck from elongated styloids, once you get that fixed, you may regain most or all of your mental clarity. It could take some time though.

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You calmed me down a little bit there, thanks. for now it is almost certain that I will pursue the surgical route as I don’t like to play around with my symptoms to the end of my live. Do they prescribe blood thinners to improve the blood flow, or some similar interventions? Waiting for operations would probably take up to a year and I have education to finish. It would be hard with throbbing headache and brain fog. I also would like to cut them through external way (neck) rather than mouth, but like I say I have one stuck in my throat. I can feel him bulging it gives me quite a discomfort.

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Also my neck is killing me, he feels heavy i struggle to hold it in the air sometimes. should i be concerned about it or is it normal part of ES?

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Some doctors who do surgery for vES w/ IJV compression in the US prescribe a blood thinner for their patients w/ IJV compression to take during the time they’re waiting for surgery. For some people it practically takes away the brain fog & headaches but for others it doesn’t work as well. The blood thinners most often prescribed in the US are Plavix, Brillinta, & Xarelto. A blood thinner can take up to a month before it produces noticeable help w/ symptoms so taking it for at least that long is necessary. If it works, then it can be taken more long term up till a couple of weeks before surgery.

I believe Prof. Marres does his surgeries through the neck & even a styloid that can be felt in the throat is most successfully removed through the neck. Neck pain is a normal ES symptom, & the feeling of your head being heavy seems to be more related to the intracranial hypertension that occurs w/ IJV compression so it is also somewhat normal for vES patients.

Here is a link to a discussion where Dr. Marres is mentioned. It may be helpful for you to read it: Neck and back pain - #4 by Dodo

I’m sorry you’re having such terrible symptoms while trying to finish school. I can imagine that is terribly difficult. I hope you’re able to get an appointment w/ Prof Marres so you can be accurately diagnosed & receive the best possible treatment.

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I wonder what is the reason he hesitated about second removal. So how is the healing process like after? Is good recovery expected? I am also 23 years old so will the age work in my favour? I feel like I’ll ask about blood thinners if waiting que will be long, for the surgery I mean.

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I also wonder how much damage i have done alone my problem arose when doing neck manipulations. Since then i have neck stifness and pain which wasnt there before. I was doing the neck exircises to see if my post concussion syndrome was stemming from the c1 c2 instability, now i feel stupid for that. Also i heard in some poeple operations is not advised liek 7%? where does it come from is there a chance I am in that group?

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Also do you now what is the best way to hold your neck? Sorry for all the questions I learned about it recently feeling a bit nervous and lost lately.

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What helps one person doesn’t always help another, so don’t feel bad that you tried exercises to strengthen your neck. I was advised to do chin tuck exercises for a prolapsed disc C5-C6, it really helped me, but some members have been advised not to do this as it’s not good if you have IJV compression (which I did), who knew! One of our members has suggested neck exercises for military neck which many members have (when you’re neck straightens & loses it’s natural curve, here’s a link in case you’re interested:
List of my favourite resources on YouTube to learn anatomy - General - Living with Eagle
But certainly not a good idea to do any exercises if they make your pain worse…
Hopefully if you have surgery you will heal quicker because of your age! Recovery does vary quite a bit depending on the doctor’s technique, not just between external or intra-oral surgery , but even with external surgeries it can very. I didn’t find recovery too bad; eating is often a bit tricky for a week or 2 so we suggest getting smoothies or soft foods ready in case. Your neck will likely be stiff for a few weeks, & you’ll probably be tired. Recovery can often be a bit up & down, nerves can take months to heal, so nerve pain might improve slowly, patience is needed. Not many people wake up after surgery instantly healed! There’s lots of info and links in this section, or you can search the forum for post-op stories & what to expect:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
As long as the doctor is experienced, and they remove as much of the styloid as possible, the results are usually good. Sometimes with vascular ES, if the jugular vein has been compressed for a while it might need re-inflating with a balloon or stenting to re-open it properly. And quite often members when they’ve had one side removed find that the other side feels worse, so if you have styloids elongated both sides you may need 2 surgeries, not many doctors do both sides at once because there can be quite a bit of swelling…
Have you been diagnosed with CCI, or is it something you suspect?

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Hello Eazy,

I read your posts and i feel sorry for how you’re feeling.
The symptoms sound like Eagle syndrome, it’s important to get a CT scan to confirm. I also had to push the doctors to get there.
To answer your questions: i don’t know if you can get rid all of your symptoms, because i don’t know which are caused by ES, but i know you can recover from the physical symptoms. For example: i had bad nerve pain in my face, stiffness in the neck, and also very much pain in the neck and parts of my back. After surgery it was gone.

There are multiple doctors who do surgery. One is in Leiden, doctor Langeveld. I heard that he helped a lot of people. I don’t know if he’s available because when i needed surgery he was away from work for a while.
I also visited UMCG because there is a doctor who also does surgery. He didn’t agree with my ES and sent me away. He said that my styloids weren’t long enough (in surgery there will be made an incision in the neck and from there they will work up to the skull, so the distance was too big and would leave me with too much scar tissue, which wasn’t the case after my surgeries in Radboud hospital).
And then there is doctor Marres in Radboud Nijmegen, he did surgery many times before. It went well and i recovered. I think doctors are hesitant with these surgeries because of the risks. So if 1 surgery will help and the other isn’t necessary they don’t do the second. Because of my level of pain they also did the second.
I didn’t get any blood thinners or other medication before.

About the waiting lists i’m not sure. In my case, i visited Radboud for an intake in december, got surgeries in February and September. But it can take longer time.

I can imagine that you’re worrying about your neck and the pain. At some point i had the same struggles so at home i sometimes wore a neckbrace and that gave some relief.

I don’t know why 7% of people with ES don’t get surgery. Where did you hear it?
I also think that your age is a good thing because of recovery, but also it depends on your lifestyle. For example i didn’t smoke, eat healthy and sleep enough etc.

There is a Facebook group: Eagle syndroom Nederland. There are other people who had surgery and can share information. I also read more people who got surgery in Radboud hospital.

If you have more questions i will try to answer them.
Take care,
Dodo

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It’s something I suspect. Tomorrow I have an appointment with my GP to get a referral to an ENT. If I hadn’t done the exercises, I wouldn’t have discovered that I might have Eagle Syndrome. I’ve been experiencing nausea when I move my neck slightly, along with occasional gag reflexes. I avoid touching my neck because it feels unstable and painful since then.

I had a nerve injury on my lip long ago, so I know a bit about nerve healing. Are there any specific techniques I should be on the lookout for—either positive or negative? I’m not worried about temporary symptoms like difficulty eating. What really concerns me is the possibility of permanent damage, especially anything affecting the brain.

I’ve noticed a mild to moderate decline in my intellectual abilities—I’m slower and have difficulty focusing. As long as my old capabilities come back, I’m not worried in the slightest. I can handle pain; I’m tough. But permanent cognitive deficits would stop me from pursuing my dream career, which is relatively intellectually demanding.

Even having two surgeries wouldn’t be a big deal for me, as long as the first one brings some improvement.

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Why are doctors so hesitant? I’ve read that this surgery doesn’t that much risk (comparatively of course) than heart or lung surgeries and is a short procedure albeit very rare one. Langeveld did a lot of ES right? my first pick was Marres after I heard that he helped you with it. I will definitely visit the group on facebook thanks.

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I see. Hopefully you will get an appointment with an ENT.
About nerve healing i didn’t get any information, only that this is a symptom of ES and it dissapeared after surgery. The same as damage to the brain.
What i also noticed is being slower and not feeling clear in the head, maybe because of the brain fog.
The hesitance about surgery is because of the chance to touch a nerve, like the facial nerve or tongue nerve. In some cases it will cause permanent paralysis if this happens.
Also in the area of surgery there is the carotic artery and because the doctors are working in a small area in the neck (maybe a few milimeters from this artery sometimes the styloid even touches or presses the artery). So yeah there are risks. Maybe the same amount as lung- and heartsurgeries, but in the end we aren’t surgeons and this will be explained if you get an ES diagnosis and a surgeon will treat you. But it’s not without a reason the doctors are hesitant.
About a referal to a surgeon there is not always a choice so that’s someting to take into account.

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So Dr Langeveld is my best possible option?

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That’s not what I said, and i advice you to read properly.

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@Eazy - @Dodo said there are different options for ES doctors in your country. She also mentioned that when you ask for a referral you may not be able to choose which of the doctors you get to see, however, it is good to request particular doctors you would like to see. It sounds like Dr. Marres or Dr. Langeveld would be good options, so seeing either one should be helpful for you.

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Yes I know, maybe I did not made myself clear enough. I was asking IF there would be a chance to pick my own surgeon which is the most experienced one in the Netherlands dealing with the eagle syndrome.

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