Substantial symptom relief after TOS surgery, but worsening Eagle syndrome symptoms?

[Bowser]

So I’ve basically had what I called ME/CFS for about 7 years, my main symptoms being brain fog and fatigue.

About 3 years ago I was first diagnosed with TOS by Kjetil Larsen. My TOS symptoms became more obvious over the course of the last 3 years (with very tight scalene muscles, brain fog and headache, and pain while raising arms) and in May 2023, I finally had TOS surgery with Dr. Kamran Aghayev in Istanbul.

Dr. Kamran is an excellent surgeon and a very kind human being. He also had invented a unique surgical method for TOS called the PURE technique (via the upper back), which is significantly safer and has better outcomes than the transaxillary technique (via the armpit) used by other TOS surgeons. This is what prompted me to choose him.

I had quite substantial symptom relief immediately after the surgery. My brain fog was significantly reduced, I had noticeably less fatigue, and rotation and extension of the neck became significantly easier. I could do activities like swimming which was basically impossible before surgery.

This improvement continued for about four months after surgery. Around the fourth month, I would say I had recovered 50% normal function and was closer to getting back to a normal life.

But it is now 7 months after surgery, and over the last 3 months, it seems that the symptoms of Eagle syndrome have gotten worse and worse.

My main symptoms right now are significantly worsened brain fog, pain/stiffness in the back of the neck (trapezius, levator scapulae muscles), excessive bloating/moderate gastroparesis. Neck pain, headache and brain fog rapidly increase with flexion of the neck.

These new symptoms have resulted in me going back to about 10-20% normal function, and resuming a normal life seems unlikely until the ES is resolved.

My TOS surgeon was in fact the one to (incidentally) first diagnose me with Eagle syndrome. Before this I wasn’t even aware that I had Eagle syndrome.

It is worth noting that the brain fog/headache that I feel right now feels different from the particular kind of headache that I had with TOS. The TOS headache was a constant feeling of severe pressure throughout the entire head, but the ES headache is localised to the top and back of the head and the forehead.

The neck pain is also different. The TOS neck pain was primarily due to tight scalene muscles and was triggered by rotation and extension of the neck. The ES neck pain is in the trapezius and levator muscles and is triggered by flexion of the neck.

It is unclear why the Eagle syndrome symptoms are getting worse now. It was my original supposition that TOS was responsible for the majority of my symptoms, and indeed the immediate symptom relief and continuous improvement in the first few months after TOS surgery initially seemed to suggest that.

My surgeon has suggested that I wait at least 18 months to fully recover from TOS surgery (which indeed was a quite invasive and complex surgery despite the successful outcome), before considering ES surgery. But it is a long time to wait! I am unsure of how the symptoms will progress over this time.

Here are pictures of my styloids. I am not sure how to measure how long they are.

[Jules]

Wow, they’re very long, way longer than the average! It’s not hard to imagine that they’re causing symptoms…it sounds as if the pain in your head could possibly be caused by nerves, the Trigeminal nerves & the Facial nerve are commonly affected by the styloids; have you tried any of the nerve pain meds like Gabapentin or Amitriptyline? There’s more info in the Newbies Guide Section about treatments. Some members have been helped by a steroid/ lidocaine injection which can be done in the tonsillar area guided by ultrasound, it doesn’t always work but might be worth a try while you wait for surgery?
Very frustrating for you having seen big improvements after your TOS surgery to now go backwards. We often see with ES when people have one side done the other side flares up more, maybe the first side masked symptoms, & perhaps that’s what’s happened for you? I don’t really know much about the TOS surgery, but maybe in relaxing the scalene muscles following your surgery, your posture has shifted slightly & that’s enough to alter the angle of the styloids & bring them into contact with nerves? I found when I had a prolapsed disc C5-C6 that I started getting vascular symptoms, that very small shift in my neck I presume was enough to alter the angle of the styloids & increase symptoms…
Maybe your surgeon will change his mind (is he an ES surgeon too?) about how long you should wait?

[Isaiah_40_31]

@Bowser - I’m glad you found a great surgeon to do your TOS surgery. Thank you for the info on a new & better approach to that.

I totally agree w/ @ Jules. Those are some long, nasty spikes in your neck. I think her reasoning makes sense as well - that your TOS symptoms were either masking ES symptoms or that getting resolution to the TOS did cause a slight change in posture or cervical vertebral alignment that has brought your styloids into greater contact w/ the nerves in your neck

The current neck & shoulder pain is most likely because your styloids are irritating your spinal accessory nerves. The digestive issues can be a symptom of an irritated vagus nerve.

In the U.S., the old standard for the spacing between ES surgeries in bilateral cases was 6 mos. That has now been reduced to 3 mos. I don’t know how much more invasive, extensive or serious TOS surgery is than ES surgery, but I would think 6-12 mos would give you plenty of recovery time from TOS surgery prior to having ES surgery especially with how bad your symptoms are.

If your TOS surgeon doesn’t do ES surgery, have you found someone you like who does?

[Bowser]

Thank you for the replies. @Isaiah_40_31 @Jules The hypothesis about the TOS masking ES symptoms does seem rather possible. I had a poor experience with nerve pain meds like amitriptyline when I had TOS as they increased my drowsiness and brain fog, but they might be worth trying again. I do take a very small dose of Diamox (125mg/day), which marginally reduces the pressure symptoms.

Keeping my neck in extension also seems to help somewhat, and neck flexion rapidly increases symptoms. I have a rapid increase in neck pain, headache and brain fog during neck flexion when looking down at a laptop or phone for example, so I have to be sure to be looking at it straight. But one interesting improvement from TOS surgery is that I actually experience relatively little neck pain while swimming, since this mainly involves extension and rotation of the neck.

My TOS surgeon will most likely be the one to do my ES surgery as well. Considering the worsening symptoms it is hopefully likely he might reconsider doing the surgery at 12 months postop from TOS surgery.

How much would you guess the length of the styloids are in the picture? I measured the length of the styloids using Horos and it came to about 4.8cm, which doesn’t seem that much above average, but perhaps this measurement is inaccurate somehow.

Also it is unclear to me how much the C1 may be involved and whether a C1 shave will be necessary as well. Need to discuss with surgeon.

[Jules]

The average styloid length does seem to vary between doctors, but 2.5cms seems to be the most common assessment, so yours look way longer than that…it’s not easy to get an accurate measurement from CT scans as they’re done in slices, members have often found that doctors report their styloids as being longer than were measured on their CT report when they have surgery!

[jimjammer123]

Hi @Bowser ,

Thanks for sharing your story. What an emotional rollercoaster this experience must of been for you after having such impressive symptom relief originally from the TOS surgery!

As @Jules has said it does seem highly plausible that because of the scalene muscles producing less pulling forces post surgery, it possibly shifted the soft tissues in your neck around a bit, which seems of contributed to a combination of cranial nerve irritation and cerebral venous congestion. I suspect that because other muscles in your neck have had to take up more of the workload, their increased tonus has made the carotid space and cranial nerves innervating through them now have less wiggle room to function without being irritated, especially when the musculature workload/tension in this area is increased further from being in certain head/neck positions.

Without knowing how your symptoms started or how gradual or sudden the onset was for you, I’m thinking perhaps the eagles syndrome was indeed the underlying original problem. And that your scalenes slowly but surely took up more of the workload to compensate for your neck going into spasm from the eagles, which then gradually led to TOS symptoms manifesting.

I think it would definitely be worth asking Dr Kamran about the possibility of having the surgery after 9-12 months.

I’d just like to lastly say that I was the redditor you were speaking with who recommended you check out Dr Kamran in the first place! It’d be great to catch up over PM if you’re up for that? As it does seem we’re walking a very similar path with all this.

[Isaiah_40_31]

Great expansion on @Jules ’ explanation, @jimjammer123. Thank you!!

[Bowser]

Hey @jimjammer123. Wow, nice to see you here! I’ve sent you a PM!

I think your theory of Eagle syndrome being the actual underlying problem sounds quite plausible. Even before I had the symptoms that I’m feeling now, I have for years felt tightness in the trapezius and levator scapulae muscles in addition to the scalene muscles. I suspect the tightness/stiffness of the entire neck musculature was being caused by Eagle syndrome.

I find this theory especially more plausible since my TOS symptoms were almost entirely scalenogenic, not costoclavicular. In other words, I felt that the majority of the compression was due to the tight scalene muscles compressing the thoracic outlet, and not due to compression by first rib.

I did have many classic indications of TOS such as very severe pain in my arms while raising them above my head, a lot of neck pain and stiffness in the scalene muscles, and neuropathy in my hands. But I did not have a lot of pain in a more general sense, nor did I even have much pain while lifting a weight, at least excluding the immediate year before surgery when the TOS had grown more severe. This leads me to believe that the large majority of the compression was caused by the scalene muscles, and the first rib had relatively little involvement.

So if tight scalene muscles is the root of the problem then Eagle syndrome might very well have been the cause of that.

[Bowser]

Some updates and questions.

First, despite full remission not being achieved with the TOS surgery, it certainly reduced head pressure substantially. Not only do I feel this subjectively, but you can clearly see this in the fundus exams done preop (left) and postop (right). Note the substantial reduction in white patches or cotton wool spots, and what seems to me to be a normalization in the shape of the fundus. The same can be seen in the left eye, but I have posted only the right eye.

Here is my right carotid artery. You can see that the carotid artery is kinked, it goes on a little loop, up, down and then up. Kjetil Larsen explained this kinking as being caused by excess arterial inflow due to TOS. This is the preop image, I don’t have the postop scan on hand right now, so I am unsure if it has normalized.

This is an old MRV from 2019. At the time, this was deemed as normal. Left jugular vein is completely non functional, either due to transverse sinus stenosis or due to compression between styloid and C1 (which is much narrower than the right side). Right jugular vein is deemed as normal, but may not be.

I looked at the right jugular vein on my preop CTA and the width seems less than normal, but not excessively narrowed either, and it seems to be obstructed more by the C1 than the styloid. Unsure how much my amateurish analysis is accurate.

EDIT: I looked at this scan more – since this is a CTA the carotid arteries are much more clearly visible compared to the jugular veins which are very blurry. So I am skeptical of the following measurement I made previously.

Perhaps due to the completely non functioning left jugular vein, this width on the right side may be enough to cause symptoms. Or it have narrowed further in the months after surgery. Also unsure if my styloid process is possibly compressing my carotid artery?

With the lack of a postop contrast CTA, unable to arrive at more definitive answers.

If anyone more experienced with looking at scans wants to look at my DICOM files, I would be happy to send them over PM. The help would be greatly appreciated!

[Bowser]

So despite my very long styloids, it seems the width between styloid and C1 on my right side (dominant vein) doesn’t seem that bad (but FWIW, the left side is very narrow). This explains why the diagnosis of TOS was prioritized over Eagle syndrome at the time.

But contrarily many of my current symptoms which have had rapid onset over the past few months (gastroparesis, neck pain severely worsened by flexion, facial pain, brain fog) seem to strongly suggest a diagnosis of Eagle syndrome.

Perhaps the space has narrowed further after TOS surgery by the mechanism described in previous posts.

Ultimately, I guess an ultrasound, dynamic catheter venogram and dynamic CT venogram are the best ways to more accurately diagnose whether significant cerebral venous outflow obstruction is happening, and I intend to get that done before Eagle syndrome surgery and possible C1 resection.

The styloid is almost certainly affecting the vagus nerve and facial nerve, considering my symptoms. Could it also be interfering with the carotid artery somehow? Unsure.

[Jules]

I’m not knowledgeable to comment on your scans, but if you’re able to I’d sat definitely a good idea to get extra testing done before you have any more surgery…