I want surgery, but how and who?

General
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Kindly share your opinions and relevant experiences.

In December of 2022 I had neck and head traumas, and I have been suffering since. Currently, my right styloid process measures 6.36 centimetres. I have been cleared for CCI/AAI and TOS and had the very best of concussion rehabilitative care available in the world. Also, I have had – I bet – every scan you could imagine, only to identify the right styloid process elongation with no apparent vascular compression (CTA of 2023 and vascular MRI study of 2025). Furthermore, my symptoms do not match those of post concussion (anymore), and the providers agree (referring to my fMRIs).

So currently, I have transoral partial styloid resection scheduled for November 12th. For this procedure, tonsillectomy is done at first to expose the styloid. As scheduled, this will be done by an ENT surgeon in my home country (in Scandinavia). I have confidence in the surgeon’s abilities, and I have talked to a former patient of his – with symptoms and history very similar to mine – who it seems he cured entirely with this procedure. In my case, he claims to be able to remove 3 - 4 centimetres. However, he does not admit to know of all the symptoms that Eagle Syndrome can cause in addition to localised throat pain. He does not admit to know of the “vascular” versus “classic” classification either. He is sceptical that surgery will help me much, since I only rarely have local throat pain, but being able to clearly palpate the right styloid – and since I have very diligently sought other diagnoses and solutions – he thinks we should try the resection to see if it helps. This implies – of course – that he assumes very minimal risk associated with the procedure. Finally, he insists that the transoral route is the least risky and least invasive, also claiming that we are not supposed to have no styloid process at all and that it will not grow back. This is the case even though his countrywomen and countrymen published a great literature review study ( Neurological phenotypes and treatment outcomes in Eagle syndrome: systematic review and meta-analysis [PeerJ] ) a year ago, proposing that Eagle Syndrome is underdiagnosed, that it can be caused by trauma, that it has vast neurological and vascular consequences, and that for the transoral route, ’visualization may be poorer and the risk of causing damage to the adjacent neurovascular structures is increased’ compared to the transcervical route. I have mentioned this study for him, and he was definitely interested but apparently unaware.

In decreasing priority, my main symptoms are

  • facial pain, pressure and spasms, around the nose and the eyes, right-sided mostly;
  • distorted vision;
  • neck-pain, right-sided;
  • rhomboid/levator scapula-area pain and spasms; right-sided (spinal accessory nerve, I think);
  • dizziness.
  • …

And yes, right-sided peculiar things are happening in the tongue, mouth, ear and jaw too, but I categorize them as tells rather than high-priority symptoms.

Also, evoked potentials (motor and somatosensory) shows a mild neurological deficit in my left lower extremity which has not been explained by any scan. I think right-sided vascular deficit in the brain, caused by the right-sided styloid process elongation, can explain it, as supported by the mentioned study.

Personally, I am convinced the styloid elongation is detrimental to my health and I want surgery for it.

But should I seek an online second opinion before proceeding with what has been scheduled? And should I share this action with the currently scheduled surgeon (to ask for postponing the procedure with him)? If so, I would go for Dr. Bargiel ( Outcomes of Elongated Styloid Process Syndrome Treated with Minimally Invasive Cervical Styloidectomy (MICS)-A Single-Center Retrospective Study - PubMed ) in Poland. I like the philosophy that we should keep the part of the styloid that is not elongated (or problematic), but I do not think the scheduled surgeon wants to speculate whether the non-elongated part is also problematic. I think Dr. Bargiel might offer an opinion on that. I believe that with the currently scheduled surgeon, the transoral approach is indeed the best choice (not wanting him to do something he is not familiar with), and I am considering having this done first to consider afterwards if I should get a transcervical procedure as well. But I am concerned that other surgeons will not want to operate again, seeing as the length may be normal at that point in time.

It might be relevant that the currently scheduled surgery is free (per public health care), and I would have to pay out-of-pocket to get surgery in another country. I can afford it (with Dr. Bargiel) by means of a small insurance pay-out I have saved from the accident. But currently, I am working only 7.5 hours a week and receiving disability compensation to support my living, so the situation is volatile. I just do not want to regret doing something that was easier at the time if it turns out to be suboptimal, and choosing a surgeon that is sceptical he can help me – as opposed to one who likely believes he can – does not sit right with me.

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It’s a difficult decision and I think you’re very sensible to consider the options so carefully…
Have you read the info about symptoms, especially vascular ones? You mention dizziness, do you have any off balance feelings, head pressure, fullness in your ears, pulsatile tinnitus for example? The CTA, unless it was timed to show the venous phase as well , wouldn’t show if there’s any compression of the IJVs, so if you did have VES symptoms that’s something to consider, as if there was IJV compression then the styloid would probably need to be removed close to the skull base…
Members have had very good results with intra-oral surgery, especially if it’s nerve related symptoms, but you’re right that generally external surgery is less risky, gives better visibility, and is less likely to get infected. It’s also more painful to recover from, but as long as the surgeon can remove lots of the styloid & keeps the end smooth, then it can work. Your styloid though at 6cms is very long, so if he was to remove only 3cms that could still leave 3.5 cms , which might not be short enough to help? Lots of doctors aren’t very aware of all the possible ES symptoms, & no doctor will guarantee that surgery will help all of them, so I wouldn’t be too worried about that.
We do have a list of questions you could ask if you haven’t already:

  1. How many ES surgeries have they done and what was the success rate?
  2. Whether they’re going to operate externally, or intraoral- through the mouth. Whilst some members have had successful surgeries with intraoral, external is better for seeing all the structures, to be able to remove more of the styloids, & also there’s less chance of infection.
  3. You need to ask how much of the styloid he’ll remove- as much as possible is best- & anything left needs to be smoothed off. The piece needs to be removed too- some doctors have snapped it off & left it in! If the styloid is only shortened a bit it can still cause symptoms.
  4. If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
  5. There’s usually swelling after surgery; you could ask if a drain’s put in to reduce swelling, or if steroids are prescribed. It’s not essential, but can help with recovery a bit.
  6. Will it be a day case surgery or will you need to stay in?
  7. Obviously ask the risks- we know from experience on here that temporary damage to the facial nerve is quite common, and also the hypoglossal nerve and the accessory nerve. These usually recovery very quickly but in some cases members have needed physiotherapy. There is also the risk of catching a blood vessel or having a stroke, but these are very rare.
  8. Ask if the surgeon monitors the nerves- this should be done to see if there’s stress on the nerves to avoid damage as mentioned above.
  9. What painkillers will be prescribed afterwards.
  10. Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
  11. We have heard that occasionally doctors use surgical clips which are left in, it’s been suggested that these could interfere with chiropractic adjustments if needed post-surgery, so something to consider, and also we have now seen members who’ve been left in pain from the clips and needed further surgery to remove them, so do ask if they might be used.
    Obviously finances have to be taken into account, and the difficulties with travelling to another country, but perhaps it would help to have a consultation with Dr Bargiel at least, and then see what he says, and how confident you feel with either doctor?
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@steff.hans - Leaving as much styloid as your surgeon is suggesting is really not necessary & could be detrimental as @Jules noted. The 3 small muscles & 2 ligaments that are attached to the styloids mostly help in a small way with swallowing & are truly not missed when they’re gone. We have a large number of members who have had their styloids cut back to 1-2mm stubs which has allowed their symptoms to recover & hasn’t caused any ongoing physical trouble.

We recommend getting a second opinion when considering surgery because having two different doctors’ perspectives can be valuable in helping inform you of different ways the surgery can be done which allows you to choose the approach that seems best to you.

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Thanks @Isaiah_40_31 and @Jules! I will post about my choices and experiences.

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