Need help

[Jete]

Hi there.

I have been diagnosed with Eagle syndrome and have been suffering from symptoms for approximately 1.5 years.

I have consulted the only ENT surgeon in my country (Latvia) who performs surgery for this condition four times. However, he refused to operate and told me that my case is “not severe enough yet.” He also stated that Eagle syndrome cannot cause symptoms such as dizziness, ear pressure, ear pain, tinnitus, pulsatile (“whooshing”) tinnitus, and that it only causes pain.

Unfortunately, my symptoms have continued to progress. The pain is now severe. I have difficulty swallowing, even water, and I often choke on food. I experience daily headaches. Raising my voice or speaking loudly causes pain. I constantly feel as if something is stuck in my throat. I have to move my head very carefully to avoid triggering severe pain. Sometimes I wake up screaming at night because of the pain.

No 3D reconstruction was performed locally, so I had to send my CT images to a clinic abroad, where a 3D reconstruction was created and they confirmed Eagle syndrome.

I understand that Eagle syndrome is a rare condition and that many doctors have limited experience with it. Because of this, I am trying to find a specialist or clinic in Europe that regularly treats complex Eagle syndrome cases, including cases with possible vascular involvement and, if necessary, performs decompression surgery.

Due to my symptoms, travelling is very difficult. I currently cannot fly and can only travel by car while lying down because prolonged sitting significantly worsens my symptoms (possibly due to neck positioning, vascular compression, or muscle tension).

I also have a suspected CSF leak, but that is a separate medical issue currently being investigated.

My main question is:
Where in Europe can I find a clinic or surgeon experienced with Eagle syndrome that accepts patients through the S2 planned healthcare route? If Latvia is unable to provide appropriate treatment, I would like to apply for cross-border healthcare.

I am especially interested in specialists who:

• regularly treat Eagle syndrome;
• understand both classic and vascular presentations;
• evaluate jugular vein or vascular compression when present;
• perform styloidectomy and, when necessary, decompression surgery.

I have attached my 3D reconstruction images for review.

[Jules]

I’m sorry that you’ve been dismissed when you’re obviously having bad symptoms of ES!
It does sound as if you could have IJV compression from your symptoms, but as your doctor doesn’t understand this, you could try sending him some of the research papers about vascular ES that we have on here, but it might not make a difference as some doctors will still ignore these… We can’t say for sure though if you have IJV compression without a CT with contrast being done, timed to show the veins, is it at all possible to have this done in Latvia? It would be very helpful as for some members it’s not just the styloid processes which are causing compression, but the C1 processes as well (or mostly ). It does look from your images you’ve posted that there is a reasonable gap between the styloids and the C1 processes, but it’s not possible to say for sure…

@Jete

I also have a suspected CSF leak, but that is a separate medical issue currently being investigated.

If you do have IJV compression, then it could well be that the increased head pressure that this causes has caused a CSF leak, lots of members have had this, so it’s worth bearing in mind if you do get to see a neurologist for this, perhaps this could be a way of getting the CT with contrast done?
With regard to doctors doing ES surgery with IJV compression, unfortunately most of our members who have vascular es either have consultations and surgery with Dr Aghayev in Turkey, or Mr Axon in England, but I would presume neither would accept cross border health care funding…
There are doctors in other European countries who have done ES surgeries-
Dr Henrik Stenwig Li, Rikshospitalet, Oslo , Norway,
Dr. Nils Heim and Dr. Markus Martini in Germany
Dr. Thierry Ladner in Belgium
Professor Sherif Sultan in Ireland
Professor H.A.M. (Henri) Marres in The Netherlands
and Dr. Jakub Bargiel in Poland have all been mentioned on the forum, and others in Europe especially Italy, but I don’t think any of these are that aware of Vascular ES and certainly none of them would do a C1 shave if this is needed.
Here’s a link to the full Doctors List:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
I’m sorry that we can’t be more helpful with supplying doctors names

[Isaiah_40_31]

@Jete - I’ve annotated one of the images of your left styloid. In the only picture of the right styloid, the styloid is mostly hidden behind C1 (images furthest to the left) so I can’t comment on it. If you have any 3D pictures of the right styloid that are like the one I’ve annotated below, please post one or two & I will let you know what I see.

In the image below, I agree w/ @Jules that it looks like there’s good space between your styloid & C1, however, that doesn’t mean you don’t have IJV compression. As Jules said, you’d need a CT scan w/ contrast so we can see your IJVs (internal jugular veins) & ICAs (internal carotid arteries) to help decide if you might have vascular compression. Your symptoms certainly point to it.

I also find it unbelievable that the surgeon in your country says your symptoms aren’t bad enough. I’m sorry he’s ignorant about ES being able to cause dizziness, headaches & pulsatile tinnitus. It sounds like he’s possibly not the best surgeon to do your surgery as he might not do vascular decompression if needed, but only a styloidectomy.