So basically I have been recently diagnosed as being born with Eagles syndrome, I am 54,and experiencing such severe symptoms that have consistently treated as Migraine..
I recently had a private MRV which has shown. bilateral ES, I’m currently 3 weeks of being in hospital, a. MDT has been cancelled 3 times.. I also have a blood clot in left side jugular vein.. My local hospital are at this moment giving me pain relief, which barely works, and they are looking to discharge me with pain management..
I had a private MRV.. Which has finally confirmed ES..
I’m sorry that you’ve been misdiagnosed for so long! And that you have a blood clot- it is rare but has happened when the IJV is compressed with the styloids. Have you been prescribed a blood thinner medication? This can help with the symptoms of IJV compression, quite a few members have been prescribed this to help with symptoms even without blood clots.
If you’re able to continue with private treatment, I would see if you can get a consultation with Mr Axon in Cambridge, he is the most experienced surgeon that we know of in the UK treating Vascular ES & IJV compression - he does online consults but might want you to have a CTV. He does also work on the NHS at Addenbrooks hospital in Cambridge, but the waiting times are quite long…
With this surgery it’s important to see someone with experience, as if the styloid processes are just shortened and not removed right up close to the skull base, it might not be enough to remove the compression and you could still have symptoms.
I hope that you’re able to get some help soon, here’s a link:
@Denise18 - Welcome! I’m sorry for the length of time you’ve had your symptoms. I think @Jules has made a good suggestion regarding taking a blood thinner. If that is not among the meds you’ve been prescribed, it should be especially with a blood clot in your IJV. I think it would be dangerous for the hospital to discharg you with only pain medication. Self advocation is very important with problems like ES (I’m so glad you’ve finally been diagnosed!).
Here’s a link to information about how to be your own best medical advocate:
Thank you so much I’m still in hospital, it’s been 23 days since I provided my local hospital with the private scan report.
They put me on blood thinners for 10 days then took me off them
I’m not a doctor, but I can tell you that taking a blood thinner over the long term has helped a number of our members have reduced head pressure & headaches prior to decompression surgery when they had IJV compression, and that’s without having a blood clot. I would think it critical for you to stay on a blood thinner until the doctors know your blood clot has dissolved and also to help reduce your IJV compression symptoms.
The blood thinners that have been mentioned most often here are Brilinta, Plavix, & Xarelto, but I know there are others. Acetazolamide has also been suggested to help reduce head pressure, but I’m not sure if that’s safe to take w/ a blood clot.
The doctors are saying because the blood has been there for nearly 3 years, and my private scan only saw it in July..
They put me on blood thinning injections for about 10days,then a doctor a doctor said because I didn’t have blood thinners for all that time then it is perfectly fine to stop blood thinning..
I can see that point, but it can help with the other symptoms of IJV compression as @Isaiah_40_31 says. Some members have taken aspirin instead of the meds mentioned…
@Denise18 - It seems odd that they’d only put you on a blood thinner for 10 days. I’d think they’d schedule you for another scan after you’ve been on it for that time to see if the clot is dissolving.
I am not a doctor but I think perhaps taking an 81 mg aspirin nightly, after you stop the blood thinner injections, would be a safe way to keep your blood a bit thinner to help prevent another clot & help your symptoms to calm down a little. You should ask your doctor before starting on aspirin ,but it is an inexpensive way to thin the blood a bit.
I’ve taken a daily aspirin for years because my PCP recommended it due to heart disease running in my family. The only side effect I get is when I get a little cut, it bleeds more than it would if I wasn’t taking the aspirin.
Oh thank you for your reply, yes I agree it’s strange that they decided it was OK to stop the blood thinning.. Purely based on oh well she hasn’t had to have them for years so let’s just stop.. They did do another scan and have said the clot hasn’t moved or got bigger.. I’m like I have a private consultation booked soon as it’s perfectly the NHS are not going to help me now I’ve finally found evidence of misdiagnoses of Migraine for 40 years the most they are going to do is pain management..
My whole life I’ve begged and cried for help and no one would listen..
When I was put on the Migraine bus it proved impossible to get off it..
The neurology team need to hang their heads in shame after decades of suffering.. Soon I hope that my private consultation will lead to hopefully surgery to at least get some form of my life back..
I completely agree with you regarding the neurology team. I also hope your private consult will lead to positively life changing surgery for you! I hope you’re able to see Mr. Axon for surgery since he is soooo experienced with doing the surgery you most likely need.
Thank you so much, my appointment with Mr Axon is very soon, if he can’t help me then I’m certainly in big trouble as NHS are focused purely on pain management ..
I’m still in hospital, it’s been 23 days since I provided my local hospital with the private scan report.
They did do another scan and have said the clot hasn’t moved or got bigger.. I’m like 
I have a private consultation booked soon as it’s perfectly the NHS are not going to help me now I’ve finally found evidence of misdiagnoses of Migraine for 40 years 
the most they are going to do is pain management..
