Hi everyone! First and foremost, I must tell you that this forum has truly been a God send for me! After 9 years of going undiagnosed with debilitating symptoms I was finally diagnosed with ES this past April. Finding out what is causing my symptoms, and finding a group of others who know and have gone through this, is an absolute miracle for me!
I am a very grateful patient of Dr. Hepworth’s and will forever be thankful for him taking the time to look into my entire situation and help me find answers. Dr. Hepworth suggested that I have a venogram performed to check for jugular compression. I had the venogram performed 1 week ago with Dr. Hui and answers were found! Both my left and right jugular veins are being severely compressed and even collapse when I turn my head in certain positions. My body has developed collateral veins to try and help the blood get from my brain to my heart quicker.
Now I know exactly what is taking place, its just a matter of what I do now to hopefully fix it. Dr. Hui has stated that my compression is happening between my C1 vertebrae and the styloid processes so this makes the ES surgery more difficult. Dr. Hui said that Dr. Hepworth does not deal with the C1 compression. This devastates me as I want Dr. Hepworth to be my surgeon. I plan to see Dr. Hepworth soon to go over all the ultrasound and venogram findings.
Have any of you found that you have IJV compression due to both your styloid processes and C1 vertebrae?
Who do you plan to see ( or have seen) for this condition?
*Have you found anything that helps your symptoms? My most debilitating symptoms are the daily pressure headaches and vertigo.
I apologize for the long post, but would be so grateful for any feedback! Thank you again!
Thank you for your update. I’m so glad to hear that you have confirmation of the major cause of your symptoms - IJV compression, but am sorry it’s a bit of a complicated case.
We have quite a number of members who have/had C-1/styloid compression. In some of the cases, getting the styloid removed was all that was needed to end the compression but in others, the C-1 needed to be shaved down or otherwise modified to allow more room for the jugular vein. There are very few surgeons in the US who do the C-1 surgery. TheDude sent us link to a YouTube video of a C-1 surgery that was done by a neurologist in Arizona. He went in expecting to remove the styloid but found the problem was compression by a nerve & the C-1. Barrow Neurological Institute would be a place you could try contacting if Dr. Hepworth feels he can’t be of help.
Thank you for your quick response, Isaiah! I really appreciate you taking the time to help me. I am so relieved to know where my symptoms are coming from, but also so nervous about whether or not my symptoms can improve. I really hope that others on this forum who have have/had C-1/Styloid compression will chime in with any insight and advice. Thank you for the video! I hope you are well!
So sorry that things aren’t simple for you…it is difficult to know whether just removing the styloid would be enough; there are quite a few research papers which members have posted on here about IJV compression as well, although they mention more about styloid removal & stenting at the same time being successful, not so much on C1 compression.
I was lucky & just had compression with the styloids, so surgery made a massive difference for me. The best advice I can give you for now (sorry if I’m repeating myself?!) is to sleep half upright which helps the pressure overnight, & if possible avoid stress (!!), exercise & heat!
Hopefully the advice on medications on the other discussion will be useful re meds which might help you.
Thanks for reaching out, Jules! I wish it was strictly my styloids causing the compression. I am trying to be hopeful that I can still hopefully get better. Honestly, I’m scared. I hope others who have had C-1 involvement will be willing to chime in and give me any positive advice. I see Dr. Hepworth next week to see what he says about the ultrasound and venogram findings. I’m just really praying that this can get better and that there are better days ahead for me. I am scared, but also so glad to know what has been causing all my symptoms. I will try looking up the research papers on here about IJV compression. Thank you for that suggestion! Getting the wedge pillow has been a God send this summer! It was how I knew I had jugular compression before ever getting the test results! I would appreciate any other words of wisdom if you come across other posts etc. dealing with C-1/Styloid compression. Thank you again for all your help! I hope you have a great weekend!