@retrorock I’ve recently have had some mind boggling encounters. I think you could benefit from them. I was sent to a physiologist. He had a terrible bedside manner LOL, but out of exasperation he put me on muscle relaxants and prescribed a masseuse that has the extra credentials of doing interoral work. I’ve had a life that’s sort of a human being version of an old ‘Timex’ watch commercial. I’ve “taken a licking, but I keep on ticking” LOL I started writing abig band chart with that title before the Eagle Syndrome journey. The masseuse I’ve been sent to, has been telling me my life’s injury story. Stuff I’ve never written into my med files because the other stuff was already filling the page LOL.
He would ask, “So how many times have you broken your tail bone and when was the last time?” Ummm I think at least three times and the last time of 2011. So he then works on me with that knowledge. Last appointment he asks, “So tell me about your chin, it took a whallop once, what happened?”.
I was 8 when I sustained that injury.
I think you could benefit greatly from a masseuse that works for a physiologist. They keep better track of the “how” and “when” of things and connect their knowledge in a way that will benefit you. He also massaged under my tongue which helped a great deal.
Hi everyone,
Been a while since my last update and a lot has happened.
I just got home from having me left styloid removed, so that is both done now!
2 weeks ago an interventional radiologist ballooned out my right IJV as it was still compressed. Turns out my C1 vertebrae is thicker than most people, so this and fibrous tissue is still going to cause compression after styloid removal! Talk about ongoing dramas!
The ballooning helped, and the plan is to see how I go now. If need be we can put some stents in, but they do not want to use metal ones due to the fact that I am relatively young (35) and the possibility of metal fatigue closing the veins. Apparently there are some non-metallic stents available that they might use.
My symptoms have improved a lot. I have been placed on anti-anxiety meds which has taken the panic away and I can cope a lot better, although in a seperate issue my GP thinks I may have testicular or liver cancer so 2017 has not been great. Just praying and taking it one day at a time!
Which test/scanfinally confirmed jugular compression?
I’m glad that things are improving for you with the styloid removal and stent, hope that you carry on healing well.
But sorry to hear about the cancer- that must be really worrying so hope that you hear better news about that- best wishes and I’ll be praying for you.
Let’s hope not. Best wishes for a year of healing and recovery. Keep in touch, and remember that we are here: this is a great place to share what’s happening, whether it’s good or not so.
Seenie
Retrorock I am so glad to hear that you have had both SP out now and that ballooning is helping.
I remember several references to stents working/not for post-styloid compression so I recommend Googling it.
I hope that the Dr. give you a Cancer free result. Please keep us posted on everything
Seamom
YAY! For being done w/ ES surgery & for the ballooning having worked for the moment. BOO! For the potential cancer diagnosis, BUT it isn’t a confirmed diagnosis so work on a positive mindset. When my friend had a cancer diagnosis several years ago her oncologist told her to keep her mind in a happy place to help her heal. She said stress & grief cause your body to produce excess cortisol which “fertilizes” cancer. Though it’s hard not to be sad & stressed w/ a potential cancer diagnosis, if you can de-focus from it & keep your mind busy in other more positive ways, it will ultimately be to your benefit.
I will be praying for you, too!
Thank you all so much I feel the love and truly appreciate it!
Blessings,
Ryan
Hi BeachGirl, I had an MRI, CT neck Venogram and a tube inserted into my groin and up into the IJV and into my head to check for raised pressures
Thank you for responding to me. What type of Dr. Ordered those tests and What specifically made your Dr. order them? My CT w/ contrast showed 3.6cm.om left and 4 cm on the right. It started w/bad pain on the left side but now it is more of dull pain and I have more symtoms that seem more like vascular issues such as dizziness and feeling like a falling sensation and bad headaches and feeling generally out of it and off-kilter. Those symptoms seem to be worse when it’s humid outside. The radiologist said there was no compression of my carotids or jugular while in the neutral position. I need to schedule a follow up with a head/neck specialist (I have been putting it off) and I need to know what additional testing to ask for. My CT w/ contrast was from March 2016.
Hi again Beachgirl,
The specialist who ordered these scans was an Ear Nose and Throat specialist (ENT). All your symptoms sound very similar to me, so I would ask for a CT neck venogram with contrast to check specifically for compression of the Internal Jugular veins, which are seperate to the cartoid artery. An MRI with contrast should also do the trick.
In my case I had increased intracrannial pressure as a result of IJV compression and a forward neck posture.
Let me know how you go!
Ryan
Hi All,
I found out today that I don’t have testicular or prostate cancer after all. Thanks for your prayers and thoughts! It means a lot!
Ryan
YIPPEEE! WOOHOO! PRAISE GOD!! HALLELUJAH!! How relieved you must be!
Thank you for the good news!!!
That’s such great news, Ryan! What a relief for you 
Wonderful news Ryan! So pleased for you, hopefully you can get on with enjoying your life now!!
Awww thanks everyone!
Ryan-So HAPPY to hear the GREAT news!!!
Insist on have the test done with your head in flexed position or they may not be able to perceive the ICA or Jugular compression. I ended up having to go for 3 scans. My Neurologist ordered them properly after personally discuss the plan for my scan with the head radiologist.
Hi Everyone,
Thanks for your kind support over this journey. Am feeling much better. Turns out that Vascular ES was only part of the cause of the IJV compression. The reason it is still not fixed is because I was born with my C1 Vertebrae several mm’s thicker than most people! Would you believe it?
Anyway, my specialist liased with some other medical professionals from America who had dealt with this exact issue- and a stent is possible in a few months time. They are not going to use a metal one but some new mesh material that poses less risk for collapsing.
Despite all this, I am actually feeling a lot better. The doctors don’t think I am in any mortal danger so have just been living my life as normal!
Let me know if you have any questions- happy to help and support!
Blessings,
Ryan
Well, glad that you’re feeling a bit better, and hope that at some point you’re able to have a stent done. If you’re able it’d be good to hear how that goes, as that seems to be a subject coming up quite often now.
Best wishes, Jules