I want to share the findings of my severe internal jugular vein compression which Dr. Kamran Aghayev found.
In Dr. Kamran Aghayev’s own words:
“Right side internal jugular Vein: Severe compression”
”Left side internal jugular Vein: Very severe compression with near-complete collapse of the vein”
Left side is so heavily stenosed that not even contrast liquid is visible on my CTA. These are observations of myself, though also present in Dr. Kamran Aghayev’s medical report.
I share this for the sake of every future Eagle syndrome patient who has to fight the bureaucracy of their own country to get the answers they themselves deserve.
Providing additional CTA pictures that show my external jugular vein, which is expanded and has created bulbous conditions in my veins at the base of my skull, shown with green arrows.
Wow that is wild about the contrast not showing. Appreciate you sharing your images. I have learned so much about self advocacy throughout my Eagles journey as well.
Hopefully in another 100 years, the people suffering from what we are suffering from won’t have to go through what we have been going through.
I have been asking the Norwegian healthcare to take me serious for years, and this is the answer after 6 odd years.
You sure do have some pretty impressive IJV compression, @Rehri. I see your styloids are pretty short but you have significant stylohyoid ligament calcifications below your styloids that are contributing to your bilateral IJV compressions. Are you planning to travel to Turkey to see Dr. Aghayev for surgery?
I’m very sorry you weren’t able to get any help in your country. We’ve had a number of members from there over the years & some have been able to get surgery at home, but I don’t recall any of them having the level of IJV compression you’ve got. Just in case you haven’t heard of or contacted these doctors, here are the ones we have on our Doctors List for your country:
•Dr Henrik Stenwig Li, Rikshospitalet, Oslo , Phone:004723074268 Email:hli@ous-hf.no
•Dr Nils Petter Fossland, St.Olav’s Hospital Trondheim,ENT surgery:
Phone: 004772576117 Email: post.onh.kjeve.oye@stolav.no
•Dr.Oddvin Bjorge, a private ENT clinic in Aalesund, W. Norway, Website: https://www.bjorgeonh.no/ Phone: 004746901420 Email: post@bjorgeonh.no
-Rafal Fira, Volvat Hamar(oslo) phone:0062553550 https://www.volvat.no/behandlere/fira-rafal/
I am now awaiting Norwegian health services to review the findings that Dr. Kamran Aghayev and radiologist that is infact at St. Olavs hospital in Trondheim have made.
The fact of the matter is that my pleas to get vascular ES addressed in Norway has been met with doubts from St. Olavs hospital and my general practicioner… I finally found Dr. Kamran Aghayev who put his foot down and made a video explaining that I need a CTA to my medical contacts.
Dr. Nils Petter Fossland and his staff of maxillofacial surgeons and the ENT surgeons showed me the door when I suggested Eagle at St. Olavs hospital… I know that other Norwegian patients that have been in contact with Dr. Kamran Aghayev have experienced somewhat the same with St. Olavs.
You may remember a man with the name of Henrik from Bergen who went out into Norwegian papers after being dismissed by St. Olavs. He ended up at Dr. Oddvin Bjørge’s clinic who proved to St. Olavs that Henrik did infact have eagle syndrome… After which he was referred back to St. Olavs for surgery. How ironic is that.
Another woman named Lena Johansen from Stavanger whom I have had the pleasure of talking on the phone with was also dismissed by St. Olavs hospital and ended up undergoing C1 transverse process shave and styloidectomy with Dr. Kamran Aghayev…
I have yet to find any evidence that anyone does the C1 transverse process shave here in Norway, and I would seek this treatment in addition to my styloidectomy as per Dr. Kamran Aghayev’s instructions and experience.
Rikshospitalet in Oslo is probably the safest bet, as the expertise in Norway about rare vascular disorders has its home there, I am told.
We have some laws here in our wellfare state in Norway, that if I better treatment and help is provided elsewhere in the world and it is documented to be a better course of action than styloidectomy alone, they can refer me out of the country and give me economic backing.
@Rehri - It is very frustrating to be completely dismissed when your imaging so obviously shows both calcified stylohyoid ligaments & significant IJV compression. One has to wonder what the doctors look for in order to diagnose those problems, or is there total ignorance about what they look like on imaging among the doctors who review it?!
I will make a note by Dr. Fossland’s name on our Doctors List about his reluctance to diagnose ES even though he’s done at least one successful ES surgery. He is the doctor who ultimately did @Henrik’s surgery. Henrik is a moderator on our forum, but he has a busy life now that he’s better, so he only posts once in a while. He’s been very helpful for our Norwegian members since he joined here.
I’m glad you were able to talk to Lena & perhaps learn about Dr. Aghayev from her or learn more about him. He has done surgery for a number of our members but most haven’t come back to let us know how their long-term recovery has been. We usually only get information soon after they’ve had surgery. We always hope our members will come back a year after surgery to tell us how they’re doing since the early post op months are sometimes not so good.
This is good information for us. If you contact the hospital & find a surgeon there who may be able to help you, please let us know the details so we can add them to our Doctors List.
It’s good news that you may be able to have the cost of out of country surgery covered, however, I bet there are many steps that must be completed prior to that being approved which means more waiting time for you. I hope the process is quick if seeing Dr. Aghayev for surgery is the route you end up needing to take.
Thank you for sharing your imaging & your experience, I’m so sorry that it’s taken so long to get a diagnosis & then only because you’ve gone to Dr Aghayev! I’m glad that he’s pushed for you to be able to get a CTV in Norway…Unfortunately Norway isn’t the only country to not treat vascular ES, many in Europe don’t & other countries like the UK only have one or two doctors who’ll do a C1 shave…
Is the cost of surgery prohibitive if you can’t get it paid for by your healthcare system, would you be able to have the surgery then apply for it to be paid for afterwards or is that then unlikely to be funded? I imagine you’re feeling pretty grim with that level of compression, and possibly at risk of a CSF leak from the high intracranial pressure?
I can pay for it, and I was well on my way to go down to Dr. Kamran Aghayev before my family and GP was on all fours begging me to wait.
Though I can’t get it refunded by going to either Britain or Turkey.
It has to be within the European Union for Norway, unless you get Norwegian doctors and hospitals to apply you for “foreign treatment”, from which they can order a surgery from any country, hospital and/or surgeon.
I have lived like this for years and I never considered CSF leak to be a result from this. I always thought that was from cutting into bone. I did a quick read-up on it now though… I see how it is.
Anyway. I don’t intend to wait for very long and want this resolved soon. St. Olavs hospital is going to come onto the field to play ball. If they want to fuck around and drag this out, I’m heading to Dr. Kamran Aghayev.
