Hi Blossom! Thank you for reaching out and helping me during this extremely difficult time! I just had my venogram with Dr. Hui a week ago. It turns out that all the veins in my brain appear fine, just blocked up from the bilateral compression between my styloids and C1. No more wondering what is causing my issues. I am so relieved to finally have answers, but so nervous about getting better now that we know what is causing my problems. My emotions are everywhere!! My jugluar veins collapse more during rotation of my head and I have developed collaterals to try and get the blood flowing faster from my brain to my heart while these jugular veins are being pinched off. Intercranial pressures rise during my head rotations.
Did you happen to get a bad pressure headache after the venogram? My head pressure has been awful since the procedure. Dr. Hui said that some ppl will get headaches from the procedure because you are adding contrast etc. (extra pressure) to a brain that is already experiencing high pressure. Iām really hoping it goes away soon. I see Dr. Hepworth next Tuesday and I am praying that he can give me something to help with these debilitating headaches now that we know exactly where my issues are. I am so grateful he has taken the time to really investigate what is going on with me and to help me find answers! Please forgive me because my brain is not fully functioning, you said that Plavix has really helped you, right? What all did it help you with, symptom wise? Headaches and dizziness are my worst symptoms. Thank you again for your help!
Hi Eagle, Iām glad you got some answers! That is a huge relief even though I know it can be hard to process. I did not have much of a headache after my venogram, but I was on versed and fentanyl drugs during the procedure. I was already on plavix when I had mine done so my symptoms were pretty well under control with that. To answer your other question, the plavix has helped me with all of my symptoms including neck pain and shoulder pain, it has reduced my headaches a lot!!! In severity and frequency. It also has helped with my dizziness a lot. I do not feel like Iām going to pass out while exercising even in heat. I noticed within about six hours of my first dose my headache (mine is always on right side behind right eye) went away. I do notice when I donāt take it and at extremely high elevations my symptoms will get worse. Iām also on a muscle relaxer at night, flexeril, which helped when the plavix wasnāt keeping it under control. He also had me try dandelion root tea, he said it can help with head pressures. Good luck at your next appt! Iām sure Dr. H can help somehow!
It sounds like Plavix has really helped you!! Iām praying it will do the same for me. I have not taken a medication that has help with my symptoms yet. Dr. Hepworth currently has me on Methazolimide for intracranial hypertension, but hopefully he will add the Plavix now that we have the whole picture. I already take a muscle relaxer at night too. Iām going to try some of the dandelion tea tonight. You, and this forum have been a God send for me. Thank you again. Please tell me again, when is your next surgery?
Hi Meghan! Sorry for the delay. I had to have jugular balloon angioplasty on both sides. Ugh! Donāt let that discourage you though! Iāll explain why-
I do/did have jugular compression from styloids. Iāve had one side done so far (next hopefully this November) and surgery results were like night and day! I went from debilitating migraines (plus a zillion other symptoms) and losing my will to live to headache free and sheer excitement for life! It was magical and I was thrilled. Unfortunately, within 3 weeks my jugular decided to close up again and thatās why I had the angioplasty. It wasnāt ballooned during surgery because my flow seemed great after removing the styloid. My Vascular Surgeon is Dr. Garland at Vascular Institute of the Rockies and he said it was most likely due to scar tissue building up as I healed. He is wonderful, by the way! So kind and down to earth. Another surgeon without an obnoxious ego!
Since the angioplasty on Wednesday I have felt soooo much better again. I still need the second styloidectomy and Iām thinking I just might feel like a normal human again after that! Fingers crossed! Iāve been searching 37 years for something to help me and this is it! (Thatās most of my life and I donāt know how I got to this age? I still feel 25 in my head. So weird.)
Anyway, I realized my last message and timing didnāt add up and jive with my history seeing Dr. Hepworth. I want you to know that I lost touch with him for a while due to other health issues (teeth and guts) and while I was away is when he became a pro on Eagles. Before that we were taking care of my CSF leaks, Intracranial hypertension, and chronic sinusitis. And as I mentioned- heās always been lovely and believed me and fought for me. Heās the reason I was able to get a VP shunt. It saved me from regular ER visits and eyes popping out,etc.
I have seen so many rude and downright mean doctors. The stories we could all tell, Iām sure!
I have chronic dissociative disorders but even my thinking is clearing up with more open jugulars. Itās glorious! But please excuse my rambling and probable jumping around.
In 2007 I had a venous stroke and I recently read studies that show how bad vascular Eagles can get if left untreated and I seem to be the poster girl for that. I had multiple huge intracranial blood clots (one 6ā long in my saggital sinus) and hemorrhaged and should have died. Thatās a whole other long story though.
Itās definitely been a rough go but this- Eagles- this is the answer and there is treatment and we are so lucky to have the few doctors that understand it and take the time to learn and save us! What a breath of fresh air. They are giving us our lives back!
Five years later, did I answer your questions? Ha!! I so hope I did. Iām sorry this is so long!
Very best wishes, Meghan!
Iāll see you at Hepās!
So glad that the angioplasty has been helpful for you- I hope too that youāre able to get your second surgery!
Is it worth adding Dr Garland to our list, did he remove your styloid, or did you see him just to do the angioplasty?
Thanks so much, Jules! You are always so kind.
Dr. Garland only did the angioplasty. He is one of a few vascular surgeons that joins Dr. Hepworth during styloidectomy surgeries to check progress of the jugulars. Dr. Garland tells me he is more of a technician than a diagnostician so heās probably not a doctor for the list.
Thanks again! Hope youāre doing well.
@Eagle1 i hope you can get some more relief and get surgery scheduled! Mine is going to be October 13 to remove my right styloid. Iām scared and go back and forth about what to do, but I think thatās only because the medications are helping my symptoms. Without those Iād be pretty miserable. Good luck at your appt!
Somehow this was a stealth thread to my ES thread finding radar so I totally missed it during the āliveā discussion.
I just want to say ~ I LOVE the way you all came alongside @Eagle1 & supported her & each other as well. Thatās what this forum is about. You all are AWESOME!! I hope each of you is making good progress toward having surgery &/or recovering from ES. I know at least @blossom has surgery coming up in the not so distant future. Iām sorry Iāve lost track of how @Lulu, @Bopper & @Eagle1 are doing in that regard. Please update us when you have a minute.
Hey, thanks for checking in! Ironically, I just saw Dr. Hepworth yesterday. I have been going back and forth on surgery, because my symptoms have improved, and are really more episodic and not at all debilitating. But every time I think āI donāt need surgeryā I have a day where Iām symptomatic and I think āIt would sure be nice to make this go away once and for all.ā Dr. Hepworth took a closer look at my MRA from last November. He says he sees jugular occlusion on BOTH sides! We are doing another 12 week trial of Plavix, and then revisiting the question of surgery. Heās not pushing, but definitely sees the benefit in removing the styloids. I suspect I will wind up having surgery sometime after the first of the year.
Thank you for the update, Bopper. Iām glad your symptoms arenāt beating you down. Itās pretty amazing that you have bilateral IJV compression w/o extreme symptoms. Your body must be handling it well!
Waiting a bit wonāt hurt anything & will give you time to prepare mentally & emotionally. Itās best to go into surgery with a good mindset.
Hi. I didnt read all the answers. I just got back on the site after being locked out. But all i know is dr hepworth is one of the best for vascular eagles so you are in good hands. Only downfall is he doesnt do c1. Dr Huis new research believes everyone with vascular eagles should have styloid and c1 done to make room for jugulars and then stent afterwards. I had styloids removed-calcified ligaments in 4 surgeries. c1 was never removed still compressing both jugulars and i was diagnosed with intracranial hypertension. Ive been loosing my vision pretty badly even tho they say i dont have papeledimia. I dont know how bc i have severe pressure blurriness and episodes of static or blacking out vision and i have tunnel vision from high pressure. I vomit numerous times a day from high pressure its not good. I recently had jugular stents put in by dr hui who is an amazing dr. And really trying to help us. But its overwhelming bc theres not enough drs out there for vascular ES. dr hui said theres only like 3 drs out there handeling vascular ES. there needs to be more. And my vascular was not treated from the beginning so i didnt have the correct surgery order. And ive declined pretty badly. But i am glad you are in the hands of dr hepworth. I wish he was closer to me or i went to him from day 1 for surgery.
Hi Lulu!
Iām sorry that it has taken me so long to get back to you now! I am a school teacher and the beginning of the year is always so crazy!
How are you doing now after having your jugular balloon angioplasty? Are you still feeling good? I pray so! I am praying and hoping that surgery will help me. I am nervous about having surgery, but way more terrified of having to live feeling this way. I 100% understand the daily debilitating migraines and losing the will to live. My head is throbbing as I write this.
I love hearing you say that this is the answer and that there is treatment! It gives me hope. I would love to hear how your doing now. Are you still having surgery for your other side in November?
Thank you so much for reaching out to me and for all you info and guidance!
Hi Isaiah!
This group really has been such a God send for me as I navigate through this very trying, but also hopeful time. I am scheduled to have surgery with Dr. Hepworth in December.
My venogram findings with Dr. Hui in late August showed severe bilateral compression between C1 and styloids. Dr. Hui said that I would be needing my styloids removed as well as my C1 shaved down. I know that Dr. Hepworth doesnāt shave down C1 so I was unsure of what I was going to do. Dr. Hui and Dr. Hepworth have different view points about C1 and this made things very difficult. I knew I wanted Dr. Hepworth to be my surgeon, but I also want the the surgery that is going to be the most successful with the most relief of these symptoms. After recently seeing Dr. Hepworth, he told me he believes he can help me without needing to shave down my C1. I trust him. I believe that if he thought otherwise, he would send me elsewhere.
Now I am just waiting for December. In the meantime, Dr. Hepworthās NP is trying to help me get these awful pressure headaches and vertigo under control. I will be doing a round of Dexamethasone and then try Diamox since Methazolamide did not seem to help with the pressure. I have heard Dandelion tea can help so I am also drinking that.
I am finding that I have a lot of fear about the future and if I will ever feel better. I desperately want to be a mom and canāt even imagine trying to do that with how I feel. I am praying that surgery is going to be very successful and I will have light back in my life. I am so grateful to have encouragement and guidance from you and others on this forum!
Hi cupcake!
I am so sorry to hear that you are struggling so badly. Have you noticed any improvement with your jugular stents? Why didnāt Dr. Hui have you get your C1 shaved down first if he believes everyone with vascular Eagles should have their C1 shaved before stents?
I have to travel to see Dr. Hepworth and feel it is 100% worth it to have him for my doctor. Maybe it would be worth the travel for you to be seen by him? he may have some answers for you!
These are my exact symptoms I see Dr Hepworth Oct 15 thank you for posting
When I have the headaches I lose all my energy and they always happen in morning before I get upā¦they blamed gastroparesis for 7 years just found out my styloids are elongated 2.75 left. 3.0 on right hope they can fix it hugs
i already had 4 eagles surgeries so they dont want to do c1 on me hepworth doesnt do C1 so i dont think it would be helpful for me. I am going to end up needing a shunt. I cant get out of high pressure. I havent noticed much improvement with stents. i dont know. im very upset and sick
Iām so sorry to hear that you are still struggling so much. My heart goes to you. Donāt give up. Iām praying for relief for you. Have you made any progress on finding a Dr. to do your shunt? Did Dr. Hui say how long it would take for you to notice any positive improvement with your stents? Was there any positive improvement at all?
Iām going to try some of the dandelion tea tonight.
You, and this forum have been a God send for me. Thank you again. Please tell me again, when is your next surgery?
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Thatās what this forum is about. You all are AWESOME!! I hope each of you is making good progress toward having surgery &/or recovering from ES. I know at least 
c1 was never removed still compressing both jugulars and i was diagnosed with intracranial hypertension. Ive been loosing my vision pretty badly even tho they say i dont have papeledimia. I dont know how bc i have severe pressure blurriness and episodes of static or blacking out vision and i have tunnel vision from high pressure. I vomit numerous times a day from high pressure its not good. I recently had jugular stents put in by dr hui who is an amazing dr. And really trying to help us. But its overwhelming bc theres not enough drs out there for vascular ES. dr hui said theres only like 3 drs out there handeling vascular ES. there needs to be more. And my vascular was not treated from the beginning so i didnt have the correct surgery order. And ive declined pretty badly. But i am glad you are in the hands of dr hepworth. I wish he was closer to me or i went to him from day 1 for surgery.
