Dr. Hepworth and Vascular ES

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 he’s probably not a doctor for the list.
Thanks again! Hope you’re doing well. :blush:

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@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. I’m scared and go back and forth about what to do, but I think that’s only because the medications are helping my symptoms. Without those I’d be pretty miserable. Good luck at your appt!

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Somehow this was a stealth thread to my ES thread finding radar so I totally missed it during the “live” discussion.

I just want to say ~ I LOVE the way you all came alongside @Eagle1 & supported her & each other as well. :heart_eyes: That’s 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. I’m sorry I’ve lost track of how @Lulu, @Bopper & @Eagle1 are doing in that regard. Please update us when you have a minute. :blush:

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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 “I don’t need surgery” I have a day where I’m symptomatic and I think “It would sure be nice to make this go away once and for all.” 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. He’s 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.

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Thank you for the update, Bopper. I’m glad your symptoms aren’t beating you down. It’s pretty amazing that you have bilateral IJV compression w/o extreme symptoms. Your body must be handling it well!

Waiting a bit won’t hurt anything & will give you time to prepare mentally & emotionally. It’s best to go into surgery with a good mindset. :blush:

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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. :frowning: 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.

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Thanks for the update Cupcake; have the stents helped at all? You’ve had such a journey… :pray: :hugs:

Hi Lulu!
I’m 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!

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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 doesn’t 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. Hepworth’s 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 can’t 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!

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Hi cupcake!
I am so sorry to hear that you are struggling so badly. Have you noticed any improvement with your jugular stents? Why didn’t 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 up…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 :frowning: 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 :frowning:

So sorry Cupcake, thinking of you and praying you’ll find someone to help you :pray: :hugs:

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I’m so sorry to hear that you are still struggling so much. My heart goes to you. Don’t give up. I’m 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?

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Hi Blossom! I just wanted to let you know I’m thinking about you and praying your surgery is very successful tomorrow!:heart::pray: I will be thinking about you!

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Thank you so much, Eagle! That’s so sweet. Considering I have anxiety about hospitals and medical things (mainly just the lack of control!) I’m nervous but doing really well. I did take some of my as needed anxiety meds tonight and I’m sure they are helping, but I’m feeling good and even excited. The day is finally almost here and I’m so hopeful. Compared to how I felt before the venogram/angiogram (that really freaked me out for a variety of reasons) I am surprisingly calm because I know I’m in good hands.

I had to stop the plavix two weeks ago, and that has been very illuminating. I feel so awful without it. I had several episodes where I was doing very mild/moderate exercise — a leisurely bike ride and gardening — when I felt so dizzy and my head was throbbing. It was so frustrating to be experiencing that again and I just cannot live my life that way! Have you found any relief from any medications or treatments? Hang in there!

I will be keeping everyone updated on my recovery and I’m hoping for the best!

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blossom,

I’ll be praying for you & Dr. H tomorrow! Will look forward to hearing how everything goes & especially I’m hopeful that you’ll notice symptoms in retreat ASAP after surgery. :hugs:

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Praying for you, God bless :pray::bouquet:

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Hi there Blossom! I hope that your surgery went well and that you are resting up and healing well! I think the Diamox and Plavix are helping some, but I am still so miserable. It is hard to tell but I feel like I would feel worse if I went off of them though. I am really looking forward to hearing your progress! Sending hugs!

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blossom’s posted info about her recovery in a separate discussion, here’s a link so you can see how she’s doing:
Surgery recap! - General - Living with Eagle
:smiling_face_with_three_hearts:

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