I am so young and so depressed regarding my symptoms of Eagles, if you could take a few minutes to reply to my questions that would be amazing!!!
I have left IJV compression (between styloid and C1) as well as severe transverse sinus stenosis. My styloids are both 3cm.
I need my styloid out (in USA) before stenting my two transverse sinuses (in Canada).
My questions are as followed:
I have severe pain all over my face (including my right side of face and jaw - where IJV is not compressed). Could this mean I probably need my right styloid out too? Would I see any improvements from just removing the left (that is compressing the IJV)? Surgery will cost me $30kUSD out of pocket. I can’t afford $60kUSD at this time.
My symptoms are severe facial pain/pressure, head pressure, jaw pain, and brain fog… has anyone had vascular ES surgery and has resolution of these specific symptoms?
There is a good chance that the right-sided facial pain are related to your styloid irritating your facial &/or trigeminal nerve. Both are commonly a problem w/ ES. However, we have members, including myself, who’ve had “cross over pain” i.e. pain that disappeared when the opposite side styloid was removed. There is a possibility that once your left styloid is removed & your IJV is decompressed, the position of the right styloid might shift a bit taking the pressure off the currently angry nerves. The best course of action is to wait to decide about the right styloid until you’ve had the necessary decompression surgery & allowed for six or so months of post op recovery.
How soon after your styloidectomy/IJV decompression will your transverse sinus stents be placed? I hope you’ll have some recovery time between the two surgeries. Getting the IJV decompressed may also help w/ blood flow at a deeper level depending on what the cause of the TS stenosis is.
Regarding resolution to the face symptoms, since those are most likely nerve irritation from your styloid(s), they should resolve after your styloidectomy (which will be part of your IJV decompression surgery), but as you noted, it may require removal of both styloids eventually.
I’m truly sorry the cost for a styloidectomy has skyrocketed in the U.S. over the last 3 years. I wish our medical system was more compassionate toward those who travel to come here for surgery at great expense & would offer a discounted price for them.
I had bilateral IJV compression, but just from the styloids & C1 wasn’t an issue. After the first surgery to remove the worst side, I found the vascular symptoms of head and ear pressure, feeling off balance & drunk, brain fog, plus some other weird & horrible symptoms went pretty quickly- I was very lucky and didn’t need any stenting. I had pain in my jaw, ears, up around my eyebrow from the Trigeminal nerve I believe, as well as numbness & tingling. This has improved with the surgery, although not gone completely, so I still take a low dose of Amitriptyline.
I didn’t have as much nerve pain on the other side, although it did make itself felt more after the first surgery, we do see that happen quite a bit. It wasn’t too bad, but I decided to have the 2nd side done while I could- I’m UK so although treatment is free, we have really long waits as you do in Canada. I could’ve managed I think if I could have only had one side done, but am glad I opted for that as now the surgery is really hard to get here.
It’s hard to say how you’ll be after having just one side done- hopefully your vascular symptoms will improve enough , that’s a crazy amount to have to find for surgery!
Who are you looking at having surgery with in the US?
I would check into if you need it all or most of the way back to the skull base. I’m not sure how far back he goes on a regular basis.
You could also check into Dr. Trevor Hackman at University of North Carolina Chapel Hill. He might go closer. He still leaves a little bit to preserve the facial nerve.
@danielleg - Dr. Cognetti cuts the styloids back to about 1 cm in length. It’s been mentioned on here that he’s becoming more interested in helping people who have vascular ES which is great news! I’m not sure how that will change his surgical strategy but it’s certainly worth talking to him about when you get the chance.
Sometimes just getting the styloid cut back helps reduce vascular symptoms. I had some vascular symptoms (w/o realizing I had vascular ES until later) that resolved after my styloids were shortened.
I believe you should have a conversation w/ Dr. Cognetti about your concerns before your surgery date. The answers he gives you may help you decide whether or not to proceed with him.
Dr. Costantino in White Plains, NY, does vascular decompression w/ a C-1 shave if needed. He works together w/ a neurosurgeon. You could call his office to find out what he would charge for a cash paying patient & to see how far out he’s booked.
•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056 http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS
I am sorry you are facing these challenges so young. This community is very kind & knowledgeable so do use this resource for advice & support. Being young should help you recover from any surgeries faster, which is a good thing. I wonder if Plavix could help you a bit while you wait for surgeries? Stay positive that it can get better. Merry Christmas🎄 D
Cool - I called Dr. Costantino’s office today to make a consult with him as well. I’ll speak with both and then decide. Thanks so much for your help and recommendations means more than you know!
@etherealcataclysms - someone recently posted that he doesn’t seem interested in non-vascular ES cases, but I’d say call his office to find out if that’s universally true.
means more than you know!