Has anyone here had their surgery performed by this type of specialist? I have my first consult on Feb 22. I don’t even know what kind of questions to ask And tbh who knows if it will for sure be surgery. I have had a clot in my internal jugular vein for probably a year and a half, since I had a stroke, caused by styloid compression. I can see why I was referred to this kind of specialist for the clot… but is he really the right specialist to remove the styloid? It’s a bit of a hot mess…
We have had a few members who’ve had their ES surgeries done by Neurosurgeons. Not sure about a Vascular Neurosurgeon though. The VNS should have experience operating in the skull base area & therefore, would be qualified to do the surgery from that standpoint. The bigger issue would be making sure he will take out enough of the styloid (back to the skull base is best) so that it no longer touches your jugular vein. Also removing the stylohyoid ligament if it has any calcification on it is important, too.
If the styloid is only shortened, it can still cause problems when you turn your head in certain positions.
If the surgeon says he’ll do the surgery but leave part of the styloid, ask if he smooths off the tip of the piece he leaves behind.
Here’s a link to discussions about questions to ask your doctor which will be helpful:
Head & Neck surgeons do have to remove the styloid process sometimes to gain better access to soft tissues, so if they’re experienced is surgery in this area hopefully it should be good- you’re pretty limited for surgeons in your neck of the woods (pardon the pun!). So go prepared with the questions from the link Isaiah’s suggested, & hopefully you’ll get the answers you need to have confidence in your surgeon!
@Tanyag - I was referred to a Vascular Surgeon for my surgery - Dr. Omlie. He wasn’t a neurosurgeon, though. He specializes in the neck. I felt confident in his skills working near my jugular vein. The regular ENT that I first was referred to - Dr. Ondrey said he wouldn’t touch me because my styloids were so close to the carotid artery. It was too dangerous. Dr. Omlie asked a maxillo-facial oral surgeon to assist. He was the one that had to dislocate my jaw for the extraoral procedure & had experience with the skull base so they could shave the styloid to the skull base.
That’s quite a surgery you had, naturelover! I didn’t realize your situation was so complex. How great that Dr. Omlie wisely asked for help from a fellow surgeon who was better versed in parts of the surgery than he was.
I think that is how Dr. Omlie usually does it. So he can get in to work in the area better. He said they had to stretch the facial nerve by the ear quite a bit which accounts for why that whole area is numb right now. I also have a weird pain, I think neuropathy maybe, behind my ear & around it. It is super sensitive & hurts to the the touch. I can’t even wear my glasses without pain on that side. Even when I put a facemask on yesterday, the ear strap hurt. I don’t know what to do to stop it.
Hopefully it will settle in time…I had a weird whoosh tingling sensation up my ears if anything made me jump- that’s nearly all gone with time!
Otherwise a nerve pain medication might help for a bit, if you’re not already on anything?
Just a word of encouragement. After my ES surgeries, I elected to have surgery for Meniére’s Disease as I was losing the hearing in my left ear. That involved an incision around the back side of my ear & removal of a bit of my skull behind my ear to install an endolymphatic sac drain tube. Bottom line is I had similar pain behind my ear for several months after the surgery but all is well now. The area still feels a little weird sometimes but is no longer painful. I expect you’ll find this to be the case for you as time passes.
My daughter is a nurse & the straps on the masks she has to wear were killing her ears. Her husband bought some headbands & put buttons on them to hold the mask straps & now she has no more ear pain. There are probably other ideas on the internet for modifying how mask ear straps can be worn. Another option would be masks w/ a strap that goes over the top of your head & one that sits on the back of your neck. I have a couple of those. Don’t like them as well as the ones w/ the ear straps, but they do work.
Thanks, @Isaiah_40_31 ! Thanks for the ear info. I never had problems before my surgery with the behind the ear pain with wearing a mask. Tomorrow I go back to work & I wear a mask all day. We do have those headband things at our store. I will check into them if I am having problems. I have seen those ones that tie around your head too. I never wanted them either. I had found my favorite masks to wear all day, but now I might be on the search again. Thank you!
That does sound like a tough surgery @naturelover. May you have a speedy and full recovery.
I have read Abstracts where the facial nerves are over stretched, but overall, the studies I’ve read always show that on a 12 month follow up, all Eagle sufferers are completely relieved of all symptoms or symptoms are substantially reduced.
Your case does seem a bit more extreme, but from what I’ve been reading you can expect numbness and pain on the operated side from anywhere between 2 and 18 months. Pain ranges from mild to severe. Unfortunately. But remember the above.
As I wait for my day to come I appreciate the post surgery updates from people like yourself. I know this will hurt and knock me out of commission for a bit. But we ALL know that continuing on with this ‘life’, rather than go for the surgery, is not an option.
Thanks for sharing. It will help me prepare for my own surgery. I fear I may have vascular compression as well from the stories I’ve been reading.
My Doctor, like yours, has not done this surgery before. His partner referred me to him, as he cannot perform the surgery. He is a neck surgeon who really specializes in cancer removal. He was described as, “a guy who knows necks inside out. He’s like a mechanic, he takes them apart and puts them back together every day.” I asked if he was good and his partner told me he had him operate on his daughter. I’m in if he’s in.
This has been a tremendous resource for me. Especially in talking with my doctors. Thought I’d share for those who might not have found.
The surgeon sounds like he should be up to the job! Glad that you’re getting yourself prepared, & that you’ve found reading posts on here helpful. Thanks for the link also!
Let us know when you get a date for surgery!
Definitely sounds like you’ve found a well qualified doctor. Having tons of ES specific experience isn’t always necessary for a good outcome if the doctor knows the “territory”.
Thank you, @Kingjauz for all the info. I was a bit MIA since I went back to work on Monday. It’s been a long week! My doctor actually has done this type of surgery before. I think this is just how he prefers to do it, so he can get in the area better. Now that I am 2 1/2 weeks out, I would say that I had minimal pain. My worst pain was in the hospital right after surgery when I couldn’t swallow due to the tubes they put in my nose for anesthesia & whatever. That lasted about 3 days. I only took acetaminophen & ibuprofen, though. I think the key thing for me was icing the area almost continuously for the first 5 days or so. That seemed to help the most. And elevating my head with the wedge pillow & V-shaped pillow when I slept.
I think if you have a doctor that knows the area well, that is good. I was nervous right before my surgery, but I kept telling myself that if anything bad happened, he would know how to fix it! That is his specialty.
Do you have a surgery date yet? What is the next step for you?
So my consult for surgery is this Friday. So getting a bit anxious now. I think I’m like you. I like a surgeon who knows the entire thing through and through so they can fix any problems if any may come up.
I will follow your lead in the ice and elevation. The recovery time varies so greatly I’d like to keep mine on as short a timeline as possible like you seem to have done so well. Can I ask you how bad your symptoms were before compared to now and if there is perhaps any lingering symptom that stands out? Finally, did you do anything different the weeks leading up to surgery? More exercise, certain foods, whatever?
I’ll just interrupt, sorry! Surgery recovery does vary depending on surgical techniques- some surgeons do cut through muscles (I believe, my surgeon said he used to operate that way), whereas some can get between the muscles, so obvs the 1st option takes longer to heal. And it also depends on your anatomy & the angle of the styloids, & which nerves have to be moved out the way, as this can stretch them & cause numbness or pain afterwards.
My surgeries varied; the 1st time I couldn’t open my mouth wide, & couldn’t chew for a couple of weeks, but the 2nd was easier & didn’t have that at all- same surgeon!
As you say, icing & sleeping semi upright will help, also not overdoing things & pushing yourself too much will help! I could walk fine, & did some longer walks while healing, ( not Isaiah40’s length though I’ll add!), but doing jobs around the house etc did upset healing & set me back for example. One member if I remember right tackled some decorating after their op, & caused themself alot of pain!
I’ll step in, too, & say I had to cut back on exercise because they made my symptoms flare. I did try to eat an anti-inflammatory diet (i.e. mostly veggies, some fruit & a little animal & plant protein & stayed away from grains, legumes & dairy for the most part). I can’t say if this helped or not, but I can say when I adhere to a cleaner diet, I just feel better in general. When I eat junk food &/or a lot of carbs, I get more lethargic & into a mental funk. That’s just me though, not preaching this to ya’ll.
I’m so glad you have a consult tomorrow! Yay! Try to write your thoughts & questions down just in case you need to. Hopefully the surgeon will read your chart ahead of time & come prepared, but just in case he doesn’t, I’ve learned that you have to advocate for yourself with this condition. No one knows about it. In the hospital, all the staff that I came in contact with was asking me about Eagle Syndrome & my symptoms. No one had ever heard of it before besides my surgeon.
Like Isaiah & Jules said, everyone’s condition & recovery after surgery is different. I’m just sharing my experience. I found when reading the posts ahead of time, you can get a good picture what all can happen. I prepared for the worse case scenario. And this site helped me with that preparation so I knew what I was getting into.
I kind of talk about my journey on my post called : “Severe Jugular Compression and surgery soon”. But basically, I had migraines & “pressure” headaches every day for 4 years (migraines for 37 years). I also was lightheaded & had a chronic cough. I had other symptoms but those were the main ones My symptoms prevented me from doing any bending over or movement in the mornings. It got better as the day went on. So I couldn’t do any type of exercise or really anything that caused my head to move significantly for 4 years. Before I was on any medication in the beginning, I had symptoms like I was having a TIA where, in addition to the other symptoms, I would get really weak & confused. I couldn’t even scroll on my phone because the position of my head would trigger lightheadedness, nausea & a headache.
Right now, I am 3 weeks out from surgery. I have only had one migraine or headache since surgery. I also have only had a few random lightheadedness times. I still have my cough, but it is a little better. It is weird to have a clear head & no pain for so long.
I didn’t really do anything to “prepare” for my surgery. It had been cancelled twice in December due to a shortage of beds from COVID. So I really was looking at COVID numbers & bed numbers in my state ahead of time. I also updated my will & Health Care Directive. Like I said, I was preparing for the worst. As far as food is concerned, I am vegan, so I didn’t change anything with that, but I did intentionally eat all my favorite foods, plus hard & crunchy foods before the surgery date! ha! I didn’t know how long it was going to take to be able to eat regular foods. Just this week I started back eating harder & bigger bites of food. So far, I just had some pain last night with dinner. It was a meal where I had to open my mouth wide. So I had some jaw pain. Like I said, I couldn’t do any exercise or anything besides walking for 4 years, so I didn’t change anything with that.
I am super sensitive to drugs so I chose not to take anything strong in the hospital or after. Surprisingly, they only had an order for 650 mg of Tylenol other than the strong pain killers. So I was in pain in the hospital due to that. It was the middle of the night so they said it was easier to wait for my doctor to come in. Next time, I will make sure they have an order for the maximum Tylenol & Ibuprofen that you can take so I don’t have to worry about that.
I would say, if you can get more than two weeks off of work afterward, that would be ideal. I do a lot of talking with my job & a surprising amount of head movement, so I was in tough shape after my first day. I suppose it depends on your job & how you are recovering. On this site, they recommend longer.
I think that is all the answers to your questions. Please let us know how your appointment goes tomorrow. I will be thinking about you & anxious to hear.
Well I do appreciate everyone’s words and kindness. Certainly a lot more than the doctor showed me. He literally told me, while I was asking him questions, to be quiet and let him talk. He was not going to allow me any opportunity to demonstrate my knowledge might be greater than his on the subject. When I mentioned this forum he just kept saying things are different for everybody? This is youre experience. Almost like he thought it was cute I was talking with my little friends about how the body works.
Then he started on about the 3cm length of it and it’s not that big. But this next bit really set me off. I immediately corrected him and said my right side is 3cm, the left is 3.8cm. Then he turns and demonstrates with his fingers the size of the difference. I know the difference in 3cm to 3.8cm thank you. I replied, "yeah, but that’s a big difference when its growing through your muscle tissue.
That was the only moment I got him to shut up.
When I started forcing the issues of complete removal of styloid and calcified ligament he refused and said it’s not necessary. When I said it will grow back he said he is taking the ligament out so there is nothing for it to grow back on. Except, the consent form says partial removal. I was getting super frustrated. It got to the point where he actually said if I dont want him to do the surgery I can go find somebody else. I almost walked out right there, but I want a backup plan.
I finally asked him if he had done this surgery before. Mind you his partner said probably not, but he wasn’t sure. He says he has done a lot. I dont think that is true. I can tell he is competent, and he will do what he says he will and do it safe and well. But I want it all out and I do not want to have to go down this road again in a few years.
I signed the surgery consent form as a backup, but I’m going to hit up the list of docs you have on this forum and try and get someone who realizes I am a person suffering from this and understand some things about it. He seemed more insulted I was trying to teach him something.
He also said vascular compression doesnt happen with Eagle. So there’s that. So that was my visit. I could’t be more disappointed in the way this all went down. We did settle down from the friction, but I really want to find somebody else. Sorry it’s not better news. It’s always nice to hear the good stories