@Isaiah_40_31 at first I thought that “IJV decompression” was just about styloidectomy & c1 shave, but I learned earlier today that it’s not, it’s something related to the IJV itself/fascia ?
Is it of crucial importance for a surgeon do it as part of the surgery & why ? What happens if it isn’t done.
Thanks
Some doctors when the styloid is removed will check that the IJV is flowing again, & if not will check for other compressions, which could be the C1 process, other blood vessels, muscles, fascia or even nerves. So it’s ideal for VES patients, but not all doctors do this, & some members are lucky (like me) in that just removing the styloids is enough. If there are other compressions which aren’t picked up in surgery, then unfortunately the surgery might not help as much.
Updates:
is not available this tomorrow for an appointment he offered to postpone it. But he said that he will be able to provide a report later this week already if I sent him the imaging & symptoms.
By the way: Are surgeries on both sides at once recommended ?! it seems to me that this will be very hard to recover from, especially for the first months. So I was really surprised that Dr. Aghayev offered me to do both sides (C1 shave AND styloidectomy, both sides) during the same surgery!
Especially that my right side is the most problematic side in terms compression + the naturally dominant one.
I find it very scary, any opinions on this ? Any members here which had both sides done at once ?
@ryanab - We’ve had several members who’ve had bilateral surgery w/ bilateral C1 shaving done by Dr. Aghayev & have recovered well, though, as you mentioned, it is a more painful recovery initially. It does cost a little less than having two separate surgeries, too. @gramos & @Bowser are he first two of our members who had surgery with him.
In the US Dr. Hackman traditionally does bilateral ES surgeries & Dr. Osborn does his a couple of days apart, but they are among very few surgeons who do that as others are concerned about post op swelling being too great in bilateral surgery cases. As far as I know no one has had a serious problem w/ throat swelling after a bilateral surgery, even w/ C1 shaving. I believe this is because steroids are given in the IVs during surgery & are often prescribed post op in those cases. A neck “bra” which provides neck compression to reduce post op swelling is also sometimes used or a drain tube is inserted which is left in for 1-3 days after surgery to help reduce swelling.
Most surgeons who offer bilateral surgeries will also do them unilaterally at the patient’s request so you would have the option of having 2 surgeries.
Updates:
Me: i am not doing good at all, suffering a lot “like usual”, talked with my GP about these latest findings and he was so happy we found out one of the potential big causes of my suffering. He applauded the research i did to find out and he said sorry he wasn’t always able to help. He had prescribed me a lot time ago an MRV exam which i have an appointment for on Thursday (i should probably go and not cancel it ?). The GP also prescribed me some Diamox which i started on low dose (250mg/day) in the last few days.
I am trying to accelerate my surgery optionsm
(edited out). And Dr Martini is available for appointments but in… 2 months
Tried to setup a telehealth consult with dr. Costantino, which i’ve heard really great things about recently! And looked forward to get his analysis. But the soonest consults are in… 3 months. (350$) So i ended up not booking it.
Had an appointment with the belgian ES surgeon who didn’t read my email before the appt. (which included the exam links & symptoms), so he wasn’t aware of my case when I came in. After I mentioned the email he looked after it and had a look at the ctv exam briefly and he confirmed i had vascular eagle however he said he would need more time to look at the imaging and write a report so he fixed another appointment in a week from now. (i suppose he will suggest styloidectomy surgery next week).
Dr. Kamran aghayev seems to be the best option, considering he does the c1 resection which seems really necessary for my case. Sadly the financial aspect is what has been blocking me but I am considering borrowing an amount from family (which offered me this option if i didn’t find solution in BE) to help pay for the total expensive costs of the surgery privately in turkey. But strongly considering this option for now, i am just waiting for a second opinion/report from any of these other specialists.
I’m sorry that the doctors appointments are not working out well for you! Waiting is so hard when you’re in pain & feeling rough, & if you’re paying for it! I hope that the diamox does start to help you soon, and if you can borrow the money for Dr Kamran , I don’t know how much the price would be compared to Dr Costantino, but I guess if Turkey is less of a wait, then it’s understandable you want this done sooner. See what the Belgian surgeon says, that’s frustrating when you’ve sent everything ahead & it’s not looked at!
You’ve done a great job advocating for yourself @ryanab, especially with how awful you feel! I’m really glad to hear your family is offering to help you with a loan so you can have surgery w/ Dr. Kamran, however, I hope the doctor you’re seeing in Belgium is also able to do your surgery so you don’t need to travel & spend a lot of money.
I agree it’s just sad that you had your appointment w/ the local doctor, & he didn’t bother to inform himself of the reason for your visit when you’d sent him everything in advance. Sigh…we find that happens in the US fairly often, too. Also very annoying about Dr. Heim. What is it w/ these doctors?!
VERY IMPORTANT update to everyone:
Sorry i didn’t have the opportunity to come back for the all updates & context & stories. Been doing; not well at all, and I took a decision around 10 days ago :
i am having surgery with Dr. kamran (Istanbul) in a few hours from now (monday afternoon). Pray for me 
i am quite anxious.
(Especially because i am doing it in a not stable state, was pretty much bedbound 95% of the day these last weeks due the aggravation of my state, seizures etc).
Bilateral IJV decompression via C1 resection & styloidectomy
Hopefully more updates from me soon.
@TML @Jules @Isaiah_40_31 @tesla001 @MGORNEAU & others
@ryanab that’s fantastic! Can’t wait to hear your updates!
I have thought of your situation often, and I am so relieved for you. I am praying for you and Dr. Kamran. From all I have read about him, you are in the best of hands. If he did not feel it was safe and in your best interest to do both sides at the same time, I don’t believe he would risk it.
I am so happy for you and praying you have complete relief from your pain and suffering.
I’m so sorry to read that your condition has gotten so much worse over the last few weeks. I’m so glad you’ve decided on Dr. Kamran to do your surgery & that it’s tomorrow! I will also be praying for you & for Dr. Kamran tomorrow especially. Wishing & will be praying for the best possible results from your surgery.
So hard when you’re feeling that ill to be organising all this and travelling, I’ll pray that it goes well and resolves your symptoms, and that you feel peace… Do you have family with your for support? Take care & God Bless
@ryanab I’m sorry your condition has worsened and I hope the surgery went well and I wish you a speedy recovery.
Get in touch as soon as you can and take care!
I’m praying for you.
I am backSadly with not super good news, the positive news is that I am alive I guess 
…
This is the soonest I could come back and write a post, I was absolutely not mentally present before due to my severe head pressure.
on monday afternoon, the surgery took place at a private clinic in Istanbul (nice infrastructure, individual rooms, good food), the quote included a stay of 2 to 3 whole days after the surgery-day at the clinic. That’s when I also noticed that I had some serious complications post-op:These complications worry me A TON and get me CRAZY, especially that I was told pre-surgery a few days earlier by the surgeon “to not worry about any complication, and that I am too nervous” (I was in fact never nervous; I just ask questions because I don’t want to have complications and I have the right to know about the risks!) and he said that it very rarely happened and that I shouldn’t be anxious.
→ So this is my current state, does anyone have any idea of the cause of this, will it go & improve ??? I am talking about both MY MENTIONNED complications (that scare me a loooot) AND the head pressure (that I had pre-op and was my biggest complaint and there is absolutely no relief for now, just worse overall). And as a reminder: the surgery pain by itself in my neck area is livable, I am a man and I can go thru the pain & discomfort of that, knowing that in 3 months it will get much better.
@Jules @TML @tesla001 @Isaiah_40_31 @MGORNEAU & all members
I’m really sorry you’re going through such a rough recovery right now. It sounds incredibly hard, especially with the vomiting and nerve irritation on top of the head pressure you were already dealing with. I know how frightening it can feel when the symptoms don’t ease right away.
Please don’t lose hope yet. What you’re describing is still very early, especially after bilateral surgery involving both styloids and C1 work. From what I’ve learned, it can take several weeks, sometimes even a few months, for the body to readapt to the new venous flow pattern and for the swelling to settle enough to feel real relief from the head pressure. The first stretch can be the hardest, because everything is inflamed and adjusting all at once.
And try not to take the limited contact from Dr. Kamran too personally, it’s unfortunately very common for surgeons to be quite absent right after surgery, even when patients are struggling and need reassurance. It doesn’t make your experience any less valid; it’s just how many surgeons structure their practices. Out of my four surgeries in the past five years, I’ve only had one where I truly felt the surgeon cared about how I was feeling afterward. You absolutely deserve attentive follow-up and compassionate communication.
You’ve already made it through the most difficult part, the surgery itself. Try to give yourself grace in this healing window and allow time for the swelling, nerves, and flow to rebalance. I’m praying things start to ease soon for you. Please keep us posted when you can and you are always in my prayers.
@ryanab thanks for the update. Sorry to hear you aren’t doing too hot.
You are very early in the recovery process. Bilateral styloidectomy is no joke. Members sometimes have difficult recoveries following a unilateraly styloidectomy, so getting both done PLUS C1 shaves can be a lot, especially regarding swelling.
Your tongue symptoms is almost definitely glossopharyngeal nerve irritation due to surgery. It will take a while for the nerves to settle down. This nerve plays a critial role in swallowing too (it is involved in elevating the pharynx when swallowing), so it’s likely your swallowing difficulties are due to it as well. I strongly suspect the head pressure will reduce once swelling is gone. Your arm raising issue is likely due to spinal accessory nerve irritation from surgery. This nerve is responsible for innervating the trapezius (which is involved in pulling the shoulder up) and SCM. I suspect the “cracking bone” by your right ear is your right TMJ joint. It is possible that having your mouth open for the air tube during surgery put strain on the joint. So it may crack every time you open your jaw.
Obviously I’m not a doctor, but these are the most logical explanations given anatomy and the surgery you underwent.
@ryanab I’m sorry you’re going through such a difficult time after surgery, but we’ve seen it happen to others too.
What we’ve noticed on the forum and groups is that people are worried while they’re in severe pain after surgery. As time goes on, their posts decrease except for a question about a specific problem and eventually disappear from the groups and forums, which is an indication that they’re OK.
So I hope it goes away for you too.
But it still needs to be monitored for possible complications and I believe the doctor will look into it during a follow-up examination.
I’ll try to explain your situation. During surgery, due to access to the targeted area, the surgeon has to secure your nerves and move them aside so as not to damage them. This will hurt your nerves and it will be painful and some functions will not work for a certain period of time. When they did my spine surgery, I couldn’t lift my legs to go up the stairs for days.
The jugular veins and other venous structures pass through muscles and when it comes to compression, it depends on muscle spasm.
That operated area has made you feel painful and inflamed, and such a condition leads to spasm of many muscles. It can even now affect the collateral veins, because they also run through the muscle structure, so they are now at risk in your inflammatory process. So that can be the cause of your ICP increase.
I believe that as time goes by it will get better. It happens to many people.
The process after bilateral surgery is very difficult. I have even read some posts that if they could turn back time, they would still decide to do one side at a time.
I asked Dr. Kamran to do one side at a time, he asked why do two operations when you can do it in one, but he also gave me an offer for such an option. The price of the operation for one side is 2,000 USD cheaper than bilateral. So that option is much more expensive.
But one side at a time also carries risks, because it creates an imbalance in the structure, so it can be even worse. That is difficult to predict.
Maybe you should ask your nurse or doctor to take muscle relaxants to reduce muscle spasm and thus improve circulation, but don’t try it on your own, because I’m not sure if it’s advisable in the post-operative inflammatory phase.
But also when you get home, ask your doctors about it, because as I’ve noticed, Turkish doctors don’t like drugs.
I’m sorry that this has been so tough for you; it sounds like you reacted badly to the general anesthetic which made you so sick. As the others have said, it is a big surgery and it is very early days- many members have noticed bad head pressure after the surgery, especially having both sides done & having C1 shaves, as there will be alot of swelling, so the IJVs probably can’t re-open fully. If you can still rest propped up, and ice your neck regularly that will help, and get a prescription for steroids either there or when you get home as that will settle things down. It’s very common for members to feel much worse after surgery & even to regret it, but things settle down & usually people are glad.
As @TML says, the glossopharyngeal nerve could be very irritated from surgery, or the hypolgossal nerve. These and the spinal accessory nerve are commonly affected after surgery, but usually resolves with time. Not being able to open your mouth wide is common too after surgery, & quite a few members have found their jaw is painful as the mouth has to be opened wide for intubation.
Thinking of you & praying that you soon see improvements
@ryanab - I agree w/ what everyone else has already posted. I can totally relate to the trouble you’re having with your tongue as I had that after my first ES surgery. The right half of my tongue was paralyzed. It wasn’t numb, the muscle just didn’t work so when I tried to eat, if food got over to that side, I’d have to use my finger or a spoon to move it to the left side so I could chew & swallow. I talked like I was drunk because I couldn’t pronounce words properly. My tongue gradually recovered over 6 months & by 9 months, my friends noticed I was speaking normally again. Eating & drinking were most challenging in the first 4 months after surgery but gradually became easier.
I also had a terribly sore throat & jaw post op. Those two problems took a couple of weeks to resolve.
I want to also confirm that with bilateral surgery, the first couple of weeks will be very uncomfortable with symptoms sometimes being worse than before surgery because of the internal & external swelling from the surgery. The swelling can take 4-8 weeks to settle down enough that you really begin to notice more significant positive changes. As was previously said, sleeping/resting w/ 30º of head elevation & icing your neck for 15-20 min every couple of hours will help you a lot now. Getting a prescription for a steroid dose pack ASAP will be very helpful in reducing your symptoms, too.
You know we’re here for you so please update when you feel well enough to do so. Try hard not to despair about how you’re feeling. Just know how awful things are right now, that is temporary. Your body will heal with time & patience on your part. I will also pray for you to recover well.
Sorry guys disappeared for many days, couldn’t find the focus to open my laptop. I first wanted to thank you all for your support and helpful informations regarding my case, i can’t thank you guys enough! @TML @tesla001 @Isaiah_40_31 @Jules @MGORNEAU
We’re now 10 days post-op, I still am feeling horrible, however I am doing a bit better than last week! Especially today I felt like I was some percents better compared to the last few days (hence why I found some focus to open my laptop and read the comments, today).
Today I was invited to do my post-surgery CTV (& consultation, I am taking the flight back home in 48h) → I’ll upload a few images here + the dicom files, tell me guys what catches your attention/remarks.
As a reminder my first post contained my pre-surgery CTV screenshots & links
To download DICOM files of my POST-surgery CTV (anonymized) :
I am posting it here too for the archive/extra data
View it here https://www.dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.1.2025110603457923.604473686893800931331
or 2 screenshots here:
Post-op ctv:
, I thought he would resect less than this at first !Questions:
welcoming all members feedback & comments. I tried to give the essential data for this update
