Good luck! I’ll be thinking of you tomorrow. Let us know how it goes & how you are feeling.
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Good luck! I hope you get the results you hope for.
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I’ll be praying for you tomorrow, Kingjauz, & for Dr. Delacure. We’ll look forward to hearing from you when you feel up to sharing. 
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We are thinking of you! Wishing you and Dr. Delacure the best for tomorrow. All fingers crossed for a successful OP and a smooth and quick recovery. 
Thinking of you & praying for you & Dr DeLacure, hope all goes well for you, God Bless 
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He couldn’t get to it. Couldn’t justify the risk for what he was seeing. He held me. Then stitched me, and he’s not going back, nor should anyone else he says. I’m devastated. Completely.
But thankful I’m here to update you all.
It’s all about living with it now forever. If anyone is in the same boat and have tips and advice on how to keep the symptoms at bay please let me know. I dont know if I can accept that I just cant be very active anymore. I’m too young to be in that place already. I got 2 small kids. I need to have mobility. I need my life again.
What a HUGE disappointment, Kingjauz! I wouldn’t completely throw in the towel though. There are other surgeons on our forum who have more experience than Dr. Delacure. Perhaps another look at your situation by someone more experienced would be a good idea. A CT scan w/ contrast or an MRI would better show the soft tissues in relation to your styloid so the next doctor would be able to better evaluate the situation before surgery. Revisiting surgery would require 6 months or so of healing time first. You could consult with Dr. Annino in Boston as he’s had very good reviews on our forum or Dr. Hackman in NC (a bit further away), Drs. Newman & Cognetti in Philadelphia, too.
In the meantime, some of our members have had reasonable relief from vascular ES symptoms by taking a blood thinner. Sleeping with your head elevated may also be helpful & then there are nerve pain meds for any nerve pain you have, but they do require some time to work & sometime, experimenting to find the right one. Ice or heat on your neck & gentle massage sometimes help, too.
Again, my heart goes out to you. I will pray you know the best steps to take next. 
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I’m so sorry for that man! What a disappointment. That was one possible outcome the next suggested doctor in Europe told me: When he sees that it is to complicated after entering that area, he wanted to close everything up without doing sth helpful. That was no option for me. Was fair of him telling me in advance, so I could decide against surgery there.
Stay strong and keep on fighting. Better he stopped than doing some irreparably mistakes. There are very few brave doctors who perform that surgery very well as I knew from this forum. Hopefully you can have a appt with one of them quickly. Sending positive vibes and best wishes to the east coast!
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So sorry that he wasn’t able to do the surgery, but as TheDude says, better to call a halt than do serious damage…but very hard for you to live with.
I’m sorry, I can’t remember if you’ve had a CT with contrast? If you have vascular ES & the jugular veins are compressed, doctors can sometimes do venoplasty or stenting to help with that- obvs not ideal if the styloids are still in there, but it might be a possibility? As Isaiah says blood thinners have helped…
For pain it might be possible that steroid/ lidocaine injections would help- they do with some members, although just temporarily. And trying nerve pain meds as Isaiah says- there’s info in the Newbies Guide Section about that.
Thinking of you
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I’ve had the contrast CT done. DeLecure mentioned in the consult that it looked unremarkable despite it growing down over the entire jugular. Which he says is where it belongs just not quite so far down the way mine is. I dont know why he is in the ‘no’ vascular ES camp, but he doesnt believe it causes any Vascular issues. That said, my jugular was bleeding and he had to turn to emergency procedure. Once he stabalized me. He looked at the structure and his determination was that the Styloid region did not look like it was impinging on anything and that continuing on was a greater risk than the reward he could determine. I will try some of your suggestions in the meantime than perhaps revisit this towards end of year. Already over my out of pocket max…dont wanna waste it if I dont have to.
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Oh, Wow! How devastating! I am so sorry that that happened. After reading your last post, I am glad he stopped doing the surgery. It was above his skill level. That must have been scary to hear what happened when you were under. I forget what type of doctor he is?
I had an ENT see all of my tests that ruled out everything else & my CT scan that clearly showed the styloids compressing on the jugular veins & he told me that there was no such thing as vascular E.S. He said that because I wasn’t in debilitating pain in my face, that I didn’t have Eagle Syndrome & the styloids weren’t causing the issues that I had been having. This was an E.S. surgeon. He also said it was too risky & there was no way he would do it. Well, I am glad that he told me that ahead of time & then I found my doctor that actually did my surgeries.
I am on Diamox. It is for intracranial pressure headaches & the symptoms caused from this. I think it has worked to keep my symptoms at bay. My headache doctor said that is the medicine that they use for this type of thing.
Do you have a picture of your CT scan?
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I cannot say I doubt Dr. Delecure’s ability here at all. We discussed this very scenario ahead if time. He told me that with everything going on in that area its tricky and things can go wrong. He said in those situations he won’t let me die, but if it’s too risky to move on, which it was through no fault of his own, then he would shut it down and stitch me back up. My jugular wasn’t able to withstand being tucked out of the way so that he could get down to the bone and remove it. I started bleeding. He did an emergency graft that he made from surrounding muscle fibers to patch the jugular. I never needed a transfusion, but he said it was serious for, I think he said, about 12 mins. He was able to poke and prod around the Styloid a bit after. As he said in the consult, it was unremarkable. Not rigid, not going the wrong way and some other thing he checks for. It’s 3.8cm growing in the shape of a spike but all 3 Surgeons say it look unremarkable. Any way. He said he cannot justify going back in because he doesnt believe I will get much relief and he cant recommend anyone else go in either. At some point you have to start thinking how many time you are willing to put your life on the line in the hope of getting some relief. I didnt trust my 1st doc. I did and still do trust DeLecure. But what if the next guy cant pull off that graft? I dont have an answer here. I was willing to put my life in DeLecure’s hands and when it came down to it he saved my life, like he said he would if needed, then he examined the area and assessed reward to current risk…all things he said he would do. I could see from above he stayed calm, confident but performed the technique with urgency to patch the flow. I don’t believe I have the wrong doctor. But if the pain persists as it was, and the vascular symptoms even more, I may start searching for another stranger to put my life in their hands to give me my DAMN LIFE BACK!!!
Makes sense. Thanks for explaining that. How scary!
Goodness, that was a close one! Having to do a graft too…it does sound as if he was very skilled, and made the right decision to back off. I don’t know much about vascular surgery, but presumably there could be a really big risk if you did try surgery again, as you have a graft now?
If you do consider surgery again in the future, maybe Dr Hepworth in Colorado would be a good bet, even though he’s a way away- he sounds like he’s very experienced with vascular ES.
Once again, I really feel for you, so sorry that this has happened…
Thank you for the explanation of what happened during surgery. It does sound like Dr. DeLacure is very competent & made the right decision as everyone else has noted. Some ENT surgeons will work w/ a vascular surgeon at their side when presented with a case like yours. If you decide to try again, that is something you should ask about. I know that Dr. Hepworth is one of those doctors. In the meantime, I hope you heal quickly & even that you find your symptoms reduced after this surgery. That would make what you’ve been through worthwhile!
Please keep us updated as things progress for you.
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