I’ll be praying that the surgery is successful! 
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Hi! If you are in NJ i highly recommend Dr. Newkirk. He works with a vein dr there as well. And he is very familiar with vein compression. He was the first ENT surgeon that i saw that knew exactly what was causing my symptoms and acknowledged my jugular vein compression. I had a CT with contrast. And sent it to Dr Patsalides in NYC. He is a neuroradiologist and handles veins. He does video apts. I am in CT not far from you. I went to the ER and demanded the scan because i wasnt getting answers. So the ER did it there. Ive had many ER visits. I have chosen to go with a surgeon near my dads house in NC. Its convenient for me to stay and my dad will watch my daughter while i go for surgery. Dr hackman. He is very good. He did my hyoid revision in august. I would probably Have gone with Dr Newkirk if the location was more convenient for me. Its not that far but it would mean staying in a hotel and my husband is refusing to go with me. So im lucky i have my dad near a very good surgeon bc my husband wont go. He said its too stressful- my medical issues. Anyways best of luck. Lmk how u make out! This is awful illness and im praying for all of us. 
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Thank you! I will check out Dr Newkirk. I really pray all goes well with your surgery! Keep us updated and I will also! It is very hard dealing with this! 
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Thanks Jules for the info! This group is so helpful!
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Hi Jules,
Will a CT without contrast show vein compression? I really don’t want the xtra radiation from contrast. The Dr. said it is hard to tell if there is compression but can’t a test show that? Why wouldn’t he order one? I’m so confused. Dr. D also said he would not know if the ligaments needed to be removed unless he was in there and could feel them. He said if they are hard yes but if flexable no. Wouldn’t the xray I had showing them calcified make them hard? The vertigo has been so bad the last fews and I’m feeling very down. I do have bppv and it could be that but seems like I get more often now so could it be related to ES? Sorry so many questions!
Hi Chasingophelia,
A CT w/o contrast only shows calcified areas in the body. You do have to have a CT w/ contrast to see soft tissues & for vascular compression, during the scan, you need to have your head in the position that makes your symptoms the worst in order to see the compression. Another test that can be done is a venogram which also involves x-ray & being injected w/ contrast.
The fact that your vertigo is getting worse could be related to ES. Symptoms do seem to get worse for awhile then let up for a bit then get worse again. Often what happens w/ ES in vascular cases is when the styloid elongates it can trap the jugular vein (IJV) or carotid artery (ICA) between itself & the transverse process(es) of the C-1 vertebra, & the IJV gets compressed to some degree especially when the head is in particular positions.
Dr. D should be able to tell if your ligaments are calcified by looking at your CT scan. If there is calcification on them, it will be visible there. I’m surprised he said he needs to physically feel them to make that determination. That is an unusual approach, I think. I only had little bits of calcification on my stylohyoid ligaments so they would not have been inflexible & would have flunked that type of test. Thankfully, Dr. Samji saw the calcification on my CT scan so he removed my ligaments w/ my styloids.
Have you contacted Dr. Newkirk yet? He’s not on our list of doctors as we’ve had no one mention having him do their ES surgery. That doesn’t mean he’s not good, just that we haven’t had a referral to him so we can add him.
I hope you get better answers from other doctors you contact.
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Cupcake,
You have made great strides in figuring out what exactly is going on and causing all the problems. You have climbed the mountain and it should be downhill from here YOU have been thru the ringer and deserve to get this all finally resolved. I forgot what date is your surgery?
Many hugs to you and your daughter.
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Thanks @Snapple2020. This has been such a struggle. I wish i had the proper help 4 years ago. It took me this long to finally get answers on compression. 1.5 weeks til surgery im praying for all of us. I just want to get better so i could be a good mom to my babygirl xoxo. Thank u for ur support
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I am praying that this surgery helps me and I can go back to work and raise my daughter. OR if its not going to help i pray i dont wake up. I cant keep suffering with these terrifying vascular symptoms anymore. God pls dont let me suffer anymore. And no matter what happens pls watch over my daughter n let her have a good life n know how much i love her.
They day must be close and any day. Wishing you the best and a good recovery. You will be back in no time felling better so you can take care of that sweet baby girl.
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Praying for you, Cupcake 
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Less than 24 hrs till surgery, Cupcake5! I’m praying all this will soon be just a memory & that all future memories made will be happy ones that come from being a great mom to a sweet little girl.
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Hi everyone. Just posting an update. I had my 4th eagles surgery-my right styloid was revised by dr hackman at UNC. Im 5 weeks post op. The surgery got me slightly functional-i was bed ridden and felt like i was going to die. But i still have all my symptoms and I need to take medication daily right now (which i never do and i hate). Remaining symptoms:
-gagging which sometimes leads to vomiting
-nausea
-stomach issues (sibo)
-right eye blurry/pressure
-fast heart rate
-difficulty breathing feel pressure in center of my chest
-left ear pusatile tinnitus
-unable to sleep with out medication
-pressure in my body. Feels like my body cant calm down
-neck visibly pulsing on both sides all the time
Current status: still have unkown floating objects left in my neck. Its being debated if its remaining calcified ligaments or surgical clips. More drs are telling me its calcified ligaments which were not removed by my revision in august. Only hackman stated they could be clips from prior surgery with cognetti.
Also found my c1&c2 are extremely rotated and compressing things. I started chiropractic work.
Im having an MRI and catheter angio/venogram in the next month n possibly lumbar puncture. Im afraid all of the compression has caused me to have possible “brain sag” or chiari causing my symptoms. Something severe has to be going on to cause my remaining symptoms. Its very scary. And very upsetting. I cry everyday. And pray everyday for a miracle to get better for my daughter.
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OH cupcake, I am so sorry for your continuing struggle.
These symptoms sure suck big time! Many of these sound connected to vagel nerve? which is not uncommon after surgery. I hope they pass with time for your sake. Hang in there 
We all our praying for you and your daughter. 
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I really feel for you- you’ve had such a long journey & still only marginally better…I hope that next month’s testing will reveal something that the doctors can treat. I agree with Snapple that possibly the vagus nerve is causing some of the symptoms, hopefully the info & links I sent that BrooklynGirl posted will help.
Will keep praying, & sending you a hug
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Hi Mark
Your story reminded me of mine. A lot of pain, and no solution. When I finally was diagnosed with the ES no one doctor wanted to perform the surgery.
I went to about 10 doctors.
I had many symptoms, a lot of paint everyday for the last two years. One of them was that all my neck and shoulders area became inflamed. The muscles became very stressed and hurting me even while driving.
I’m one week post intraoral surgery now , and in a lot of pain😭 but I feel that some symptoms from before the surgery had desipered, and my back muscle got relaxed.
Natasha,
Did your surgeon prescribe prednisone or some type of steroid to help with your post operation swelling? If not, you can ask for that as a 2 week course of prednisone will help a lot with your pain. Please keep icing your neck & keeping your head well elevated when you sleep. These two things will help a lot too. In 2-3 weeks you should really start noticing less pain.
I’ll be praying for you to feel better very soon!
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Hi Isaiah
Yes, I had meds for swelling, still on antibiotics and pain killers.
It got slightly better, but it’s too early to say.
I take a lot of painkillers.and waiting when stitches will be removed, I think it will improve the situation
That is a good approach, natasha. You will get better over time but healing from this surgery is a slow process. Getting the stitches out will probably be helpful. I’m glad you have pain meds to help for now.
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Thinking of you & hope that you heal soon. Keep strong, it will improve!
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