What do you mean by monitoring the nerves?
@musclecarguy - Tiny electrodes are placed at various points on your face, in your mouth & on your neck & shoulders prior to surgery but after you’ve gone to sleep. If the nerve associated with a particular electrode is disturbed during surgery, the nerve monitoring tech is who is watching a computer screen will call out the number of the nerve that shows up on the screen to let the doctor know which nerve (s)he is near so (s)he can work more cautiously in the area. Even w/ that, there are times a nerve needs to be moved out of the way or is wrapped around the styloid & has to be unwrapped, so sometimes further nerve irritation is unavoidable during surgery.
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@Deggui - I’m sorry. I should have worded my statement about your C1 more cautiously. As @TML explained, having C1 shifted one way or the other doesn’t indicate CCI in any way. I only mentioned it because mine was shifted to the left & that caused my left IJV to be compressed so in some cases, that little bit that C1 is off center can make a difference but it doesn’t always.
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If it’s your right side than I’m 99% sure it’s your styloid compressing your right ICA. Waking up in the night in panic could be vasovagal response due to the compression. Ipsilateral weakness is a common symptom of ICA compression (e.g., the shoulders falling forward). You really need to get that ICA/styloid looked at. All of the right sided pain around the mastoid and neck would be pain referring from the artery.
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How do i know if i need c1 shaved or not?
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It’s always difficult to determine if someone needs a c1 shave or not. Only in cases where c1 solely compresses the IJV (i.e., styloid does not contribute to the compression) it is clear a shave could help.
When IJV compression is causer by both styloid and c1 it’s hard to say, and it depends on the surgeon. Some surgeons, for example Dr. Osborne, doesn’t believe shaves are necessary because once you remove the styloid, the IJV can breath on the side where the styloid was, regardless if it’s still shoved against c1. Often times members will go ahead with styloidectomy first, and see how their symptoms change, and get a shave if still experiencing intracranial hypertension symptoms.
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@Deggui - The decision about whether or not C1 needs to be shaved is often made during the surgery. Since it isn’t clear cut via imaging, a surgeon can give a pre-op opinion, but until (s)he can lay eyes on the situation once the incision is made, it isn’t always clear cut as to what will need to be done.
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Hi I wonder if you can describe the panic attacks you are experiencing? I have a non verbal adult son with autism. He has elongated and calcified styloids and hyoid. He has non seizure or panic like symptoms. We believe it is related to him not being able to fully breathe. We have been able to take his oxygen level fitting one and it has gone down as low as 78. He wakes up with them at night and has them during the day. Sometimes swallowing food or even his saliva causes them. His symptoms are worse on his right side as he touches his right ear and sometimes it randomly turns a purple red and swells then an hour later back to normal. He has excessive salivation on some days. Many more symptoms that we can tell through body language. Thank you
Your poor son, I can’t imagine go through all this without being able to understand and communicate his symptoms…and so hard for you trying to help him, hugs and prayers for you all 
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Sending prayers your way
Audrey
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It used to happen that when I tried to sleep, I had trouble breathing, and I would start breathing manually, which made everything worse. Once I “managed to fall asleep,” I would wake up suddenly with an adrenaline rush from any sound or light. I don’t know if it was due to something physical or anxiety, since I was experiencing extremely high levels of anxiety.
I’m sorry for what your son is going through. I’m slowly getting better myself, and let me tell you something I’ve learned — controlling anxiety really changes how intense the symptoms are.
I currently have tinnitus that comes and goes, and some strange sensations in my right eye and oropharynx. Yesterday, I was able to sleep without medication for the first time in weeks. I’m still experiencing moments of extreme depression and some mild pain in my neck and upper trapezius, but I’m much better than before. I’m not doing any intense physical activity, since it seemed to make my symptoms worse.
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@KarenG - Are you making any headway toward finding a doctor who is willing/able to do surgery for your son?
I’m so sorry for the pain & frustration he is experiencing due to not being able to communicate, & the frustration you’re dealing with because he can’t communicate. You both must be very exhausted at this point. I’ll keep praying for you to find help for him very soon.
So glad you are getting better and I hope it continues. They are very strange symptoms that we all are trying to piece together. I think his panics are similar to yours and some others that have described them. I do believe he is having ear/throat pain and possibly Tinnitus. Thank you so much for sharing your story and your kind words. It helps to understand what others are feeling so we can get help for our son. Lots of prayers for you. 
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Thank you so much for asking. I did talk to Dr. Fargen’s nurse and she said the non epileptic seizure episodes can be caused by Eagles. She said they do the CTA and can actually cause them to happen by having the patient turn their head different ways during the scan however since Ben would have to be sedated and they would have to maneuver his head/neck around she wasn’t sure if they would be able to cause the episode. They have never had a non verbal patient so she was going to talk to Dr. Fargen and call me back. That was 10 days ago.
Dr. Pride from UT Southwestern said he doesn’t do Eagles surgery and that he wasn’t the correct surgeon. I explained to the nurse the reason I contacted them was his radiology experience and that he was on the Eagles doctor list but they said I need to contact Dr. Welch. They also wanted a CTA done in which I questioned the necessity of the radiation and sedation exposure (thanks to your suggestion about that). I now have to get a referral from Ben’s doctor for Dr. Welch. I waited because I thought I would hear back from Fargen’s office before now.
Honestly I don’t know what I would have done without all of you in this group. I read and search everyone’s symptoms to try to figure out if that is what Ben is experiencing. You are our lifeline. I am so saddened by the gaslighting from the medical professionals that are supposed to help those needing medical attention. But all of you encourage me to continue to fight for the answer and solution for what is happening in his body. After all it is all of you who saw the IJV on his scans and not even the radiologists who initially read them. One thing I see in you all is your strength and determination to get answers not only for yourselves but to help others and for that I am very grateful. I feel safe in this group. It’s hard to explain these crazy symptoms to others who can’t comprehend the pain all of you are going through. Lots of prayers and hugs
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I’m sorry that you’re having to wait so long for Dr Fargen’s team to get back to you, it’s frustrating now that you know what’s causing Ben’s symptoms to now have to battle for treatment, but hopefully that will come soon. I don’t know what meds he’s on, but some members have tried anti coagulants, they can help with the symptoms of IJV compression , Plavix, Brillinta, Eliquis, Xarelto, Diamox have been helpful some times, or otherwise supplements might be worth a try like Trimetazidine & Citicoline & Creatine?
Would it be better to take Dr Pride’s name off the list then do you think?
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@KarenG - I’d give Dr. Fargen’s ofc a call back if you don’t hear something in the next day or so. We have members who’ve waited months to hear back from that office after their initial contact. That makes it difficult to plan other forward steps when there’s hope of getting an appt w/ Dr. Fargen & wanting to keep one’s schedule open for that. Seems like either he’ll see your son or he won’t i.e. it’s a yes or no answer, & it takes almost no time to convey that via a phone call.
I’m undecided about taking Dr. Pride off the Doctors List since we did note he doesn’t do surgery but does diagnose ES, however, as quickly as his front office staff shut you down when you asked about his ES experience, it might be best to remove him.
I hope Ben is able to get a referral to Dr. Welch quickly once you get the referral to him.
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@Isaiah_40_31 yea I need to call Fargen’s office tomorrow to make sure they received the recordings I sent of Ben’s non seizure episodes. Dr. Pride’s nurse staff was great, he was the one who told them he didn’t think he was the right doctor since he doesn’t do Eagles surgeries. Seems confusing since he has on his bio that he has a radiology specialty. The hospital even has a rare disease clinic. Maybe wait to take him off the list?? I will ask his nurse what she thinks because you all don’t need the extra frustration with another doctor if he isn’t going to be helpful.
I just requested a virtual appt with Dr. Welch since Dr. Pride basically referred us to him. I am bypassing the official referral since Ben’s PA and Autism clinic closed and he won’t see his new doctor until Dec 22. It’s time for mamma bear to get this moving. Too much time and suffering has passed. We are going to get some answers soon. Thank you for your concern!
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Good job being assertive for Ben, Momma Bear!! You’re doing what you need to so he can get help sooner than later! Unfortunate timing that his Autism clinic closed & his PA is no longer accessible for you/him. I hope the new doctor is a good fit & tremendously helpful for you.
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I hope that you do get answers soon, & keep strong, I’m guessing you’ve had to fight for him all his life if the US is anything like the UK
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Hello, I’m back after some time. Soon I’m going to have my lower right wisdom tooth (48) removed, and I also have a consultation with someone who performed a styloid process extraction via the intraoral approach. I wanted to ask a few questions about the symptoms. Has anyone experienced a sensation of a tight band or something similar running from the retromolar area to the tonsil? I feel it all the time, although it’s less noticeable in the mornings after sleeping. I’d like to know if any of you have had this symptom.
I’m getting nervous about the surgery after reading several posts in this group where people got worse instead of better. How was it for you? Did you have any lasting effects?
Another thing: I’ve tried different neck positions and movements, but I haven’t been able to reproduce the symptoms. Is this normal?