I agree w/ @Jules, @Thans. It sounds like you have elongated styloids then a gap of normal s-h ligament then a section of calcified ligament arising from your hyoid. This isn’t totally uncommon. To get the best results from surgery, having both the styloids & calcified sections of the s-h ligaments removed would be necessary. I’m not sure how significant the parotid nodule is. I will tell you if it’s removed, you’re very likely to end up with First Bite Syndrome for awhile so I would recommend making sure it’s a problem before considering removal. Depending on the nerve layout in your neck, FBS can also result just from having a styloidectomy.
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Thanks to you both for weighing in. I wonder if my presentation would be too complicated for a non-vascular surgeon. I also wonder where my glossopharyngeal is trapped, as my symptoms tell me it is. This makes me think that a Structural MRI: T1-weighted would make sense to have before surgery. Meantime, I wasn’t able to get the dynamic vascular testing, only static. It will have to do, for dr Annino.
Ps I don’t have typical symptoms associated with a parotid nodule, except throat spasm. Which could be happening from compression from another area.
TYSM~
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FYI - The parotid gland is innervated by the glossopharyngeal nerve. The GN is also one of the nerves innervating the throat. Unbeknown to me or my ES surgeon until in the midst of surgery, my GN was wrapped around my styloid & had to be unwrapped so the styloid could be shortened. The end result for me was FBS, & half of my tongue was paralyzed which took about 9 mos to resolve. The paralyzed side had feeling, however, the motor part didn’t work which made speaking clearly & eating quite interesting.
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I’m so sorry to hear this. I looked up first bite and it sounds awful. Ugh did you not want to eat? How long did it last? I wonder how well the weighted T1 imaging can show the nerves.
Re: symptoms, up until 3 months ago, all were instigated at sleep onset (23 years). Jerking, body revving. Diamox and atlas adjustment mitigates it. Been doing AO in last few years. Well actually I’ve always had ear sensitivity-Pain when anything touches the external part of ear/cartilage. Can’t wear ear buds. Also my heads had sore sports and tightness where a middle hair part would be. I have an SFN diagnosis.
But in the last 3 months, my jaw and sides of my face are painful and sometimes spasm. Sleep can’t be maintained. Super crazy, sleeping 4 hours at best. Plus, when I move my neck it cracks.
Worried about further destabilizing my neck (not sure if I have cci though). Thanks for reading this far. Pls let me know if anything sticks out to you.
It’s a sad day. My surgery date with Dr. Constantino has been cancelled because my insurance will not cover Dr. Constantinos portion. I’m bothered that they blocked the whole surgery including Dr. Tobias and the hospital. I was prepared to possibly pay out of pocket for his portion of the operation. My insurance says there are other Drs who can perform the surgery. So they want me to go to someone who has only done a few and the office will not even tell me if they do vascular. Very frustrating. And on to of everything I have to go into NYC. My balance isn’t good and the noise of the city and vibrations of the train will start triggering symptoms. Last trip I had to make to see Dr. Banuchi took me days to recover. Talking about Dr Banuchi, it was disappointing to hear her say Dr Constantino is the DR I need but she was going to review my images, I would hear from her in 1-2 weeks. After 2.5 weeks I had to chase her. She finally called back and it was like she didn’t remember anything we talked about it what she told me she was going to do. She never spoke with the neurologist, and she said I didn’t have eagles. When I questioned her about it she said she will look at my imaging. I thought that is why I was waiting these last few weeks?! Then she tells me she is leaving the practice. So she wouldn’t be around for follow up care or the second side of the surgery. I have to play the game my insurance wants and see Dr. Persky and Dr. Roof. I’m not very happy or confident just by not getting answers to simple questions, how many surgeries have they performed and do they handle venous outflow obstruction. But I have to wait to get in to see them, travel to the city. Frustrated!
Oh, @lilwider! I am so upset about how this situation has played out for you!! I’m sure you’ve tried to work things out with your insurance company but the fact they even cancelled Dr. Tobias’ part (I recall he is in network for you) seems extremely wrong!! Have you contacted them to let them know you’re willing to pay out of pocket for Dr. Costantino’s part of the surgery, & they can cover, Dr. Tobias, the anesthesiologist & surgery center (if in network)? It seems like you should be able to choose that option. They shouldn’t be able to totally orchestrate your surgery. SO FRUSTRATING!!
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Very frustrated and disappointed. Yes it was one of the many phone calls I made yesterday. But I never got a chance to talk with my insurance advocate, I had to leave a message. I did explain my concerns that everyone involved except Dr. Constantino was covered and I have finances in place to pay his portion out of pocket. I further said that this is against my rights to be covered. I am stuck playing the game that they want me to play. I had made a call to a lawyer who specializes in this and he suggested, though I’m not happy, to play the game but question the Dr to make sure that they are going to diagnose and treat me the same. So I have to find the list of questions here at living with eagles to make sure I’m not missing anything. Jules at Dr C office also gave me some hints and assured me that they are here for me for guidance. My appointment with Dr Roof is Thursday and Dr Persky has agreed to let me send imaging and results first before traveling to NYC. Thank you again for all your support
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I’m so sorry that they’re messing you around like this, it sounds like you have no choice but to go along with them for now 
There’s a list of questions to ask doctors in the Newbies Guide Section, it’s in the discussion ‘ES Info- Surgery’ I think, I’m sorry I’m on my phone so can’t get a link for you right now.
I hope you get to your appt okay 
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Tell your “insurance provider” (an oxymoron if ever one existed) to go to h3// and file for an external review.
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Thank you, I will check it the link you provided. I contacted a lawyer who specializes in this and he says I should have the appointment with the 2 Drs recommended so I have ammunition. How are things going on your journey?
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Thank you for pointing me in the right direction, that is tonight’s job to get ready for tomorrow’s appointment. Thank you always for the support
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@lilwider, no problem. I posted that same link on this thread probably 3 months or so ago, so I thought I’d share it again.
I, too, was asked to go through the nonsense of seeing a doctor designated by the non-insurance company only to be blown off by that doctor. When I called his office for the third time to find out why the referral was ignored, I was finally told by his NP that he didn’t think he was the right provider to treat VES. Complete waste of my time and goodwill just to “play the game.”
I’m eligible to change insurance plans next month and will be kicking the current company to the curb as soon as I get the go-ahead. That’s not to say I won’t encounter the same nonsense with another company, but the former one won’t be making any additional profit on the back of my ill health.
Anyway, I’m scheduled to be seen mid-December by a new medical group. I sent a message to their facility and was contacted the following morning with a message from its chief of vascular surgery saying they could take my case. I will be traveling out of NYS and paying out-of-pocket for a consult, not because I can financially afford it, but because I’m not playing games with any company only concerned about its bottom line.
And that said, after what Costantino pulled, I’m also not getting my hopes up about the outcome. I’m just hoping the facility lives up to its reputation and that its providers are both conscientious and accountable. Once bitten, twice shy.
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@CoHDa - I’m glad you’ve found a vascular surgeon who may be able to help you. Please let us know how your appt. goes & what you think of him. I hope he has the qualifications & experience to do your surgery.
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I think I do remember you parting that link. That was a good thing for the recommended surgeon viewing you if like that, it shows the insurance that they are not experienced. I’m going that’s the case for my 2 Drs I have to see. If you don’t mind me asking which Dr did this to you. I tried to change insurance but there were no options on the NY marketplace that Constantino takes and if I changed to a private insurance I wouldn’t be able to afford it.I was paying out of pocket for Constantino and had made arrangement to pay for surgery. Who is the insurance company to block me from Dr Tobias and the hospital? I’m hoping things go well out of state for you, and I’m still saddened what happened with Dr C.
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Update, I had my zoom appointment with Dr. Scott Roof NYC, trying to absorb everything but it doesn’t seem like he is on board with vascular eagles. He would not do a c1 shave, doesn’t think jugular compression is a thing with eagles. Kept stressing that surgery may not help and could make things worse. He doesn’t think it is an involved surgery, he is the only surgeon other than residents. He does not do nerve monitoring though has done it on BIG COMPLICATED surgeries. He does skull based removal, one side. Does not remove the whole ligament. He says if a problem arises he is able to take care of any issues. Doesn’t think hyoid would be involved in eagles, would not shave hyoid if necessary. Does not feel it is necessary to put in drains, he would send me home with Percocet if needed but relies on Tylenol and Motrin. “This is a quick 1.5 hour operation outpatient, it’s not that complicated” He has studied under Dr Brain Burkey Cleveland Clinic. Dr. Roof Has about 8 years experienced and has done between 20 less than 50 eagles surgeries. He was fine with getting me into a surgical schedule even though he did not review my imaging, he only read reports I mailed into him. I’m kind of numb having to go through this all again, and am looking for some insight from people who have gone through this.
Honestly, I think it’s alarming when a doctor/surgeon doesn’t look at scans but relies on scan reports alone to do a patient assessment. That sends up a red flag for me. I also don’t think of a 1.5 hr surgery as quick. I recently had a nodule removed from my hand. The surgery took 7 min. That’s quick!
Dr. Roof sounds a little arrogant to me downgrading ES surgery as not complicated or long. I think these are relative terms. It can be a very complicated surgery depending on the layout inside the neck once the surgeon can see it. Other surgeons on our list don’t monitor nerves, but it’s not a difficult thing to set up so I wonder why they risk during surgeries w/o the extra feedback which can help prevent nerve injury or permanent damage.
I didn’t have a drain post op & got some significant edema under my chin which didn’t hurt but did look funny. Prednisone was my doctor’s go to for post op swelling.
It’s my opinion that you should skip this guy, do the consult w/ the other one to see what you learn from him (likely something similar) then get back to your insurance company to let them know the doctors they’ve referred you to won’t do the surgery you need based on your CT scan(s). Hopefully you’ll be able to cut through the red tape by jumping through their hoops so you can see Dr. Costantino.
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I would be worried with this doctor, given that you do have jugular compression. A styloidectomy without a C1 shave might be enough to help your symptoms, but as you had an option to have surgery for both it would be frustrating to not go that route, & if Dr C thought it would be necessary then hopefully you can show your insurance company that Dr Roof isn’t able to do the surgery you were recommended, so isn’t the right surgeon for you…
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Thank you for your insight, I am trying to get my imaging to Dr Persky to see if he will review without having to go into NYC . He’s booked until March. Hoping I can get through the entertaining other Drs. I feel with the help of this group and everyone’s experiences I have learned things not to ignore or settle for . I’m trying to stay optimistic that it will all work out.
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Thank you- yes that might be is the thing that concerns me. I might be able to get away without a c1 shave but the person who has done 100s eagles surgery that has seen a lot of different scenarios thinks it’s the best thing I don’t want to go through revision and have more scaring and potential problems. Dr roof may be a great surgeon but I was a little taken by his no big deal attitude and disgusting venous issues as not a part of eagles. Also said 3.8cm isn’t long standard is 3.5.
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Standard styloid length is 2.54 cm or about 1". Sometimes a bigger taller person may have a styloid that’s around 3 cm or perhaps a little more. Dr. Roof is mistaken.
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