@Isaiah_40_31 @Jules I did mean Vagus, I got some info confused from reading previous posts about it though, thank you. I will be sure to mention the concern though during the consult. For the CT scan 3D images, is that something I just mention to the imaging facility? Any explanation from Constantino about why he does that? Its not a deal breaker, just curious. Thank you
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@Andy89316 - From what I understand, it’s a specific software program that runs in an MRI machine that creates a FIESTA MRI (FIESTA-C - Questions and Answers in MRI & not many radiology clinics have it as @Jules noted. Usually, vagus nerve trouble can be detected via the types of symptoms a person has but also once the nerve is visualized during surgery. Dr. Costantino predominantly does surgeries for patients w/ Vascular Outflow Obstruction aka IJV compression. Unless your scans show IJV compression, you’d do better to contact Dr. Cognetti in Philadelphia who is a VERY experienced ES surgeon & has done hundreds of successful ES surgeries. He does do initial consults via telehealth.
•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. https://hospitals.jefferson.edu/find-a-doctor/c/cognetti-david-m.html
Also another doctor at U of Pennsylvania, Philadelphia, doesn’t want to be named, but contact scheduler Lindsay Flood 215- 829- 5180/ 800- 789- 7366, ask for her & say you have ES and would like scans to be reviewed by the appropriate surgeon.
Why Dr. Costantino cuts fascia & removes part of the digastric my have been mentioned in a discussion here, but I don’t recall off hand what his reasoning is.
@Isaiah_40_31 @Jules Ugh…so I have imaging on Thursday, but apparently the CT is just going to be laying flat with and without contrast. I had only communicated to my DR about dynamic. But, per an email from Shantel, with Dr. C, they just want Brain MRI and CT Venogram; but, I’m concerned with compression being obvious or not. I am scheduled for telehealth with Dr.C on Oct 4, so I could get another CT if needed. I just thought I had all my ducks in a row. I am also getting a referral to Nakaji because the main person that supports me in this says AZ is easier to get to and from (true), and personally cuz he doesn’t do the extra digrastic that Dr. C does, granted not a deal breaker. I am putting in for FMLA so I can focus on this and hopefully be on the road to recovery in 6 months
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@Andy89316 Let me know if you have any questions about Dr. Nakaji. I had my first surgery with him almost 2 months ago and having the second in 5 weeks.
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@Chrickychricky Hi, thank you. Did you have to travel for treatment? How long did you stay local for post-op? Im in KS, so I pretty much gotta travel via flight if I have VES. Does he usually do both sides in that 3-4 month timeframe? I’d like to do the 2nd side, if needed, in that timeframe. What imaging does he like to have? Hope everything went well with you and will look for your update in 6 weeks or so
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@Andy89316 Yes, I flew in from CA. I had to fly in for the initial consultation, a few days before surgery for the preop appointment and then 2 weeks later for the follow-up. I know it’s a lot of flying but I feel his expertise makes it well worth it. I had the first surgery on a Wednesday (preop on Tuesday) and they wanted me to stay local through the weekend in case anything came up. It is 1 or 2 nights in the hospital depending on how you are doing. I was swallowing fine so I discharged the next morning and stayed in a local hotel. I know all of the surgeons have their own timeline for the second surgery. For Dr. Nakaji, he said at 6 weeks we would know whether I needed the other side. Since he is so busy I got on the surgical calendar at my 2 week postop for Mid October (approx 10-12 weeks after first surgery) we decided I would just cancel if I was doing well enough to avoid stage 2. Based on my experience and assuming it goes about the same my plan is to have the surgery on October 14th, Monday, spend 1 night in the hospital, 1 night at a VRBO house we rented and fly home Wednesday. I don’t know if he has a standard policy on what he requires for the consult but I know he wants the IR angiogram with manometry for making the surgical decision (of course that can always change). Since you have to fly out for the consult it’s probably best to have that ahead of time. I also had a CT venogram but he was most interested in the pressure gradients from the manometry. Let me know if there is anything else I can help you with.
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@Andy89316 - Don’t fret about the CT scan not being dynamic. If you do have significant IJV or ICA compression, it will most likely show up even w/ your head in neutral. We can discuss this further once you have your radiology report in hand. Also, don’t forget to ask for some 3D images & a copy of your scans on a CD before you leave the radiology office.
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@Chrickychricky Thank you very much for all the info. I would for sure get all the imaging done before the consult; I want this all said and done ya know!
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@Isaiah_40_31 @Jules I’ve already requested a CD, and will probably ask for a 2nd, even buy it if needed cuz Nakaji takes them by mail and for some reason my Laptop did not read the one from my DDS, so I may have to send one to Dr. C in the mail. I called today and asked about the 3D, and I don’t remember exactly, but it wasn’t a straightforward answer. I am going to reach out to my primary and ask him to update the order to include it. How are the read if they are not already 3D? Thank you
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CT scans are done in many thin slices. Doctors know how to identify the structures they see in a slice or series of slices & can measure the styloids & see vascular compression that way. Most feel that is more accurate than looking at 3D images which we lay people prefer.
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If the CT isn’t in 3D when you get it, there are programmes you can use to convert them, there’s info on here to help with that if you need it…
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@Isaiah_40_31 Well, its been a terrible imaging process…I went in on 9/12 for Brain MRI and CT Venogram w/wo contrast. When I got there they said they couldn’t do a Venogram/it wasn’t ordered. But it was and it was confirmed when I scheduled. I got that fixed at got the Venogram (CTA) on 9/17. It was communicated 2 or 3 times to measure the styloids and render the images in 3D, neither was done! I have a request to my Drs office to call the imaging facility and request both; I am also working through the tutorial to do it myself!
The reports say no compression…which idk, it is a good thing, but it of course raises more questions. I have a telehealth with Constantino on 10/3 and am sending everything to Nakaji for review. If needed, I prefer to work with Nakaji. But, if he just recommends styloid removal and agrees no compression I will work with a more local Dr on the list. I am very worried though about Vagus Nerve compression, which I will talk with the neurologist about tomorrow. I am also seeing a local ENT next week to talk about my R nasal cavity being not as full as the L. I will share imaging when I can. I do also recognize that stuff can be missed on the imaging.
Do vagus nerve issues tend to decrease after styloid removal? Thank you or any input.
@Chrickychricky Hi Chrick. Just curious a little more about Nakaji. I am sending everything to him next week at the latest. Probably the imaging by mail and drs reports and notes by fax and in the mail. How long does his diagnostic review take? Did he have you do anymore imaging than what I listed? Did you have compression? Thank you
Radiant Viewer is so easy! Here are the images, first is left, 2nd is right. I tilted them so they could be fully seen. It does seem like no compression. I’m thinking Vagus Nerve issues for sure, and maybe TOS, or a breathing issue… The Left is 4.74 cm. The Right is 4.59 cm. Is there a great way to save images in Radiant Viewer?
Your styloids are mighty long @Andy89316! No wonder you’re having significant symptoms!
I’m sorry your scan appt was so frustrating & that the radiologist didn’t measure your styloids or provide 3D images. Good job for teaching yourself how to create those images & do your own measuring. Remember the measurements you or a doctor make of the styloids is only an estimate. During surgery, they are often found to be longer than measured.
Vegas nerve symptoms usually go away or mostly so after the styloids stop bothering the vagus nerve. I had some symptoms which I hink I previously mentioned, & the only thing I still have trouble with is swallowing, but it’s an intermittent problem & only when I drink water or something of similar viscosity. My heart, blood pressure & breathing symptoms subsided nearly completely.
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@Andy89316 Good morning. I didn’t have a diagnostic review. After I had confirmation of elevated venous pressures across the stenosis (the compression site) from the IR angiogram with manometry, I called and made an appointment. I think I had to wait 6-8 weeks to get in and the visit was in person since there was no telehealth option. I had a brain MRI/MRA and a CTV but he was most interested in the manometry.
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Yes, they are long…I agree with @Isaiah_40_31 that hopefully any vagus nerve issues should improve with time after surgery, but as with any nerves in the area of the styloids, they can get extra irritated during the procedure, so it might be that your symptoms could be a bit worse before they get better- just to prepare you!
Let us know how you get on with the Neuro, will be interesting to hear their opinion about the vagus nerve…
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@Isaiah_40_31 @Jules Did not get into the Vagus nerve too much with the Neuro, but he said it makes sense that symptoms would decrease after surgery. He had heard of ES, but everything tested fine. He wrote 2 Rxs to help with headaches. I will see him again in 8 weeks and talk more about Vagus nerve recovery or stimulation.
I have contacted quite a few DRs today to get info about how to become their patient possibly. Nakaji, Constantino, Cognetti, Krempl, Samji, and Coughlin/Holcolm. Both Lydiatts in NE are no longer working or treating ES. Holcolm works at Methodist also with Coughlin, not sure about experience level. Samji requires $500 for the consult, not covered by insurance. I have a few more in the Midwest to contact today. My ENT and PCP will have a lot of referrals to send out soon.
I’d say I’m okay working with a lot of those Drs. With Nakaji, Cognetti, Samji, and Constantino being at the top. But I have to factor in when they could schedule me, $, and my confidence in them. Like, I’m sure Krempl is good, but if it would just be a few weeks to wait for Nakaji I totally would. Thank you
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Dr. Matthew Old (Ohio State University) seems to have a lot of experience per the FB group and calling his office today. He seems to do at least one surgery a month, if not 1x a week for ES. He also seems to move quick. I am mailing everything to him tomorrow or Monday and then they take just a couple days to review and follow-up. Then possibly surgery in 4-6 weeks.
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We’ve heard good things about Dr. Old from some of our members who are also on the FB ES group, & I’ve recommended him to several of our members but have never heard whether they saw him or not. I think he’s a good doctor for you to see. I’d love to know how your consult goes if you have one.
Based on the list of doctors you’re planning to see, it seems you suspect you have vascular compression. Dr. Samji should not be on your list if that’s the case. He did my surgeries, & I had good outcomes for the most part, but he left me w/ left side IJV compression because it’s something he doesn’t deal with. I’m surprised if he didn’t see it while doing my styloidectomy. He never said anything about it if he did. It took me 6 years to figure out that my remaining symptoms were due to that problem.
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I’m glad that your Neuro was helpful, & that you’re now on the hunt for a surgeon…let us know how you get on, nice to hear about Dr Old, as @Isaiah_40_31 says, we’ve not heard from members having surgery with him recently…
@Isaiah_40_31 I think my initial symptom review had me thinking VES. So I initially just contacted those Drs. But, imaging did not show any and I’m thinking more classic ES now that I’ve had a lot of time off; it may be safer though to work with a Dr that does VES just in case its noticed during surgery. Or get further imaging to 100% confirm. Like the ultrasound protocol of Hepworth. I will for sure be asking Dr. Old if he will be able to do anything for that if he notices during surgery
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