I would like to thank all the admin and participants for everything you do.
This was a Godsend and I have learned and still learning so much. I’m happy to join the
Eagle Syndrome Island of Misfits.(not happy about eagle syndrome)
I have the laundry list of symptoms like the rest of you. I have gone through
the a list of MD’s and specialist also. I like to upload some of my 3D CT scans to
share with you. The images are kind of an example that you here the admins talk about.
The images will show the different angulation of the styloids in relation
to the atlas and what you can imagine happens to the poor jugular. They will also show
what a nasty atlas transverse process looks like that may be very well causing problems. It kind of looks like a snake ready to bite that jugular.
I’m currently seeking consults with Dr Hepworth and Dr Nakaji. They have my info and the process is started. I may post later my symptoms and history up to this point.
Welcome @Rex! I’m glad you’re here. Thank you for posting some of your images. I removed your name & birthdate from them to protect your privacy. I’m sorry you’ve lost your job due to the medical issues you have going on. Hopefully once your styloids & are shortened/IJV(s) decompressed, the TOS is dealt with & you’ve healed, you can go back to work if you choose to.
The first thing that jumped out to me are the two halves of your C1 appear to be disconnected from each other. I Googled this & read that "congenital anomalies of the posterior arch of C1 are relatively common & usually asymptomatic. (Congenital anomalies of the posterior atlas arch | Radiology Reference Article | Radiopaedia.org) . I wonder if the crazy overgrowth of your left PT is related to the anomaly of your posterior arch?
Your right styloid is spectacularly long. Your left one is looks pretty nasty, too! You weren’t joking when you mentioned the appearance of your left C1 TP!! WOW!! I can see the distention of your IJVs lower down which may be related to your TOS diagnosis (have you had surgery for TOS?). Your right IJV looks like it may be suffering some compression between your styloid & C1 but the left one (in spite of the crazy C1 TP looks ok to me - NOT a doctor here.).
Your cervical spine overall is slightly curved to the left & appears to have lost its lordotic curve (see pic #5). We have quite a number of members whose cervical spines are straight. The curve can be restored w/ gentle exercises that open the chest & help pull the shoulders down & back, & strengthen the neck’s extensors. When the cervical spine is straight, it brings the styloids into closer contact w/ the nerves & vascular tissues in the neck.
Here’s a good post that has good info about neck anatomy & exercises to restore the lordotic curve.
I’m really glad you’ve reached out to both Dr. Hepworth & Dr. Nakaji. I expect one of them will be able/willing to help you. Please keep us updated as to how your appointments go once you get them.
I have to say that is one of the longest styloids I think I’ve ever seen, gold star for that! And I agree with @Isaiah_40_31 about your C1 process, like you say, it’s very unusual! And the other points she’s raised about your neck…Good that you’ve got referrals in to those doctors, it will be interesting to see what they say…
Wow!!! your right @Isaiah_40_31. I completely overlooked that the atlas is not fused/connected with the missing posterior tubercle. I was focusing in on styloids, anterior part of the atlas and blood vessels. I’m really a misfit!! You would think the radiologist would pick up on these findings. (large transverse process and missing posterior tubercle)
Things that make you go HMMMM!!!
I have not has surgery for TOS. I have been doing PT, dry needling, massage therapy.
My main symptoms that took me out of work were the numbness, pain and loss of fine motor along with severe dizziness and sky high blood pressure/tachycardia episodes.
The vascular surgeon which limited his practice to TOS was interesting. In order to get into to see him you had to go through the all the prerequisite testing, scans and have been diagnosed with TOS to see him. Upon being admitted into his practice everything was accomplished with nurses and med assistants. They did not make eye contact or talk.
At the 3 to 6 month appointments all they wanted to know is how PT is going, pain management therapy and what meds your on. Then Dr. T comes in goes over the 3 things above and recommends treatment in those areas. I ask a question each time. I ask him about the dizziness and he said well I guess it could be from the pain being so bad. I told him I think it might be vascular and he had me raise my arm above my head and it did not turn white and then pinch fingernail to blanch the tissue and see the redness return. He shook his head rolled his eye and said it was not vascular. He never offered surgery, I wouldn’t have him do anyway. To me he had his office operation set up to onboard patients for surgery that are begging for it. I think he and the staff does not want to hear or spend time concerning the pain and all the other symptoms. He never really did a comprehensive exam and layout surgical treatment stating possible resolution. So I stayed with him for the non surgical treatment which help with posture, muscle spasm etc…
I was not sure the surgery would help or make me worse, so I sidelined myself. There is one other surgeon locally. I don’t want to see him yet unless I know there something vascular going on. I never felt comfortable with TOS diagnosis by exclusion of other things. I like to see tangible evidence before doing something. I do know and can comprehend I have Eagles Syndrome. Maybe God has His hand on this process and everything can get better with the styloids exiting. Sorry for the rant.
Do you all have any background on Dr. Hepworth? I know nothing about him and his websites not up. Also any background on Dr. N also.
Dr. Hepworth info I have obtained. Definitely e-mail to get appointment for consultation.
Kristen runs the out of state and country onboarding. $600 consult fee out of pocket.
He will accept insurance once Dr/Patient relationship is formed with office visit. She said you cannot set an appointment if your out of state without prior consultation to see if it is a good match. Kristen has moved from Colorado (native) to the East. She is running mainly everything by e-mail.
Dr Nakaji. Consult fee is $300-400 I forgot and have not paid yet. From what I remember Dr N is out of network but that he does not balance bill for charges paid by insurance(at least my plan). Have to check with them about insurance. She said the rest of the hospital and other charges should be in network. Do not know if that is true and is probably different for each insurance plan.
Oh well enough for know.
Hi @Rex , welcome to the community - I am pretty new myself, but have found it extremely helpful and supportive!
I’m glad you’ve gotten information about Dr. Hepworth and Dr. Nakaji. They are the two doctors I am most interested in and have an appointment with Dr. Hepworth next week. However, based on what I’ve read and seen on this forum, it seems like Dr. Nakaji is better suited to my specific case.
I am just wondering how you were able to get the price for the consultation from Dr. Nakaji’s office? I have been struggling with back and forth communication with his office for several weeks, but ultimately a woman named Nicole said I wouldn’t be able to set up a consult until a gap exception was approved because my insurance is out of network. So until my insurance approves that, I can’t see him for a consultation. After trying to follow up twice, she finally called and said that my insurance should have a final decision that day, but I haven’t heard anything from her since. It’s been quite confusing with their office, so I’m wondering how your communication has been?
The communication with the office was ok. I called and spoke with Nancy first.
I asked information on getting a consultation, insurance and cost. She was a little hesitant
to answer. I asked if Dr. N is fee for service or accepts insurance. She stated fee for service and would be considered out of network. She asked for my insurance information. I provided her with it. She stated that the hospital and other services would be in network. She stated the consult fee is normal a consult fee 300 to 400 out of pocket. She stated that with my insurance plan that they can bill for the surgery and get paid and they (Dr. N) normally does not balance bill afterwards. Office visit would be billed at normal price out of pocket. Nicole contacted the next day to gather information and scans. I’m waiting to hear from them. I think they are familiar with my plan and know they can collect the fee from the insurance for surgery at the hospital as a out of network Dr. I really do not know if any of the above is true. Some insurance plans have agreements on what they will pay out of network doctors that are more appealing for the doctor than other plans. I’m waiting on the consultation appointment and further exploration on the insurance and payment. I’m interested on how your consult goes with Dr. H. I have one set up with him. I do not know to much about Dr. H and a little about Dr. N. They both seem like great surgeons for E.S. from what little I have read. You could call and try and get a consult appointment set up just for a 2nd opinion only, with no treatment needed. Stating you do not have to have surgery if you cannot afford the procedure while your waiting on the insurance decision. Best wishes @Kit_Cat .
@Rex - I am a patient of Dr. Hepworth’s. He is very experienced with vascular ES & one of the pioneers of a type of surgery to do IJV decompression. In “the olden days” (& occasionally in the present), his tactic was not to shave C1 but to move the IJV away from C1 once the styloid was out of the way. This kept the full integrity of C1 intact & allowed the IJV more space to reopen naturally. Besides the styloid/C1 combo, there can be other soft tissues that contribute to the compression. Things that members of our forum have experienced contributing to IJV compression are the accessory nerve, other vascular tissues, scar tissue, lymph nodes, or muscle (most common = SCM or posterior digastric).
We have 5 surgeons on our list who routinely do IJV decompressions along w/ styloidectomies - Dr. Hepworth (CO), Dr. Nakaji (AZ), Dr. Cognetti ¶, Dr. Costantino (NY) & Dr. Damrose (California). Each doctor has his own surgical strategy when it comes to IJV decompression so sometimes smaller sources of compression than the styloid/C1 combo are missed/neglected & revision surgery eventually becomes necessary to improve the initial surgical outcome. In most cases, however, these surgeons are very thorough, but patients w/ cases such as yours can need follow-up surgeries to deal w/ vascular compressions lower in the body such as that found with TOS.
I totally understand your reasoning & agree w/ your decision not to proceed w/ TOS surgery by the doctor you saw initially. There are some excellent TOS surgeons in the US, & we have several members who have had good outcomes from TOS surgery so you may be able to get the names of other surgeons from forum members.
Thanks @Isaiah_40_31 . That some very good information that I was looking for. Do you know by chance what scans and test protocals Dr H likes to see prior to surgery besides CT W/WO and MRI W/WO? Where do you see compression/distension on the CT? Is it down by the collarbone? I do not know what I’m looking at when it comes to vascularature. The last ENT I saw after he reviewed my CT did not say anything about it. I showed him a couple of the images posted above with the compression on the right side and he said it seemed normal to him. However he wanted copies of the 3D rendering, so he pulled out his phone and took a couple of pictures. He said he is having a neuroradiologist read the scans. He placed the pictures he took on his phone of the scan in his tx notes. He also diagnosed me with vascular eagles. He seemed to be a good MD/ENT. Supposed to be one on the top is this area. In his tx notes he had the radiologist measure the length of the styloid. I could have given him that info. Anyway my point is I do not think some DRs look at 3D rendering themselves. He only does intraoral approach, so that crossed him off the list. And thats when I found you all. How awesome!!! This is weird for me.
I’m a very dizzy introvert, don’t do social media. And here I’m typing away.
Something theraputic about it I guess. Comradery!! Thanks again for everything…
Sounds sensible to hold off on TOS surgery for now, & to explore a vascular ES diagnosis first…sounds like you could possibly has vagus nerve irritation too if you’re getting blood pressure spikes, we’ve had quite a few members with this…
Hi @Rex, thanks for your response and the information! I had also spoken with Nancy and found her to be a little bit more helpful, although I’ve only spoken with her once or twice and all my other interactions have been with Nicole. I think you provided me with more information than they have though, so thank you! I do agree that Dr. H and Dr. N both seem like great surgeons for E.S. I just definitely want to make sure I choose the right surgeon (like all of us!). Thanks again though and best wishes to you also!
@Rex - Dr. Hepworth only needs a CT scan w/ contrast. He doesn’t need the MRI but if you already have it, including it with your CT scan is a good idea. When you get a consult appt. w/ his office, it will occur in 3 parts: First meeting is usually w/ his NP Alison Love. She’ll go over your imaging & will refer you for a vascular ultrasound where the rate of blood flow through your IJVs will be measured (cm/second) at various points along each IJV from skull base to collar bone. After you have that done, you’ll have your appointment w/ Dr. Hepworth to discuss the results & hear his recommendations. Since you’re coming from outside of CO, you can request the process to be done w/in the same week i.e. Alison on a Tues, US on Wed, & Dr. Hepworth on Thurs. My appts ended up working out where I had to stay for a week as Dr. Hepworth had no openings the same week I saw his NP & had my US, but at least I didn’t have to travel back home then back to CO. Thankfully I have friends in that area who invited me to stay with them for the week.
Your left IJV looks to be your dominant IJV. It’s much more “substantial” than the right one. Many people have a dominant & non-dominant IJV vs two that are equal.
In this last image from the back, it looks like there is minimal space between styloid & TP of C1 on the right, however, the angle of the image makes it impossible to tell whether that is a correct assumption or not. The fact the R IJV is kind of wimpy could also indicate it is compressed between styloid & C1.
This is actually very interesting information from the standpoint that the ENT didn’t see evidence of vascular compression yet diagnosed you w/ vascular ES. Very curious. I’m glad he cared enough to take pictures of the 3D images you showed him & plans to share them w/ a neuroradiologist. I had my IJV compression diagnostic scans done by an interventional radiologist, & he misdiagnosed me as being fine even though he seemed familiar w/ ES, & it’s propensity to cause vascular compression. It was one of our forum members who helped me w/ my 3D images & showed me the IR was wrong.
You’re correct here. A lot of doctors feel they can see more by looking at the CT slices & that 3D images aren’t as valuable. I saw a chiropractor recently to whom I showed the 3D image of my IJV compression, & he commented that it looked “cartoonish”. First time I’ve ever heard someone denigrate a 3D image in that fashion!
The timing of God’s direction is always perfect!
I was actually in the same boat as you when I joined this forum in 2014. I had never joined any type of social media or chat group so was way out of my comfort zone, even in creating my screen name. I prayed for what I should call myself & God brought Isaiah 40:31 to mind. It was perfect for this forum!! There is something therapeutic about being amid a group of people who TOTALLY understand what you’re going through & can help support you along your way. We’re very glad you’re here, Rex.
Thanks so much for the information. I was looking for the process of Dr. Hepworth taking on new patients. That is really helpful. Does he have someone specific that does his ultrasounds or can it be accomplished elsewhere? I already set my consult up with Allison ( a couple days ago) toward the end of June to get the ball rolling. I would have to wait till late Oct. if I wanted it with Dr. H. I was questioning if I made the right choice but it sounds like it was a good decision now.
As far the ENT’s diagnosis. I presented him with my laundry list of symptoms which he did not look at. He told me the symptoms could be for anything. So I told him some of the main symptoms and they got tired of hearing about them and moved on. ( he was running over 1 hour late). He did do a complete comprehensive exam. He offered surgery and said he will get back to me after neuroradiology review of the scan. I was surprised when his notes posted and had the diagnosis, the pictures of the scans he took on his phone and symptoms from my laundry list validating the diagnosis.
3 D rendering. How can you not like 3D rendering. You are handcuffing yourself without them.
The software for CBCT that I was used to using offered 4 boxes(views) on the screen and as you progressed through the scan in one box the rest followed. So you can be on point in one plane, while seeing the other planes in the other boxes including 3D if that is what you selected. Big game changer.
Thanks for the reads on the scans. I appreciate it. Quite a ministry you all have going.
@Rex - Dr. Hepworth uses Health Images (there are several locations in Denver) as they know his ultrasound protocol. It is very specific & other imaging facilities have tried but always seem to fail to get it right, so it’s best just to get it done after you see Alison. She’ll refer you to Health Images, & they will call you to set up either a same day or next day appt. (make sure you let Alison know you’re not sticking around in CO & need the appt, ASAP).
You will need a follow-up appt w/ Dr. Hepworth to discuss the US results so DO NOT LEAVE the office after seeing Alison w/o making your next appointment. You can even try to get it set up this coming week so it’s not booked as far out as it will be if you wait till you see Alison to make the follow-up. Your follow-up w/ Dr. Hepworth can be a telehealth appt so you won’t have to travel back to CO again.
The US appt. will take 20-30ish min., & Dr. Hepworth’s ofc will usually have the results w/in 24 hrs. Health Images will send you an email/text once your results are ready so you can see them, too.
DO NOT LEAVE Health Images w/o getting 2 copies of your US on CD (they don’t charge for them) that way you’ll have a couple of hard copies 1 for you, & 1 in case Dr. Hep’s ofc somehow doesn’t get them.
It’s for the reason you stated (symptoms could be anything) that we suggest our members only present the most bothersome symptoms to a given doctor. There are too many doctors who stop listening when the list gets too long.
That’s pretty a pretty amazing response on the ENTs part. Sounds like he was listening better than you thought! Even though you’re not planning to go to him, I give him kudos for offering to help you!
This forum is under the umbrella of Ben’s Friends & is one of about 50 rare disease & syndrome support groups that BF hosts (https://www.bensfriends.org/history/).
I’m happy to have been of some help w/ the scans. I’m pretty untechy so can’t convert anything to 3D, but I’m slowly learning what to look for in 3D imaging to help our members better understand what’s going on. We’ve had some very skilled 3D image readers here in the past, but most are no longer active on the forum. There are still a few who “lurk” & pop in occasionally though.
Please keep us posted as to how your appt. goes w/ Alison & how things progress w/ Dr. Nakaji’s ofc.
And I agree with 
