I had the opportunity to look through @stuuke ‘s imaging. See attached annotated images. I’ve attached the first four images here, and will attach the remaining four images in a following post.
Both styloids are well under 3cm in length (not that it really matters - they are still causing problems)
Regarding the IJVs - both are compressed by your styloids above the level above C1 (between the level of C1 and the skull base). However, C1 also compresses your right IJV. So in other words, both your styloids would need removed at the skull base, and particularly the right side of C1 could be shaved to open your IJVs up.
Further down at the level of the hyoid greater horns - your left greater horn is in contact with your left ECA. There doesn’t appear to be any compression in this neutral position but hard to say what’s happening with head turns. Unfortunately, although your CT involved head rotations, the contrast wasn’t very strong during that phase so I was unable to really get a good idea of whether the greater horn was causing ECA compression or not. At this level, I also spotted what appears to be a small pocket of calcified lateral thyrohyoid ligament on your left side, in very close proximity to your left greater horn. Not sure if this is causing problems or not during swallowing.
Lastly, it appears (if I’m seeing things correctly), that a pocket of your nuchal ligament is calcified between C4-C6. Sometimes contrast gets built up in one area and causes radiantviewer to interpret these build-ups as bone/calcification. However, there are no major vascular structures dead center back of the neck so this is unlikely - even collateral veins would be more to the sides rather than dead center. So I think you have a calcified nuchal ligament.
Thanks TML! I really appreciate it. I think that calcified nuchal ligament is actually part of my neck that broke off and is just floating out there. At least that’s what Dr. Hauser had told me so take that for what it’s worth. I assume I had most of these structural issues before my whiplash/concussion so I still wonder how that immediately caused all of my symptoms. Dr. Cha also mentioned that most of the contrast was faint by the time they took the ct with my head turned. I don’t notice any change in my symptoms when changing positions but I know Dr. Fargen measured some pressure differences.
@stuuke Since you still have pretty significant compression of your IJVs, a follow-up w/ Dr. Costantino or Dr. Nakaji would be worthwhile. I think both of them are more aggressive in their IJV decompression procedures so you might get better resolution with one of them. You’ve likely had enough scans done to satisfy both doctors that you do have compression, though Dr. Nakaji seems to require pressure gradients at a certain level before he considers a patient a candidate for surgery even if there are symptoms & visible compression. I’m not sure about Dr. Costantino in that regard.
I had my appointment with Dr. Hepworth yesterday. He wants me to go to Hawaii in February and have surgery with him, Dr. Hui and one other doctor. He believes that the area causing the most issues can only be reached by going in behind the ear and drilling it out. He said that there’s a facial nerve there and this other doctor in Hawaii would be the best doctor to do the surgery. Logistically and financially I’m not sure it will work for me but I guess I’ll look into it. He also recommended holding off on the venogram and lumbar puncture since they would do a venogram after the surgery. He said I could go ahead with another round of injections if I want.
That’s very interesting! I wonder why the approach is behind your ear? Some surgeons (including Dr. Costantino) do a behind the ear approach just for styloidectomies which makes some sense since that’s where the skull base is. It would be great for you to FINALLY be able to put all your symptoms into the past.
Did Dr. Hepworth say what the area is that is causing the most issues? A trip to HI sounds fun - just not for surgery. Does your wife have school break in February? If so, you could call it a random anniversary trip.
I’m glad that you’ve heard from Dr Hepworth, I had surgery with a skull base surgeon in the UK & he does all his surgeries with an incision behind the ear. The facial nerve is very fragile so is monitored during surgery.
Praying that you’re able to make the right decisions about your next steps…
It has been a while since I checked in. Dr Hepworth told me I would have surgery in Hawaii in February and I never heard back from him. I had cancelled my appointment with Dr. Cha thinking that I would get the venogram after my surgery. I’m not sure why I really need another venogram after having one with Dr. Fargen. I think it’s definitely time to find a new doctor and stop dealing with Hepworth. I’m just exhausted. Thank you to the board regulars that have stuck with me through this journey. These doctors just don’t seem to care. I’m going to read through some of the new threads. Has there been any new breakthroughs or self treatment that people have found helpful?
@stuuke - You’ve been on my mind often but I failed to check in. I’m so sorry . I was thinking about you & the HI surgery in Feb & was hoping you’d had a good outcome. I’m VERY disappointed that there wasn’t follow through by Dr. Hepworth’s ofc in getting you scheduled!!! I know of at least one person who did go for surgery in Feb., & she had to call the ofc & make sure she had a surgery spot on the HI calendar vs just trusting in ofc follow through since we all know that can be very unpredictable.
I don’t blame you for wanting to move on at this point. Such a frustrating situation. The best I can suggest is what I’ve mentioned before i.e. have a consult with Dr. Costantino or Dr. Nakaji. We’ve heard nothing from members who’ve seen the Dr. Cognetti/Heller team so we have no idea what their outcomes are like. There is a new doctor team we’ve added to our Doctors List - Drs. Liu & Mir who’ve provided good outcomes for a couple of our members. I think their newer at doing IJV decompressions but it would be worthwhile getting an opinion from Dr. Liu.
As far as I know there are no, there are no new break throughs or self-treatment options. More people have mentioned going to myofascial release specialists & a few more have had good symptoms results from gentle osteopathic therapy so those are two things you could try.
Please keep us updated as to how you plan to proceed.
•Dr. Peter Nakaji, https://www.scottsdaleclinic.com
Scottsdale Neurosurgery Specialists - 602-313-7772
Works w/ vascular ES, has also done a research paper about shaving C1 process as well as styloidectomy. Does not do online or phone consults,
I definitely didn’t push Dr. Hepworth’s office. I didn’t really know what the surgery was or how our family would manage the time off during the school year or financially afford a trip to Hawaii. He said I’d receive paperwork and more details. It’s still pretty disappointing when a doctor says we’ll schedule you for surgery in two months and then you never hear from them again. He hasn’t followed through on anything since my initial surgery and I’ve had multiple times that I’ve pleaded and begged for him to return calls or emails when I was at my worst.
The latest thing I tried on my own was acupuncture. I did 5 sessions and feel they actually caused my tmj/jaw issues to flare up worse. I’ve also been trying sauna. It seems to help with workout recovery and sleeping but hasn’t helped my ear pressure. I’m still seeing an upper cervical chiropractor and he’s doing atlas adjustments and MLS laser. He said he has another patient that was having their styloid removed in the Kansas City area so I believe we have a local doctor doing it now. They’ve only done a handful of surgeries so far but it’s good to see more options. The ear pressure hasn’t improved but I feel like he was able to get the jaw to settle down. I’ve had some circulation issues going on with other parts of my body. I’m not sure if it’s related or just a separate condition. My hands and feet seem to have poor circulation, I’m losing hair on my legs and wounds on my legs tend to take longer to heal. I’m seeing a vascular doctor next week to see if there is a calcium buildup issue. I’ll have him focus on the legs but will probably get his thoughts on my head circulation issues as well. It can’t hurt.
I think we’ve already hit our family deductible. Lots of health issues going on with the rest of the family as well. I might go ahead and try another Botox session with Dr. Cha and do a venogram. I’m a little worried about how much radiation exposure I’ve had with all of this imaging the past several years.
Again, I’m so sorry for the dismissals that you experienced w/ Dr. Hepworth’s office. That is very unprofessional especially when it happened repeatedly. It sounds like maybe not going to HI worked out the best for your family from a financial & stress standpoint. I am sad to hear that other of your family members are also having health struggles. I would bet at least some of the post op imaging you’ve had done would still be useful for getting an opinion about what else might be going on. Has Dr. Cha looked at any of that & given her opinion (sorry I’ve forgotten whether you mentioned this or not).
Based on the arm circulation issues you’ve mentioned, have you been checked for TOS? In the lower extremities, there are other compressions in the abdomen that can cause trouble like MALS, May Thurner & Nutcracker. If you’re going to get another scan at some point, it would be good to have all those things looked at if you could. Except for MALS (Median Arcuate Ligament Syndrome), the others are due to vascular compressions lower in the body so the vascular doctor you’re going to see might be able to give his/her opinion on those.
Another option is Raynaud’s Disease which is has an autoimmune basis but can be treated w/ medication vs surgery. I’ve had Raynaud’s for going on 40 yrs & have taken a “medical food” supplement which was Rxed by a podiatrist I used to see for the last 15 yrs.
Have you tried myofascial release therapy? If you can find a therapist who’s experienced w/ neck injuries that might be another approach to try for some pain relief. I’m glad the upper cervical chiro is helping to undo what acupuncture did. Going for another Botox injection if the first one was helpful is also a good plan.
Interesting about the doctor in Kansas City who’s doing ES surgeries. If you hear his/her name, please pass it along to us.
Please keep us updated as to what you learn from the vascular doctor & anyone else you see as you work to get your body healed so you can enjoy your family & your life more.
Does your wife have school break in February? If so, you could call it a random anniversary trip. 
. I was thinking about you & the HI surgery in Feb & was hoping you’d had a good outcome. I’m VERY disappointed that there wasn’t follow through by Dr. Hepworth’s ofc in getting you scheduled!!! I know of at least one person who did go for surgery in Feb., & she had to call the ofc & make sure she had a surgery spot on the HI calendar vs just trusting in ofc follow through since we all know that can be very unpredictable.
It sounds like maybe not going to HI worked out the best for your family from a financial & stress standpoint. I am sad to hear that other of your family members are also having health struggles. I would bet at least some of the post op imaging you’ve had done would still be useful for getting an opinion about what else might be going on. Has Dr. Cha looked at any of that & given her opinion (sorry I’ve forgotten whether you mentioned this or not).
