Hi All,
Been having weird and escalating symptoms for over two years now. I believe it started with a compression flexion neck injury doing Jiu Jitsu in November 2023.
I had some neck issues from a prior whiplash type injury in high school so I was used to getting intermittent stiffness and spasms in my neck but nothing that was ever much of an issue. When I had my neck popped forward this time, I knew immediately it was going to cause a flare.
It was inflamed and painful for about 6 so I trialed chiro and PT, neither of which were helping. It was around the 8 week mark that I started noticing what I described as helicopter turbulence in my head/ears when I laid down at night.
I started seeing a myofascial PT for a more gentle type of therapy and the pain and ear sounds resolved fairly quickly. I went back to my normal life unconcerned about it.
About 8 months later I started noticing brain fog that seemed like it was building day after day and crescendoed in an episode while driving that, at the time, I thought was a mini stroke. I started getting tingling on the left side of my body and thought I was going to pass out. An ER visit at the time was unremarkable and they chalked it up to dehydration or something.
Again, I returned to normal for about a month and then I began having more and more brain fog, trouble concentrating and a feeling of being overwhelmed when shopping in large stores or driving. Started having mini versions of these stroke like episodes where my body would start buzzing, it was very hard to concentrate and a feeling I was going to pass out.
I started having trouble sleeping, constant anxiety that I never had before and started noticing when I’d wake up in the morning I had internal trembling, shaking and a sense that my movements were off.
Activities that used to relax me - hot epsom salt baths, sauna, float tanks - all of sudden made me shake and buzz.
At the time, it never crossed my mind that it had anything to do with my neck and doctors started doing all the usual stuff… full cardio workup, brain MRI, EEG, EMG, EKG, neurologist referral, DAT scan, bloodwork, autonomic testing, ENT and MRA, etc with everything returning normal and three neurologists including movement disorder saying I didn’t have anything neuro going on but at least conceding that this isn’t just essential tremor.
I noticed over time that one of the reasons I couldn’t sleep or was waking up all night was that the helicopter vibration was back in my head at night and has continued to get worse, louder and more disturbing, seemingly by the day.
I think one of the things that really worked against me was my symptoms were more internal and couldn’t be visualized. I would tell the doctors I had intense shaking, especially when waking up in the morning, but on exam they would say I appear totally normal very maybe a very fine tremor if anything but nothing they would prescribe medication for or anything like that.
I saw Dr. Hauser’s videos on YouTube, which I know many of you are familiar with, and that led me to finding a local (Iowa) chiropractor for a DMX. My DMX was the first thing ever to come back positive, saying I have cervical instability in the C4-C6 area and likely craniocervical instability at C1-2. Both indicative of the type of injury I sustained. The chiro mentioned my atlas was shifted forward and to the right, which again matches my injury.
Upper cervical adjustments did not help my symptoms at all but the chiropractor noted on my brain MRI that I had jugular vein obstruction, even though Mayo clinic never noted it. I didn’t fully believe it so I went to Florida and had a dynamic CTA/V done.
Sure enough, the radiologist noted “Calcification involving the right styloid ligament with effacement of the AP diameter of the internal jugular vein between anterior aspect of the C1-2 transverse process decreasing the AP diameter to 2 mm.”
This is in neutral position. When I turn to the right, the jugular opens to 8.7 mm and when turning to the left it opens to 6 mm.
Similarly, the left side is closed to 3.5 mm with noted calcified stylohyoid ligament and C1-2 transverse process. The left side opens to 8.9mm when turning to the right and 11mm when turning to the left.
The doctor in Florida who ordered my CTA recommended I drop my images off to one of the hospital interventional radiologists he works with. I did so and that radiologist actually personally called me, which seems to never happen, and suggested I come in for a catheter venogram.
I was so glad to have someone finally recognize that I might have a serious issue. However, by the time he called I was already back in Iowa and wasn’t sure about making another trip out there and was hesitant to just have another test.
Unfortunately, back home, my chiropractor didn’t seem overly concerned with the jugular compression and had nothing but bad things to say about styloid removal. Mayo clinic seemed dumbfounded when I brought it up with them and they said I don’t show any evidence of CCI and I definitely don’t need a neck surgery. They did agree to give me an MRV but at that point I didn’t trust them to continue my care.
So, here I am with escalating symptoms and it’s been such a rollercoaster I don’t know if this bilateral compression is really the source of my issues or if I have some undiagnosed neurological disorder or if it’s more CCI.
Since my symptoms seem to be worse when lying down and peak during the night, I think it’s more likely the IJV compression than the CCI, though I know they can be related.
I went to Centeno Schultz and had one round of ePICL and PRP and while I’m still early in the recovery (10 weeks), I’ve seen zero relief of symptoms and in many ways I’m worse than baseline, which has me now thinking more about surgery.
Centeno seems to frown on styloid removal as well, saying it might exacerbate CCI. I’m not saying he said that regarding my case, that’s just what I take from his youtube videos.
I have already reached out to Dr. Hepworth and luckily he is only a 10 hour drive from me. However, the soonest appointment with his nurse practitioner is in late August with possible surgery dates going out past the new year. I asked if they would send me for a venogram or ultrasound tests prior to the August appointment but they said they cannot.
I am interested in Dr. Nakaji as well and like that he is a neurosurgeon, but he is much further away and I’m concerned traveling back home post surgery will be more of an issue. And after spending $900 for Hepworth’s consult, I’m not sure I want to do $2500 for another consult, though I certainly would if I need to.
My local ENT did tell me he doesn’t think there is anyone in my area who can handle IJV obstruction but he was okay referring me to University of Iowa. I have an initial consult with an ENT there in two weeks but they also told me their styloid surgeries are booked out until February and I don’t know if they have any familiarity with vascular eagles. Maybe they can at least order me the venogram.
Here is a picture of my right C1/styloid and I’m happy to share as much of my imaging as anyone wants to see.
One of my big questions is, does it seem more like my C1/2 is the issue or is it the styloid. Because Centeno would say its the C1 sliding that is causing the problem but I also don’t have a clear answer from them that tightening the ligaments alone will pull my C1 off the the vein and nerves.
Also, the radiology report didn’t mention anything about the size of my styloids, just that they are calcified so that leaves me unsure whether my styloids are the cause or the C1, though I realize it’s a combo of both.
Any feedback/advice is greatly appreciated and thank you for welcoming me to this forum!
like humming & singing, but variety is the spice of life & you may find cold showers are the most helpful for you. 
