A few years back I saw Dr. Hackman for a consult for the elongated styloids only. But now I know that so many of my issues are also due to compression of the left internal jugular vein at the C1 transverse.
During a recent visit with a dry needle specialist he did another ultrasound on the left of my neck and found the same venous compression where the vein was nearly closed by the C1. He pulled part of the sterno mastoid muscle away from the C1 area. Though it was uncomfortable he performed another ultrasound and saw the vein nearly opened at the point of compression. I was amazed. And at that point felt a rush of blood going to the heart area.
With all the conservative care I’m doing, however, most of my symptoms have not gone away and am considering who I can see beyond someone like Dr. Hackman. Who should I look for regarding the compression? A vascular doctor, ENT or a neurosurgeon. Someone had mentioned Dr. Costantino in New York. Does he only do the C1 and not the styloid? It’s all very confusing.
I just moved to North Carolina and am having to pull together a new “team” of doctors to treat me. And at this point neurology is almost useless. BTW I’m going through some intense brain fog right now, so writing and composing my thoughts has been difficult.
I’m sorry that you’re having a tough time!
Yes, Dr Costantino does a C1 shave but also styloidectomy & also will look at soft tissue compressions- the SCM muscle is commonly affected by ES/ a factor with IJV compression so Dr Costantino will be aware of this. I know he’s done a partial resection of the digastric muscle which often also causes compression, but not sure if he’s done the SCM as well, but he’s certainly worth seeing.
Dr Cognetti in PA also does the C1 shave & styloidectomy, as well as Dr Lui in NJ.
I hope that you’re able to get an appointment with one of them!
@Mr. Frodo, There’s been at least one research paper link posted about IJV entrapment by the SCM & Omohyoid muscle, & I vaguely recall someone mentioning getting a little shaved off their SCM because it was a key contributor to IJV compression, but I can’t find the post. It’s unusual but the SCM does seem to cause a problem w/ vascular flow sometimes.
Here’s the link to the post with the research article & another one where SCM spasm is mentioned as causing IJV compression:
tesla001, his story is so similar to mine, other than the event that originally set things off. I am convinced that the compression is the issue, not the neurological problems setting things off by itself. When I go and push on something or pull on something, basically anything thing that is shoulder or chest related, it stirs up a whole lot of problems. No matter how much I perform curve correction on the neck the shoulder never seem to correct my problems. I baked something from scratch this evening and that involved a lot of mixing and now my neck is killing me and my eyesight it extremely blurry.
I’ll keep investigating this thing. I have a visit with a new primary care doctor and they usually are helpful with referrals. And I need to have an idea of what to tell him. I have not been formally diagnosed with IJV entrapment by the SCM & Omohyoid muscle. I can only say what I think might be the issue.
You know your body & your symptoms certainly match IJV compression regardless of what’s causing it. Getting the proper imaging (dynamic CTA/CTV or even just a CT w/ contrast) will be helpful in determining what the cause of compression is so you can move forward dealing with it.
The doctors @Jules mentioned are among the most experienced w/ vES surgeries. If you don’t want C1 to be shaved, you may prefer to see Drs. Liu/Mir or Drs. Cognetti/Heller since I believe that’s a given w/ Drs. Costantino/Tobias.
What concerns me the most about the C1 shave is how deep they have to go in and the nerves and fascia that have to be cut into. As I already have bad Dysautonomia and autonomic nervous system dysfunction, the cure I’m seeking through that route may make things worse. There is a Dr. Centeno in Colorado who is really against any of that. Now he is a proponent or regenerative medicines/injections and only advises the surgery as worst case sernerios. But without getting consults with these top-notch surgeons I really can’t make an informed decision. Thanks-
@MisterFrodo - Dr. Centeno’s regenerative approaches are frightfully expensive & almost all of our members who have tried them have come back to say they don’t help & have felt it was a waste of time & money. Removing the cause of the symptoms is what works best. Alternative treatments can often simply be glorified bandaids that offer temporary relief but no true recovery.
I understand the thought of surgery is scary, but it’s worth considering if it will turn your life around & give your vitality back to you. C1 isn’t as deep as you might think. You can feel it w/ your fingers if you put them on the sides of your neck up near the skull base & turn your head right & left.
There are videos by Dr Costantino and Dr Aghayev which explain about the C1 shave and when it’s needed, Dr Aghayev particularly explains how much of the C1 process can be removed without causing issues. So you could look up these articles & get some information if you want- am having tech issues atm so can’t post the links for you- Dr Costantino’s article is in the Doctor Info Section, Dr Aghayev’s I think is in the Research article section.
Yes, I once had a consult and at the time could run well of $13,000 for one session. All out of pocket. I fear nothing will help me until the nervous system can turn off these spasms. Unfortunately physical stress and trauma turns it on and my system is so out of balance. I just had a back massage to work out these knotted muscles and fascia and the inflammation turned on the nervous system jolts in the chest again. I told her to stay away from the neck which the therapist did, but the stress kick started the whole spiral downhill again for me. So the flareups are back. And that nerve on the left side of the neck under the ear and down into the shoulder burns. I still don’t understand what is happening, but I do have upcoming appointments with doctors and medications.
The nerve you’re referring to in your neck under your ear & down to your shoulder is the spinal accessory nerve. It’s one of the cranial nerves that is frequently irritated or damaged by an elongated styloid process &/or stylohyoid ligament calcification. It’s possible that if you have military neck i.e. a straight cervical spine, that restoring the cervical lordotic curve could help reduce your accessory nerve symptoms. I know you’ve been on this forum for some time, but I can’t recall if anyone has sent you a link to this discussion will which be helpful in that regard -
No I don’t have a military neck, just that the C1 is jutted too far forward or bad forward head posture. We’re working on curve correction now with exercises and stretching. Just two months ago I was having uncontrollable nightly spasms under the ribs, affecting my organs, digestion and then jolts in the center of the chest affecting heart rate and rhythm. I didn’t know how much longer I could live like that, until I went to Caring Medical in Florida for help. They usually do neck injections, but the doctor figured to save me money, to do the conservative route and so far it has cut down the spasms by 90%. However now the change in neck posture, pressure has irritated the left side of the neck in pain and affected the nerve going into the jaw and face. All on the left side not to mention the spinal accessory nerve. The CT scan pic shows the elongated styloids which are on both sides, but that left side is the real problem. Dr. Hackman told me in 2024 that this is the one he would be inclined to remove.
The nerve that’s probably irritated is your trigeminal nerve. That’s one that’s very commonly irritated by an elongated styloid. Your styloid isn’t hugely long but it’s quite the dagger & angled to boot. I thoroughly expect getting that thing out of there will help you a lot.
I’m also glad that Dr. Hauser has helped stop your spasms & has also tried to make your visits there more economical. I am sorry, though, that you now have some increased pain. I hope you can find peace about having surgery so you can put this all behind you.
