New here and hoping you could help me. I have been diagnosed with bilateral elongated styloids and ijv compression. I have terrible blurry vision, extreme difficulty focusing eyes and light sensitivity. Many miserable symptoms including face numbness, ear pain, jaw pain, dizzy,walking on a boat feling, head pressure, tongue numbness, the muscles around my eye area and forhead feel strange, swallow sensations of something stuck. Triangle under throat hurts. Palpations. Gastro issues of acid relux, air burping. One awful symptom is shoulder and trapezius pain. Shoulder feels weak lifting arms. My reaching out is to see if anyone has/had these symptoms and also to ask these questions:
If ijv compression could be seen on ctv, would carotid artery compression of been also visable?
Can carotid compression be missed?
What are the symptoms of CA compression?
Does artey or vein compression affect your legs? My legs feel crampy/nervey/heavy.
Anyone else have really painful SCM, Traps and shoulder pain?
Hi Benjie87,
Welcome and I am sorry for your symptoms, your message sounds like you are describing my case. I am fairly new here also but I think you will find you are not alone, many are going thru similar debilitating symptoms. Regarding your question about your legs, I have weakness, nerve issues and muscle atrophy, I was told it was due to the vein compression. The condition can be a process with such few providers that provide care/surgery. You could ask if they can prescribe a medication to help with the intracranial pressure. Also, I receive botox injections that help with the SCM pain, and I have to get them in my vocal chords from the compression. I did have thoracic outlet surgery decompression in hope to relieve the IJV compression and symptoms, but unfortunately only helped temporariIy. Sometimes TOS and ES can occur together causing the arm issues. I am in the process of waiting for a appointment out of state for further assessment. I hope you can find some relief for your symptoms.
Hi Benjie, I have definitely read testimonials about patients with your symptoms, some more than others, like the ear pain, jaw pain, dizzy, blurry vision, acid reflux, throat pain, and palpitations. Carotid compression can happen, but its quite rare; you can find some postings on it with the search function. The painful scm, traps, and shoulders are very common. For compression issues there aren’t as many Drs compared with classic ES; do you have a preferred area of the country?
Welcome! As both @birdie1 & @Andy89316 have said, your symptoms are those seen with ES. The blurry vision/eye focus issues/light sensitivity, dizziness, walking on a boat feeling, & head pressure can be symptoms of your IJV compression. Facial numbness, ear & jaw pain, odd feeling muscles around your eyes & forehead can be caused by the trigeminal & facial nerves Feeling like something is stuck in your throat is usually caused by the glossopharyngeal nerve but the vagus nerve can also play a role in that & in your gastroissues & palpitations. The spinal accessory nerve is what causes shoulder & trapezius pain. These nerves I mentioned are among the cranial nerves that can be irritated by ES.
Carotid irritation by the styloids can cause stroke-like symptoms. Stroke or TIA symptoms are typically facial numbness which is more likely being caused by nerve irritation. Here is a good article about TIA symptoms which are also symptoms experienced when a person has a stroke:
ICA compression should be visible on a CTV though it may not be noted since the radiologist reading the scan may only look at the veins not the arteries. You could ask to have your scan re-read by the radiologist & ask for the condition of the ICAs to be noted. In some cases having that type of scan done w/ the head in neutral position doesn’t show all compression because head position can impact how the styloids are contacting the vascular tissues. A dynamic CT scan w/ the head turned LR, up/down, etc) can better show compression of vascular tissues in the neck.
Hi @Benjie87, sorry to hear you’re having.such a miserable time. You have some really great responses from fellow members already but I thought I’d just reach out and let you know that I have(had?) all of the same symptoms as you except for the facial numbness. I also had a host of other symptoms and the ones that bother me the most are racing heart, chest pain and arm pain. I think I may have some form of TOS but it was not seen on MRI scan of the brachial plexus. I had surgery 3 days ago and while my Ct scans didn’t obviously show any CA involvement, I was told that the pointy tip of my calcified ligament was sitting at the level of the carotid sinus and I guess pushing into it with movement. I would get (and possibly still getting for the time being) an increased heart rate with certain movements of my head to the left and had trouble even walking a few metres up hill due to sudden increase in heart rate. Even just lying on my left side at night would cause my heart to race uncontrollably. Prior to surgery it was at 150bpm upon waking and another day 180bpm. So I guess from my point of view, you can have CA involvement and it not be obvious on CT. My internal jugular vein was also compressed which was visible on the Ct.
I hope you can find a doctor who is compassionate and willing to discuss possibilities even if they arent necessarily apparent at first glance.
As @Isaiah_40_31 says, the Ct with the contrast dye you had should have shown any carotid artery compression- the dye is introduced & then the images are taken as it moves through the arteries & veins, but it does depend on what was ordered & whether they were specifically asked to look for arterial or venous compression, or both…And also it may be that compression would only occur when your head is in a certain position. But certainly from your symptoms it doesn’t sound like you have carotid artery compression, the symptoms of that are dizziness, fainting, eye pain, heart arrythmias (which can also be caused by the vagus nerve being irritated), and stroke like symptoms.
Was the doctor who diagnosed you very knowledgeable with ES, who did you see?
“dizzy,walking on a boat feling, head pressuremuscles around my eye area and forhead feel strange, swallow sensations of something stuck.” “Shoulder feels weak lifting arms.”
I’ve got these symptoms you mention and elongated stylohyoids on both sides and 50% and 70% IJV compression. I also just feel exhausted and heavy headed, like my eye muscles just want to close, like they are heavy and sleep is not restorative. The heaviness of your arms and legs are very likely connected. I can’t raise my left arm past parallel to floor or open and lift my left hip unless the pressure is off of the left stylohyoid triangle. Even just grabbing my neck skin on left and pulling out to release pressure in the triangle makes those movements suddenly possible or easier whereas otherwise its like there is a weight holding the arm and leg down. It’s all connected to the stylohyoid on the left.
So yes, nothing you are mentioning is odd in this disorder. However, my carotid arteries are fine. It doesn’t matter though, because the venous return issue and compression causes a feedback loop with the nerves in the neck causes problems further afield in the body from a muscle activation perspective. It is not well studied, but just using a dynamic splint lets me use my hip properly…so its a thing.
@Dave - I’m sorry for what you’re going through because of ES. Are you able to travel to the US for surgery? It seems you could really benefit from getting your IJVs working properly again especially the left side.
Dr. Damrose at Stanford University Hospital in California has begun doing IJV decompression surgeries. He’s likely the closest vascular ES surgeon to you.
Hi there, yeah I’m waiting to speak with Dr. Constantino and Dr. Tobias in NY for a follow-up, but it’s just taking a while for the scheduling. I’m just not sure if 50% or 70% is enough compression for surgery or not. I hope it is because this is brutally exhausting. Seems like no amount of sleep is enough. Thanks for your thought! I can see you do a lot to help people here. Have you had surgery?
@Dave - @Jules & I are the primary moderators on this forum. We both had our surgeries about 10 years ago. I just had a 3rd surgery to decompress my left IJV as my first two were done by a surgeon who doesn’t acknowledge that the styloids can cause vascular compression. I had my surgeries before I knew much about vascular compression myself.
I’m glad you’ve been in contact with Drs. Costantino & Tobias, & I hope you get a consult date soon. Your vascular compression at 70% is certainly high enough to warrant a discussion about surgery. I expect even 50% does, too.
I hope they can help you @Dave ; I had bilateral IJV compression & was feeling pretty rough before my surgery, so I can sympathise with you…my first surgery was done on the worst side & it helped massively! Hope you don’t have to wait too much longer…