@TML - I think you know that I was also a long distance runner for about 11 years until my SI joint & back pain made me quit. I also had serious anterior pelvic tilt & right pelvic elevation which made my right leg shorter. I paid thousands of dollars for chiropractic adjustments, Graston, & ART (active release) therapies all of which would level my pelvis till the next time I ran. I ultimately had bilateral hip replacement because I’d worn my hips out, but the outcome of that is my pelvis is now level always which is curious to me but I’m so grateful to be done w/ the SI joint pain & constant low back issues. That said, I have an L5-S1 disc bulge which can cause pain in my legs & feet, but a couple of cortisone shots several years ago has helped minimize that problem. I also have an 11% spinal curve in my thoracic/cervical spine - probably from running & living w/ my pelvis off kilter for so many years.
I’m not suggesting that you need your hips replaced, but just commiserating w/ your pain from an unlevel pelvis & hoping what you’ve theorized above is correct ,& the styloidectomy(ies) & reduction of your greater hyoid horn(s) will help your spine regain a more normal balance/position.
I can’t find it but I remember uploading a paper to the forum months ago about how adding a shoe lift in the shoe of the shorter leg completely reverses scoliosis that is attributed to leg length discrepancy specifically. Even in adults. I think the average time for full improvement was only like 1-2 years of wearing the shoe lift. Glad that yours was sorted out with surgery! Surgeries suck, but so long as they make us human again then it’s a win
Hi @Eric1 thanks for your reply and your explanation on what might be going on. I did have ECA compression and have wondered if scar tissue could still be causing issues as from my understanding, the path of the styloid will inevitably have been worked on to remove it during surgery. Over the last 9 months the pain/pressure I had in my left eye (surgical side) and on the bridge of my nose has been slowly settling which I put down to the reduction in size of my scar which I can see visibly. I understand these are classic carotid symptoms. My surgeon did say the tip of the styloid was touching the carotid sinus which he believed was causing the heart related symptoms, so again this could also still be under compression. A lot of the pain I feel daily is near the Tragus of the ear and generally around the ear and under it. My symptoms include regularly feeling short of breath, palpitations, croaky voice, fast heart rate and I think low blood pressure which to my knowledge could be vagus nerve related. I touched my ear and tragus with a little pressure the other day and went into an instant vasovagal attack with nausea and feeling like my blood pressure dropped. It took a few hours to feel like I could move again after lying down in one position.
I feel for everyone who has been through surgery but continued to have ongoing symptoms! This is horrible and makes us feel like we are less than human when we are debilitated by the most simplest acts of being - like talking and eating or moving our head.
I have a consult with a new es specialist next week so will see what his thoughts are. I also had prolotherapy of my scar tissue yesterday. Yet to see what comes from that. I was very apprehensive of going in near the scar and did have a small vagus attack afterward (with my body feeling a bit more agitated today) but I understand the treatment intentionally inflames the area to promote healing etc. it can take a week or so for this inflammation to reduce.
Have you been able to get a catheter angiogram? I am guessing not to date. How long ago was your surgery? Take care
@Eric1@TML@Isaiah_40_31 i don’t have any comments with regards to the carotid being involved generally for those who still have symptoms post op but for myself, this could be the case. I get chest pain in the middle of my chest at times and tight chested as well as pain down my left arm and in the shoulder more regularly than pure vasovagal attack symptoms. I have attached a few screengrabs of my recent CT and circled some areas where the calcification of the thyroid cartilage is very close to the carotid. I know I’ve shown similar ones before and a few of you have agreed this could be causing compression. My symptoms tend to come when I move my head to the left still, despite not having the styloid, and when I look down, especially when holding something in my left hand at the same time. If it’s not purely hyoid/thyroid related it could be the muscles used for holding something in my hand, like the traps or something near there aren’t firing properly and causing one of the other neck muscles to fire up like the digastric which is then pulling on the hyoid on that side, shifting it and compressing the carotid…. Just maybe
My larynx/throat from the front when I look in the mirror does appear to pull to the left.
@BraveKat I think Dr Costantino removes the digastric belly, but not on everyone, just when it seems to be causing compression… I believe that the doctors who are experienced with VES do check that the IJVs are decompressed during surgery, & will remove fascia etc if there’s still compression, and for the most part the surgery is successful, but very occasionally we do have members who don’t do as well, like for you, and it’s hard to work out what else could be involved. I’m still praying that you’ll get the answers & treatment you need
Hi Jules thanks for your response. That sounds like it could be the issue (though I do seems to have more classic eagles symptoms in my opinion right now) as I was the first patient my surgeon had done styloidectomy on who also had vascular compression, both carotid and IJV. I have an appointment next week with a new surgeon whi does these regularly so will see what he thinks. Fingers crossed for a good consult hope you are keeping well !
Hi @BraveKat I think I am in a similar situation to you, compressed IJV against my CI/Styloid and my ECA is wrapped around the end of my Styloid. It also looks like the tip of my greater horn is also very near or possibly touching my ECA. I also have calcification of my thyroid cartilage. I am going to go through your posts and try to follow your story. Best wishes to you.
@BraveKat how’s that muscle under your chin doing?
I was thinking about the suprahyoids the other day and made a post about exercises for them on the forum. One thing to consider is that the muscle that feels tight and you feel like it needs released, may actually be taught and overstretched. This often occurs with other muscles in the body such as the hamstrings where they feel tight and we try to stretch them for relief when they are actually taught and weak due to anterior pelvic tilt and tight/shortened hip flexors. Maybe it’s worth trying some suprahyoid exercises like submandibular push exercise, shaker exercise, or rapid mouth opening exercises? Physio would likely know which could be beneficial.
Edit: I just realize I’ve already given the tight vs taught speal previously in this chain lol
Hi Rosie, nice to see your post. Sorry to hear you’re going through this too. I’m not sure if anything to date will be useful for you as I still have my symptoms post left styloidectomy. But I have an appointment on Monday with a new specialist. My symptoms are less IJV type, unless I try to tuck my chin in (so likely still involved the IJV) and more carotid/classic eagles. I get a lot of pain down the left side of the front of my throat. Sharp stabbing pain that radiates up under the chin which I can also feel on the left back of my throat near the tonsil, despite not having the styloid. I get a lot of heart rates pains (I’ve described as angina for many years but basically pain in the shoulder, left arm, hand, left chest and more recently centre chest and back, as well as perspiration when it’s bad and feeling like my heart rate is out of control - fast but also erratic.)
The pain also shoots up to my ear and into my jaw and ear.
I’m sure with what you have pointed out in your ct scan that you must be having some similar symptoms?
Hi BraveKat, it must be hard to have gone through surgery, to still be having issues. I have very similar symptoms with my throat, pain in front/side left, very tender to touch, trouble swallowing, especially liquids. I did have nerve pain under my jaw, but that has settled a bit. I have ear fullness/pain & and a strange pulling sensation at the back of my nose, either IJV compression or ECA or both I assume. I also have a nerve that strikes across my forehead, that I feel comes from the back of my neck. I hope your appointment goes well next week and you manage to get somewhere. Its such a hard slog to find anyone who understands the whole situation. Its physically & mentally draining and you just feel your whole life is being put on hold. Best wishes and thank you for your reply.
hope you are keeping well !