Hey y’all! So sorry to post twice in three days, but I don’t have a single person I can talk to about this.
Does anyone else experience burning chest pain secondary to burning neck pain from their ES? Like the involved nerves in the neck and jaw defer to the chest? Right now, and frequently in the last week or so I’ve been experiencing this. I have dysautonomia and vEDS (and I have two types of neuropathy); I am trying to calm some anxiety about cardiac involvement. I’ve already been in the hospital three times in two weeks and seriously doubt that in 36 hours, my ES is suddenly compressing something new (though it did go from intermittently painful and flared to 24/7 symptoms overnight, which is what prompted me to seek help and led to diagnosis). I can see and feel my calcified styloid process externally because it’s misshaping my face and jawline. The ligament is another story — I can only see that in imaging, but it’s impressive. It takes up my entire jaw and into my neck area. How???
Regardless. I had several EKGs in the hospital AND saw my cardiologist yesterday. While I do have other concerns, I do not seem to be experiencing any emergent cardiac issues nor should I sit up convinced that this chest pain is indicative of imminent death. I just wanted to know if anyone can relate, is feeling or has felt what I’m feeling, and even if it improved after surgery? I’m hoping to hear back from the doc in chapel hill on Tuesday (his nurse left me a message today and I left her one back, but it’s a holiday weekend). Thanks for letting me vent!
Don’t worry at all about asking questions, is what the forums here for, helping each other!
The styloids or calcified ligaments can compress or irritate the internal or external carotid artery, which I believe can cause pain up into the face & eyes, and also down to the larynx, so maybe it’s causing pain down to your chest? Another possibility is that the styloid is irritating the vagus nerve, which can cause heart arrythmias, and there are some research articles which conclude that vagal nerve stimulation can cause angina like chest pain…It’s good that you’ve had the chest pain checked out so at least you know nothing is wrong with your heart, I hope that’s put your mind at rest about that
Quite crazy how suddenly your symptoms have worsened when clearly the calcification has been happening a while, I guess masked by some of your other conditions?
I agree w/ @Jules especially about the possibility of the burning chest pain possibly being caused by the vagus nerve. I’ve included a link to an image of the vagus nerve so you can see how it could be a possible cause of burning pain in your chest. Burning pain is one of several types of pain nerves can cause.
I also want to say that you’re welcome to post on here as often as you like. We have some members that post questions & general information several times/day. We’re here for you @slekeille - whenever you need us.
Thank you! This is CRAZY. For several years now I’ve been experiencing (documented!) SVT. We couldn’t figure out why. There was no electrical cause found when we did an EP study in 2018 and we can’t risk another with my vEDS. That said, as recently as six months ago I had such a bad episode (20+ minutes in the 200s HR range) that I had to be cardioverted (shocked) while wide awake in the ambulance on the way to the hospital because they couldn’t get a line for Adenosine or to sedate me, and when the medics called medical control to ask about an IO for meds vs shocking me the doc told them it had been long enough and to move forward with electricity. I spent at least 6 hours on a monitor a few nights ago and everything was fine along with my cardiac enzymes so I’m trying REALLY hard not to let these symptoms cause such severe anxiety that I rush back to the ED again, every single day. I know what’s causing it, I know what’s likely the reason behind these specific pains and I know that as of now I do not have a constant vascular compression—that I’m only experiencing compression when turning my head all the way to the left (which I’m avoiding). I keep trying to remind myself that it took almost a decade for the growth to get this bad and that while my symptoms suddenly becoming constant when they were intermittent for so long means it just finally grew too long/big, it is NOT going to also suddenly grow even bigger in a matter of days/weeks while I find a surgeon and get a plan in place. I have to tell myself that. Otherwise I won’t be able to function at all.
It is nuts that my symptoms became so suddenly worse. Actually, looking back on everything over the years that this likely caused, it’s not necessarily that they’re worse, but rather than they went from being intermittent to constant. I can’t help but wonder if this initially caused my first flare of dysautonomia (common in EDS but usually initially triggered into symptomatic realms by something else).
While the chest pain is NOT constant (thank god), I’m pretty much dealing with 24/7 burning scalp pain, eye pain and ear pain as well as jaw pain, discomfort in my neck and throat, on and off tinnitus, and burning pain down my right arm. I’m 99.9% sure this is all nerve pain, like you and another commenter mentioned. Since I have official imaging confirming my carotid artery is NOT involved (while turning my head to the side presumably TEMPORARILY compresses it, causing syncope, as soon as my head is in a neutral position that stops being an issue) I am trying very, very hard not to be in a constant state of panic.
My vital signs are almost always my normal (for about 7-8 years I’ve had chronic hypotension and a very low resting HR as well as low blood sugar and a body temp a whole degree lower than normal, along with intermittently low SPO2 readings — I have supplemental home oxygen from palliative care). I am so desperate to calm myself down and remind myself that it’s unlikely this will cause a life threatening issue between now and when I get to see a surgeon (hopefully within the next week or two, tops). I’m also terrified of surgery since my entire styloid process and then the ligament are involved and I’m high risk due to vEDS — I know I absolutely have to have surgery but I’m terrified, more so than I’ve ever been for any other surgery before. I just need this horrible part of my life to be behind me, already. I desperately wish an informed doctor had found it much earlier.
I really feel for you- before my first surgery I was starting to feel pretty ill & had some very scary vascular symptoms, I’m UK & it was a long wait for treatment, so I can understand some of what you’re experiencing, although obviously you have the complication of vEDS so that makes surgery even more daunting…I hope that you can speak to Dr Hackman this week & find out if he’ll do the surgery, will be praying that all will go smoothly.
Have you tried any nerve pain medications? One of our members started this discussion recently: Want to make sure nerve pain sufferers like us are aware of this medication - Symptoms and Treatments / Doctor Information - Living with Eagle
Will be interesting to see if the SVT episodes improve after surgery, that all sounds very dramatic being cardioverted in the back of an ambulance…
Sending you a hug
Another thing the vagus nerve is in charge of is anxiety. Your super anxious feelings may be based on your fears from past scary health events & some current events, but I can almost guarantee your vagus is turbo charging your anxiety since it’s (the vagus nerve) so aggravated. I will also be praying for you to see Dr. Hackman ASAP & that he’ll do your styloid removal. He may also have some suggestions to help calm your nerves prior to surgery.
Thank you so much. I am sure that at least part of my anxiety is due to medical PTSD - namely the event in which my superior mesenteric artery spontaneously ruptured and I came very close to dying. I remember how it felt - and I haven’t fully mentally recovered MANY years later. Even my vertebral artery dissection more recently wasn’t as bad (though it wasn’t fun). My anxiety right now is mostly surrounding having a carotid dissection while I’m sleeping, unaware and unable to get help. That said, I know some of this is physiological, as well. Since I’ve had SVT for years and there was always an assumption it had something to do with nerve damage, I have already learned and put into practice QUITE a few vagus nerve maneuvers in order to calm things down. (Some are SO well applied to this need that they can LITERALLY cardiovert me out of SVT into sinus rhythm/sinus tach.) I left another voicemail for the nurse scheduler at Doc Hackman’s practice earlier today. It was almost 3 minutes long. I calmly explained the gravity of my situation and the severity of my calcification, asked if there’s anyway I can send my images immediately upon the receipt of my message, and asked that the doctor be told personally about my message. I said that based on what I’ve read and what the several doctors who’ve seen me since diagnosis told me I am quite certain once Dr. Hackman is aware of my case, he will want to consult with me yesterday and have me in surgery the day before yesterday. I told her that I am several hours away and would love to consult with him virtually but that I am prepared to drive to Chapel Hill with one day’s notice if I need to, and that I know I need surgery ASAP or I will not make it. I know that might sound extreme, but I have to advocate for this loudly. I’ve had too many close calls and with my vEDS, my carotid is already so fragile. I need care now. I hope I hear back on Tuesday!
Thank you for this! I will have to look into it. I am VERY hopeful I’ll be in surgery before being put on meds would even make sense - but I am also not naive. The damage to my trigeminal nerve is very possibly permanent and I might need to discuss this both with neuro and palliative after surgery. My palliative provider comes for our monthly appointment tomorrow, and I am going to discuss upping my normal pain meds for the duration of this ordeal and until after surgery, since my normal pain is so much higher right now that I can hardly focus on anything else. Now that we know WHY we should be able to treat it. I had already been diagnosed with trigeminal neuralgia, in the past, and now we know why there as well. I have two types of neuropathy that I tested positive for in my legs, feet, hands and lower back - and neuropathies are extremely common with EDS in general. It’s all connecting, now. Part of me wonders if (since there’s no certain known cause of Eagle Syndrome) my ES might have been caused by “repeated trauma” to the area - i.e. dislocations of my jaw, constant clenching and my ligaments/tendons having to work EXTREME overtime for 33 years to hold my joints in place. I feel like it’s not an entirely insane hypothesis. Regardless of what caused it, it has to come out! I have to have surgery ASAP so I can stop living in this fear. Right now I can’t drive, I’m terrified to move my head to either side (or bend my neck downwards), I can’t sleep, I’m always anxious… it sucks! I appreciate the support here SO much.
Some of our members w/ the carotid variant of ES have found that wearing a soft neck support collar prior to surgery helped reduce symptoms. If this sounds like an option, you can buy one from Amazon which might be less expensive than going through a medical supplier. The neck collar will limit your range of motion & ability to look down plus helps keep your neck lengthened which may be the best help.
It’s unbelievable what your body has been through! You are a true survivor!
I hope that you hear back straight away from Dr Hackman’s team…it’s totally understandable how anxious you feel and especially based on your past experiences…
My husband had SVT episodes for years, he could sometimes stop them initially with vagus nerve massage but not as it worsened. His was caused by a conduction issue in his heart so he had an ablation done & has been fine for 14 years. It was so scary though, his heart would go at 250 beats per min for hours. I hope that the surgery sorts yours.
Have you got your partner with you at nights? Although obviously they need to sleep too! If you did have to wait a few weeks for surgery would a heart monitor with an alarm reassure you at all?
Sending you more hugs
Yes - I would absolutely recommend going over vagus maneuvers for SVT with one’s EP or Cardio before trying them, as some can be very risky. The ones I do for SVT were taught to me by my EP doc. Def a valuable link, though!
