It has been a while since I have posted. For an update: my PCP prescribed me a muscle relaxer about a month ago, and it has been a game changer. It has um, it has been successful in eliminating probably about 75% of my pain. I’ve still had a few flare ups, but overall I am feeling sooo much better than I have been.
I’ve attached a document I’ve brought to my recent appointments that outlines my symptoms and history.
[For extra context: a maxillofacial radiologist reviewed CT scans I got done in 2014 and 2018. He noted “Bilateral elongation/calcification of the styloid-hyoid process/ligaments was observed.” And said that ES should be considered but no follow up about that was done.]
I saw an ENT doctor a couple weeks ago, and he concluded I do not have ES because my pain is bilateral and I don’t have pain in my throat (eye roll). I then saw a neurologist and she spent a lot of time going over my symptoms, but I left that appointment feeling very discouraged as well. She also doesn’t think I have ES because I don’t have throat pain and because my pain is dull and achy vs sharp. She wants to just treat my migraines via a beta blocker. I have reservations about adding on daily medication because I’m only 26, and I have 4 daily medications I’m on (all psychotropics). I just don’t want to be continuing to add on more medications. It feels like treating the symptoms rather than identifying/addressing the root cause.
She did say that I should only be taking the muscle relaxers as needed, and
shouldn’t take it regularly (for more than a couple weeks) because my body might develop a dependence. But it’s the only thing that has helped me so I’m not sure what to do.
She ordered a brain MRI with and without contrast but said she expects it to be normal. I asked if we could also include my neck, and she said no because insurance won’t cover that unless I do, 6 months of physical therapy. (Is this true???)
My primary care doctor put in an order for a CT of facial bones with contrast. I don’t know what the right scans are to ask or advocate for. My PCP is great and understands the nuances of dealing with rare chronic conditions. He said once I get my CT scan done that he will see if he can pull any strings to get me in to see Dr Hepworth since he is located in the same area as I am.
Im just feeling discouraged and confused, and not sure what to do.
@Rlr286 - first off, any doctor that tells you that you don’t have ES because a certain symptom or symptoms isn’t/aren’t present is WRONG!! Not everyone gets a sore throat, not everyone gets pain that’s “sharp”. Dull, achy pain is vastly more common w/ ES. Good job “sticking to your guns” not treating your migraines w/ beta blockers. It really sounds like they could be related to ES & until your styloids are shortened, they will continue to be a problem. If your PCP really wants to help you, ask for an Rx for Plavix or Brillinta, which are blood thinners. If you have vascular ES, taking a blood thinner should reduce the intensity of your migraines w/in a couple of weeks.
I think the neurologist is wrong to tell you to stop the muscle relaxant. If it’s helping you that much, continue to use it. I think the likelihood of you becoming dependent on it over the short duration you’ll be taking it (most likely months vs years) is low & it’s worth the risk because of the relief it’s currently giving you.
Dr. Hepworth is currently taking new patients so you can call his office & schedule an appt. (probably in April or May at this point) w/o a referral unless your insurance requires a referral. •Dr. Edward Hepworth, IMMUNOe, 3150 E 3rd Ave, Denver, CO 80206 (303) 224-4711 https://www.centura.org/provider-search/edward-hepworth-md
Regarding the scans, a brain MRI w/o contrast isn’t likely to be very helpful, but if your insurance will pay for it, then go ahead & have it done. The CT of your facial bones is also not going to be helpful because your pain is being caused by nerves which are irritated by your styloids (mostly likely trigeminal & facial nerves) & CT scans w/o contrast won’t show soft tissues & even w/ contrast they don’t show nerves. You would do better to get a CT scan of your neck from skull base to hyoid bone w/ the purpose of re-evaluating your styloids since it’s been 3 years since they were noted. There’s a good chance they could have grown more in that time, & they are most likely the key cause of your symptoms.
If you want to check for IJV compression (as a cause of your migraines) then request a dynamic CTA of your neck especially up near the skull base (that’s a CT scan w/ contrast that looks specifically at your veins/arteries). Dynamic means they’ll do the scan w/ your head in various positions since vascular compression doesn’t always show up when the head is in neutral (i.e. looking at the ceiling). I hope your PCP is willing to change the CT order so you can get the CT that will give you the most helpful information. You can also refer your PCP to this site. Though he can’t join the forum, he can read all the posts here. It might be very helpful for him. You can also print off or email the links for these two posts which @Jules wrote & give them to him:
I think @Isaiah_40_31 has covered everything! So sorry that you’ve been brushed off by your ENT; it’s good that your PCP is interested & helpful so try not to be discouraged & use the as a resource. Hopefully you can get the order for the CT changed, and get a referral for Dr Hepworth, it’s great that he’s close to you! Keep strong, you have an original CT report and symptoms of ES, so you’re half way there!
Thank you Isaiah. This is really helpful information for me to know and to pass along to my PCP. I will also ask him what he thinks about the muscle relaxers. He previously told me he has some patients with chronic pain (like fibromyalgia) who take them for longer periods of time because they are so helpful to them, so I think he’ll be ok with me continuing them. I’ll also talk to him about modifying the CT order.
I didn’t realize Dr. Hepworth is accepting new patients again!! I’ve called 2 times today but haven’t gotten through yet. Will keep trying
Thank you so much for your detailed reply! I can’t express how grateful I am for this site and community.
@Rlr286 - Dr. Hepworth’s phone lines are probably “red hot” today since they were likely closed for a few days for the holidays. I recommend that you try calling at the end of their work day i.e. 4:30-4:45 pm as the phones should be quieter then.
Thank you! I finally got ahold of them this morning. I have an appointment with Sarah on May 6th and another on May 9th with Dr. Hepworth. They also put me on the waitlist for any cancellations that may occur before then. Very excited!
@Isaiah_40_31 thank you again for your helpful response. I went in to see my PCP last week. He is very busy but scanned the links you sent. We also went over your reply in this thread and he is was happy to order the dynamic CTA of neck with and without contrast. He said he suspects insurance will call him with questions but that he will do his best to present the case. Luckily, elongated styloid syndrome—which I have been diagnosed with—is an ICD code (which I didn’t know and it looks like it was added very recently) so he was able to add that to my chart for insurance.
He also recommended I try physical therapy. I’m planning to do so as I think my neck muscles have become very weak and unstable.
He agrees that continuing the muscle relaxers is the right thing for now since they’ve been so helpful. He also said he thinks propranolol (the beta blocker the neurologist prescribed) could be a good medication to try, but he understands my hesitancy. The reason for his tepid recommendation is due to me having a very high heart rate—118 bpm at my last visit, but usually it’s around 99—and propranolol does lower heart rate. The high heart rate is a new symptom for me that has arisen in the last 6 months or so and is quite distressing as I almost always have heart palpitations. I have had high blood pressure readings at doctors offices for a few years now as well, but no official diagnosis of hypertension. I’m still undecided about the propranolol and would be curious what your thoughts are.
For now, I am waiting to hear back about whether insurance approves the dynamic CTA and am going to call and schedule physical therapy appt. I’m very grateful that most of my pain symptoms seem to be 90% under control with the cyclobenzaprine muscle relaxer. I’ve even been able to go a few days without taking any pain free! My facial muscles perhaps have benefited the most (they usually have constant tension and pressure-like pain. Still some pressure but barely any tension!)
Hi, on Propranopol topic in UK this is one of first drugs listed on NHS treatment pathway for migraines. The pathway is a protracted process using cheap drugs and patients are forced to try them all before getting referral to migraine centres and more modern/expensive drugs. Not good for very badly affected patients.
I did try it at request of neurologist I saw in 2022 (who missed CCI/VES completely on scans). In my case I had not only some elevated heart rates but also very slow pulse rates at times (below 60). I still do have occasional low pulse rates, higher rates are much rarer now post surgery. As had low rate this drug did not suit me and they knew could not increase dose. They then put me on epilepsy drug on their treatment pathway which made me feel worse too. At that point I gave up on Neurologists and moved on to Neurosurgeons. They have been better at diagnosing problems & operating to try & help. Good luck & take care. D
@Rlr286 - We have a new member @GodisAWESOME who’s having a similar problem but w/ extremely high blood pressure spikes. She was prescribed metoprolol which is a related medication, & it did help reduce the blood pressure spikes. Propranolol is the preferred medication to help reduce rapid heart rate & perhaps palpitations. Your heart symptoms are most likely being caused in part by the styloids irritating your vagus nerve as it is a major player in regulating the heart & blood pressure.
I’m very thankful to know that your PCP has been interested in your diagnosis & willing to read the information in the links I gave you as well as refer you for the CTA. That’s really fantastic!! It’s also amazing to hear that you’ve been able to go w/o your meds for a few days & remain pain free. ES pain does come & go w/o rhyme or reason, but when it goes away it can be gone for sometime so I hope yours stays away for a long time.
Please be careful with the PT as some of our members have gone that route before surgery & have ended up worse because the PTs they saw were not familiar w/ “elongated styloid syndrome” (ES) & encouraged exercises that were irritating rather than helpful for ES symptoms. A craniosacral physical therapist would potentially be safer than a general PT.
@lilwider - Maybe I’m too type A, but I noticed that the ICD code is for elongated styloid syndrome (vs Eagle Syndrome) which is curious. I understand an ICD code for a diagnosis of elongated styloids which simply notes that a person has elongated styloids, but giving elongated styloids the honor of being a syndrome discredits Dr. Eagle in my book. When elongated styloids cause painful symptoms, they’re no longer simply elongated styloids but earn the title of Eagle Syndrome.
I duly noted that this is a relatively new code as there wasn’t one when I was diagnosed & my surgeries were billed as craniectomies.
Interesting @Isaiah_40_31 that yours were billed as craniectomies. The site does say that Eagle Syndrome is an approximate synonym. Not sure the specifics of the ICD code though
Thank you! This is helpful information and I do hope the heart symptoms are due to ES and that vagus nerve has been impacted (and will be helped with ES treatment). I deal with a lot of symptoms related to the vagus nerve (and have for a while now), and it is a relief to hear that the stubbornness of successfully treating some of the psychological/physiological symptoms might be due to an irritated nerve.
My PCP also said that if I do indeed have ES (I am very confident I do; he is open-minded but still unsure, which is understable since he doesn’t have a thorough understanding of it yet), he would love to write up a report about it to share with colleagues to help educate them more. Very exciting!! I hope it comes to fruition and that it can help other people experiencing ES symptoms.
Yes, this is what Jules at Dr C office said they use codes similar to what’s going on. There are no codes, but somewhere I read that on this persons Drs report it has a code for Elongated styloids. I was just curious. The new AMA codes came out and I scrolled through 154 pages and didn’t see anything. Sure I could have missed it. I wrote an email to Mark Levine of AMA explaining the condition and a code needs to be created. Who knows if they will acknowledge it- but at least it’s out there
What a great thing you did on behalf of all ES patients, @lilwider. I think because of our forum & others that exist, the word about ES is slowly getting out there in the medical world. It’s time for the existence of a billing code specifically for ES!
Absolutely this need to be recognized! They should be flooded with the requests to have the coding acknowledged for eagles and Venous outflow obstruction
