Over the last 4.5 years, I have visited doctors sporadically. I would generally only see a doctor/doctors for up to three months at a time largely just due to frustration. I would take a long break for several months and eventually my symptoms would be so bad I wouldn’t have a choice but to go back to the doctors and try again. Visiting a doctor and getting a wrong diagnosis over and over is frustrating by itself though. If one more ENT suggested acid reflux, I was going to throw something. How is it that virtually no ENT or otolaryngologist knows what ES is anyway? The worst was an experience many people on here had. A doctor told me there was nothing wrong with me and that I had to “get used to it.”
Recently, I’ve even gotten frustrated with people who know anything about ES. I hope that eventually I’ll meet a doctor who really knows their stuff about ES, but lately everyone thinks they are an expert, which is so wrong. I waited two months to get a panoramic x-ray at my dentist. I called and explained my situation and asked if they could do that. They confirmed. Then when I showed up… “Oh we can’t diagnose you with a panoramic x-ray. We have to do a CT Scan, we will not accept your medical insurance, and it will cost over $500.” Let’s just say I was very angry after that. I knew that of course you CAN diagnose ES with a panoramic x-ray, but if they were too clueless to realize that, I was not going to fight them on it just to go to the trouble to get the x-ray and have them not know what they’re looking at. So I’m back at square one yet again. I have another appointment in two weeks with yet another new doctor (this is number 6 I think). Ugh!
Just a side note though that there are a few doctors out there who are gems. I found myself at a neurologist at one point who was very concerned about me, had me get a tissues MRI (no bones on it though so perfect results), and then told me he personally could not help me but wished me the best and to let him know when I finally got my diagnosis. Nice guy.
Also, even though I’m new to the site, you all are very encouraging. I’ve had a few people in the past couple weeks (who think they are experts) tell me that there is no cure for ES or that I don’t want to get neck surgery anyway because it’s too invasive. I actually didn’t hold my tongue on the last one and told them to try ES for themselves then. Ha!
Anyone else have bad doctor experiences?
Gastro MD said reflux.
ENT said “Look, I can make my throat click when I move my hyoid around with my hand, that’s normal, ignore it.” (I wasn’t moving mine with my hand, it was happening when I swallowed!)
Acupuncture MD - “Just live with it, surgery will cause more problems.”
Chiropractor - “Change where you sit on the couch and at the dinner table so you don’t ever have to look to the left. You just have to modify your lifestyle.”
Garbage. All rubbish. Surgery IS the cure. We all need someone to take ownership of our case and help us!
Oh wow! That’s so funny it’s tragic. I can’t believe they said to change where you sit and don’t look to the left. What a joke! So sorry they said that to you but wow.
I am so sorry to hear of your battles and can completely relate! It is beyond exhausting physically, mentally, emotionally and financially!
Over the last 4+ years I saw 31 specialist (wont list them all but suffice to say it was extensive) before I found and ENT who diagnosed me with a skull base CSF leak. As my story goes I would have a repair, ALL of my symptoms would improve noticably (swallowing, sore throat, breathing, brain fog, POTS, GI fluctuations, tansient voice loss, inability to generate abdominal pressure to laugh, talk loud, sing etc, leg burning and weakness, severe eye pain, home bound…the list goes on). Then the repairs would fail and all would come crashing back in. Thank God my ENT did not give up and diagnosed me with vascular ES. I am awaiting surgery in mid-late August for the styloidectomy (removed from the skull base to the hyoid) and internal jugular vein repair or bypass as needed (one side at a time).
The vagus nerve is definitely being compressed as well as seen with my symptoms…not to be overlooked but typically not seen with imaging. You will need a MRvenogram or CTvenogram to see any vascular involvement. To complicate the imaging you either need a doctor who knows what to look for or a doctor who works with a radiologist who does. I have had countless MRI’s and CT’s that have been read as normal and the ES was clearly there all the time…can’t see what you don’t know to look for.
As you said there are a few gems out there and definitely worth keeping in touch with. Your neurologist sounds like someone who is willing to learn from you - awesome! Can you message him/her through a patient portal and ask about ES? I did that my my neuro who was a great support online, sounds much like yours.
As for a different ENT/skull base surgeon the doctor list on this site would be a great place to see if there is one in your area and if not would definitely be worth traveling for. Others will chime in here…
Your preserving attitude will serve you well. You know your body better than anyone and definitely know when something is not right, don’t stop until you are find the right doctor. Keep the good and leave the rest behind. Hang in there!
Beyond frustrating, I feel for you! So many members have had similar experiences, sadly. I was lucky & got diagnosed quite quickly by a junior doctor(from a panoramic xray)- the consultant agreed but wouldn’t recommend surgery- he told me he’d only operate if I became suicidal with the pain. I asked him for painkillers & he said “why?”!!! He didn’t believe in vascular ES, luckily was happy to refer me to a more knowledgeable doctor I’d found out about on here, had a CT scan which showed bilateral jugular compression! I had 2 surgeries, with great results, so it is possible!
If you can see someone on the Doctors list- in the Doctors Info Section, the 2019 one- then it may save you wasting any more time.
Good luck, thinking of you & a big hug!
Here are the names & contact info for 2 doctors in your state who are on our US ES Doctors’ List:
•Dr Elizabeth Guardriani, University of Maryland Medical Centre, Baltimore 1- 866-408- 6885 (http://www.medschool.umaryland.edu/profiles/Guardiani-Elizabeth/)
•Dr Rodney Taylor, University of Maryland Medical Centre, Baltimore 1- 866- 408- 6885
Here is the post where they were recommended:
Dr. Elizabeth Guardiani and Dr. Rodney Taylor (who perform the surgery together) are fabulous. I highly recommend them. They work out of University of Maryland medical center in Baltimore. They did 2 surgeries for me. I had Eagles bilateral and now have my life back. These two are my heroes.
Now you can stop chasing shadows & get to some people who do “have a clue”!
If you care to travel, you aren’t so very far from Dr. Cognetti or Dr. Newman in Philadelphia, PA.
Wow… 31 doctors. Sounds rough. It’s rough thinking you’re healed and things start getting bad again too. I think I’ll take your advice and get back in contact with my neurologist. Best of luck!
OMG! If you become suicidal and he asked why you wanted painkillers?! Doctors somehow keep surprising me. Glad you got better! I’ve looked through the list and it looks like a real lifesaver. Thanks
Hi Isaiah! Thanks for the specific recommendations. The Maryland doctors look great. But I dunno… being this close to those Philly doctors looks a little too good to pass up. Thank you!
Hi kerileigh13 ~
Personally, I’m in your boat. I’d go w/ the doctors known to have experience, for sure!
I was lucky that I wasn’t in as much pain as lots of members, but in acknowledging that it can be a really painful condition which could potentially make someone feel that bad, the lack of sympathy was quite bizarre!
Has a doctor ever said you might have Glossopharyngeal Neuralgia? Their is Not a definitive test for ES, or Glossopharyngeal Neuralgia. If your Styloid process is long, all that means is it’s a possibility - only 4% of those people have ES - 1 out of 8 doctors know what ES is. It’s as rare as GN. I was told I could have both but also told that ES can cause GN. I opted for ES surgery at Jefferson in Philly. Throat pain returned after 3 months but the pain is less now??? Good luck
Hi Rufus. I don’t think it’s GN. I came across GN a while ago and it doesn’t really match my symptoms. I’ll keep it in mind as a possibility though. Thanks!
Do you have bilateral ES? If you do & only had one side taken care of, the remaining styloid, calcified s-h ligament or both could have caused the return of your throat pain after 3 months. It’s not uncommon for the second side to become more symptomatic after the first is taken care of. If that is your situation, you’ll need a second surgery to remove the remaining styloid/ligament in order to get full & long-term relief.
Hi Rufus. I assume you’re talking to me. I’m not sure what you are referring to about 3 months? I’m not sure what I have. My dentist agrees with me that I have ES, but I’ve been struggling to be diagnosed. I currently have an appointment in a few weeks with an ENT that supposedly works with ES patients. So I’ll try to get diagnosed by him. I believe it’s only on one side but sometimes I’m honestly not sure.
Update: I had an appointment with an otolaryngologist who supposedly knows about ES. It went about as expected.
I gave him a detailed recount of the last 4.5 years and listed off my symptoms, all of which fit perfectly with ES or at the very least is probably styloid related, and nothing. After feeling around my neck and not getting any induced pain out of me, he just completely ruled out ES.
He told me I might as well get a CT scan just to be thorough, but then went on and on and on about how there was nothing for me to do if it turns out that I don’t have ES, which he says I probably don’t, and that I should expect to get in touch with pain specialists soon since I’ve “done the rounds” with doctors and exhausted all other options. He says he believes that I’m in pain but then he had nothing helpful to say. And then he said the famous, “Even if you did have ES, you wouldn’t want to get surgery for that anyway.”
Sigh… I’m telling you. I have good days (when I’m like… fine, this is my life and I can deal) and bad days (these symptoms are getting to me and I’m frustrated and scared and how am I even going to deal with it) and I’m really struggling today. Why can’t a doctor just tell me what’s wrong with me or at the very least admit that they know nothing about ES or styloid related problems?
Beyond frustrating! Feel for you, you wait a long time for appts, pin your hopes on them & then it’s dashed again, especially as you were seeing someone who you thought knew about ES! (Was the doctor on our list? If so could you send me a private message with their name?) If the doctor wasn’t on the list I can only suggest that you get the CT done, see what tge report says & maybe try a different doc. There’s lots of members who have had a long battle to get diagnosed, so please don’t give up & keep trying. Thinking of you…
Thank you Jules! No he isn’t on the list. I learned about another doctor in my area from this site. And when I called to book an appointment with him, they told me he doesn’t work with ES but that this other guy did. I wasn’t sure what to make of that so I just said okay. Thank you though! It means a lot!
Hi Kerileigh13 -
Obviously you know from reading posts on this forum that the doctor you saw is misguided about ES & surgery to help relieve symptoms. I’m sorry you had to put up w/ his erroneous opinion. If he denies that you have ES after viewing your CT scans, I would send a copy to one of the more experienced ES doctors on the forum’s US ES Doctors’ List to get a second opinion. You can have a consultation appt w/ one of these doctors by phone (there will be a charge). Hearing from a doctor w/ lots of ES experience would be helpful for you. Doctors I would recommend you contact for this are Dr. Samji (CA), Dr. Cognetti/Dr. Newman (PA - they don’t work together), Dr. Milligan (AZ, Someone posted that he doesn’t do phone consults, but asking is free) or Dr. Nuss (Louisiana). Here is the link to our current US ES Doctors’ List: US Doctors Familiar With ES, 2019
Bear in mind that it’s not always the length of the styloid process but can be the thickness, angle, curve/twistiness/pointiness that can also cause symptoms. Too many doctors think it’s all about length. Additionally if you have any calcification on your stylohyoid ligament(s) w/ or w/o styloid elongation, that can also cause ES symptoms & is classified as ES as well (some doctors won’t acknowledge calcified ligaments as ES either…).
When you get your CT scans done, ask the radiology tech to include some 3D images. They will make it easier for you to see your styloids & s-h ligaments.
Please let us know what your radiology report says once you have it in hand.
Oh wow. Thank you Isaiah! I had no idea I could do phone appointments with good ES doctors like that. That’s an amazing and reassuring option to have. I’ll definitely do that if I’m not satisfied with my results. Thank you!