I was just recently diagnosed with possible ES in the past couple weeks by my ENT. I have yet to see my results from the CT scan, so I don’t know yet if I have elongation of the styloid bone or not. However if I make some slight corrections in my body like dropping my shoulder and raising my head slightly to the left I get relief from the poking inside my mouth behind the tonsil, which I do not have. I am curious if anyone has had any success with trying the Blair correction of the upper cervical of the head and neck before surgery? I have done my own research and of course chiropractors recommend it prior to seeking out surgery, but I’d like to hear what people have to say that have experience with it as well. I am a massage therapist myself and have been massaging the styloid tendon everyday since I was diagnosed, I have also felt a reduction in the styloid tendon and the styloid bone poking me in the mouth as well. I want to be positive that the upper cervical correction will work considering my results already.
First off, you do not need a CT w/ contrast. It won’t show nerves but is used if there is concern about vascular constriction. From the symptoms you’ve mentioned, it does not sound to me like you have vascular compression/constriction. (Caveat - I am not a doctor). It does sound like you have irritated nerves - the vagus nerve (throat & chest pain) in particular & possibly the accessory nerve (shoulders). Up to six of the 12 cranial nerves in our bodies can be affected by ES thus producing diverse & potentially far reaching symptoms - from skull, face, ears, neck, shoulders through chest, heart, blood pressure and into the gastrointestinal tract. I have been recommending a series on youtube called Two Minute Neuroscience. There is a two minute video for each cranial nerve which highlights its location, function & dysfunction & is very informative as far as ES symptoms go. The six nerves in question are - facial, trigeminal, glossopharyngeal, hypoglossal, accessory & vagus.
Additionally, the internal/external carotid arteries & internal jugular vein can become compressed though this is usually an intermittent problem based on head/neck position.
As far as the Blair correction goes, most people have found that chiropractic care or ultrasound guided injections of lidocaine &/or cortisone provide temporary relief of ES symptoms. Chiropractic care, especially w/ active neck adjustments, can be dangerous as the styloids/calcified ligaments can be broken & create even worse symptoms.
The massage you’re doing is likely temporarily alleviating some of the inflammation in the area & that is why you’re noticing improvement when you do it. Unfortunately, the only cure for ES is surgery - the removal of the styloids &/or calcified stylohyoid ligaments - whichever is causing your symptoms. ES can be caused by calcified ligaments in the absence of elongated styloid processes. There is one doctor listed in your state, but he has only diagnosed ES not done surgery. The type of doctor to look for is a skull based ENT, maxillofacial or neurosurgeon. These are often cancer specialists. Other members from your state have traveled to CA to have ES surgery as there are several doctors in CA (including Dr. Hussein Samji who is the most experienced ES surgeon on the list). Dr. Ryan Osborn & Dr. Dinesh Chhetri in Los Angeles are other doctors who’ve done successful ES surgery for some of our members. There is also an excellent ES doctor in Phoenix - Dr. John Milligan. I would recommend you contact one of them if you’re able to travel for consult/surgery.
I hope this helps.
Thank you for the information, exactly why I asked. I will take the advice and go see a professional before I take any ideas into my own hands. I have looked up the Dr’s off the list and Dr. Samji looks to be the most qualified so I will call his office to set up an appointment. Thank you again!
Sounds good. Dr. Samji is the BEST! (in my opinion ). You might get a quicker response by emailing his med assistant - email@example.com.
Already did! I had my ENT send over my CT scans this morning.
FANTASTIC!! Glad you’re so on top of this!!
Hi ESinLV I too was recently diagnosed with ES. I see a osteopathic doctor who does massage and acupuncture. He does not manipulate my neck but offers some relief from symptoms for a bit with his other techniques.
I have recently contacted Dr. Samji as well and am hoping to get a consult with him… although I am a Kaiser patient.
Let me know how things go for you.
Hi JennyB ~
We have had a couple of other forum members who have Kaiser but who elected to go out of network to have Dr. Samji do their surgery(ies). There is one member up in Sacramento area who had ES surgery through Kaiser there. She hasn’t posted much since having surgery so I don’t know what her post op results are. Another member w/ Kaiser paid the out of pocket for surgery w/ Dr. Samji then pursued Kaiser for payment. I know that her appeals went up to the state level but never heard the final outcome. Kaiser is a “tough nut to crack” when it comes to getting them to “pony up” for an out of network doctor. Dr. Samji does offer a “cash” rate that is substantially below what he charges if insurance is billed, however, the cost for ES surgery is still substantial.
That’s what I have been reading. My Kaiser ENT recommended I see Dr. Bryan Fong in Walnut Creek (not sure if anyone has had any experience with him here) as he has had some experience with ES but I don’t see him until the end of March. I heard from my ENT it would be an intraoral procedure if I wanted to pursue surgery. I don’t have severe symptoms. They are bothersome but sometimes seems to really fade into the background. I’m not sure if surgery is really recommended for everyone with ES or of it is more of a case by case situation. I have calcification on both my right and left ligaments. But I haven’t really been told more then that by my ENT.
Thank you for the information by the way. Kaiser is certainly a beast to contend with when it comes to getting them to pay for out of network services. But I appreciate your insights on possible cash discount with Dr. Samji. I have contacted him and am hoping to hear back soon. I would at least like to get a consult with him as he seems very knowledgeable, much more so then what Kaiser is offering me.
Ive been getting chiropractic, OT,PT, acupuncture, injections, the works for decades as I have ongoing neck instability (hypermobility)and my occipital area being out often gives me some pretty intense headache pain and tight muscles including TMJ issues. I do get active adjustments as its the only thing that helps. I just was diagnosed in December w ES and scheduled for surgery with Dr. Samji in one month and did travel from Seattle for consult. I had the worst pain flair to date in Dec that prompted me to get a CT scan after seeing new neurologist for injections who brought up eagles. This blog helped me to figure out what next steps were and get the confirmed diagnosis. Im doing my left side first. I did notice last week, some shooting pain on the right I think due to positioning. My pain started on the right and is longer styloid process. I had not thought I had positional symptoms but then again so used to feeling shooting pain, I think we sometimes dont register it anymore after having the symptoms for years. Just a thought.
As for chiropractic and active adjustments, I imagine it might depend on your CT scan and where the styloids are pressing against and whether it puts you at high risk for issues from active adjustments. The past 2 months I have noticed that massage in the left side of neck kick up symptoms so my OT and massage person has been told to avoid the area. I had a steroid shot a few weeks ago to try and calm down the area pending surgery.
I have no doubt chronic pain caused by Eagles causes our upper bodies to tense up and lock up causing mis-alignment in back, shoulders and neck. I will continue to get adjustments in occipital area or back avoiding rest of neck if needed before surgery and have body work in other areas. After surgery, I will avoid chiropractic or consider inactive manipulation. I imagine I will steer clear of chiropractic adjustments after surgery unless absolutely necessary. I have an Osteopathic Dr who specializes in cranial-sacral work and acupuncture who I will focus on after surgery. Its very gentle work and she indicated she can work on scar tissue release at some point after surgery.
I’m glad you have an appt w/ Dr. Fong as it will be interesting for you to compare what he says & his surgical approach w/ what Dr. Samji tells you & his surgical approach. Intraoral surgeries have progressed to a point where a knowledgeable surgeon can fully remove the styloids to the skull base & even the stylohyoid ligaments to the hyoid bone. It is critical that you find out from Dr. Fong how much of the styloid(s) he will remove & if he will remove the stylohyoid ligament(s) (if calcified). If he just removes the tip or a small portion of the styloid(s), that will not serve you well as the styloid(s) may keep growing post op if not fully removed. If your ligaments are at all calcified & left in place, they will likely continue to calcify & another surgery or set of surgeries will be necessary later. Also, find out if he smooths the tip off of any portion of styloid he leaves behind. In intraoral surgery, part of the styloid is often just snapped off. If the rough tip left isn’t smoothed then that can create other problems.
You can watch both intraoral & external styloidectomy surgeries on YouTube if you feel brave. Interestingly, there’s very little visible blood in either surgical approach. Hooray for modern medicine!
Wow, the videos sound very informative, I’m not sure if I will have the nerve to watch them. But thank you for the tips on getting it all removed. From my CT it says I do not have elongated Styloid process but only the ligaments. So perhaps the styloid process then will not need removal only the ligaments.
I want to try Prolotherapy for my calcifies ligaments to see if it helps them. I’ve read that it can help the ligaments stop laying down calcium.
I am curious as to Dr. Fong’s information vs. Dr. Samji. And how their recommendations are similar and or different.
I had not heard of prolo therapy aiding in retarding calcium from laying down on the ligaments but havent read up on it recently. I had alot of prolo therapy in my neck for about a 10 year period. 20 years later I have significant calcifications. I actually wondered if it caused the calcifications but was only a remote thought. I dont think they really know what causes the calcifications…at least nothing in the info Ive read which isnt a huge amount. Im not so sure I want to watch those videos either
Hi JennyB -
What I said about styloid removal also applies to the s-h ligaments. Just disconnecting them from the styloid tips or the lesser horns of the hyoid bone or cutting out a section of calcification will not give a good outcome. They will need to be fully removed. Please make sure that Dr. Fong’s approach would include that.
I would be wary of prolotherapy, make sure you read up on it I have heard not so good stuff about it.
Once the ligaments are calcified I don’t think there’s anything which can help (other than removing them). There are some research papers which mention metabolic disorders as a cause.
Thank you for the information! I’ll be sure to research… I agree however, everything I have read says surgery is the only way to resolve the issues.
I’ve been gone awhile, but needed to comment when I saw that someone is asking about upper cervical manipulation. I have permanent damage because of well meaning physicians who manipulated the styloid process area without knowing that one of the large ES bones was actually broken inside me. I also had a vascular ultrasound tests rubbing against the broken bone and the naive ultrasound tech gave a report of “no cholesterol “. They still missed the *&$#@! broken bone. I don’t want to scare you, but I also don’t want to find out someone ended up like me. As of two weeks ago my doctors told me I am “unique” - a patient zero type of situation. They don’t know anyone who has survived the additional injuries I sustained while waiting for diagnosis. I could have a several experimental “procedures” i.e. surgeries to see if my right vocal fold can be repaired. I don’t want to go down the rabbit trail of explaining it all - I just want to be plead to please be extremely careful. It’s unbelievable how many “experts” only know their tiny box of expertise and then when something outside of that “box “ occurs- they deny what is plainly in front of them because some book in some dusty library told them it can’t happen. Four different chiropractors - two who were ‘NUCCA’ doctors (upper cervical) all saw the bones in my images and they all told themselves it was an “imaging artifact”. Please don’t allow people to manipulate anything within your neck. Doctors are people and they can make mistakes and give bad advice. There a lot of people who will give advice without having experience with this disease. IMHO one to five patients arent enough. Please seek out a doctor with true experience with Eagle Syndrome. I was looking into going to India or China before I found this site and met the lovely people here. If you are from the Seattle area - check out Dr. Jill Ghormley for therapy. She is awesome for pre and post surgical help. She uses cold laser. By the way do not let anyone use cold laser inside your mouth. Another person here wrote to me after they did this. It is not for inside your mouth and can hurt your brain stem if you do so (it’s actually illegal to have cold laser inside your mouth and throat area). Sorry to be blunt. Cold laser helps the damaged tissue to heal and also incorporate scar tissue. My last imaging (three years after last surgeical side) showed no scar tissue - which is awesome. The side affect of cold laser is that your external scars heal to the point of being very hard to see. Frankly I wish my scars showed better so that people would stop asking me to ‘speak up’. I am in the midst of reinventing myself because the damage I sustained has forced me to. It was avoidable. I wish someone had told me to not allow the neck manipulative tests and “therapy” to be done, because the damage was and is quite serious. Unfortunately we are all surrounded by fearful people. My doctors loved me and just wanted to find something to help. But they didn’t know what they didn’t know.
So good to hear from you MusicGeek, but I’m sad to hear about your long-term vocal damage. Was so hoping you’d be back to using that beautiful voice of yours for our enjoyment. I hope whatever path you choose for therapy, your voice is fully restored.
I’ll be praying for that.