Hello all, My name is Rick, thanks for taking the time to read my post and I hope to be as much help as I get!
I was diagnosed with ES in 1999 when I was 19, I was working as a helper for a local beer distributor during that summer and suddenly not proceeded by any trauma it felt like something in my throat was tearing everytime I swallowed on the left side. So much so that I opted to spit in a cup instead of swallowing. I was sent to an ENT pretty quickly and after a CT scan I was diagnosed with ES specifically an elongated styloid due to calcium growth on the left side. I quickly learned that if I stretch my head back and to the right it would dislodge and I would be pain free. Not having any other symptoms my Dr advised against treatment unless it became debilitating. So I chalked it up to fun fact about me and moved on. It would happen a couple times a month here and there, often when I was sleeping (usually on my stomach with my head to the side). I’d just stretch and go about my business, it really was no big deal just a minor annoyance.
Over time it happened less and less especially as I started sleeping on my side and back more often and I never had any other symptoms.
Fast forward to about 7 or 8 years ago I started having issues with tooth sensitivity in my bottom left teeth and a metallic taste in that area so I went to the dentist a few times convinced I had a bad tooth only to find no issues. My dentist thought I might have tmj because, admittedly I do sometimes open mouth clench but was flabbergasted as to the cause of the metallic taste. At this point ES had never occurred to me mostly because I had either never knew what could happen over time with ES or I had forgotten, probably the later to be honest. So I just started managing the symptoms as though it was TMJ. At first it was mostly jaw pain the bad taste and sensitive teeth. Over time I started getting migraines and severe neck pain to the point where I was seeing a chiropractor twice a week. I had mentioned ES to him but he didn’t know anything about it and I don’t think he did any research. However he was helpful with the symptoms until I stopped treatment due to the birth of my daughter in May 2021.
For some context it helps to know that I was diagnosed with pancreatitis in 2011 so having delt with major pain and traditional pain killers chose to manage my pain with mindfulness and THC. Unfortunately I tend to overlook and disregard pain and did so over that last few years in regards to what I now know are severe ES symptoms. So I never sought out any other TMJ treatments.
It finally occurred to me in December of 2021 when I had neck pain in the same area and that felt similar to my past ES pain. The pain would occur when I would turn my head to the left in a certain way and persisted for a few days. This of course prompted a Google search and that’s when I discovered all the symptoms of ES that I’ve been struggling with for years. So I arranged to see an ENT to start diagnostics. Now be advised I’m from rural Maine so it’s important to know our medical staff are typically amazing people but are overworked and lacking experience. So as expected when I spoke with the Dr he had no experience with ES and wasn’t sure if any of his partners did stating they would probably refer me to a specialist. He tried to locate my original scans but was unable to unfortunately, however he did arrange for a new CT scan that’ll be happen this coming Monday.
I’m hopeful to find people with similar symptoms who are willing to share their story and wisdom with me I’ve done a little reading here but haven’t seen a similar story so far but I’m sure I could have missed it!
Thanks so much for taking the time to read my story, please know that I’m an open book and happy to answer any questions. Also please let me know how I can help in return for the kindness I’m sure I’ll be shown!
Welcome to this amazing forum. I’m so glad you’ve joined us & YES! Your questions will get answered & you will find kindred spirits here. We do have some members who suffered w/ ES symptoms for 15-20 years before getting diagnosed so I’m glad you got your diagnosis early. It’s pretty remarkable that you’ve been able to “dismiss” your symptoms for so many years & great that you’ve found ways to help reduce them on your own. It does sound like you’ve finally hit a point of “symptoms critical mass” where you need to consider moving forward w/ treatment.
We recently had another member join from your state, & unfortunately, we don’t have any doctors on our list from there. The nearest doctor I can recommend is Dr. Annino in Boston. If your ENT refers you to someone who is familiar w/ ES in your area, we would love to have a name to add for your state.
Info that’s good to know: The type of doctor that usually treats ES is a skull-based ENT surgeon, head & neck surgeon, neurosurgeon or maxillofacial surgeon. These doctors are often cancer specialists. Understanding the type & thoroughness of a doctor’s surgical approach is important. We recommend the external (vs. intraoral) approach as access to the styloids & stylohyoid ligaments is better, & the styloid can be removed back to the skull base, & the stylohyoid ligaments, if calcified, can be removed as well. This provides the best long-term recovery from ES symptoms. Nerves & vascular tissues can also be better monitored & seen via the external approach. I’m including the link for ES doctors at the bottom of this email. It’s important to see a doctor/surgeon who is experienced with ES in order to get the best possible care. Not all ENTs are familiar with ES & only a few who are familiar with it, actually do the necessary surgery to help correct the symptoms.
Welcome to the group! That is a fascinating story and I found it interesting that you mentioned the metallic taste in your mouth. I’ve had a hint of that for years and have just became so accustomed to it, that I didn’t even think that it could be from ES. Thanks for sharing your experiences. My presentation was otherwise quite different from yours, but the many differences and varied symptoms are what make ES so tricky for diagnosis. It never ceases to amaze me the strange sensations and bizarre combinations of symptoms that ES can cause. I hope your CT is helpful! Good luck to you!!
Mine is pretty severe and accompanied by a tingling sensation kind of like touching a 9 volt battery to your tongue. The weirdest part is when I would receive chiropractic adjustments it would suddenly get stronger and these adjusted were in different parts of my body not just adjustments to my neck. My chiropractor and osteopath were flabbergasted. From what I’ve read a nerve in that area is responsible for the back 1/3 of your tongue I believe but don’t quote me!
My glossopharyngeal nerve was irritated during my first ES surgery as it was wrapped around my styloid & had to be unwrapped. The end result was that half my tongue was paralyzed for about 9 months post op (started easing up a bit at 6 months). I could feel my tongue but the motor part of it didn’t work so talking normally & eating were challenging. I bring this up because I saw a Z Health Master Trainer about it, & his recommendation was to touch the two terminals of a 9 volt battery against the paralyzed side of my tongue & hold it there as long as I could (about 4 secs - not comfy!!) & repeat several times/2x/day. I was also given manual exercises to help strengthen my tongue muscle. As barbaric as the battery therapy might sound, it did stimulate the nerves (like a tens unit would), & I think it helped w/ recovery.
I never had a metallic taste but I was not able to sleep on my stomach with my head to the side because that was when the poking feeling from the styloid was the worst. I even mentioned it to my husband and my doctor. After my surgery I have not had an issue with it. Good luck to you and I hope you are able to find a good doctor and get relief soon.