As reading other people’s stories has been so helpful to me, I thought I should share my story as well.
In the spring of 2008, I had dental x-rays taken at my 6-month cleaning. The dentist noticed a long stick-like shadow on each side of my neck. As this perplexed him, he wanted a second opinion, so he sent me to another dentist for a Panoramic x-ray. Both of the long, stick-like shadows were even more visible and essentially identical. After much discussion, they concluded the structures in the x-ray were showing calcification of my carotid arteries and referred me to a cardiologist. The cardiologist then sent me for a doppler scan. Everything looked good and I was told to watch my diet and cholesterol intake.
Sometime in 2010 I started having a great deal of neck pain and headaches. I saw a chiropractor, acupuncturist and neurologist all who told me it was stress and to relax. As I had two young kids and a busy life, I tried to ignore it and move on – just relax.
Fast forward to the spring of 2015. I was at a new dentist (the dentist of 2008 had retired) and needed a replacement crown. Long story short, the crown went bad, and I ended up at the endodontist needing a root canal. On May 27th I had the root canal and my life hasn’t been the same since. They had a very difficult time numbing me and the procedure that was planned to take 45 minutes took 90 minutes. I remember calling my husband on the way home crying that it was the most painful experience I’ve ever had especially when they numbed me the second time. The next day I woke up with significant pain in my left neck, jaw and face.
The summer of 2015 was a very long one for me. I was in a lot of pain and with little explanation from anyone. An ENT put me on Neurontin, which took away much of the pain, but came with many unpleasant side effects. After seeing a second endodontist and a TMJ specialist, it was determined I needed an oral surgeon and the tooth needed to be extracted. This happened in August. It definitely made a difference, but something was still wrong.
Since that time, I have seen: 3 TMJ Specialists, 2 Neurologists, 1 Neuro surgeon, 4 acupuncturists, 3 chiropractors, 1 Atlas Orthogonal Specialist, 1 Orthopedic Neck Surgeon, 1 Pain Specialist, 1 ENT Head and Neck Specialist, 1 Myofascial massage person, 1 Massage person, 1 Kinesiologist (for supplements) and consulted with several doctors on the phone.
This period of time was very frustrating. I would go from excited and hopeful that a doctor was going to have the solution, only to find that they did not. And no individual doctor could explain the majority of my symptoms tied to a clear diagnosis. We were given TMJ, Cervical Facet Syndrome, Trigeminal Neuralgia, Complex Regional Pain System, Mechanical Inflammatory Response, Fused Cervical Vertebrae, etc. At one point, my husband suggested I needed to stop looking for answers from our cadre of doctors and just consider it information gathering that we would use to find a solution. Generally, each doctor would send me to another and then another and so on. For example, the TMJ specialist sent me to the Atlas Chiropractor who then sent me to the orthopedic surgeon who suggested physical therapy. Also I had a chiropractor suggest I should have my brain mapped to see if there were any issues (my brain was very healthy). The Neurologist suggested it was in my head and I needed therapy. I am sure this sounds very familiar to many of you.
Due to all the negative side effects for me, this period saw me successfully ween myself off of the Neurontin; this was very difficult and honestly, I could write an entire book on this experience. If anyone has questions, please message me and I will elaborate. My husband and I also started to think the Neurontin was masking the real source of my pain and we needed to get to the bottom of it as most of our medical cadre were starting to give or only want to treat the symptoms.
As I got lower and lower on the Neurontin dose, I was finding it more and more difficult to eat. By July of 2018, I was taking 100 mg at night and could barely open my mouth any more. Needless to say, I was very frustrated, and my husband was at a loss for what to do. So was my TMJ specialist, who I saw every Monday to adjust both my night time top mouth guard and my day time bottom mouth guard. He suggested I see an oral facial specialist to take a CT of my jaw joints to see what was going on. My appointment was in early August. Surprisingly, this practitioner said he would be remiss if he didn’t point out he thought I could have Eagles Syndrome and I should look into it further. He had never actually seen it before in practice. Finally a new clue! I called and met with many of the practitioners above and they all dismissed Eagles Syndrome as not possible – if they had even heard of it.
I remember one particular appointment with the Pain Specialist that I had waited many months for a follow-up appointment. I asked my husband to go with me as I hoped (yet again) this doctor will have some answers. When I discussed my pain and inquired about Eagles Syndrome he flat out said “No”. No conversation, nothing – complete dismissal. He wanted to do injections find the problem nerves (to kill later) and that was that. The only thing I can conclude was most of the practitioners based their dismissal of me not having any problems swallowing which is a typical symptom.
Now my husband is a trained research scientist and very logical. We started doing or own homework, learning about muscles, bones and nerves, and spending hours searching the internet. We started writing hypotheses and working to rule them out one by one. We had to take matters into our own hands. After Eagles Syndrome was thrown in the hat as another diagnosis, we decided we needed to leave our state for medical care. My husband suggested I take each diagnosis and go about proving it wrong and see what was left. The diagnosis we set to investigate were: Trigeminal Neuralgia, Cervical Facet Syndrome (CFS), TMJ and Eagles Syndrome.
I did my homework, researching doctors and hospitals for each diagnosis. A friend suggested I consider two options when looking at other states. Choosing help close to home, or choosing help close to family. Next, I went about gathering all my medical records and imaging (no easy task!). And then I started calling, faxing and mailing out what each place requested. Basically, I was throwing darts and seeing what stuck. It was not a quick process! Every Monday I made follow-up calls and making notes, especially dates, times and who I spoke to.
At this time I was off the neurontin completely and I was also having a great deal of pain turning my head. I doubt I would have picked up on it had my son not played high school soccer and the days of his games I was in so much pain from turning my head constantly.
By October I had heard back from several places and we started to make some head-way. The CFS was quickest to rule out as I had mailed my images to University of Michigan (U of M) and they said they did not think injections would be helpful. As I also heard this from a consult with The University of New Mexico too. With these opinions and our research, I pretty much ruled out CFS out.
For the Eagles Syndrome I contacted the University of Michigan (they do not take Eagle’s cases) and an Ohio State ENT who was very nice, offering an appointment and a phone consult. We talked and the doctor said 90% of the time he could diagnose over the phone, but in my case, he wasn’t sure (I had no difficulties swallowing). He suggested I contact Mayo in AZ as it was much closer to home especially if we ended up with surgery.
I called Mayo in AZ and got really lucky to get an intake person who would listen and as I referenced the Ohio State connection who thought I shouldn’t have to travel 2000 miles for a consult; they transferred me to the ENT department and made an appointment in November with a doctor that specialized in head and neck cancers! Woo whoo! About a week later, I also received a call from Barrow Brain & Spine for a consult on trigeminal neuralgia. Finally, I felt like we were making some progress.
In parallel, my husband had downloaded some free software to start studying all my various CT scans, x-rays and MRIs that we collected. Through this we concluded my Eagle’s was the result of calcified stylohyoid ligaments and not elongated styloid processes. With the software, he was able to create a number of images that loaded up on our iPad to take with us to future appointments. Thank goodness he did, because they later came in awfully handy!
November finally came and we set off for our day trip to Mayo. I packed all my imaging CDs (get these from all your doctors), my documents and the iPad. During the exam the doctor palpated my mouth (which made me cry) and sprayed lidocaine in my nose to use a camera to look at my vocal cords. All of a sudden I felt good! All the weird symptoms and pain were gone! As the CD with my most recent CT Scan on it was not readable (send me a message if you want to know what you need to request), they were unable to open it. I was so glad we had the iPad with my husband’s work! We showed them the images (I could see the surprise on their faces when they saw my calcified ligaments) and based on my symptoms, and their exam, I was offered surgery to remove the left-side ligament. We scheduled it for the beginning of January with another CT the morning of surgery.
In December we also set out for another day trip to Arizona, this time to Barrow Brain and Spine. The neurosurgeon we met with went over my head & neck MRI with a fine tooth comb. He said it wasn’t CFS (yea!) and it wasn’t Trigeminal Neuralgia (bigger yea!). He felt it was a mechanical inflammatory response and started talking to us about medications for that. Seeing where this was going, we mentioned Eagle’s syndrome and pulled out the iPad to show him our images. He then asked if we had the disk with the CT so he could try to load it on their computer. Outside the door, we could hear him say “Wow, come check out these bilateral styloid processes!”. He not only knew what Eagles Syndrome was, he diagnosed it too! They offered me surgery in April.
Now by this time my diet (because I couldn’t open my mouth or chew) had pretty much been reduced to I having oatmeal with berries for breakfast, a smoothie for lunch and soft foods for dinner aiming to hit 1700 calories a day since July. Being scary thin and constantly exhausted was not enjoyable and boy did I miss real food. Around the middle of December, I could no longer chew without wanting to cry, so everything (including my morning blueberries) went in the Nutra Ninja. Life improved a bit one day when I had blended beef stroganoff over chopped egg noodles (you just have to imagine what it should look like). From a nutritional perspective, I was (and still am) taking a lot of herbs, homeopathic remedies and supplements.
Given the urgency of my situation, we decided to proceed with surgery at Mayo. It went very well with minimal swelling and no drain or stitches to remove. I left the hospital the same day with steristrips over the wound (about 6 cm long) and a compression bandage. The next day I had my first follow-up appointment and they removed the compression bandage. Three days later we drove our 9 hours home. That was pretty rough! For the most part, Tylenol was my pain reliever of choice.
Immediate relief was felt in a couple areas. First, my teeth on the left side no longer hurt. Nor did the corner of my jaw on the left side. And my ear no longer hurt – with all the other things going on in my head, I never even noticed my ear bothered me, until after the surgery. My left ear tinnitus also disappeared. I could chew very soft foods which was also a slight improvement.
Week 1: Pretty rough. I didn’t do much. Two short walks and showering every day was about it. Still chewing very soft foods. My big thing that week was constantly telling my husband how great my left ear felt.
Week 2: Felt a bit better. Still not doing much, watched a lot of TV. Overdid it with my little walks on day 10 and caused myself a very bad evening as well as night causing my husband to miss work the next day. Lesson learned. DO NOT OVERDUE IT! Still chewing very soft foods. Had a few moments of mental clarity. Restless at night. Woke up in the mornings without immediately icing my surgical site / neck. Sometime during this week, the muscles in the back of my neck and back of my head started getting really tight – very uncomfortable. Not wearing my daytime mouth guard, still not talking much. That week’s great revelation was that my left eye no longer had tightness (close to a twitch) and I could comfortably turn my head to the left.
Week 3: Still not doing much energy-wise, but reading more than watching TV so that is progress. Still taking my walks and eating a bit better. Doing dishes again and making the bed. On day 20 I had chicken enchiladas and very chopped broccoli. I went to Target with my husband and it was exhausting! My neck muscles have relaxed (until the evening) and now the numbness in my jaw and above my incision are causing me pain. The nerve in my jaw gets irritated and tightens everything in my face and head. The accomplishment for this week was my left arm – I guess it had been really tight because now it feels relaxed.
Week 4: I made dinner (simple recipe), swiffered the house and did a load of laundry. Also went to Hobby Lobby with a friend on another day. Today I was really tired, so I started drafting this story. I also have noticed a reduction in sound amplification as well as my face having numbness and tingling – which I am taking as a positive
Now I work on being patient. The incision, albeit large, is healing nicely. Much of my issue is nerves healing and things settling (my husband compares my issue to have a big 5.5 cm thorn in my neck for many years) so now I must be patient. Time will tell on whether I need to have my right side fixed as well.
Thank you to all the people who contribute to this site. It has saved my sanity knowing I am not alone. I hope this helps some of you! Feel free to message me if you have any questions or need more information.
