Hi All,
Not really sure where to start writing this but really glad I found this forum. This is a long post because its my first and don’t really have anyone to talk to about what I’m going through, and I’ve spent some time reading posts and seems there are alot of well educated and kind people here. I am just going to lay out my situation, I wish there was a TLDR 
I have struggled with many symptoms since mid childhood (7 years old) that I am now FINALLY! getting some direction on.
Symptoms:
- stabbing pain in upper neck under the jaw on each side
- facial numbness
- feeling like something stuck in throat
- no gag reflex
- gross shakiness and instability moving
- severe headaches in back of head
- double vision
- great difficulty swallowing
- loss of feeling in arms and legs
- persistent numbness in face and tongue
- gastro paresis and difficulty digesting food
- hoarse voice
- weak voice
- difficulty forming words and speaking at a normal volume
- severe pressure headaches
- deep mental fogs and memory issues
- muscle cramping and twitching through out body
- feeling like something is pressing on my throat
- burning sensation in my body
- pounding heart sensation
- constant shortness of breath
- constant tension in my muscles, a very uncomfortable feeling like when you hear nails on a chalk board or a large shocking sound
- very hard to coordinate body movements
- jerking in limbs when I move
- unfounded constant state of fight or flight, a deep panic/anxiety in my body, its physical
- grinding sensation in my jaw and at rear base of my skull
The symptoms have lead to a lot of issues such as:
- many falls
- multiple trips for stitches from cutting myself making food (can’t feel my fingers), scraping my legs on metal (can’t feel my legs), and multiple sprains. I’ve had to have my tongue sewed back together because I fell and bit through it as well has having 2 torn misniscuses from falls and a chronically sprained ankle. I’ve had 2 finger tips re-attached, stitches in my feet, face, arms and hands.
- I had severe eczema and psoriasis until late adult hood due to the digestive issues
- I ended up in the ICU due to a bowel perforation from undigested food due to gastro issues
- I’ve been hospitalized for lung infections due to inhaled food, no gag reflex
- breaking things like plates and glasses because I drop things, my hands are always numb and I don’t get tactile feedback from them - I can’t write clearly due to this
- hospitalized for headaches that incapacitated me and made me bedridden for weeks at a time
- I was home schooled for a few years because I couldn’t attend school with the issues
- I was always a good student and was able to get into college, but in my 4th year could no longer continue with the symptoms and the fact that there were no answers (I mean nothing, that eats away at a person) and tried to kill myself. It was very painful because I was a dean list Bio-Chem major and was President of the Univeristies Pre-Med society with a good path into grad school at the time…but I just couldn’t cope any longer with the pain/symptoms and the interruptions they caused. Most importantly no explanation or diagnosis. (I am very glad to see the Crisis hotline as a resource in the group…there is value in that).
- I was institutionalized at a State Hospital due to not having insurance and ended up homeless. Something that has happened again since that time.
- I now live with relatives and have spent the last 22 years of my life on full disability, mostly house bound but do have some activities I get out to do like volunteering.
Over the years I’ve had numerous workups from every major medical specialty - including 6 muscle biopsies, liver and nerve biopsies, pain management, gallons of blood work, imaging, genetic testing and specialized and invasive screening from everything from MS to Glycogen Storage diseases, infectious diseases, digestive diseases, Wilson’s disease, Addison’s, Diabetics, Cardiac disease, the list is too long - All those conditions+ were ruled out and I’m “Fine” on all reports -picture of health. Its all so horrible, but I am finding by reading some others accounts on this site that this does happen to people.
In 2017 I was hit by a car and was injured. In 2020 I had a c5/6 disk replacement for the herniated disk after failing to recover from it in pain management, and also had my left shoulder reconstructed. After the neck surgery the symptoms I listed earlier increased to a level that was un-liveable, as I usually isolate in dim lit and quite room to help the symptoms abate. They became worse and didn’t resolve with rest/isolation. My surgeon referred me to an upper neck ortho in NY who reviewed my films and diagnosed me with Eagles Syndrome. I was shocked because I had multiple MRIs and CT scans prior to the surgery (and as an adolescent), and told my surgeon of my history and no one ever picked up on the Eagles Syndrome. I was so dismayed that I got a copy of all my head and neck imaging and began reviewing my files myself. Due to my educational back round, I started researching and learning Craniometry, which is the clinical study of the measurements of the distances and angles of bones and structures in the upper neck and base of the skull. I was sure he botched the surgery or missed something…I was going to go over EVERYTHING above my collarbone!!
I was able to get software and after several weeks of learning was able to make accurate measurements and learn how to read images and take measurements. The surgeon was right, the artificial disk was done fine, but I had hallmark clinical measurements for Cranio Cervical Instability and Atlantio Axial Instability, and could see the calcified styloids. I took my findings to my primary and was able to get a 3D CT Scan ordered and it appears that I am correct. I am now working on getting a referral to a CCI/AAI Neurosurgeon in Maryland whose white papers I used in my research and hope I can address that. In the mean time I am struggling to find an Eagle Syndrome surgeon to review my case for treatment options…I want them out! lol
Its been brutally hard, I am 42 with no financial resources and very limited abilities which I have high hopes these new revelations will lead to some interventions that will help me regain the ability to at least be able to go back to work after doing, I still have ambitions. The two things that I do have in my favor are that I don’t have any major diseases like diabetes or heart disease, (remember…“picture of health” YAY - except they never looked at the right pictures!)… and I do have MEDICARE, which is a widely accepted insurance. So I should be able to tolerate surgery well and hope there is a Dr. who will accept my insurance.
I am very scared, isolated, overwhelmed and quite frankly don’t have any more trust in the medical system. I know its going to take time/resources to get consults and a treatment plan etc…but mentally I just cannot come to a point where I trust anything from any doctor and am terrified that any treatments I do end up getting will fail - I know this is like a ptsd type of response, but its where I am at.
These are my Eagle Images. I don’t know if the hyoid is an issue, the process on right side seem to be growing up toward the styloid.
Thanks for coming to my TED talk…a joke.
I plan to be on the site alot and will ask questions as I move along this process. Its so nice to finally be able to at least have a name and some hope to the conditions that have stolen my life to this point, and be able to talk to people who are aware of what its even called. I am in NJ, USA and will start to contact the doctors on the list from the NY/PA area.
If anyone has advice or opinions/questions I am open to them.
