Hi Everyone. I just wanted to post my story just to vent. I don’t have anyone to talk to who understands what Im going through, since its so rare. I feel like Ive been in 2 years of “my worst nightmare”. Literally its been one thing after another happening for me in my life and it hasn’t let up. As soon as I think im okay something else bad happens. I am 28 years old. Due to a “series of unfortunate events” with me not handeling it well- I was literally “clenching my teeth and bearing it”. I never knew it could have such terrible outcome as TMJD and Eagles. Doctors/Dentists have been giving me the ultimate run around. My life is in pieces now due to extremely high medical bills which I cant afford plus the work absences and crying now my job is in jeopardy. Doctors/Dentists keep saying “stress” doesn’t cause this. I beg to differ. Stress most definatley caused my TMJD and Eagles.
During my series of unfortunate events I handled the first one- some crying but was okay. The second one the same. As things kept happening with no break in between I began to “loose it” emotionally. I was at the point where I was physically shaking every single day for months. When I shake my teeth chatter and I clench my teeth tight through all of the tears. During this my jaw began clicking and I was having head pains. I was convinced I had a brain tumor. My ENT told me I had TMJD and ask my dentist. My dentist told me it would go away when the stress went away. I accepted that answer. I thought the stress was gone. Well I was wrong. It continued… I crashed my car, lost my apartment bc of medical bills, moved back in with ex husband, my ex boyfriend died, I got a strange itchy rash which dont know what caused it, my grandmother (my best friend) died. When my grandmother died I must have been doing some serious clenching because the whole right side of my head went numb. More hospitals and doctors with no answer in sight. Finally I researched my own to find an LVI dentist. The LVI dentist found I had TMJD on both sides with displaced disc on right side. They also found the Eagles.
Both of my ligaments are calcified. So many drs so many tests seems like no one can help me. My ENT surgeon who does not handel this told me to “stay away from surgery no matter what”. He said he would not let him or anyone operate on me for this. But he referred me out to a doctor at Yale New Haven Hospital- Dr. Mehra. He put a camera down my throat and said since it was not poking through I didn’t need surgery. Completley ignored the list of scary symptoms I am having. Sine I fixed my jaw with LVI dentist and orthotic appliance the following symptoms remain which I am assuming are from the Eagles, what else would it be:
-stabbing knife pain metal rod feeling in throat
-nerve like pain down throat
-hear heartbeat in left ear
-pain under right ear
-tingly spots in face
-bug crawling feeling down face
-feeling like I am going to drop dead when I stand up
I called Yale New Haven who told me to work with my ENT (who doesn’t handle eagles) My ENT tells me to go to neurologist. Nerologist says it has nothing to do with them. Dentist says my jaw is fixed. Noone knows how to fix me. I feel broken. I keep blaming myself and wondering why all of this happened. I am terrified of surgery. I only had my tonsils removed in 2005. But I cant live like this. In pain and anxiety and horrible symptoms.
I reached out on my own to Dr.Cognetti. I am waiting for him to review my results and call me back. I am very anxious. He is out of state for me but in driving distance (3.5 hours). Me and my husband are back together and want kids more than anything. -He is turning 40 this year. My life is at a hault after the hell ive been in. I cant smile I cant laugh at anything. I am crying every single day from the amount of trauma ive been going through. I keep blaming my self for all of it- divorce, the teeth clenching, not handeling the stress well, etc. I cant forgive myself.
If anyone has been in a similar situation please reach out and share your experience. I have been reading through tons of posts. I feel like the people in similar situations - with ligaments calcified (not elongated bones) removal when I reach out to them their posts are old and they do not respond. Wondering how they are doing if anyone has relief. Did anyone get better with both TMJD and Eagles? Is it possible? Is my life over? Am I going to loose my job? How do I forgive myself for clenching my teeth and causing such hell and stress on my body? I try so hard to take care of myself I never saw this coming. I thought I would just cry and shake through the stress, never saw this outcome coming…never thought it was possible.
Thank you for reading! I hope all of you are doing well. Some posts I read make me so happy others make me scared to death and want to give up fighting.
IFor years I was also told that I had tmj caused by stress and anxiety… it started out years ago quite mildly, a little discomfort here and there. By January of this year the pain was causing so much fear because my dr kept telling me I was healthy and fine but I was feeling so terrible! I k ew something was wrong… I finally went to the dentist thinking that I had oral cancer or something and he excitedly told me I had Eagles.
My dentist told me TMJ was an easy explanation to cover most of my eagle symptoms and that he wasn’t surprised that my Dr thought I had TMJ. He showed me my X-ray and explained how my “horns” could cause all those problems!
I have found that since I finally have a diagnosis that my anxiety has lessened and I am able to be rational about all my symptoms and what causes them. I still do worry but not soooo much!
I have not seen an ent yet as thecwsiting listvis long but I will see a pain specialist next week to help me manage until I can have surgery. It’s hard to manage with the pain but meditation massage, acupuncture,stretching, yoga are all helpful!
Hi Cupcake5 -
First let me say that I’m glad you & your husband are back together. At least you aren’t going through this alone. I hope he is being supportive even if he doesn’t understand what you’re going through.
I am also a self-blamer, a jaw clencher & have terrible TMJD. You should not blame yourself for clenching your teeth as a reaction to stress. Our bodies do what they do to cope when we’re in stressful situations, & just like the shaking & teeth chattering epidsodes you’ve been through, there are “body things” you simply can’t control. No one knows what causes ES, & it’s very possible that your ligament calcification has nothing to do w/ clenching your jaw. It may be that clenching your jaw & having TMJD is what actually allowed your diagnosis of ES.
I had my tonsils out (early childhood), a head injury (early teens), TMJD (since early teens), & whiplash (early 20s). Any of these could have contributed to my having ES or perhaps none of them did.
Self-blame only serves to make us and consequently those around us miserable. There have been many studies done that show guilt, self-doubt, self-blame, etc. make us sick. Being able to be at peace w/ self because we learn from mistakes we make, is actually very healing. In the 1960s a man wrote a book called something like Laughter - the Best Medicine. He’d been chronically ill for about 10 years w/o a diagnosis. He got tired of being sick & decided to cure himself by trying to be happy & laugh a lot. He began reading funny books & watching only funny shows on TV & guess what!? His illness went away. I just found this quote online: Laughter: The Best Medicine -
"Laughter reduces pain, increases job performance, connects people emotionally, and improves the flow of oxygen to the heart and brain. "
Try to stop the self-blame & find laughter again - no matter how much pain you’re in, being able to see the sun instead of the clouds will lift your spirits & help you cope so much better.
Contacting Dr. Cognetti sounds like a brilliant & pro-active choice on your part. I will be praying that he can help you. Getting your calcified ligaments removed should make a HUGE difference in reducing your symptoms. A part of your body that should be quite soft & mobile is rigid & pokey. Of course that’s going to create problems depending on what is getting poked or compressed.
Remember - “To err is human, to forgive divine.” (This saying is from “An Essay on Criticism,” by Alexander Pope). “All people sin and make mistakes. God forgives them, and people are acting in a godlike (divine) way when they forgive.” Forgiving self is the hardest thing to do but is transformational when we learn how to do it.
I’m hoping this message helps you begin to rethink your current mindset. There truly is power in positive thinking!!
Because I care about you
I’ve not had TMJD, nor calcified ligaments, so my experience is different from you, but in all the research papers I’ve read, there is no mention of stress & jaw clenching causing ES. I totally agree that it won’t help, & the tension does make things worse (I had problems with this in my neck & shoulders), but please, please don’t believe that you have caused this yourself. You have been through some horribly difficult times, & you have coped as well as you could- hold your head up & be proud. You’ve not given in, you’ve researched things yourself, & as Isaiah says, you’re being proactive in trying to get yourself some help, you’re not curled up in a ball hiding from it. I’m in awe of you, you should be too!
I had the face pain/ tingling etc symptoms you describe; they were getting alot worse before surgery, but are now much improved. I think that the Trigeminal nerve was being irritated. I also had the heartbeat feeling & sound in my ears- I had jugular vein compression, & again the symptoms have improved vastly since surgery. I was warned off surgery by my doctor, & read a few posts on here where people had difficult surgeries, so made up my mind to steer clear. I messaged one of these members later though, & was so glad I did- he was quite embarassed as he’d posted soon after surgery when he was feeling grim, but had never come back on- & having given it a couple of weeks, he had felt massively better, but unfortunately didn’t think to share that with everyone else. That was reassuring for me, & then with the symptoms worsening alot- I felt really ill, scared & like I might die at times!- I went for surgery with a doctor suggested on here. And I am so glad I did- I have my life back!
I’m sorry this is so long, but I want you to know that we’ve been there with the fear, & come through the other side, way better than before, so I really hope that it happens for you. If you’re able, read through the Newbies Guide symptoms & what causes them section, as hopefully that will help you understand what could be happening to you. And read through the section on causes of ES- I don’t know if you had symptoms before the tonsillectomy, but that is a very common cause of ES. And read through the post-surgery stories, & there’s mentions in research papers of the success rates for surgery; many members have been ‘cured’…
Going to Dr Cognetti if he’ll help you is a great idea as he’s very experienced. And get your husband to look through some of the stories if you like- it’ll help him understand what you’re feeling.
I hope that things work out for you with Dr Cognetti, now that you’ve had some of the jaw problems sorted. Thinking of you & sending you a hug
Thank you all for taking the time to read and your kind words!
Diasy you have calcified ligaments as well? Are you seeking surgery?
Isiah yes you are right. Ive never been so sick as I been in my whole life, as i have in the past 2 years. Strange things…stomach issues, rashes, colds, now this. Ive had so much blood work tests done its not even funny. Finally they found I have this but this is seperate from those other sicknesses. I believe you are right in the fact that I am miserable. When i got divorced I was miserable and kept wishing I would die. I feel like now im getting my wish. And i regret it in full. I feel like this “eagles” is a death sentance for me. I keep praying for forgivness for wishing that when i was so depressed. I do need to turn my attitutde around its been so hard when so much trauma happened in such a short time. I really need to figure out in someway how to forgive myself for everything so I can try to heal. Things finally began working out finally and now I am too sick to enjoy it. Strange how life works. But i am thankful for everyday that I wake up even if I am in pain.
Jules- i am so glad u are feeling better. I see you say how the surgery helped with most of your symptoms. Do you still have some of them? Im at the point where i feel like my ligaments are choking me. Im praying Dr cognetti contacts me back as soon as possible. Its difficult to even survive like this day-day. I have been trying to read through all of the information here and on the facebook group page. It seems like most people have the same issue as you. Im having a hard time finding those who have calcified ligaments and had them removed. Wondering if it causes any functioning issues. But then again they are probably not helping while being calcified. I am really hoping that Dr Cognetti offers me the option of surgery even tho I am terrified. But i feel like thats my only hope to getting better. I was drinking apple cider vinegar mixed with honey thinking it would dissolve the calcium i ended up puking at work and had to leave. I dont think its working honestly.
So all of this reared its ugly head after my grandmother died (she was my best friend). But a month later a cat appeared in our yard stuck in a tree. My husband saved it. It kept coming to our house everyday for weeks. We finally brought it inside. It was just a kitten. Weve been keeping her and taking her to the vet who said her estimated birthday was the day my grandmother died. She is giving me hope right now that hopefully everything will be okay. Its terrible feeling like ur being choked from the inside n theres nothing you can do about it. Im just waiting and praying i can get in to De cognetti and he can help me. I hope all the best to all of you! Xoxox
Stomach issues can absolutely be ES related. The vagus nerve is one of the cranial nerves, & it runs in the area of the styloids & ligaments. When it’s irritated it can affect heart rate & digestive system. To give you reassurance that removing the ligaments won’t cause you a functional problem, they help in a very minor way w/ swallowing. I had swallowing troubles (i.e. choking on my saliva & sometimes water) for many years before my ES diagnosis. I still have that problem so having the ligaments removed really didn’t help or hinder that for me. I haven’t read any reports on this forum from someone who experienced a side effect of having their s-h ligaments removed.
I can SO empathize with you. I have calcified & elongated styloid ligaments on both sides. I also have very severe TMJD caused by Ankylosing Spondylitis and Psoriatic Arthritis where not only have I lost the cartilage on both sides but also the condyle bones - so a huge mess there and can not do the total bilateral jaw replacement surgery.
First of all - don’t blame yourself for any of this. You life has obviously been nothing but stress which is so hard to deal with in itself. Been there done that, very long story of 40 years of chronic pain and other disasters.
I went ot Dr Samji in San Jose Ca for surgery removal on right side in NOV and can not say enuf about how beneficial it has been. I can not wait to have the left side done - saving up for the trip money He found my Glossophyrengeal nerves to be compressed along with my carotid artery. The pain I am now having on the left side ie: radiating to back of head, mastoid bone behind ear, tingling around & inside mouth and terrible whooshing in my ears is now ALL gone on the right side.
His procedure is called a mini-craniotomy, which is enuf to scare you right there. But he did a wonderful job and my neck incision is almost invisible. He attaches electrodes to the nerves during surgery so he can tell “what is happening or NOT”.
Fabulous doctor, but I have read very good things about Dr Cognetti also.
I needed to have a ct-scan of styloids without contrast and with measurements to send which he reviewed before my initial phone consultation with Dr Samji.
I wish you the very best and please continue to contact Dr Cognett’s if you aren’t hearing anything back. Maybe they don’t have right info that’s needed. Don’t give up what ever you do!
PS if your insurance doesn’t cover TMJ get a MD to order a MRI for you to show if it is indeed a medical condition ie; arthritis loss of cartilage etc. At that point once it’s considered “medical” any treatment or orthotics should be covered under your medical insurance.
Hope you find some of this helpful and I can’t help but wish you rapid help and some recovery.
I also have TMJD and Eagles. I knew I had Eagles for 2.5 years before opting for surgery. In the meantime, I started having horirible facial pain. Doc said it was TMJ. I reallly thought it was trgeminal neuralgia. I went to TMJ doc and he made an excellent bite guard that relieved the pain and I was albe to bear the Ealge for awhile longer. All this before I found this site. I found this site 4 days before my Eagles was scheduled and I wanted to cancel the surgery, but by that time I was frantic with pain. I had the surgery and my recovery was not easy. It was intraoral and it took me about 11 weeks to finally feel normal. It was not all horrible, but the first 4 were. It took about 9 months for all the nerves to heal. I still have TMj and needed a new bite guard because the old one no longer fit after surgery. Yes, my Eagles actually lifted my jaw somehow. So. first have the surgery for Eagles then if you need a bite guard get it Bite guards are expensive. I love my bite guard, it keeps me from clenching at night and no jaw pain. Now one more thing. You seem to be very stressed and if you have a really good general practitioner and you are not using addictive meds or abusing them, I would recommend that you get them to give you a very low, very low dose of an anti-anxiety med to take to relax you or if you need it an antidepressant or nerve med. I have found for myself that people have bad side effects from medications because their doctors start them on a normal dose. Many of us cannot tolerate medications and get off of them. So if you ask for something to relieve your stress until you get through this, make sure they start with the lowest dose.You will find that it helps to calm you nad relax your nerves. I do not post often because of health issues but I too had and still have a great deal of outside pressures from family and other things that cause me to have severe nerve pain unrelated to Eagles and I sometimes need something relaxing. If you have a favorite relaxing herbal tea or anything like that use it. Getting better takes time and we need support. Even if your doctor thinks you have fibromyalgia or some unknown nerve pain, they should try to help relieve it while you get to the root cause, which is probably the Eagles and maybe TMJD. Good luck and contacting Dr. Cognetti is a good move. I hope he is able to help you.