My story and worried about surgery

Good morning,
Sorry this is long, it’s my whole story…
I have been trolling for a few weeks now but would love to hear from people who have similar stories. I want to note that I always had ear problems as a kid, with tubes in both ears and hearing loss on right side. I can only hear out of left ear.

About 2 years ago (October 2018), I had two crowns fall off and started to notice dizziness when engaging in conversations or quick movement. I had slight cases of vertigo for about 14 years now, but mostly were under control with the epley maneuver. However, this time was different. The dentist put in a post on both teeth and replaced the crown but told me that I would probably need to get an implant. The following month, I saw the ENT because my ear felt full and there was pain behind it and I felt that I had something going on with my sinus. I had a sinus scan that showed they were fine and my ENT said my ear was fine. He had me take allergy medicine in both morning and night saying it would help clear up. I saw chiropractor at this time and was getting weekly massages with no relief.
In January, I saw my primary doctor. I started having a lot of Reynard’s symptoms, which would cause blood flow to be limited and my fingers would turn purple and complained about a bump on the back of my neck which she told me was muscle that might have been pulled. She said nothing can be done for Reynard’s, but the bump almost felt like a swollen lymph to me, but my doctor sent me to physical therapy for the dizziness, which I did for 8 weeks with no difference. (I am thinking at this point that blood flow has to be blocked somewhere.
At physical therapy, they felt it was more positional (and somewhat visual). At this time, I saw my eye doctor because my eyes were very dry and left eye seemed to bother me. When driving, I would also get dizzy. Headaches started and were more up the back of my head. My scalp would hurt when brushing my hair and bring on the headaches.
My doctor sent me to Neurologist and for CT scan and MRI (I think of head and neck). He told me it was more anxiety and stress (mom of 3 and teacher), so I took the pills recommended. I also had light sensitivity and had to wear a hat most of the time.
At this time I started acupuncture along with chiro and massages. I was getting a lot of pain in my left shoulder and would lay on a tennis ball to try to lease the tension. My chiropractor thought it was posture related and diagnosed me with text neck. So, I started doing exercises for that and was adjusting my posture at work. Still no relief.
In the mean time, I decided to start the process of getting implant, thinking it could be related to my mouth. The muscle relaxer helped from Neuro but the anxiety medicine had me tired. I continued to get vertigo, neck pain, and headaches. At this time, my jaw was really bothering me and I was told that I had TMJ and all my symptoms were related to TMJ. They made me a mouth piece and it didn’t help.
In March (2019) I was back at ENT and requested a tube in my ear b/c the pressure just felt like too much. He put the tube in but we took it right out b/c it felt the back windows were open in a car on the high way. It didn’t take any relief from the fullness in my ear. He still stuck to the fact that I have TMJ and that was causing all my issues.
In May 2019 I started the process of removing front tooth and getting implant, which they put in right away with titanium implant and let the bone heal around it with the implant in.

In October 2019 (a full year later of still being in pain), I switched to a new chiropractor who planted the seed that she thought my teeth could have something to do with it and recommend I see a holistic dentist. I put it off and continued with my treatment of front tooth implant, which was finished in December. I also started to get pain in my face, which I thought could be trigeminal neuroglia, saw a specialist but he thought it was more occipital because of the feeling of glasses around my ears and pain up the back. At this time, all the doctors were pointing to TMJ causing all my issues.

January 2020 I saw a TMJ specialist at Thomas Jefferson, who suggested that I don’t have TMJ but she feels that I may have infected bottom tooth, one that the cap fell off in October 2018. We removed the tooth, which was infected and treated it. I was still getting pain and saw another TMJ specialist to look at getting botox for headaches and he was still treating me with medicines to help with that however, I had to go through a process of them. I ended up on topamax,which caused me to pass out on my kitchen floor. I had such dry mouth that I went back to my ENT to look into possibly have a blockage and he put me on medicine for salivary gland stones blockage. I think that’s why I passed out, I was on too many medications at one time. Since then, I still have chronic dry mouth but I think always have.
In Feb. 2020 I went back to the advice of my chiro and saw holistic dentist at Meeting House dental, which did a 3D beam scan to show that I had cavitations, root canal teeth that could be causing harm and also Eagles syndrome, which I ignored at that time. I contacted an oral surgeon, Atlantic Oral Surgery in NJ about the cavitations and we planned on getting them done at some point.
In March 2020, I went back to ENT because I was having trouble swallowing and had some heartburn. He felt that it was acid reflect and gave me more pills for that. Then covid hit.
Symptoms continued, I was able to continue with my chiro and acupuncture for relief but it wasn’t enough. In June 2020 I finally got my bottom cavitations and tooth 9 extracted (it was listed as root canal tooth that could be infected). Then in Aug. I had top cavitations done. In Oct. I had dental implant removed thinking maybe I am having a reaction to the metal. At the end of the month, I saw ENT at Thomas Jefferson thinking maybe it was something inner ear. She mentioned Eagle’s syndrome and I see Dr. Cognetti. He confirmed that he thinks that I have Eagle’s syndrome and we are planning for surgery Dec. 4 but I am worried that it won’t be the answer and maybe it’s something else but I am tired of searching for answers. My vergito has gotten worse with head movements and now is affecting my life. I am still going to acupuncture and chrio weekly, which helps but doesn’t last long.
I know this is extremely long, but can anyone guide me if I am making right decision to have surgery?

jurban

One of the hard things about Eagles is that we don’t always know it’s the cause/if surgery will fix it. I don’t want to discourage you from surgery, but my surgeon warned me of this before my first procedure in August. Have you seen your scans or do you have them available? From what I’ve heard of Dr. C, he wouldn’t suggest surgery unless he thought it was a viable option.
If you decide to go ahead with surgery, there are many great resources on this site.

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Thanks for your reply- I do have my scans but I don’t think it’s seen on any but the 3d scan from dentist.

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Hi jurban,

WOW! What a journey you’ve been on! All of your symptoms can be related to ES because of the cranial nerves elongated styloids affect. It also sounds like you have vascular compression of either the internal carotid artery or jugular vein. The fact that your vertigo is somewhat positional (i.e. comes on or is worse when your head is in certain positions) indicates that your styloid(s) is/are causing some vascular compression. The answer, of course, is to remove the styloids, get the pressure off the vascular tissues & cranial nerves & see which symptoms go away. For many of us, styloid removal has eventually cured most of the crazy symptoms we had. There are usually a few residual things that stick around but at a much lower level that doesn’t impact our lives as they did prior to our surgery(ies).

I heartily agree w/ anharris, Dr. Cognetti doesn’t offer ES surgery to just anyone. If he thinks surgery is worth doing, that means you’re a good candidate & will most likely notice some very positive results over the 6-12 months after surgery. If you have bilateral ES, he will require two surgeries, one for each side. This is a fairly common practice.

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I get it! I too had a weird upper tooth problem after a root canal and it always bothered me. When I started getting headaches every single day last September until now along with dizziness nausea and other symptoms I thought it was the tooth. An oral surgeon pulled the tooth but I still had the headaches every day along with neck pain shoulder pain and pain under my jaw. I too have vertigo and have had it for 20 years but never this much! Lately it seems like it’s getting worse and worse I feel like I have it every day and the Epley maneuver is not working. Finally a TMD doctor noticed the long styloids and calcification on a panoramic x-ray.
I went to Dr. DeLacure in New York City and he said he would do the surgery but wasn’t sure it would help my vertigo or headaches so I am so confused right now like you. I sent my records to Dr. Newman in PA and I am waiting to hear from him. It’s all scary and confusing!

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Unfortunately no doctor will say that the surgery will cure your symptoms, but Dr Cognetti is very experienced so I don’t think that he’d go ahead with surgery if he didn’t think it could help.
There’s lots of info about what might cause ES symptoms in the Newbies Guide Section- there are several cranial nerves close to the styloids which can be aggravated- this can cause dizziness, ear fullness & the TN that you mention. If the styloids are compressing the arteries or veins then that can cause dizziness too.
The mouth dryness & Raynauds are interesting- this could be an Autoimmune problem- Sjogrens Syndrome causes dry mouth & eyes, & TN & Raynauds are quite common with it too. If you’ve not had blood tests to rule out inflammation & an AI condition it might be worth getting that looked into as well.
I think posts are crossing so sorry if I repeat what others say!

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Hi Chasingophelia,

No doctor will guarantee that ES surgery will help. We on this forum can definitely say ES surgery usually helps. There are a very small group of people who haven’t had a positive outcome of some sort & of those, most have had surgeries w/ inexperienced surgeons who didn’t remove enough of the styloid or who “botched” the surgery in some way. Seeing someone like Dr. DeLacure or Dr. Newman is the best idea as both are experienced w/ ES & complete styloid removal. It’s also important to make sure whomever you choose is paying attention to the stylohyoid ligaments & will remove those, too, if they are at all calcified.

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WOW jurban!!! I have had many of the same symptoms over a period of years and had the many years of massage, chiro, acupuncture, etc. Botox, nerve blocks more recently in the jaw and temples. I was told I have TMJ and that was the cause. I do have it but isnt the cause of all the pain. I had ES surgery on one side end of April and going in for other side in 2 weeks. I know the surgery wont fix everything but I do know I have ES and I’m willing to do surgery it to see what symptoms improve, hopefully get some relief and then work towards figuring out all the remaining ones. Fix the known? Kind of a process of elimination.

I had never heard of “cavitations” before although I had early in my life a root canal procedure turn into an abcess. Ive had about 8 root canals and had several dentists tell me some of the old dentistry called “pulp caps” next to the root tops can cause problems. Im currently struggling with some gum and nerve teeth problems. My teeth are hypersensitive and have been for years. When you said you had crown fall off, was it a partial crown? I have a mouthful of partial crowns that are all starting to fail. Just found a hair line crack on the edge of the gold crown where decay worked its way in there and now working down to gum line. Argh. Im going to have to replace all these partial crowns with full crowns as I suspect several are failing. I too had thought of taking out all the old metal fillings etc and just getting implants. Hearing your story, I will rethink it.
Many of us, and I’m one of them get to a point where we are desperate for relief. I was more than willing to jump in and get surgery in hopes of relief after years of trying everything else and getting no where. Although there is always risk in any surgery, it comes down to risk vs benefits. I hope that helps.

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