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Eagle Syndrome - Online Support Group

My Eagle Syndrome Journey

The summer of 2019 had a lot of pollution in the air in Northern California, which caused incredible irritation in my throat and chest. Or at least that is what I thought was the reason.

In late August the pollution in the air subsided but the irritation continued on. I decided to do a full Physical with my PCP office and also do a full check up on my throat and lungs, because the throat soreness, voice coarseness, and chest irritation wasn’t going away. I never developed a cough, just tightness on the right side of my sternum. The results from my physical, complete blood work including full STD panel, lymph nodes, and all the visual checks were clean of anything that would indicate any kind of issues. The throat soreness, voice coarseness, and chest pain continued happening.

After a teeth cleaning with my dentist, in addition to the existing symptoms, I started experiencing pain and irritation in the base of my tongue that trickled up through the right side to the tip of the tongue. It felt like my tastebuds were irritated and enlarged. I also felt like I had a lump in my throat. During my second cleaning visit, I asked my dentist to do a full check up in the inside of my mouth and tongue and see if there is something that is causing this irritation. He couldn’t see anything, but did say that sometimes the tastebuds can get irritated by certain factors like food acidity, alcohol, burn from hot food etc.

I arranged for an endoscopy with my GI Doctor, and the results were without any indication that this is caused by Gastrointestinal issues.

I decided to visit other General Practitioners, because by this time I developed pain that started in my neck and was going all the way to my right shoulder. My anxiety was so heightened that I couldn’t sit still and not do something about this. My right ear was hurting, my gums around my teeth in the back felt swollen but when checked they weren’t, and I had frequent headaches. The pain was not controlled by anything I could take and the heightened anxiety was unexplained. During this whole entire time I was prescribed a lot of different medications to help me with the issues including anxiety, but nothing helped at all.

The major holidays were on our doorstep and I was still dealing with these issues. I felt that the Drs I was seeing at one point felt that I am just a hypochondriac and that all of these symptoms are imaginary. Therefore, for Thanksgiving we decided to go camping (my element is nature), hoping that by relaxing these symptoms might go away. We camped for 2 weeks and I completely ruined my family vacation. It was so disturbing for me to see how this impacted everyone around me. I wasn’t the person they knew and this was very unsettling for them. No adventures, no spontaneous laughters, and not the husband, friend and cheerful person they knew for such a long time. I couldn’t even recognize myself.

In December I asked my PCP to recommend an ENT that I can consult with because of the unusual circumstances. I was referred to Camino ENT and was seen by Shaun Frost who is a PA working with Dr Hussein Samji. During the first visit Shaun was amazing in listening carefully, noting down my symptoms and helping me understand some of the mechanics behind the throat, tongue and mouth. This gave me a different perspective on how all this is connected. Dr Samji performed the scoping through the nostrils to look at my throat. They found a yeast infection on the lower part of my throat and sinus infection on the upper part, which wasn’t visible with the standard throat check. They prescribed Clarithromycin for the sinus infection and Clotrimazol lozenges for the yeast infection. The yeast infection was explainable because I have been taking QVAR inhaler while I was taking antibiotics at one point. This was the first time I ever took QVAR consecutively for several months in a row. The sinus infection could have happened during our camping trip, while the weather was cold and wet. With all this in mind, I was relieved that I had these infections, which can explain my symptoms. I had a follow up visit in a week and the infections were gone, but my symptoms weren’t. Dr Samji did another scope and he told me he doesn’t see anything that could be causing these symptoms.

Yet another holiday was upon us and I dreaded the thought of spending it in any social setting because I knew that it would just affect the people around me. Luckily my family decided to spend this holiday at home, which I believe was in part to help me deal with this issue.

In January 2020, I had another follow up visit and Dr Samji took over my case. He told me that he can have some tests done for me that can help us determine if this is physical or more nerves related. He said that first we’ll start with a CT scan and if that doesn’t show anything we will have an MRI. If the MRI didn’t show anything, he would refer me to a neurologist to help me identify where this pain is coming from. I had a CT scan done within a week and scheduled a follow up visit with Dr Samji about 4 weeks later, in the beginning of February. During that visit, Dr Samji reviewed the results with me and showed me how both of my styloid processes are elongated, which is called Eagle Syndrome. Dr. Samji provided me with non surgical and surgical options. The non Surgical option was to start with Gabapentin of 300 mg, to control my nerve related pain. The surgical option was explained in details to me and all the associated risks with the nerves being damaged because of the location of the 6 major cranial nerves.

I had work related travel that I couldn’t postpone, therefore I was happy to try the non surgical option first, and scheduled the surgery for the end of March. I started taking Gabapentin and waited for 2 weeks for the meds to load in my system and take effect but didn’t have any luck in controlling the pain. I asked Dr Samji if other patients have not had any help from Gabapentin and if there was an alternative I should consider. He asked me to stay the course and not try to change meds at that point.

This was the first time I heard of Eagle Syndrome, and in my search for information I came across Ben’s Friends livingwitheagle.org support site. It scared me the most that this was so rare, that according to some researchers, only 4% of the total US population experiences elongated styloids and calcified ligaments, and only 4% out of those 4% experience any symptoms. Statistically that is only 0.016% would even seek any help from an ENT, which told me that there are few ENTs who are surgeons and have ever diagnosed a patient with this Syndrome. For me it was a miracle, that I was in the hands of the most experienced ENT in Eagle Syndrome in the US and that he was in my county. I felt that all my prayers were answered, because at one point I felt like God abandoned me. Religion is important to me and my belief system is related to my confidence in things that I have to do, undergo or be surrounded by.
When I signed up on ES support site, I was welcomed by @Isaiah_40_31 and @Jules, who helped me navigate around and read from the resources available. Meanwhile, @Isaiah_40_31 offered to share her ES experience with me over the phone. I was so scared at that point that there was so little experience in the medical community that I wanted a second opinion. @Isaiah_40_31 helped me tremendously with the experience shared and I am so grateful for the time she dedicated to help me understand the syndrome. Thank you @Isaiah_40_31.

This is about the time that my confidence in the treatment and surgery picked quite a bit.

Due to COVID -19 sterile surgical equipment shortage at the surgical center, my surgery was cancelled the day before. Dr Samji showed incredible compassion knowing that I don’t have any relief from my meds and asked me to increase the dose to 900 mg. With this dose I felt like the pain was not as intense, but I started developing feeling of being unsettled, insomnia and unexplained heightened anxiety. As with every other medication, Gabapentin helped me in one way but made me feel worst in a different way. However I wasn’t going to give in to those challenges and stayed the course until my surgery, that was rescheduled for April 20, 2020. During these times I heightened my running, walking and swimming to 6 out of 7 days in a week. That was to help me control my weight in case the surgery put me in bed for an extended period of time.

I had my surgery on April 20, 2020 and everything went well with great success. All my prayers and the prayers of my family, friends and coworkers really helped me in finding the right Dr, have the confidence in his skills and the surgery being the solution to this never ending saga. The things that immediately improved were my anxiety, and hypotension when I am squatting and quickly getting up.

I learned a lot of things from this experience. One being that I had certain symptoms that were not persistent in the past, but were a result of ES. My gums around my wisdom teeth have always felt swollen, even after I had all the wisdom teeth removed. Headaches, numbness on my chick, certain head position would cause me pain etc.

In essence, this was a closure to a big saga I had to go through and would do everything to help other people, because I know how dangerous it is to be treated wrongly for something that could be easily solved by a surgery. I also hope we can raise awareness to help increase the number of Drs that recognize these symptoms as a result of this Syndrome.

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Thanks for sharing your story, I’m sure that it will help others. How amazing to have been referred to Dr Samji to get your diagnosis! So glad that your surgery has gone well, hope that you continue to heal well & that any symptoms remaining would go too.
Will you need surgery on the other side?

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@Jules eventually yes. I know that it’ll do me a lot of good…

Hi Riki,
How’s your recovery going? My ES story is very similar to yours. I’m 35, live in SF and had surgery with Dr Samji 6 months ago and am still very much recovering.
Would love to connect over the phone if you’re open to it. The part about your gums really caught my attention because I feel the same. My wisdom teeth removal surgery never seemed to heal properly.
Anyways, wishing you all the best,
Linda

Hi @Linj21,

My recovery is going very well thank you. I’ve been really fortunate and blessed to have a successful surgery and great recovery journey. Here is a link to my post op update.

Post-op update

I am also taking Gabapentin and have increased my dose to 1800 mg a day. It has it’s Side effects, but it is also managing my nerve pain properly.

Here is a link to the Gabapentin post I made 3 weeks post-op.

Gabapentin Side effects

I’ll message you privately with my phone number. Anything that I can help with please don’t hesitate to reach out.

Cheers,

Riki

Great story RIKI. Thanks for sharing.
Mine was rescheduled also and I almost picked the 20th…but did the 27th instead. I was surprised it wasnt rescheduled again but very happy it wasnt.
Im hoping my left jaw pain settles down. I am getting some symptoms in my left upper molars kind of throbbing and wondering if its from the surgery recovery. Dr Samji said it would kick up my TMJ and it sure is. I have had years of hypersensitivity in my teeth (I thought from old dental work in my late teens) and have had half my mouth with root canals. I’m kind of wondering if the ES had some impact on all these teeth sensitivity. I generally dont have gum issues. I know I have a few borderline cracks in some molars and crowns needed. Im trying to figure out if that’s the issue or its just surgery kicking up some of these nerves. Ive been massaging and/or stretching the jaw, using heat, ice trying to get this throbbing to back off.

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@Snapple2020

Ice has been helping me tremendously with the throbbing pain which normally happened at night. I haven’t iced in over two weeks now because it subsided.

Yeah I also am wondering if the gum and jaw issues I have been having my whole entire life we’re amplified by ES. That is the problem with Syndromes, not enough funding, very little research so all we can do is assume instead of relying on data.

The issue with my gums has always been that I felt like they are inflamed to the point that some teeth would hurt, but when I go to the dentist he could never find anything to be causing it. No irritation, no redness, roots healthy and intact, teeth clean and healthy. After the surgery the pain came back into my gums, but it doesn’t last which sounds like it is nerve related…

Well I am happy we have this forum to understand what is happening to us!!

Cheers,

Riki

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I’m so glad you mentioned the root canals and sensitivities. This has been my life for the past few years. I had an endodontist want to root canal on teeth my dentist and maxillofacial surgeon said absolutely not. I had no reason for a root canal. The surgeon said he has had patients come to him after they’ve had all molars on one side root canals and then eventually all those molars taken out as they were told they would no longer feel pain. BUT they did bc it was all nerve related. So he advised me when someone offers either, to see him first. I did end up with two root canals though bc in all the pain, the clenching became so bad, I broke the two. And despite the root canals, the pain is still the same. It feels like something is always wrong. Now, the other side has begun. Everyday is misery.

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