New to ES, here is my story, looking for advice

Hello, I just thought I’d introduce myself and give a history of my experience. I just joined so I’m starting to read through the threads but would be thankful for any advice.

TLDR version:
When it started: Concussion/whiplash on a water slide

Symptoms: severe fatigue, brain fog, trouble focusing, tinnitus, depression, lightheadedness, trouble sleeping, strong pressure/pain in the head/left ear, tension headaches, irritability, dystonia in muscles on the left side of my neck and traps, TMJ issues, autoimmune issues including alopecia, rosacea, eye and mouth dryness, digestive issues including new food allergies, weight loss, inflammation in my intestines and feeling like my throat was tight

Diagnosis: Jugular compression, minor cervical instability, military neck

Location: Kansas City

The long version:
About 8 years ago I hit my head on a waterslide and suffered a concussion and whiplash. My symptoms started pretty much immediately. I had severe fatigue, pressure in my ear and head, rosacea and nasal drainage. I am a photographer and probably had issues with my neck from poor posture but due to my age and general health it hadn’t become an issue yet. I went to several doctors and a tmj specialist but none were able to help. I started having more random autoimmune issues and my general immune system appeared to be weakened. I saw several chiropractors, holistic doctors, physical therapists and even went to a spine clinic. Chiropractic treatment would help get me out of flareups but nothing made the symptoms go away. I’ve probably had less than 10 days in the past 8 years that I’ve had good energy and felt normal. I have pain, fatigue and pressure most days. It ranges from annoyance to the point of shutting me down to the point I want things to end. About 3 years ago I dropped 30 pounds and started having digestive issues. My throat seemed to tighten, I had acid reflux type issues and blood in my stool. I have a CT scan, throat scope and colonoscopy and other than a little minor inflammation they were all normal. The digestive issues just went away after that

About two years ago I saw a neurologist and tried botox treatment in my neck. I didn’t notice any improvement from the botox and saw a second neurologist who said he didn’t see any reason to treat me at all. Last year when everything was shut down and my business was in trouble I decided the only way I’d be able to rebuild it was if I felt better. I went to Caring Medical and saw Dr. Hauser. Their YouTube videos seemed to describe all of my symptoms and were the first thing that tied it all together. The vagus never irritation symptoms seemed to check a lot of boxes. My hopes were high. They measured a pressure difference on one side compared to the other. I had 4 prolotherapy treatments and still saw no improvement. The x-rays showed that my cervical stability had not improved and they started me on head weights. I didn’t have the best experience with Caring Medical and was pretty devastated by the results. They did order a CT venogram and the results showed that I have jugular compression. My styloids don’t seem very large compared to what I’ve read on this board but I’ve included images of the compression and CT. My styloids measured at right 2.3 and left 2.8 cm. Caring Medical recommended I have them removed, said I could stop the head weights and kind of wiped their hands clean of dealing with me. They recommended Dr. Hepworth in Colorado. I kind of feel like I should address the military neck for my health in general. I do feel like I might have had some pressure issues before my whiplash/concussion. When I lifted weights if I didn’t warmup with cardio I’d get pretty intense tension headaches if I lifted heavy. Now when I have a flare-up cardio seems to help relieve the symptoms somewhat but sometimes I’m in too much pain or to tired to do it. There are plenty of days I want to give up but if I can get better I owe it to my family to do whatever it takes so I can be a better father and husband. They’re as supportive as they can be but they deserve better.

My questions are:

  1. Can all of my symptoms be explained by ES? Which symptoms would not be caused by ES? I’m really trying to determine if the jugular compression is my issue or a symptom of another issue.
  2. My styloids aren’t that long so could something else be causing the positional issue compressing the jugular?
  3. I’m located in KC and willing to travel anywhere to see a doctor and have the removal done. I saw the thread listing doctors but are there 3-5 that seem to get recommend more than any others? Caring Medical recommended Dr. Hepworth in Denver and I also saw that there is a doctor in Omaha that some people have had experience with.

I can also post my scans if it would help.

It doesn’t look like I’m able to upload the scans. It gives me a warning message saying you are unable to embed media into your post.

Shame you can’t post your scans, but it’s not always the length of styloids which cause symptoms, but the thickness of them & also the angle, so they could possibly be to blame. If it’s not ES causing the jugular compression, it could be from a larger than normal cervical process, or even a very tight digastric muscle.
It’s impossible to say exactly what symptoms are down to ES, especially when people have other neck issues as well (lots of us here do, or jaw issues), but certainly if the vagus nerve is compressed it can cause digestive issues. The head pressure could well be from the jugular compression, although usually it would increase with exercise. The military neck & cervical instability won’t help, it could be that they’re worsening the angle of the styloids.
@TheDude has recently had revision surgery; he’s posted some good info about his recovery & also neck issues which you might find interesting, here’s a link:
Made it to California - Surgery on Monday – and Follow up - General / Eagle Syndrome Stories - Living with Eagle
There have been quite a few discussions about military neck & cervical instability, so you could use the search function to read up on those if you want to find out more…
Several of us have had autoimmune issues as well as ES; I have dry eyes & mouth too, & this started at the same time as my ES flared up. My personal belief is that maybe the inflammation caused by ES triggered an auto immune condition. The trigeminal nerve can be affected by ES, & the does innervate the mucous secreting gland of the eyes & mouth too, so that’s potentially another cause.
Dr Hepworth is very experienced, especially with vascular ES, so if you are able to see him, he’s very thorough, & members speak well of him. If it is ES, the only real cure is surgery unfortunately.
I hope this helps a bit!

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puppe styloid

puppe right styloid
puppe 2

puppe
puppe IJV compressed at C1

Jules, thanks for the reply. It looks like I’m able to uploade the images from my desktop but not my laptop. I’m hoping Dr. Hepworth is able to do a zoom call and go over my CT scan.

That would be good if you can get a zoom consultation…well done getting the scans up!
The styloids do look quite thick & definitely angled so could cause symptoms. On the CT Venogram images, it looks as if there could be compression from the C1 process too, although the gap looks quite wide on the normal CT images, but definitely worth asking Dr Hepworth about that.

I’d recommend Dr Hepworth and people travel to see him a lot. I am not an expert at scans but your symptoms do sound familiar to me as someone with vascular Eagles as well. Dr Hepworth actually asked me if I’d been in any accidents or whiplash but he said this is not a requirement for ES. But your experience on the water slide certainly seems related!

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Welcome! I concur with all that Jules & blossom told you. We’re all learning more & more about the varied & expansive symptoms that ES can cause directly & indirectly. If you think about nerves, vascular tissues & muscles being affected by ES in the head, neck, & shoulder area, & consider the compensation that other muscles below those areas make to help the lower functioning ones above, then other muscles further down the chain have to help the compensating muscles above & so on until, YIKES!, your feet hurt, & it could be coming from your neck. That’s a bit of an exaggeration, but you get the idea. Our bodies are all about continuing to thrive no matter what, & when one part is out of whack, other parts come to the rescue, but that causes compromises that cause pain & fatigue & other symptoms.

I had whiplash from a car accident when I was in my early 20s. I couldn’t rotate my head left/right for almost a month, & I couldn’t look up w/o holding onto my head, or it would fall helplessly backward. Scroll forward 30+ years. I began having problems w/ choking on my food (i.e. needing the Heimlich Maneuver to prevent me from dying). Scroll forward another couple of years. I began having pain in the front of my neck, & under my jaw, I found a lump that made my neck hurt when I poked it. Thinking it was a clogged salivary gland, I trouped off to my doctor who sent me to an ENT who diagnosed ES. Just like everyone on here, I had never heard of ES & was shocked to see 3D images of spikes growing inside my neck. Though I didn’t have vascular ES, I had tons of symptoms as time progressed. Getting those nasty things removed, gave me my life back, but it took some months after each surgery to have a good idea about how much the surgery had helped.

Though I saw Dr. Samji, I will also endorse Dr. Hepworth as a thorough & compassionate doctor who is a great choice for treating your ES especially since you have vascular symptoms.

I ALSO WENT TO DR HAUSER. I did prolotherapy once and he said ok we should stop until you get your styloid problem fixed. Also am going to see Dr Hepworth, but unfortunately, you have to see the Nurse practitioner there before you can see Dr Hepworth. They won’t do a zoom consultation, they make everyone go to see the NP and then after you see the NP if they decide your case is something Dr Hepworth can help with, you can then schedule a zoom consult with him. So ya it sucks, but I am going to Colorado from FL just to see the NP on October 22nd.

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That’s disappointing that you have to visit his NP before he will see you. I have all of the scans done and he would be able to view them online. I’m glad you had a better experience with Dr. Hauser. I went 6 times before they even looked at my styloids.

Ya it does def kinda suck… I also have all the scans but they said that that didn’t matter… also with Dr Hauser I def did get the feeling he was in it for the money a little bit, but the fact that after only one treatment he said we are gonna stop and wait tell u get it fixed then work on ur neck with prolotherapy was relieving, because I didn’t wanna spend 1-2 thousand dollars a treatment and then it not work cause the styloid issues. He easily could have said let’s keep doing prolotherapy while you wait.

Other members have commented recently about how lovely & helpful his NP is, so it hopefully won’t be a waste of time…

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Hopefully my insurance will cover it. I spent over $10k with Caring Medical between travel and treatment and none of it was covered by Blue Cross. Kind of crazy after the last year that they won’t offer a televisit.

His NP Alison is incredibly smart and personable and has a lot of experience with these conditions. Just saw her for my pre op appt and will be seeing her for post op as well. Don’t be discouraged! She can order the testing you may need in between your appt with her and Dr. H. Another NP in his office is the one who ordered the CT scan he used to diagnose my eagle syndrome.

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We have had other members who tried prolotherapy & had similar results to what you & @hyperichard have had. I’m sorry for the loss of time & money for both of you. I’m glad you’ve been diagnosed with something tangible now & can begin moving forward with appropriate treatment.

Do you think its possible that if I received surgery that I could become symptom free and live a normal life? With the prolotherapy that was my hope… @Isaiah_40_31

No one can truly predict the outcome of any type of surgery. Every doctor goes into surgery hoping & planning for the best possible outcome for the patient. Part of the end result does depend on the doctor’s skill but also on how the patient’s body reacts to surgery.

I think that with surgery your symptoms could either go away completely or nearly completely. I’ve been a member of this forum for nearly 7 year,s & from my own experience, & from what I’ve read of others, surgery usually resolves some symptoms & reduces others to the extent that you can get back to doing everything you used to enjoy. In some cases where there is significant residual pain, nerve pain meds have helped. Some people have found massage therapy, PT, cranio-sacral massage, cold laser therapy, etc. have been helpful (perhaps along w/ meds). I was a long distance runner & worked out at a local gym prior to my ES diagnosis but had to give those things up as my symptoms progressed. Since I’ve had my styloids removed (2014/15), I’ve been able to return to all my previous activities.

I am fortunate in that having both my styloids removed stopped my worst symptoms. I have some residual pain in my right jaw joint & side of my face (only hurts when I press on it, so I don’t) & First Bite Syndrome which never went away fully but has continued to decrease & is almost non-existent now. I also have a little numbness along my jaw line but I don’t notice that at all. I consider the things that are left over as reminders of how far I’ve come since prior to surgery.

I have requested an appointment with Dr. Hepworth but will also check with Dr. Sale here in Kansas City and Dr. Coughlin in Omaha. I have in-laws in Omaha so that would be fairly convenient and Kansas City would be the easiest. Does anyone know why Dr. Sales is listed with mixed results in the surgeon list?