Developing Symptoms, difficulty getting diagnosed

[SamH]

Earlier this year I developed a number of unusual symptoms, pain under ear continuing down neck into clavical, pec pain, jaw pain etc. I also had some arm numbness and discomfort and burnt tongue sensation. I had a CT which revealed elongated styloids both sides, 6.3 and 6.8cm long (CT image attached)

I had an appointment with Dr Michael Elliot in Sydney NSW. I think I made the mistake of mentioning too many symptoms as he quickly dismissed eagles due to not having pain in my throat as a primary symptom.

He referred me onto a Thoracic surgeon for possible Thoracic Outlet Syndrome. The Thoracic surgeon got me to do ultrasounds and ruled out Thoracic Outlet and sent me for a nerve conduction study and back to my GP.

The nerve conduction study was normal, but the Neurologist doing it mentioned that particular study isnt good for testing the nerve in the neck and an MRI would be better (he didnt test it at all because of the difficulty to get a good test, just tested the arms and hands)

Now, different symptoms have started to flare while others have reduced.

Reduced:

• Pain down side of neck, dont get this much anymore
• Burnt tongue

New:

• Weak feeling in arms, particularly left (which is typically most symptomatic for everything). The arms and hands are physically still strong in the gym for example but they feel slow and like I would expect them to be weak by the feeling of them. Particularly in fine movements.
• Small bruises along the arm and hand. Had up to 3 appear at one time randomly, in bicep, middle forearm and between thumb and wrist. Quite small, only appeared as ‘yellow’ type healing brusies
• Headaches flare up again but this time mixed with moments of dizziness. The dizziness is only momentary and the world doesnt seem to be spin but I feel very off and need to take a couple of seconds to catch up and then can go again.
• Heartbeat in left early noticeable more often, previously just in exercise but now at rest I can often hear it
• High blood pressure episodes
• Occasional numbness in cheekbones
• Occasional left eye twitch

So, these new symptoms Im experiencing, are they common? Does anyone else have them, particularly the difficult to explain hand weakness with fine motor skills?

And, my plan is to return to my GP and request a neck MRI and maybe also positional CT if thats also useful, any other recommendation?

[Isaiah_40_31]

Your styloids are VERY LONG @SamH! I can’t believe Dr. Elliot dismissed you because you didn’t have a sore throat. That’s a mistake too many doctors make when diagnosing ES as there are a number of people who have ES but never have a sore throat.

I don’t think the bruising & difficulty with fine motor movements in your arms are related to ES, however, the spinal accessory nerve can be irritated or injured by elongated styloids & that nerve can affect the neck, shoulders, & upper arms so maybe you’re getting some referred symptoms from that?

Headaches can come from vascular compression but also can be caused by the trigeminal & possibly facial nerve. The fact you have dizziness w/ your headaches makes me wonder if your internal carotid artery(ies) are being irritated by your styloids. Hearing your heartbeat in your ears is called pulsatile tinnitus & can be a symptoms of internal jugular vein compression also caused by the styloids. Heart rate & blood pressure symptoms can be caused by the vagus nerve when it’s irritated. Your face & eye symptoms may be coming from a combination of the irritation of the trigeminal & facial nerves which I mentioned previously.

Here are some other doctors in NSW who are on our list as having done ES surgeries. You could try getting an appointment with one or more of them:

•Dr Andrew Salmon, University of Newcastle, University Drive, Callaghan, NSW 2308 https://www.newcastle.edu.au/profile/andrew-salmon
https://www.newcastle.edu.au/profile/andrew-salmon

•A/Prof Daniel Novakoviz, 66 Pacific Hwy, St Leonards NSW 2065,
ph# +61 1300 286 423

•Dr Prashant Rao (neuorsurgeon) and Dr Hubert Low ( Ent), Macquarie hospital Sydney- apparently have just started performing ES surgery.

[SamH]

Thanks for the reply Isaiah. I was also disappointed by how quickly Dr Elliot dismissed it, but it was about three months ago and I knew very little about it all and didn’t push further.

In regards to the arms, I should have been more specific and said hands. I’m getting hand pain, feels like in the finger joints but not sure if it’s actually joint related, I also get it in the middle of the palm. I notice some people have mentioned hand pain, but I couldn’t find anyone describe it more specifically than just pain so not sure if I’m experiencing the same thing.

Thanks for that list of other surgeons in the area, I’ll returning to my GP this week to advocate for more imaging and will look at these options for another referral.

[Jules]

I’m so sorry that you were dismissed! But those are mighty long styloids so I wouldn’t be surprised if you were having symptoms! I didn’t have any throat pain or trouble with swallowing which are often regarded as ‘essential’ ES symptoms, but I had jaw, ear, tooth & facial pain, & was luckily still diagnosed…don’t give up & keep pushing, I don’t know if you’re able to travel to one of the other doctors on the list, are you able to get referred to different areas with your healthcare system?

[Mod_support]

Hey Sam,
My name’s Merl, I’m a member of the Modsupport Team here on Ben’s friends.
I live near Adelaide. Here in Australia, through Medicare you can get access to a physician’s referral. A physician’s role is similar to a type of ‘medical investigator’. GP’s are fairly good with your ‘normal’ medical needs, but not everything is within that ‘normal’ criteria. Some medicos like to make out they know-it-all. They don’t. That’s why we have specialists, but specialists can sometimes be so specialised they don’t look at ANYTHING outside of their specific specialisation and this is where a physician can help.

A physician can look at the whole person, obtain scans, order tests and collate all of the information to come up with a more wholistic approach / diagnosis / treatment plan. And for people with more complex needs (or a rare condition) I’d recommend it and here’s why:

I have a brain tumour which has been operated on multiple times and due to all of it the side effects have been… let’s just say numerous. The surgeon’s view was “We operated. We fixed”. This is nothing like fixed. The GP’s view was “Well, the surgeon says it’s all fixed. So it must just be you… …Ohh, it can’t be THAT bad”. A work colleague suggested I see this physician she used. Me, personally, I’ve seen more Dr’s, specialists, gurus, wizards etc to last me 3 lifetimes. I didn’t want another, but I went anyway. It was one of my better moves.

He sent me to differing specialists etc and it was established that although the surgery had managed to deal with the initial diagnosis and issue, in doing so, they could now more clearly define the cause, rather than just the issue. Often these physician’s have their own network of specialists they use, so they have a prior relationship and understanding. This can help as then you don’t need to be the one making the initial contact. I’ve found that often ‘Dr to Dr’, they seem to relate better to each other and can be a little more accepting of information. Sometimes a patient saying the same thing can be seen as hearsay, but dr to dr, they accept it.

Now, I must also say here some Gp’s can be a little reluctant to make a physicians referral because it can be seen as questioning their knowledge (they don’t like that), but you have every right to ask for such a referral.

Best of luck with it all,
Merl from the Modsupport Team

[Jules]

Thanks for that info Merl & glad that you were able to see a good physician to help with some of your journey…

[strongman]

Hello SamH,
I hope you are doing well. Thanks for all the information you have shared here. You are suffer from symptoms similar to mine. In 2021, a brown spots and blackness appeared on my hands and feet, all on the extremities,
a tingling sensation in the left side of the face, a sense of coldness in the extremities, mild back pain, and a headache. I went to the doctor in my GP in Manchester city in the UK, who did a comprehensive full blood
tests and my GP did not find any reason for these symptoms. He referred me to a dermatologist in London who did a thorough examination of my skin symptoms, but after three months he did not find any reason for them. Then the dermatologist referred me to a neurologist, who did a number of tests,
but could not find a reason for it either.
Then, I did a Chinese acupuncture treatment, then in the same day a headache developed and increased with ringing (Tinnitus) in the ears and back pain spread in a strange way between the shoulders, back and
chest to the point that when I sleep on the right side or the left side I feel chest pain with hiccups and an increase in heartbeat. In addition, I feel similar to Electric shockwave in the back, neck, and body, especially at the time of relaxation when feeling sleepy. I went to a cardiologist and a neurologist in
Manchester, who did a number of medical tests, such as: Echocardiogram, EGG, 48-hour Holter sinus rhythm, CT angiogram, MR scan of the brain, cervical and thoracic and all were normal. Furthermore, I returned to my country, the Kingdom of Saudi Arabia, and I repeated all the examinations with the cardiologist, neurologist, and dermatologist, and they were also normal. The strange thing is that the symptoms increase with time, and the last time I had dry eyes, severe blurred vision, and hoarseness of the voice. Stomach shaking during my sleep, pulse in the body, and pain in
the stomach and kidneys. I did comprehensive examinations and MRI scans of all the
places of pain, and I followed up with a number of neurologists and musculoskeletal doctors in Britain, including Saudi Arabia, Jordan, and they did not find a specific reason for all of this. I did physiotherapy for two months, and I got a slight improvement, then the problem returned to the same as
the first and worse than the first. I did the breathing exercise for a quarter of an hour for one week, and I got terrible pain in the chest and back between the shoulders. It lasted for three days and still appears whenever I do the breathing exercise. Recently, I cannot do my daily activities like before. I cannot walk more than 15 to 20 min. My symptoms get worse if I concentrate more than 20 min in reading, writing, Watching TV/Mobile or laptop. Symptoms get worse with any of simple activities. If I do these activities, I will have
tinnitus/severe headache/ blurred visions, dizziness, insomnia, Severe weakness in the left hand, tremor, pulse in the body and I cannot move from my bed for the next 3 to 5 days. I feel numbness and weakness in the body especially under the knees. I feel numbness also in both side of my stomach but more in the left. If I sleep on my sides
especially my left side the symptoms get worse like numbness in the lower back from the knees, cold sensation in my body parts both hands and foots, Hot sensation in my middle fingers on both hands,
sever hiccup, pulse in the body especially the left side and stomach shaking.
Before these symptoms, I became infected with Corona virus. I do not do any sports activities except hiking and I have never had any accidents or traumas.I live in the Middle East in Saudi Arabia, but when these symptoms started, I was living in Britain. I visited many hospitals in six Arab and foreign countries, and they did not know the reason for this strange disease. Then I ended up ten months ago with Dr. Hauser in Florida. He diagnosed my condition as cervical instability and vagus nerve dysfunction, and prescribed six sessions of prolotherapy for me.

However, after six sessions, there was no clear improvement. Then he took a venogram scan to determine that I’m suffering from Eagle Syndrome, and he advised me to have surgery. I decided to return to my country, Saudi Arabia, to have surgery there, but the Saudi doctors strongly opposed this diagnosis and refused to do the surgery, saying that they did not agree with Dr. Hauser’s diagnosis.

Dr. Hauser encouraged me to have the surgery, but when I read what happened to some patients who do not experience any improvement in their symptoms after surgery, I realized that the Saudi doctors may be right, or their doubts about the diagnosis need to be considered.

I started treatment for cervical instability first with Dr. Hauser but my problem has not been solved and the symptoms are still ongoing and even increase with any daily activity I do. I lost my job a long time ago because of this disease.

Thank you very much SamH!

[Isaiah_40_31]

@strongman - There are many success stories about Eagle Syndrome surgeries as well as those that aren’t as successful. You have a more difficult diagnosis because of your cervical instability which may be the cause of your styloids elongating. We have members who have your same diagnosis who have had styloidectomies & have had excellent results from ES surgery but others who have your diagnosis have not had such good results. It’s very difficult to know what the right thing is to do when there is no guarantee about the outcome.

We have several members who have gone to Turkey to have Dr. Aghayev do their styloidectomies & so far, most have been very happy with their outcomes. Since you are so miserable, it might be worth seeing Dr. Aghayev to get his opinion.

The Saudi doctors you have seen do not seem to be experienced with ES & the potential good that styloidectomies can do for those suffering from the symptoms ES causes. They seem only to think of the surgery as too dangerous. In the hands of an experienced ES surgeon, having elongated styloids shortened can be life changing in a positive way. It is a major surgery and a difficult decision. You need to make a choice - whether to continue living disabled by your symptoms or to see an experienced ES surgeon and at least get an opinion as to whether surgery might help you.

•Dr. Kamran Aghayev - https://kamranaghayev.com

[Jules]

I do agree with @Isaiah_40_31 that there are many members who have had successful surgeries, but accept the CCI does make the situation more complicated.
There have been some discussions about CCI & the best treatment centres in the UK , one of our members @PatientD has posted good info, I will try to have a look for you, but one place which has been mentioned quite a few times is this clinic:
newportchiropractic.co.uk
I wouldn’t rule out the surgery or give up just yet, although obvs you’ve had a long battle so far with no solution…keep strong!

[strongman]

Hello Isaiah_40_31, thank you so much for your kind support and for providing the details about Dr. Aghayev in Turkey. I am familiar with this beautiful country, I have visited it twice before, and I will be happy to meet Dr. Aghayev in the coming period to take his advice. I hope this step will be in the right direction for my case. Thank you Isaiah_40_31!

[strongman]

Hello Jules, thank you so much for your kind support and help. I really appreciate your support. Unfortunately I don’t live in the UK now as I moved to Saudi Arabia a year ago. I will try to travel to Turkey in the near future to meet Dr. Aghayev and hopefully he can help me. Thank you for all the information you have provided.

[SamH]

Thanks for all the support and advice guys. I went to my GP appointment and he did a full reflex test (hit with the hammer situation). It was okay but my left hand didnt give a ‘great’ reaction. While my GP is great, he also never knew what Eagle Syndrome was prior to my CTs in the original investigation period, months ago, so he suggested since the ENT has stated he didnt think it was eagles that he should check off others thing it could be.

He ordered a load of different blood tests be done to test for a number of things such as RA. My inflammation markers have been slightly elevated ever since we started looking into this.

I go back to him this week for results. Before doing so I wanted as much info as I can, and so finally managed to get my CT scan files into a 3D viewer.

Now, as a layman - only having seen some CTs others have posted here, the thickness, angle and length seems to be on the “extra”-ordinary side… To the point that it almost seems impossible to me that it wouldnt be causing issues… but again, I dont have near as much experience as many of you and would love your input prior to returning to the Doctor. @Isaiah_40_31 and @Jules

Also, Merl from Modsupport, thanks a lot for the physician advice, never even knew they were different to GPs and something I will look into for sure.

@strongman Thanks for your support and telling me about your experiences. Definitely seems like a lot of it matches up with mine and gives me a lot to look through.

[Mod_support]

Hey Sam,

@SamH

Also, Merl from Modsupport, thanks a lot for the physician advice, never even knew they were different to GPs and something I will look into for sure.

It’s only because I’ve had the ‘joy’ of navigating the medical systems over many, many moons that I have some knowledge of how the systems work (Well, that should say ‘are supposed to work’). I’ve also been a medical advocate for my former clients, and sometimes the medical fraternity can make the whole process nothing short of a nightmare. They tend to be over protective of their own. By consulting a physician, they can breakdown some of that protectionism.

Merl from the Modsupport Team
:

[JugularEagle]

The amount of testing you have done and Doctors you have seen is incredible. And they have all missed what is glaringly obvious.

If you have the resources you might want to look into the few Doctors in the US who are experts at least for a consult.

Also, i would be interested to know what a Fiesta-c or 3d Ciss MRI would show on you with those crazy long styloids. You can ask the radiology department if they have the software and then try to get it ordered. Those styloids have to be banging on a lot of nerves. With all the money in the middle east surely the radiology department somewhere will have the software to run that scan.

I posted a video of a client from Dr Osborne who was having shaking “fits” of his entire body. Eagle syndrome surgery cleared it up. I honestly believe you need those things cut out of your body and nothing is going to really help until they are gone . But i am not a Doctor…just a fellow Eagle Syndrome sufferer.

You mentioned Covid. You may fit into my theory that people who have tolerated their styloids prior to Covid cant do so anymore because of additional damage to Vagus Nerve from Covid. A downhill snowball effect. Your Vagus nerve could be a big culprit of your problem. Just a working theory of mine .

[Jules]

Oh my goodness, how could that ENT dismiss your styloids!!! That’s crazy they’re right down to the hyoid bone! That means the hyoid bone, which is suspended and should be able to move up and down (it’s the only floating bone in the body) will be held tense and unable to move!
It does look as if there could be compression of the IJVs between the styloid and the C1 process, and in addition the hyoid bone processes (the greater cornu) look fairly long too, which can sometimes cause symptoms. I don’t know much about thyroid cartillage, but yours does look different to other people’s, it looks like there could be more calcification on that? I can’t find any CT images to compare it to, but this image shows it looking smooth?

Maybe others know more about this than me?
There are some online radiology sites who will look at CTs and point things out for a fee, but won’t diagnose you, I don’t know if that would be helpful…

[JugularEagle]

@Jules

Oh my goodness, how could that ENT dismiss your styloids!!!

This is shocking to me but I guess I shouldn’t be surprised. If we think we have it bad, just think about the poor souls before the internet. At least these days we have access to information and stories from all over the world.

I am grateful for Radiant Viewer that could help me visualize my problem that the neuroradiologist was astute enough to see.

[JugularEagle]

I don’t know all the places you have been but I found something that might help you. There is a 7 year old article about Eagle Syndrome that mentions:
Dr. Basem T. Jamal,
Consultant Oral & Maxillofacial Surgery/Head & Neck Surgical Oncology,
Department of Oral & Maxillofacial Surgery, King AbdulAziz University,
PO Box 80209 Jeddah 21589, Saudi Arabia.
E‑mail: bjamal@kau.edu.sa

I dont know where he works now but he has an instagram page. He might be able to provide info as to where to go to get help since he does know about the issue.

Saudi Society of Oral and Maxillofacial Surgery does have a twitter page. Someone there has to know about Eagle Syndrome

[strongman]

Hello JugularEagle,
Thank you very much for all the information that you provided about Dr. Basem T. Jamal. I’m from Saudi Arabia and this is the first time I hear about this doctor. I will read about him. I think he is an academic and researcher at King Abdulaziz University in Jeddah City in Saudi Arabia,but I don’t know if he works in a hospital or not.

Thank you all for this great support. I hope everything is fine for you SamH.

[JugularEagle]

Google indicates that Saudi will pay for people to get medical care in other countries if they can’t find an expert in country. Whatever office is responsible for that decision might be of use in trying to find help since they have to pay if you can’t find it.

However, if it is anything like the United States there will be a lot of red tape to get it done.

At some point that Doctor may have done some kind of work in the U.S. with the Doctor from Boston that was also an author of that Eagle Syndrome article

[strongman]

Thank you for your response and support. Yes, this is what actually happened to me. The Saudi Ministry of Health in my country referred me to one of the largest government hospital in the capital city, Riyadh, to evaluate my condition and see if I needed treatment abroad or not. However, the doctors at this hospital said that they disagreed with Dr. Hauser’s diagnosis and that I do not suffer from Eagle Syndrome. Note that the length of the styloid process is 4.5 cm. It is worth noting that treatment in the Kingdom of Saudi Arabia is free for all citizens. In cases of rare diseases that are difficult to treat internally, patients are transferred abroad at the state’s expense. This is a tremendous effort provided by the Saudi government, and it is truly to be thanked for it. But the problem lies in the diagnosis, which must be issued by a local government hospital, not from an external or private hospital. So I don’t have any internal diagnosis that proves that I have Eagle Syndrome and in fact Knowing that my symptoms are very close to the symptoms of Eagle Syndrome. But after discussing with a number of doctors in Saudi Arabia and also discussing with Dr. Osborne who confirmed to me that he does not guarantee a solution to my problems after surgery, I became hesitant to have surgery to remove the styloid process, especially with the very high cost of the surgery that I have to pay. Thank you very much JugularEagle!