A mix of diagnosis

General
1

Thank you for the welcome, I have a ton of questions. I have spent a few hours going through old post, but I am just getting overwhelmed. Maybe someone can help me with some answers. My greatest concern if finding connection with my own problems, and possible a connection to others who share my symptoms to help with a better understanding by doctors. Sorry this will be long.

About me: From a young age I suffered from severe neck and between shoulder blade pain. They continue, but I am not sure how much they relate. I also have very bad teeth. Back about 10 years ago, I suffered so much pain in what I thought my teeth I had one root canal after another trying to relieve it. After a number of them, a different Xray showed that in fact it was a sinus tumor. Removing that helped greatly. I also have TMJ, diagnosed as a child.

In 2013 while just sitting talking,I was stabbed with pain in both my right jaw and left side. It turned out the left side was shingles, the right jaw disc broken. ENT said the clench from the initial onset of shingles broke the jaw. At that time I was sent to a surgeon in Boston. He ordered another CT and when he got the results asked me exactly what things I feel on both sides of my jaw. I explained for a few years I often had a sensation on the left that I could not call pain, but at times a sudden electric shock came and went that did hurt for a short time.. He asked me to point out the area, and to his surprise I drew on my neck the exact area that he then told me was Eagles. He told me just the day before he taught a group of new Dr.s that there is no pain associated with Eagles. He then said but that is not why you are here so enough of that. I had right jaw surgery to clean out the broken disc and have not returned to him. Nothing about my Eagles has changed over the years, but I wonder if I am just missing it. After reading on this group, I am thinking what I was told was fat in the thyroid area but what feels like a lump in my neck is also something to question.

For years I have also suffered from positional vertigo. It seems allergy season brings it on. This year it hit earlier and more severe. My GP sent me to a balance specialist rather than ENT to have a different view. This dr. ordered a VEMP test that showed an inner ear problem. A high resolution CT showed Superior Canal Dehiscence Syndrome.on the same side as my Eagles. Many symptoms are caused from that such as migraines, hearing my heart beat, dizziness,and brain fog,.

It seems that it is so unlikely that I have been diagnosed with two separate rare diseases in the same general area. Also that I have so many things that have been close by. Has this happened to others?

2

Hi Ruthie,

I'm sorry that you've had problems for so long. but glad that some have been resolved, like your sinus tumour.

I think you're quite normal on here! A lot of members have more than one problem, which to us often seem linked, but because we have to see different doctors for their different specialities, are seen as separate conditions. There has definitely been discussions about SCDS, and some members with positional vertigo and also POTS. Again, many have thyroid and parathyroid problems.

I was diagnosed with classic ES, but had worsening symptoms, and scans then showed that the styloids were compressing the jugular veins. The symptoms I've had (dizziness, pulsatile tinnitus, brain fog, headaches, pressure in my ears) I think were down to increased pressure in the brain caused by this compression. They sound similar symptoms to your SCDS! I've had surgery one side, with an improvement in these symptoms.

Also there can be pressure/ irritation of the facial nerves which can cause pain along the jaw and if there's a weak point, like a filling in a tooth, then it can cause this to ache. I had a tooth re-filled because of constant toothache, but it's still the same, and my dentist explained that it could be being caused by irritation of the nerve elsewhere. It hasn't improved yet after surgery, but it's still early days! Having trigeminal or glossopharyngeal neuralgia is also common. Again, TMJD is another common diagnosis for people on here, whether it's alongside the ES or a misdiagnosis I'm not sure! Sinus problems and allergy problems also seem to be common, plus neck problems, bone spurs etc.

So please don't feel alone! I think probably most of us feel overwhelmed at times, and also bewildered and frustrated by trying to see how it all fits together, and trying to diagnose ourselves, or make doctors understand.... there is a doctors list which some members have kindly put together with doctors who've done successful surgeries, so you might find another doctor who is more sympathetic to ES?

PS: my own theory is that maybe ES is not actually that rare, but just isn't diagnosed very often!

3

Thank you for the information Jules, I didn't realize that Eagles also caused brain fog, dizziness, headaches and ear pressure. Now I will really have to think about surgery for either as i would hate to think I was having one fixed and find the problems are from the other!

4

I think it depends on the angle of styloids, and the length...not everyone has theses symptoms. Mine was vascular, and it was because they were pressing on the jugular veins- basically causing Intracranial Hypertension. I think those symptoms are common with SCDS too, so it would be difficult to tell what's causing what. I know you looked through past discussions, but a member a while ago did a survey to find out what symptoms we have, you could look at that.

Perhaps others with experience of vertigo, SCDS, TMJD or thyroid could help you too.

5

Have you ever had a venogram CT/ CT with contrast etc. to check the blood vessels in your neck? That would show if it's classic ES or vascular. It's good that the CT scan you had showed the SCDS though, isn't that quite difficult to spot?

6

I feel like I am learning so much, thank you. Yes I did have a CT that was to check on blood vessels because they thought there may be a blockage and there was not. Nothing was mentioned about ES at all, it was done through neurology.

7

Hi!

I think many of us have been diagnosed with several rare diseases. I have eagle syndrome on both sides, TMJ and atypical facial pain. What I have learned is that everything is connected. I had a doctor explain to me I needed to peel back the pain like an onion. I may not find one thing that cures me but I need to try several therapies.

I am now gluten free which lowers my inflammation in my body, I avoid process foods, juice, and exercise. Gluten free diets have been show to help brain fog as well. I have found a therapy called myo Kinestics by Dr. Mike where they work on muscle in balances including inner ear balances and I too have had major problems with my upper back which had turned into rock and a stabbing pain in my right shoulder blade. I wear a bit plate every night for my TMJ and the myo kinestics worked on my jaw as well. Meditation, dealing with my pain in a calm way and avoiding triggers which were hard to find was a big issue for me. I still get what some would call migraine headaches but they are located in my teeth and left side. Also my teeth are not the best and I have had a lot of dental work over the years. Now I have weak bones due to the medications I have been put on over the long 9 years since my pain started.

I start every day as a chance to do better for my body and I wish you good lick in your journey.

8

I just wanted to throw something out there .... years ago I had dizziness, vertigo, brain fog, I was constantly poking at my upper neck right under my chin trying to get relief for something no one could figure out. In addition, I had had episodes of my jaw locking, I had horrible neck and shoulder spasms for which I could not find relief. I went through all kinds tests and had a ton of blood work, countless imaging, etc. etc.. My neurologist thought I might have Eagles and went through imaging for that (which was negative). I had a VENG test which showed I had an abnormality of my central nervous system but no one offered any explanation. I had a sleep study and it was discovered I had oxygen desaturation episodes and was put on supplemental oxygen at night. MS, lupus, sarcodosis, paraneoplastic syndromes, Eagles and more were ruled out. I had imaging of my ear canals, my sinuses .. it went on and on. Finally I was evaluated for a connective tissue disorder and it was found that I have Ehlers Danlos Syndrome (EDS) which connected so many dots. But the vertigo, dizziness, brain fog, desaturation things still persisted including issues with my eye. After a very long search on my own to get things figured out I ended up with a diagnosis of Chari, craniocervical instability and tethered cord - all comorbid conditions of EDS (POTS, dysautonomia, hydrocephalus and others are also associated with chiari).

Can I ask you a weird question? Are you flexible in your joints? It's a clue to EDS and it's missed very often and EDS can affect practically any body system as it's a genetic defect in the collagen, the protein that makes up the "glue" that provides stability to skin, muscles, tendons, ligaments, blood vessels, organs, gums, eyes, etc. EDS and chiari often mimic other things and they can have a long list of symptoms. Anyway, there's the condensed version of what has been a very long story and I wanted to share it as at one time it was thought I might have Eagles in case it's helpful to anyone else.

9

Wow, EDSmess, you have had a long fight for a diagnosis. Presumably anyone who's concerned about this or Chiairi could message you or look at the Ben's Friends pages for those. I am sorry that you've been through so much and hope that you can get some treatment for these rare diseases.

10

EDSness Thank you for all of that info. I have had many test and I know for sure that I have both Eagles and SCDS. There was a time that I could say yes I am very flexible, but not any longer, so I would not think I have EDS, but I do have an issue with my heart rate and blood pressure that has been a concern at times through the years. I had a tilt a few months ago and it was questionable for something else, but not positive. The dr. said that he may repeat it in a couple of months. I just feel like I have so much to learn and am happy to have this group as I see there is a ton of help..

ann said:

Hi!

I think many of us have been diagnosed with several rare diseases. I have eagle syndrome on both sides, TMJ and atypical facial pain. What I have learned is that everything is connected. I had a doctor explain to me I needed to peel back the pain like an onion. I may not find one thing that cures me but I need to try several therapies.

I am now gluten free which lowers my inflammation in my body, I avoid process foods, juice, and exercise. Gluten free diets have been show to help brain fog as well. I have found a therapy called myo Kinestics by Dr. Mike where they work on muscle in balances including inner ear balances and I too have had major problems with my upper back which had turned into rock and a stabbing pain in my right shoulder blade. I wear a bit plate every night for my TMJ and the myo kinestics worked on my jaw as well. Meditation, dealing with my pain in a calm way and avoiding triggers which were hard to find was a big issue for me. I still get what some would call migraine headaches but they are located in my teeth and left side. Also my teeth are not the best and I have had a lot of dental work over the years. Now I have weak bones due to the medications I have been put on over the long 9 years since my pain started.

I start every day as a chance to do better for my body and I wish you good lick in your journey.

11

Ann, I am really enjoying all the information shared here. Although I hate to have others going through so much, it is good to know I am hearing from those that understand. My Eagles is on both sides also, but the left is longer. I believe that so many of these facial bone and nerve diseases have to be related at some point also. That is why I have been searching. When I went to the balance specialist that got me a diagnosis fast of SCDS, I asked him if it was related to Eagles and he had never heard of Eagles! I was surprised as that is in the same area, and he is the specialist.

I have migraines also and over the past two weeks have started a seizure med that seems to be helping with all of my symptoms. I don't want to get over excited yet because I know I get better and worse, but maybe the pills are helping.

ann said:

Hi!

I think many of us have been diagnosed with several rare diseases. I have eagle syndrome on both sides, TMJ and atypical facial pain. What I have learned is that everything is connected. I had a doctor explain to me I needed to peel back the pain like an onion. I may not find one thing that cures me but I need to try several therapies.

I am now gluten free which lowers my inflammation in my body, I avoid process foods, juice, and exercise. Gluten free diets have been show to help brain fog as well. I have found a therapy called myo Kinestics by Dr. Mike where they work on muscle in balances including inner ear balances and I too have had major problems with my upper back which had turned into rock and a stabbing pain in my right shoulder blade. I wear a bit plate every night for my TMJ and the myo kinestics worked on my jaw as well. Meditation, dealing with my pain in a calm way and avoiding triggers which were hard to find was a big issue for me. I still get what some would call migraine headaches but they are located in my teeth and left side. Also my teeth are not the best and I have had a lot of dental work over the years. Now I have weak bones due to the medications I have been put on over the long 9 years since my pain started.

I start every day as a chance to do better for my body and I wish you good lick in your journey.

12

This just gets more and more interesting. Especially a possible connection to EDS. I think I and one of my daughters have a lesser case of it. I also have ENS/empty nose syndrome and there could be a possible connection with the sinuses and EDS. This Doc in this video explains some of it.

https://www.youtube.com/watch?v=vWIGPylrGgg



EDSmess said:

I just wanted to throw something out there .... years ago I had dizziness, vertigo, brain fog, I was constantly poking at my upper neck right under my chin trying to get relief for something no one could figure out. In addition, I had had episodes of my jaw locking, I had horrible neck and shoulder spasms for which I could not find relief. I went through all kinds tests and had a ton of blood work, countless imaging, etc. etc.. My neurologist thought I might have Eagles and went through imaging for that (which was negative). I had a VENG test which showed I had an abnormality of my central nervous system but no one offered any explanation. I had a sleep study and it was discovered I had oxygen desaturation episodes and was put on supplemental oxygen at night. MS, lupus, sarcodosis, paraneoplastic syndromes, Eagles and more were ruled out. I had imaging of my ear canals, my sinuses .. it went on and on. Finally I was evaluated for a connective tissue disorder and it was found that I have Ehlers Danlos Syndrome (EDS) which connected so many dots. But the vertigo, dizziness, brain fog, desaturation things still persisted including issues with my eye. After a very long search on my own to get things figured out I ended up with a diagnosis of Chari, craniocervical instability and tethered cord - all comorbid conditions of EDS (POTS, dysautonomia, hydrocephalus and others are also associated with chiari).

Can I ask you a weird question? Are you flexible in your joints? It's a clue to EDS and it's missed very often and EDS can affect practically any body system as it's a genetic defect in the collagen, the protein that makes up the "glue" that provides stability to skin, muscles, tendons, ligaments, blood vessels, organs, gums, eyes, etc. EDS and chiari often mimic other things and they can have a long list of symptoms. Anyway, there's the condensed version of what has been a very long story and I wanted to share it as at one time it was thought I might have Eagles in case it's helpful to anyone else.

13

Wow, it seems that more and more connections may be made. However, I do not have either of the ones that you mentioned. I had never heard of either though and enjoyed learning about both. So far although I had the sinus tumor I have not had a lot of other trouble other than allergies and a deviated septum in my nose area..

14


Good morning,

I was put on seizure medication as well. I have found that it cost my bones dearly. All medication causes acid in your body and you we much work to balance this. While going through several medication for my head pain no one told me to work hard on keeping my bones strong. Myo Kenistics is just one for of none invasive treatment for migraine pain. Eating healthy, getting blood flow through your body with walking or some for of exercise does negatively effect our body. Learning about meditation or some form of stress relief is over all good for out body.......to me medication is what typical doctors give us as a first level of cure when it should be our last defense. I spent 4 years on medications trials before I understood I needed to do none invasive treatments with 20 percent mediation when I got in real trouble. I go through about 5 really tough days a month with medication but can make it 25 days a month with out right now. That is a big success. Diet, exercise, meditation and staying off the computer and other things that cause my neck and face stress is a big key in my reduction of pain. most people don't look at how the activities of everyday life causes the pain to intensify, yesterday I got a new phone and tried to input my phone numbers into it. I found that after about 5 numbers from looking down my face pain and migraine got worse. Please keep a diary of what you are doing and eating to see what and when your pain starts to get worse, this will be a key to keeping you pain in bay. To me labels help us have understanding of what we have but the cure or pain can sometimes can be with in our own reach.

Good luck and have a wonderful weekend

Ann
Ruthie said:

Ann, I am really enjoying all the information shared here. Although I hate to have others going through so much, it is good to know I am hearing from those that understand. My Eagles is on both sides also, but the left is longer. I believe that so many of these facial bone and nerve diseases have to be related at some point also. That is why I have been searching. When I went to the balance specialist that got me a diagnosis fast of SCDS, I asked him if it was related to Eagles and he had never heard of Eagles! I was surprised as that is in the same area, and he is the specialist.

I have migraines also and over the past two weeks have started a seizure med that seems to be helping with all of my symptoms. I don't want to get over excited yet because I know I get better and worse, but maybe the pills are helping.

ann said:

Hi!

I think many of us have been diagnosed with several rare diseases. I have eagle syndrome on both sides, TMJ and atypical facial pain. What I have learned is that everything is connected. I had a doctor explain to me I needed to peel back the pain like an onion. I may not find one thing that cures me but I need to try several therapies.

I am now gluten free which lowers my inflammation in my body, I avoid process foods, juice, and exercise. Gluten free diets have been show to help brain fog as well. I have found a therapy called myo Kinestics by Dr. Mike where they work on muscle in balances including inner ear balances and I too have had major problems with my upper back which had turned into rock and a stabbing pain in my right shoulder blade. I wear a bit plate every night for my TMJ and the myo kinestics worked on my jaw as well. Meditation, dealing with my pain in a calm way and avoiding triggers which were hard to find was a big issue for me. I still get what some would call migraine headaches but they are located in my teeth and left side. Also my teeth are not the best and I have had a lot of dental work over the years. Now I have weak bones due to the medications I have been put on over the long 9 years since my pain started.

I start every day as a chance to do better for my body and I wish you good lick in your journey.

15

Hi Ruthie,

Sounds like you have been through a lot...sorry to hear about that. I can relate to a few symptoms that you are having. I was just diagnosed with Eagle's Syndrome by my dentist last month. She did a panoramic radiograph and she found that I have calcified stylohyoid ligaments on both sides, the left is worse than the right. I am awaiting more imaging of my neck to find out more. My ENT has ordered a CT of my neck with contrast dye, hopefully I will get that done within the next month or so.

I get a sharp stabbing pain in my left jaw. It will happen suddenly or can happen if I open my jaw wide/talk/ yawn etc. It lasts for about 15 seconds or so, then goes away. It can happen multiple times throughout the day or might not happen for a few weeks at a time. It comes and goes. Really all of my symptoms do. I have been told previously that I have TMJ, and that's what's causing the jaw pain. I think I have both, according to the x-ray the dentist did last month.

I have some problems with my nose as well. Not sure if it is related or not, but I was born with a deviated septum in my nose. I had my first surgery to correct the right side in 1998, but I had such a bad experience with that ENT that I decided that I wasn't going to do anything else to fix it. Then, in 2012, I was diagnosed with sleep apnea, and was referred to another ENT who was lovely. She did the second septoplasty, on the left side in 2014 and I also had a turbinate reduction done at the same time. I now have a much better air flow through my nose and I must say it is so nice to be able to breathe!

I get headaches as well, usually above my left eye in my forehead. Sometimes they are dull constant pain, and sometimes it is a sharp stabbing pain that lasts for a few seconds, then goes away and comes back a few seconds later and then goes away and continues on for hours. I usually get nauseated and sometimes vomit as well. I was diagnosed with migraine headaches in 2012. I started on a gluten free diet in 2012, which significantly reduced my headaches. Before I took gluten out, I had a "migraine" every single day. I get them a few times a month now.

I get really itchy ears and nose too, that will last about 30 seconds then stop and come and go. I get dizzy often, I also get dizzy if I get up too fast. I get IBS symptoms very often. Neck pain, shoulder pain, pain when I turn my head.

I had my tonsils removed this past January because I was coughing up tonsil stones (caused by chronic tonsillitis). I felt amazing for the month of March, then mid April I started to feel awful again. I went back to the ENT because I was all swollen under my chin again. She told me that it was my salivary gland, the submandibular gland that was swollen. She thought there was a blockage or something. I'm still waiting for more testing on that as well, but I bet that it has to do with Eagles.

I hear my heart beat sometimes too, actually that happened to me yesterday. I get ringing in my ears too sometimes.

There are so many different things that have been happening to me for at least 15 years. I just turned 34, so about half of my life.

I wish you all the best of luck :)

16

Farm Girl,

Thank you for sharing, I am more and more convinced that so many symptoms are so similar there has to be a connection between SCDS and Eagles. I for sure would ask your ENT that is ordering the CT to make sure it is a high density and includes the area needed to check on SCDS while they are doing it. There may be insurance issues that will not allow that to happen, but it makes sense to get it all done with one CT. I will we interested to hear what the outcome is and I hope that you can find a solution fast to feeling better. Ruthie.

Farm Girl said:

Hi Ruthie,

Sounds like you have been through a lot...sorry to hear about that. I can relate to a few symptoms that you are having. I was just diagnosed with Eagle's Syndrome by my dentist last month. She did a panoramic radiograph and she found that I have calcified stylohyoid ligaments on both sides, the left is worse than the right. I am awaiting more imaging of my neck to find out more. My ENT has ordered a CT of my neck with contrast dye, hopefully I will get that done within the next month or so.

I get a sharp stabbing pain in my left jaw. It will happen suddenly or can happen if I open my jaw wide/talk/ yawn etc. It lasts for about 15 seconds or so, then goes away. It can happen multiple times throughout the day or might not happen for a few weeks at a time. It comes and goes. Really all of my symptoms do. I have been told previously that I have TMJ, and that's what's causing the jaw pain. I think I have both, according to the x-ray the dentist did last month.

I have some problems with my nose as well. Not sure if it is related or not, but I was born with a deviated septum in my nose. I had my first surgery to correct the right side in 1998, but I had such a bad experience with that ENT that I decided that I wasn't going to do anything else to fix it. Then, in 2012, I was diagnosed with sleep apnea, and was referred to another ENT who was lovely. She did the second septoplasty, on the left side in 2014 and I also had a turbinate reduction done at the same time. I now have a much better air flow through my nose and I must say it is so nice to be able to breathe!

I get headaches as well, usually above my left eye in my forehead. Sometimes they are dull constant pain, and sometimes it is a sharp stabbing pain that lasts for a few seconds, then goes away and comes back a few seconds later and then goes away and continues on for hours. I usually get nauseated and sometimes vomit as well. I was diagnosed with migraine headaches in 2012. I started on a gluten free diet in 2012, which significantly reduced my headaches. Before I took gluten out, I had a "migraine" every single day. I get them a few times a month now.

I get really itchy ears and nose too, that will last about 30 seconds then stop and come and go. I get dizzy often, I also get dizzy if I get up too fast. I get IBS symptoms very often. Neck pain, shoulder pain, pain when I turn my head.

I had my tonsils removed this past January because I was coughing up tonsil stones (caused by chronic tonsillitis). I felt amazing for the month of March, then mid April I started to feel awful again. I went back to the ENT because I was all swollen under my chin again. She told me that it was my salivary gland, the submandibular gland that was swollen. She thought there was a blockage or something. I'm still waiting for more testing on that as well, but I bet that it has to do with Eagles.

I hear my heart beat sometimes too, actually that happened to me yesterday. I get ringing in my ears too sometimes.

There are so many different things that have been happening to me for at least 15 years. I just turned 34, so about half of my life.

I wish you all the best of luck :)

17

I have had similar symptoms. Brain fog, heart beat in ear ( pulsatile tinnitus).
I had a perilymph fistula which is a hole between inner and middle ear. Vascular eagle syndrome.
You could have SCDS.
It is all related.
The vascular eagle causes intracranial hypertension due to limit of venous blood flow from head. Blood flow helps remove CSF from brain. A build up of CSF in brain which in turn causes pressure on inner ear bones . Semicircular canal.
There is an article in Tinnitus journal I will try and find it. Also join pulsatile tinnitus group on Facebook and SCDS on FB.

18

I can't remember which member first mentioned this (sorry, whoever did!), but there's also a website called 'whooshers', and that's all about pulsatile tinnitus (hearing your heartbeat), with some interesting studies. I found it helpful.

19

Thank you Ruth,

Yes I do for sure have SCDS and ES. My goal is to be able to bring reports to my Dr. showing they must be somehow related. It just seems to me that there is a reason I have so many problems all in the face and head. I am also post op for a sinus tumor, and a broken jaw disc (TMJ) so those diagnosis are confirmed as well. I also believe that my neck pain and down into between my shoulders along with the pain at the base of my skull must be related. It just feels that I have so many complaints no one believes me and I want them to KNOW they are real. I do have to say that I have a great GP that does believe I am not feeling well, but he is baffled.

One more thing, I am so thankful to find all the info over the past couple of weeks, but because of my brain fog, I am extremely overwhelmed with figuring it out! Thank you for the help, I will keep on reading

Ruth said:

I have had similar symptoms. Brain fog, heart beat in ear ( pulsatile tinnitus).
I had a perilymph fistula which is a hole between inner and middle ear. Vascular eagle syndrome.
You could have SCDS.
It is all related.
The vascular eagle causes intracranial hypertension due to limit of venous blood flow from head. Blood flow helps remove CSF from brain. A build up of CSF in brain which in turn causes pressure on inner ear bones . Semicircular canal.
There is an article in Tinnitus journal I will try and find it. Also join pulsatile tinnitus group on Facebook and SCDS on FB.

20

Thank you Jules,

Just spent an hour or so on whooshers. I am overwhelmed with all the info out there! I have to rest this brain for a bit then get back in to sort things out! I really love all the help that I have found here

Jules said:

I can't remember which member first mentioned this (sorry, whoever did!), but there's also a website called 'whooshers', and that's all about pulsatile tinnitus (hearing your heartbeat), with some interesting studies. I found it helpful.