Mayo says ES is "controversial"

Hi all,

After waiting for an opening I finally got into Mayo Clinic under the umbrella of neurology for trigeminal neuralgia. ( I had already been rejected for ES so wanted to get in another way.) The trigeminal nerve is right around the base of the ear and my cranio-sacral therapist has been working on that nerve for years, blaming it for much of my chronic pain.

SO ... I get to the appointment with my sweet 81 year old father and the doctor says, right off the bat, that I do not have trigeminal neuralgia. A standard case would be having episodes of excruciating, lightening-like pain that brings you to your knees. I get these, but thankfully less than a dozen a year. They literally feel like you got struck my lightening and last a minute or two.

I told the doctor I had these too and that I could live with them but that it was the chronic non-stop pain in my jaw area that was killing me. Although she had all my scans/MRI's (which she said she'd already looked at) I took out the picture from my cone X-Ray showing my 6.5 and 5.8 styloids. I wondered whether, if they were pressing against the nerves, wouldn't they cause pain?

Then she got all stuffy and said the nerve I was talking about would be the greater auricular nerve. It starts mid-throat then goes up, splitting tightly around the base of the ear. Again, I say fine, wouldn't that nerve cause pain if compressed.

She finally said that perhaps a nerve block of the greater auricular would help and also said I had arthritis at C2-C3 and maybe shots there would help.

++ In an effort to try to summarize this, I'll just say I left 2 days later very disheartened by my other appointments. My father got home and called around and insisted I come up to NYC (I live in the DC area) and see specialists at NYU.

I did that the week before last. The four appointments went as follows:

1. The ENT said I did not have the typical ES symptoms. I have no pain when turning/twisting my neck (though I can feel them, but there is no discomfort) and no problems swallowing. He therefore said he didn't think surgery would help at all. He surmised that I have TMJ.

2. The neurologist did more MRI's and found that the styloids were not compressing the carotid and that there was no evidence of a vascular EDS.

3. The dental expert said I probably had TMJ (MRI later verified severe thinning meniscus and a tear on the right, moderate meniscus thinning on the left) but said probably ES, EDS and Fibromyalgia all contributed. He's supposed to call me back to tell me what the next step is, likely wearing an appliance at night (which I already did for 10+ years ... fitted by an orthodontist at a cost of $1,200)

4. The geneticist said I didn't have a clear case of EDS and my pain was from the four above-named issues.

Honestly, I end up thinking I am cuckoo until I get back to this site. Does anyone else have pain in their jaw/behind the ear from the styloids or am I off base?

I honestly don't care what it's called, I just want the pain to go away. None of the doctors thought that removing the styloid would help. I did see a dr. in Pittsburgh almost a year ago who was willing to do the surgery but he said that he couldn't promise it would help. First, he'd go in at the neck and then go up, since my styloids are so long. Second, he thought that it's been so long (20 years that I've been in pain) that the damage was already done to the nerves. (He didn't name which ones).

So sorry to dump all of this. Guess I'm needing a hug!

I did get some good advice, a book called Hypermobility, Fibromyalgia and Chronic Pain, edited by Hakim, Keer and Grahame. It's not cheap, over $60 on Amazon. Sadly, it's over my head; it's written for health care professionals. I'd be happy to lend to anyone wanting to read it; maybe we can pass it around this group.

Be well all,

Hopeful

Hopeful,

Wow, that's so discouraging. Here is a hug for you. You need to see a doctor that has more Eagles experience. Look at Emma's list. There are a couple doctors in Philadelphia. Please know that you're not crazy. There are lots of weird symptoms with Eagles. Best of luck to you.

I do have pain in my left jaw and throat, near where a tonsil would be. Also, puffiness and swelling. But, no one wil even address the issue.

What is Emma's list?? I need a doctor in St. louis, Mo.



heidemt said:

Hopeful,

Wow, that's so discouraging. Here is a hug for you. You need to see a doctor that has more Eagles experience. Look at Emma's list. There are a couple doctors in Philadelphia. Please know that you're not crazy. There are lots of weird symptoms with Eagles. Best of luck to you.

Hopeful,

I think that Dr.'s dismissing our symptoms because they're 'not typical ES' is a very common theme! I've just had a bit of that too! I don't get pain swallowing, and only occasionally feel something pressing into my throat, or something catching in my throat. Mostly where I feel the pain is under the jaw, and round my ears, under my tongue... Have you seen the recent discussion re 'DISH'? I read the discussion and googled it quickly yesterday, not a length, but that looks quite interesting, and it seems to be very common that so many on here have other neck problems like arthritis and bone spurs which fits in with that theory. Have a look. You know what you feel though, and you have scans to prove it- it stands to reason if you've got those things sticking into your throat then you're going to feel it! I'm going to print off some discussions (is that okay?) and linked articles to take with me to my next apt- so my Dr. can see that there aren't necessarily any 'typical' symptoms!

Good luck, and we all know how you feel,

God bless,

Jules

Jules, about a year or so ago a number of us responded to a survey another poster had about symptoms and other questions. That would be a good thing to show your doctor too. It was discussed a couple months ago, so you could probably find it fairly quickly. It shows a wide variety of symptoms.

kcassity, Emma is one of our posters and she started compiling a list of the doctors we've had surgeries with - with good outcomes. Please be aware that many of us have to travel out of state. Do a search for the list or just start reading back posts for lots of information.

i feel for you. Hugs. I cant get a doc to take me seriously. Have had 2 CTs that show the ES but the ENT isnt sure thats what it is. :(

~~ Thank you all so much for the hugs! I am feeling much better today, pain wise ~~ which certainly makes everything look brighter. I know we're all in the same boat, all SO happy when one of us has a successful surgery. I think much of my frustration is that I'm no longer sure surgery would even help in my case.

Perhaps I will try the nerve block; maybe that is my path. After all, each of us has a unique set of styloids and accompanying issues. Maybe surgery isn't the answer for everyone. I think the reason I was hoping for surgery is that, in my mind/day dreams, you do it and then the problem is solved. I want my pain solved in one fell swoop.

Oh well!!!

Thank you all again for your support,

Hopeful

Something has to be done about Mayo. They have told me simply "we dont deny its there and a problem but we just dont deal with it" So they just let the thing grow into peoples throats etc? I don't understand this. I sent them my records from first surgery and surgeons recommendation that the other be operated on. They have been sitting on it for awhile, its like they are afraid to deal with it?

Ironically I just got in the mail the full report from Mayo. The original neurologist who so 'pooh poohed' ES says in her notes that "it is possible that the elongated styloid processes are contributing to her symptoms, though it seems unusual that she has no odynophagia or dysphagia. She does have bilateral whooshing tinnitus, however."

So somewhat of a concession. The neurosurgeon's notes said that this (my symptoms) is largely in the ENT realm.

~~When I went to Mayo in 1989/90 they flatly refused to believe chronic fatigue syndrome existed. They eventually diagnosed me with post viral syndrome.

I guess they aren't ahead of the learning curve!

Hopeful

Holy, I have been through exact same thing you have EXACT. They diagnosed me with cfs in 2003! It was only in 2011 when one of the styloids had grown so large it was visible in my throat that someone finally said "oh your right thats not a fatty cyst its bone!" Actually a nurse at my clinic touched it and said thats no cyst you need to go back to ent. Anyway that is hopeful, hopeful. I will let you know when they get back to me.

Hello Hopeful…I too am having a difficult time getting a so called “specialist” to realize that I indeed DO have ES. I was acutally diagnosed by my ENT almost as soon as the symptomes started, but she does not know much about ES to treat. With her help, I have seen a “specialist” at Loyola Medical Center who told me, after looking at my CT scan that clearly showes ES and does an examination, that although I have what “looks like” ES, I actually have tonsilitis!! REALLY!!! Because he couldn’t feel the styloid at the back of my throat…HMMMMM glad I paid for his boat payment that month for a diagnosis of tonsilitis!! Then I went to a TMJ specailist and yes, I do have ES and massive TMJ, she wants to only treat the TMJ and keep the ES from growing so she wants me to stay away from all wheat to keep it under control…If this is control, I don’t want to expereience “out” of control!! My symptoms are as follows and if you or anyone could relate I would appreciate the feedback…
I have sever pain in my ear, a very deep pain. It goes down my neck, into my jaw, down and into my thorat. I cannot move my head to the left without extreme pain. I get pain shooting from the back of my scull that goes down my arm into my hands and fingers to the point that I cannot even hold a pencil.
I am going to see one more doctor that my ENT wants me to see ASAP so I will keep you posted on how that went…

Sorry to hear that you are having troubles with a defintive diagnosis Hopeful. I can't speak to your particular situation because I am not a Doctor but I can tell you a little about my experience with ES which will show you that you have to be persistent. Mine started with severe neck pain that went on for years (5+). Went to many different Drs who said it was disc problems, bone spurs, TMJ, etc, etc, etc. I was treated for TMJ for more than a year with some relief. I was also having a popping which felt like it was my jaw but I would get a vagus nerve response from it (sweating profusely, short of breath, excruciating pain lasting up to 2 minutes - try explaining that one to a Dr and you get strange looks) After going through all the treatments I had a stroke. Nobody could definitively determine why I had the stroke but I was persistent and went to several neurologists before seeing a Vascular Neurologist, which is when they found the ES. The neck pain for all those years was the ES but additionally I had a dissection in my carotid artery caused by my Styloid Process (also note that the vagus nerve runs close to your carotid which was also being hit by the styloid). My styloid measured somewhere around 50mm and since been removed on that side.

What I have concluded from all of this is, and I disclose that I have no medical background but did a lot of research on my own and used common sense, that its not necessarily the length of the styloid process but the direction in which it elongates and what structures are in that general area(hence wide array of symptoms). Mine happened to deviate further down my neck instead of towards the throat which put it in contact with my carotid artery and vagus nerve. My other side is elongated as well but i have no symptoms from it because its no where near my carotid. I had no occlusion of the carotid but it apparently was just long enough to create a very small tear in the artery wall causing clots to form hence a stroke.

You know your own body and symptoms. People thought I was crazy for years until I had the stroke and even more crazy for not just excepting the unknown diagnosis until the "real" problem was discovered. If you are not satisfied with the results seek different explanations elsewhere. Sometimes you have to sort through the sub-specialties to find someone who has had experience with similar symptoms. When I went to the vascular neurologist and showed where my neck hurt they immediately thought dissection which was confirmed on scans done while I was in the hospital with the stroke but was missed because everyone suspected it was the disc problems (that I didn't have) and didn't truly understand the symptom.

Hang in there and keep seeking answers if your not satisfied. You are not crazy.

Gosh, your symptom (pain on turning head/neck) sounds like classic ES. ~~ It's insane, that doctors are just handing us off from one specialist to another. No one seems to want to deal with this. Or they don't know how.

Good luck at the next appointment,

Hopeful

imunique724 said:

Hello Hopeful..I too am having a difficult time getting a so called "specialist" to realize that I indeed DO have ES. I was acutally diagnosed by my ENT almost as soon as the symptomes started, but she does not know much about ES to treat. With her help, I have seen a "specialist" at Loyola Medical Center who told me, after looking at my CT scan that clearly showes ES and does an examination, that although I have what "looks like" ES, I actually have tonsilitis!! REALLY??!!!!! Because he couldn't feel the styloid at the back of my throat...HMMMMM glad I paid for his boat payment that month for a diagnosis of tonsilitis!! Then I went to a TMJ specailist and yes, I do have ES and massive TMJ, she wants to only treat the TMJ and keep the ES from growing so she wants me to stay away from all wheat to keep it under control...If this is control, I don't want to expereience "out" of control!! My symptoms are as follows and if you or anyone could relate I would appreciate the feedback....
I have sever pain in my ear, a very deep pain. It goes down my neck, into my jaw, down and into my thorat. I cannot move my head to the left without extreme pain. I get pain shooting from the back of my scull that goes down my arm into my hands and fingers to the point that I cannot even hold a pencil.
I am going to see one more doctor that my ENT wants me to see ASAP so I will keep you posted on how that went......

Hi Hopeful,

Consider yourself hugged!!

I get pain behind my ears. Don't know the length of my styloids but surgery was recommended by Dr. Samji in San Jose, CA, because I'm very physically active. He said because of the length of my styloids, if I left them as they are, my physical activities would become limited. He did say there are people who elect not to have surgery. He prescribes Neurontin which, I guess, successfully controls their nerve pain. My styloids are very close to touching my hyoid bone at this point. I don't have pain when I move my head, but like you, I can feel the styloids poking in my throat & bothering my inner ears when I do certain head movements. My pain is annoying but not incapacitating. It's transient hurting one place for awhile then another later. Dr. Samji removes the styloids at the skull so there are no pointy bits left inside to create later problems. He also only does one at a time & requires a 6 month recovery period between surgeries. That put me off a bit, but he said it allows for a quicker, less painful & more complication free healing process.

If all else fails in the east, you might want to save up & take a trip to San Jose, CA to see Dr. Samji. At this point he's done over 65 ES surgeries. He said he does 2-4 ES surgeries per month. He's becoming very knowledgeable on this subject & adept at the surgical procedure for it.

I will also pray for your situation & that you are able to find the care & advice you need to help relieve your pain.

Isaiah 40:31

Emma - a who posts on this site has put together a list of doctors around the world who do ES surgery. Here is the link to her latest updated list:

http://forum.livingwitheagle.org/forum/topics/doctors-spreadsheet-update-september-17-2014


kcassity said:

What is Emma's list?? I need a doctor in St. louis, Mo.



heidemt said:

Hopeful,

Wow, that's so discouraging. Here is a hug for you. You need to see a doctor that has more Eagles experience. Look at Emma's list. There are a couple doctors in Philadelphia. Please know that you're not crazy. There are lots of weird symptoms with Eagles. Best of luck to you.

http://forum.livingwitheagle.org/forum/topics/doctors-spreadsheet-update-september-17-2014

Above is the link to Emma's most current ES surgeons. Check it out if you haven't. :)

See my reply to kcassity w/ the link to Emma's list. It will be helpful for you, too!

Isaiah 40:31

imunique724 said:

Hello Hopeful..I too am having a difficult time getting a so called "specialist" to realize that I indeed DO have ES. I was acutally diagnosed by my ENT almost as soon as the symptomes started, but she does not know much about ES to treat. With her help, I have seen a "specialist" at Loyola Medical Center who told me, after looking at my CT scan that clearly showes ES and does an examination, that although I have what "looks like" ES, I actually have tonsilitis!! REALLY??!!!!! Because he couldn't feel the styloid at the back of my throat...HMMMMM glad I paid for his boat payment that month for a diagnosis of tonsilitis!! Then I went to a TMJ specailist and yes, I do have ES and massive TMJ, she wants to only treat the TMJ and keep the ES from growing so she wants me to stay away from all wheat to keep it under control...If this is control, I don't want to expereience "out" of control!! My symptoms are as follows and if you or anyone could relate I would appreciate the feedback....
I have sever pain in my ear, a very deep pain. It goes down my neck, into my jaw, down and into my thorat. I cannot move my head to the left without extreme pain. I get pain shooting from the back of my scull that goes down my arm into my hands and fingers to the point that I cannot even hold a pencil.
I am going to see one more doctor that my ENT wants me to see ASAP so I will keep you posted on how that went......

Yes dkel9307 I do have a Dr that diagnosed the ES but one of my points with that long response was that it was a vascular neurologist that is also a interventional radiologist that made the diagnosis. It was diagnosed based on the dissection in my internal carotid and looking for possible explanations of the dissection. I was then sent to an ENT to have it removed based on neuro's recommendation, but the neuro is the one who "officially" diagnosed me. Outpatient surgery was done through the neck and I was cleared to resume normal activities after three days. Basically, after the surgery the problem was gone so no real need to be monitored with the exception that I'm still waiting on my artery to completely heal. I had a six month follow-up after surgery including a new CT which shows the bone is no longer there and I'm sure I will have periodic monitoring of the other side for possible vascular involvement. I have spoken to the doctors who treated me for cervical disc problems and TMJ and informed them of the diagnosis and they have since sent several patients with similar symptoms to be evaluated for ES because they now understand ES a bit better where as before they had no reason to be familiar with it. And they were by no means bad doctors, just never had experience with such a rare entity. That's why I say you keep finding doctors until one has seen it before and understands the possibilities. I was lucky in that I knew nothing of ES before my diagnosis just happened to end up at the right doctors office and then learned a lot about it on this site (which I am thankful for) as well as other research.