Continuing pain, losing hope

General
1

I’ve posted before about my condition, but not for a few years. I’m having terrible pain still, and I can’t seem to find any doctors who think there is any actual compression around my Styloid processes. I had surgery for Eagle syndrome on both sides a number of years ago, but the doctor left a portion of the stylohyoid ligament where it attached to the hyoid bone. The Styloids are about 2.2cm, which really shouldn’t be long enough to cause symptoms I wouldn’t think. But it seems highly likely that there is some sort of continued entrapment of the vascular structures in my neck, given the symptoms I am still experiencing.

Still, I’ve taken my last CAT scan to multiple ENT doctors, even some very good ones, and they don’t seem to think that there is any compression from what they can see.

Furthermore, just recently I’ve had a Carotid ultrasound on my carotid artery and jugular vein, and then a full MRI/MRA of my my head and neck and they are not seeing any problems with blood flow, damage to the arteries or anything else that could explain my symptoms.

Complicating matters is that I also have a history of Thoracic Outlet Syndrome that I had surgery for a few years ago. Vascular compression is possible in that condition as well, and vascular compression in the thoracic outlet area can supposedly cause backflow of blood that is not draining from the neck into the head.

I am basically completely disabled at this point. I’m actually on Disability right now, but I’m also very worried about the severity of symptoms I’m having. I am very fearful of having a stroke, even though my recent MRI of my brain and vascular structures in my head and neck show no blockage or evidence of any problem whatsoever. I guess that should make me feel better, but it really doesn’t.

I wonder if anyone else has been diagnosed with both Eagle Syndrome and Thoracic Outlet Syndrome?

A very prominent symptom I have is a swollen tongue, and a near constant feeling of heart palpitations and restricted breathing.

Maybe my current symptoms are not entirely due to Eagle Syndrome, but I really want a path forward that could actually help me.

I’m in California, so if anyone has any doctor recommendations, or recommendations of a hospital or clinic that could really help me I’d really appreciate a tip or two.

And what do you make of the fact that doctors cannot seem to see a problem when looking at a CAT scan, MRI/MRA and Carotid Ultrasound? These seem to be all the tests you could run to diagnose problems in the head and neck.

Thanks.

2

Hi,
I’m sorry that after surgeries you are still having scary symptoms… so frustrating & worrying for you. I’ve only read a little about TOS- I do remember seeing a mention of it with one or two members a while back, but they’re not members who are currently on the site. One never posted back after surgery, so I don’t know how he is. Have you been able to see the doctor who performed your TOS surgery again, to see how successful they feel the surgery was? I’m guessing that the restricted breathing is more of an indication of TOS; I don’t remember seeing anyone mention that or swollen tongue with ES. The heart palpitations could be due to compression of the vagus nerve- I’m not sure if that would show on an MRI or not…
It does sound as if you’ve had all the tests to possibly show any compression of blood vessels in the head and neck- the only thing which some members have found with compression not showing is if the compression is positional- so if you get the symptoms worse when your head/ neck are in a certain position. Occasionally members have been able to get a CT scan or ultrasound done in that position which then shows some compression.
There have been studies which show that the styloid length is not as important as the angle, so although yours have been reduced to 2.2cms, there is still a chance that they could cause problems if they’re at an angle, although I would’ve thought something would show on the CT scan. Also if the portion of the ligament left in is calcified, it could cause problems- so maybe you could ask that the doctor reviews both of these with the CT scan you’ve had.
I know that there have been a few members who have had problems with elongated hyoid bone processes ( horns or cornu) causing compression, and also extra large processes or angled processes on the cervical vertebrae; again you could ask for a review of these on your CT, although I would’ve thought any vascular compression would be seen…
Dr Samji in California seems to be one of the most experienced doctors with ES in the US if you haven’t seen him. There’s details in the Doctors Information section, 2017 Doctors List.
There’s also a list of some conditions which cause similar symptoms in the Newbies Guide section- ES Info, you could have a look through that and see if anything might fit.
Sorry that we can’t be more helpful, I really hope that you’re able to get to the bottom of this. Best wishes…

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Many of your symptoms sound very similar to symptoms my father had over the last several years of his life. He also went through the tests you’ve been through w/o defining results. After he died (not from those symptoms, & he was old). He worked closely w/ a cardiologist who ultimately had him wear a heart monitor for a month & checked it weekly. It did turn out he was having some intermittent odd heart rhythms. I don’t think anything specific was diagnosed although I believe he had a minor surgery of some sort which kept the symptoms at bay for a bit. If you haven’t seen a cardiologist, it would be a good next step.

Jules’ suggestion of paying attention to your head/neck position during the times you’re most symptomatic is a good one as well for the reasons she mentioned.

I hope you’re able to find someone who will “think outside of the box” & find what the trouble is.

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I actually have both TOC and eagles. I was wondering if the eagles could be causing the toc?

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TOS is caused by tight pectoralis minor muscles or an impinged brachial plexus nerves in the area of the first rib (kind of under your collar bone). Shoulder pain is a somewhat common symptom of ES, but it’s usully caused by compression or irritation of the 11th cranial nerve - the accessory nerve. I suppose since we’re each built a bit differently you could get TOS type symptoms from ES depending on the angle/length of your styloids relative to your accessory nerve.

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Jrodefeld and Meglove, keep on searching for answers and if any of you get any relief that works let me know, please. I have similar problems. I have had eagles surgery on left. It seemed to work. On the right my styloid is 5.1 cm, no apparent symptoms of Eagles, but shoulder and TOS symptoms. I had rotator cuff surgery to repair torn muscles, but still in pain in arm and have realized that I may very well have TOS. So now looking to see where to go from here. Surgery is very difficult for me, I cannot tolerate pain meds well. Just had c6-c7 fusion and no pain meds after, I do not want to do that again unless I have a pretty good idea that the surgery is the right one. I still need to wait a year anyway, even if I do, I have had procedures in the last year and working on a lumbar issue now. I really need some healing and more strength before trying anything else. Please keep me posted by message or keep all of us posted because your information can be very valuable to future ES, and TOS sufferers or those whose arm pain may be relieved by ES or TOS surgery. Thanks.