Hey there! Just found out about ES 2 days ago, went to a New Dr today to co firm it, it was confirmed I have styloid 2.5 times longer than it should be. Here are my symptoms but I have many issues that i don’t know if they are related. So the obvious ones are, pain in the neck, throat. Trouble swallowing, breathing sometimes, talking or singing. I have serious dry throat. But these are other symptoms I don’t think are related but I don’t know. intermittent sciatic pain, exhaustion and fatigue, occasional ear stones and vertigo that lingers. Problem w wasting electrolytes and low potassium and blood pressure unless I take electrolytes in my water all day and night. Ostepenia. So what are your thoughts. I want to see a nephrologist soon but have no insurance so one thing at a time. Thanks! Glad to be here!
We’re glad you’re here!
Of the symptoms you think might not be related to ES, exhaustion/fatigue, blood pressure issues & vertigo are common w/ ES. Vertigo in ES is often caused by compression of either the internal carotid artery or jugular vein by the elongated styloid(s) or calcified stylohyoid ligaments. I hadn’t heard of ear stones related to ES or otherwise so looked them up. Google says they can cause vertigo when they get out of place in the ear canal, so they could be the cause of your vertigo as well.
Are you taking any medications that could be causing your potassium/electrolyte imbalance? Some diuretics are notorious for causing that sort of problem. It’s unlikely to be caused by ES. Osteopenia is usually a function of age, but if you have ear stones, osteopenia, & ES, it’s possible that your body isn’t handling your calcium properly. In addition to a nephrologist, you might want to see an endocrinologist to get your parathyroid & whatever else might be suspect checked. The parathyroid is key in keeping calcium balanced in our bodies.
I’m sorry you don’t have insurance. That will make taking care of your current medical needs more challenging. Is there some kind of medical aid you could apply for in your state?
No, my husband is self employed and so we are in the no mans land of making too much but not enough! So we have some money saved and hopefully can afford the surgery. I have been to the endo he said I’m fine. I’m not of course, I didn’t care for him at all. I’m not taking any meds that would cause dumping of electrolytes so I need to be checked by a nephrologist. Thanks for all your support!!
That’s a rough spot to be in, Sue. Make sure to ask whomever you see about surgery if they offer a discount for cash paying patients. Many doctors do. Dr. Samji used to charge cash patients about half of the fee for which insurance is billed. I don’t know if that’s still his policy though. (Not insinuating that you’re planning to see Dr. Samji. Just used him as an example.)
Sounds all very complicated, & very frustrating with the health care system! Can’t add any more to Isaiah’s info, but sending you a hug, hope that your get some answers & treatment soon…
Could Mixed Connective Tissue autoimmune disease be linked to ES? Do ES patients have any common linked CBC blood lab results? Antibodies labs? How about unusually low monocytes? Or Hashimotos? Or Rathke cleft /pituitary cyst?
It seems that people w/ ES sometimes do have autoimmune disease along side it. Whether or not there is a link between the two remains unknown. Thyroid disease or cysts do seem somewhat common among ES sufferers as well. I have not heard of CBC blood test results, antibody lab results, low monocytes or Rathke cleft/pituitary cysts being related. That doesn’t mean they aren’t, just that there has been no suggestion of a relationship that I’ve seen on this forum.
Searching Dr. Google for research papers that link any of those to ES might produce some information, but I think it’s unlikely as most of the research papers deal w/ existing cases, causes of symptoms, & the surgical outcomes, as opposed to looking for potential links to other body issues.
I meant high Monocytes. Monocytosis if someone reads this in the future. Thank you. I will have to conduct research. Lol Dr Google.
We are so proprietors for business as well. Did you get your surgery done and may I ask if you have insurance and what the cost out-of-pocket was?
Out of pocket for ES surgery depends entirely on your insurance coverage. It can range from $0 to several thousand dollars. My insurance coverage was pretty good so I probably paid under $1K for each surgery - that included the surgeon, anesthesiologist & outpatient surgery center. It can also depend on whether or not you’re seeing an “in network” or “out of network” doctor for your surgery.
Dr. Van Daele on our Doctors’ List is in your state you can read what’s been said about him on our forum by clicking on the magnifying glass icon above & typing in his name. Related posts will come up for you to read.
@sixgunsue How are you doing now? Have any of your symptoms resolved after surgery?