Hello everyone. I’ve been reading your comments and stories since December and this is my first post. I do not have ES, but my brother-from-another-mother discovered that he has elongated styloids and calcification from his new dentist when she did a 3-D cone scan and, after questioning him about symptoms, told him they are possibly due to ES. His issues run the gamut of what I’ve read here: tinnitus, deafness that comes and goes in one ear, aching jaw, feeling lump in back of throat, neck and shoulder pain, painful electric shocks down his arms and legs, recurring hand and foot numbness, tingling, face numbness, etc. Has been to the ER with TIA, again to the ER for racing heart rate and crazy blood pressure and they told him nothing’s wrong. When he turns his head to the side and and down, his arm goes immediately numb. Neurologists told him he needs a psychiatrist, rheumatologists told him he was either crazy or wait a year and they’ll know if it’s ALS with nothing else to be done. You all know the drill…I’m preaching to the choir.
Luckily he now has a PCP, dentist and oral surgeon all of whom agree that he has Eagle’s. He’s spoken to Samji’s office. His PCP is sending in an order for a CT without contrast this week which he will pass along to Samji.
My bro has a new symptom today and searches on this site haven’t shown any links which leads me to my question: Has anyone felt like their hands were burning? He’s had this sensation all day, so I’m asking the ES warriors who have gone before. Is this symptom wildly off base? Thanks in advance for taking the time to read my tl/dr.
Also, my 17 year old niece has hEDS, MCAS, CCI, Chiari and now possible ES.
Welcome to our forum. I’m glad you’re being proactive on behalf of your brother-from-another-mother (love it!). The information you gained here seems to be helping you & him along this journey. Glad to know you’re getting help from Dr. Samji. He did my surgeries (2014 & 15), & I think the world of him.
ES surgery is not perfect, but it generally solves a lot of problems caused by ES. There can be residual nerve pain & symptoms that remain after, but these are usually low-key enough that they don’t appreciably affect ones life or at least not to the extent full blown ES does.
As far as burning hands go, irritated nerves can cause burning, tingling, numbness & electric shock type sensations. The nerves that innervate the hands do come from the brachial plexus, & the nerves there feed into that area from the neck. Since you’ve already ascertained that the shoulder pain & arm pain are related to ES, I would assume the burning hands are just an extension of that. Hand symptoms are more rare w/ ES, but they do happen occasionally.
I’m sorry to hear about your niece’s many health challenges. We have a number of forum members who have either Chiari or EDS & a few w/ both. Ben’s Friends does have support groups for Chiari & EDS. You can access them here: https://www.bensfriends.org/community-list/
Please keep us posted as to how thing progress for your “brother”. We’re here to support you however you have need.
Thank you for the warm welcome. I’ll share a “small world” story with you…
My brother (he’s in San Antonio) spoke to the oral surgeon at the VA there yesterday and found out that the surgeon had spent several years working at Brigham and Women’s Hospital in Boston. While there he actually attended an ES seminar given by Dr. Annino. He knows all about the ins, outs, pains, and symptoms of the syndrome and takes it very seriously. It’s wild that, in a medical world full of doctors that either have never heard of, don’t believe in, or discount Eagle’s patients, one can stumble across a couple of doctors living two thousand miles apart who have a 1° of separation. Crazy!
Really pleased that he’s able to see Dr Samji hopefully & that he’s finally believed! And good that he has you for support! ES is unusual in younger people, but possible, & we’ve had quite a few members with EDS & Chiari, there seems to be a link but haven’t ever come across anything in medical literature! Hope that your niece can get some treatment too…
Yes. My niece is under the care of Dr. Bolognese. He performed her tethered cord surgery and she is now participating in his study of possible Chiari/ES connection.
My brother-from-another-mother (48 yo) also has polycythemia. I’ve not found references to someone having that concurrently with vascular ES symptoms. Do you recall any mention of it? I’m not a doctor (and I know you aren’t either), but I would surmise that thick blood coupled with a compressed vein or artery would be alarming. Curious to know if anyone else here has/had the same combo platter?
I’ve not seen any mention of polycythemia on here that I can recall…you can search past discussions; I’ve had a quick look & it didn’t come up with anything I’m afraid.