I was just diagnosed with ES and am waiting to see the specialist. In the meantime I am really struggling and have been feeling so weak, having some really bad neck pain and just generally have been feeling terrible. I feel like I should go to the emergency room but am not sure they would be able to do anything for me based on my past experiences. How do I determine when I am actually really in a dire situation and when it is just normal symptoms of ES I guess is what I’m asking.
Many people suffering with ES find themselves in the ER looking for pain eradication. Usually the ER docs either prescribe pain meds or recommend OTC pain relievers & send you on your way. In cases of severe migraines, vertigo & nausea IV meds may be administered. If your pain truly becomes unbearable or you find yourself randomly fainting, having uncontrolled migraines, vertigo…things that are more debilitating, it would be worthwhile heading there.
ES pain can be very intense. It generally flares & subsides & flares again & subsides in unpredictable cycles; sometimes it cycles w/in a day & sometimes over weeks/months. The symptoms will change, too. Some will go away & new ones will show up. Sometimes icing your neck (15 min. on & at least 45 min. off) can help. Some people find heat is better. A nerve pain medicine like neurontin, gabapentin, or amitryptiline can help but all of those have side effects that can be disagreeable. A short-term fix which helps some people is to get a cortisone/lidocaine injection into your neck. A skilled ENT doctor would do this w/ ultrasound guidance to place the needle accurately & distribute the meds where (s)he thinks they would be most effective.
Do you have an appointment w/ a specialist yet? If not, since you’re in CA, I highly recommend Dr. Samji in San Jose. He did both of my surgeries. I’m 4.5 years out from my first one & 4 years out from my second. I’m so thankful I found him through this forum.
I can sooooo relate to what you are feeling and going through. I never went to the emergency room but I came close many times. What Isaiah said is true - that they wouldn’t be able to do much.
I haven’t had muscle spasms in a while, thankfully, but now onto other crazy symptoms. When I had the spasms I would take long, hot showers after work and follow that up with ice. It seems to help somewhat. I made a heat wrap from a knee sock and rice and I pop it in the micro, which also helped.
I am in a holding pattern waiting for my May 8th consult with Dr. Cognetti in Philadelphia. With the constant pain in my neck and pressure in my head, it cant happen soon enough.
All the best to you.
Dr. Chhetri has done ES surgery for at least one forum member. She never posted much online. He does bilateral ES surgery all at once so you’ll need to plan a month or more for real recovery. I do believe he’s an excellent surgeon though.
The most efficient way to communicate w/ Dr. Samji’s ofc is by email. You will usually get a pretty fast response that way. Try emailing lauren @ caminoent .com (w/o the spaces - the site blocks email addresses & phone numbers put in correct format).
The member is Mooky. You can privately message her to talk abt her experience w/ him.
I’m sorry you’re going through this. When I have had to go to the ER we call my doctor first and he tells them to expect me and lets them know of my diagnosis. My husband has also taken my imaging discs and reports with him. Doing this has made a big difference and there’s no hesitation on giving me whatever medications are needed because my doctor gives them orders to do so.
I hope this is of help to you.
Hi , just checking up on you wanted to see if you saw dr Chhetri and had your surgery yet? If yes. How did it go?
Hi. I had to wait two months fr my upcoming surgery which is nothing compared to others. My pain seems to be getting worse everyday but it’s concentrated on my right side throat and eat. I feel like I have an alien inside me but feb 4 they are cutting the alien out. If I sound crazy it’s be cause this thing nobly lets me sleep a couple of hours.
I have almost all of those symptoms listed there. And lately I have had to spend most of my time laying down just to help the pain… all they have me on is 800mg ibuprofen twice a day for pain… my body seems to think that narcotics and opioids are just water. They do nothing for me (never have) . Any ideas what I can do to help the pain? I am in utah… and driving my daughter all around really makes it worse.
There are medications which can help with nerve pain- things like Gabapentin, Amitriptyline, Nortriptyline- they can take a little while to work, but worth a try. Others have found that Baclofen can help with muscle tension, which can be a viscious circle as you get tense from the pain, the muscles can then trap nerves & cause more pain…also lidocaine patches were suggested by one member. Steroid/ lidocaine injections into the area can help sometimes too- they’re done by a doctor often guided by ultrasound.
There’s more detailed info in the Newbies Guide Section, under ‘ES Info- Treatments’.
Hope you can get some help!
I was first diagnosed with ES in 2016 but nobody knew what to do about it. And all these years I have had all of the symptoms I have seen here. I never realized it could all be from ES… I have been told by both multiple doctors and family that the way I was feeling was all in my head… and that includes eye doctors… I am so glad to know that I am not crazy. This group has been a big help with the mental aspect of ES. My current doctor is trying to figure out how and if surgery can be done… mine is bilateral and both styloids are elongated as well as the ligaments on both sides are fully calcified.
Glad you’re finding the site helpful- have you looked at the list of doctors familiar with ES in the Doctors Info Section? Dr Pramod Sharma Uni of Utah & Huntsman Cancer Institute, Salt Lake City has done quite a few surgeries, might be worth seeing?
Hi SMC44 -
The symptoms of ES are caused by irritation to of up to six cranial nerves that are in or near where the styloids/stylohyoid ligaments exist in the neck. Elongation of styloids &/or calcification of stylohyoid ligaments creates a situation where nerves that normally are free from pressure have pressure put on them. Each of those nerves alone when irritated can cause a variety of symptoms. When several “get excited” the broad ranging symptoms are hard to diagnose, & thus, ES “victims” often get diagnosed as hypochondriacs or told “It’s all in your head” (which in part it is…literally!!). Additionally, the internal carotid artery &/or jugular vein can become compressed when the head/neck is in certain positions which then causes vascular symptoms i.e. tinnitus, light-headedness, fainting spells, cranial hypertension, migraines & the like.
The cranial nerves most often affected are the trigeminal, facial, glossopharyngeal, hypoglossal, accessory & vagus. There are a series of videos on YouTube called “Two Minute Neuroscience”. There is one for each cranial nerve plus other neurologic tissues. Watching them will be very informative & will help you understand where your symptoms may be coming from. In turn, you can then educate your doctor.
It’s well worth it to travel to an experienced ES doctor rather than seeing someone who needs to figure out how to do the surgery needed to “cure” ES. I’m sorry we don’t have any ES doctors listed for your state. You should look for an ENT skull based surgeon (often a cancer specialist) or a skull based maxillofacial surgeon or neurologist. These are the doctors who most often do surgery in that area of the body.
I’m so sorry to hear that you’re going through All of this. Believe us when we say that we understand. Most of us have been through the years of multiple doctors and everyone looking at you like you have 3 heads. It’s so frustrating not to be taken seriously when you’re in so much pain. I thank god every day for my husband who advocated for me so many times when I literally couldn’t even talk.
Where are you? What state?