Hi. I hate to be a debbie downer I’m just really struggling right now. My discomfort has turned into pain, I’m struggling a bit to swallow at times, my right side of my face is tingling more than it’s not etc. I just need some advice on how to remain calm while I wait. I have a zoom appointment with Dr. Samji a week from tomorrow. But even after that I have no idea how long I have to wait for some relief. I often get waves of anxiety about this and feel like I need to go the ER asap. But I know they won’t help me and can’t do anything anyway.
I have been ill for years and years but this seems to be progressing very quickly and to be honest I am terrified I will not make it through this. I feel so off all the time. I can’t put into words the feeling, but I’ll try. It feels as if I’m not in control of my body. Cognitively I can realize that I feel weird and that I feel not right - but I feel drugged. Has anyone else felt this way? The only thing I want to do is just lay in my recliner because I can’t make the effort to do anything more. Every day I am sure that whatever this is will kill me. I’m just hoping to hear of others who felt this way and then went on to have surgery and felt better. I’ve read tons of posts here so I know it can happen. I have had the poking sensation in the throat for about 14 months now, but it’s now in my neck as well. It feels swollen etc.
You’re not a debbie downer. So many of our members have gone through or are going through exactly what you are. I’m glad you’ve shared your fears. Anxiety is part of ES both because of the chronic pain & because the vagus nerve is very often irritated by ES & it controls our anxiety levels. When it’s upset, we become upset if you get what I mean. In moany cases anxiety has decreased after ES surgery. In bilateral cases, it may require both styloids being removed. Some of your drugged feeling could possibly be caused by some compression to one of your vascular tissues which potentially limits blood flow to or from your brain. In most cases, that problem is also relieved when the styloid(s) are removed.
ES symptoms seem to behave in the manner you’re experiencing. They hit a certain level of pain and stay there for awhile & may come & go, but then they ramp up & seem to be more enduring. You most likely have some days that are worse than others. You can try icing or putting heat on your neck &/or face to try to calm the nerves. Experiment to see which helps more. There is also the option of trying a nerve pain medication to help get you through to surgery. Sometimes that helps take the edge off enough to keep you feeling more functional. Another option is an ultrasound guided lidocaine + steroid injection into the styloid area which can give symptoms relief from a few days to a few months.
Once you have your consult w/ Dr. Samji, you’ll be able to schedule your surgery usually w/in about 3 weeks. I don’t know if COVID19 has changed that but that’s generally been the norm for him.
I know it’s a very difficult & scary time for you, but you will get through this. I’ll be praying for you to have peace in the midst of this storm.
So sorry that you’re having a difficult time- I agree that going to the ER usually might not be useful for your usual symptoms, but chest pain is something you shouldn’t ignore- so please go & get that checked out asap! It will help with anxiety tooo if you get an all clear on that as chest pain is worrying!
Re your face tingling- nerve pain medication may well help with that- I had pain in my neck, ear, jaw & teeth, & later started getting tingling & numbness in my jaw or face, the nerve pain meds helped & although it’s not gone completely after surgery, it has improved, especially the tingling.
I had bilateral jugular compression, & one of the symptoms of that was feeling almost drunk all the time; I felt off-balance, had to really concentrate to do things, follow conversations etc. I had some very scary & weird feelings like my brain was being rolled up or something- I felt like I might die, so I can understand how you’re feeling & the anxiety that goes with it. The surgery helped enormously though, I was very pleased to have had it.
I hope this is a bit reassuring, sending you a hug & hope that the chest pain is nothing…God bless
Chest pain has mostly subsided now. I never know what is what and will surely make a mistake on judgement one day, but hopefully not anytime soon. Yes like a drunk/drugged feeling. I struggle so much to even get through the day because of it. It’s like brain fog but with the added complication of feeling off balance as well. Sometimes when I sit still I get this brief sensation that I am falling fast but I haven’t actually moved. Just taking it minute by minute.
That sounds really similar to how I felt! I got the falling feeling too- really weirs when you’re sitting down. I used to feel shorter than I am too, like I was close to the ground- very bizarre! It does sound as if you could have vascular ES…glad the chest pain has improved…
Oh my gosh yes. I don’t get it often but I have experienced the sensation when I’m walking almost that I am sinking into the ground but without feeling heavy or whatever. Just a feeling my legs were really short or like every step I took I was losing height. I don’t know how else to explain it. My CT was done with contrast, I am wondering if I do have vascular ES, but I read that Dr. Samji doesn’t really differentiate so I’m not sure if I should even ask him.
With Dr. Samji, ES is ES whether vascular structures are compressed or not. You can ask him if he sees jugular compression. He may or may not verify that but regardless, getting the pressure of the styloid off of whatever it’s compressing will help you feel better.
I’ve had chest pain caused by my vagus nerve before. I have finally learned what that feels like & no longer panic that I’m having a heart attack. It doesn’t happen often especially since I’ve had my ES surgery but it does show up once or twice a year for a few hours.
Glad your consult is coming up & that you & Jules were able to compare notes. It’s reassuring to know others have experienced similar things.
Yes thank you both for everything you do here! I can go weeks without chest pain but it always comes back. I’ve had a full cardiac work up within the past year so I’m fairly sure it’s not that but still scares me so much. I just want to feel okay. It’s been 10 years since I could actually say “I feel good”. I will update my original post when I meet with Dr. Samji. One more week to wait…
Hi one _day, I hope that you are having a good day today. I had my surgery done by Dr. Samji and I can assure you that you are in excellent hands. Having Eagles sucks and everyone who has had it has had different experiences with it and how it effects each of us differently. Some people recover very fast and others a few months.
I would definitely recommend writing down all your questions for Dr. Samji. He is a very kind man and will answers all your questions. I will pray for you.
Thank you so much. I appreciate the support. When did you have your surgery? Are you feeling much better now? I know I likely have some unrelated issues but if I can get any improvement I’ll be so happy.
I had my surgery November 2020. My recovery has been slow but I’m getting there. Like I said everyone is different with ES. You will feel better just be patient. Dr.Samji is the best.
I’m happy to hear that you feel a little better. I cried a lot after my surgery and was very blessed to a very supportive husband. Write down all your questions before you go to your doctors appointment. I’m going to keep checking in on you if that’s ok.
