Thank you to all who post here, it is so helpful to be able to read other peoples stories. I have been in pain for over 3 1/2 years (started with a root canal) and like so many seen Dr. after Dr. My symptoms are mostly left sided - pain, extreme difficulty eating and talking, as well as terrible pain moving my neck and many other odd things. This past August a cranial facial dentist said he thought my CT showed Eagles Syndrome, my styloids appear to be over 50mm. Long story short - I will be having surgery on my left side in 3 weeks. Does anyone have any advise on diet/nutrition or how to minimize pain when can’t take anti-inflammatories?
Oh and two other things - am I the only one who is exhausted and have some days that are ok and others that are so hard?
sjlash……not even close to being the only one that has almost good days and really, really bad days that pretty much applies to all of us. I think that is the craziest part of this thing and why it takes an eternity and many doctor visits later to finally get a diagnoses. This site is a life saver for so many and you will come to find comfort and reassurance often! We all get it and we all believe you! I’ve been on this runaway train for many many years now and I can’t tell you what I relief it was to finally be diagnosed in April of this year and KNOW that I wasn’t crazy! So glad you found this group, the folks here are awesome!!!
Glad that you have a date for your surgery!
There are anti-inflammatory diets & info online which you could try, although I think that they take a little while to help so I guess you’d have to be starting now…I think Isaiah40:31 has tried this so hopefully she can have some input. I know of someone who tried an anti-inflammatory diet for a skin condition & it was very sucessful quite quickly.
Having good days & bad days seems to be a very common theme- if you search the discussions you’ll see how often it comes up, & generally there seems to be no rhyme or reason! I definitely noticed it myself before surgery.
Hope that your surgery goes well, there’s lots of info about what to expect after surgery in the Newbies Guide section if you’ve not seen it.
Have you tried CBD oil? I have used that all through my ES pains. It doesn’t take away all the pain but did help a little. I also used it after my first surgery. You just have to make sure you get a good quality. A lot of people sell cheap versions of it that are basically a placebo. Also before my surgery I looked up foods that were anti-inflammatory and tried to eat those.
As far as pain goes, I know you cannot take NSAIDs (ibuprofen, naproxen - Advil, Motrin, Aleve & the like) for at least 2 weeks pre-op because they are blood thinners, but you CAN take acetaminophen (Tylenol) right up to the day of surgery pending your doctor’s approval. Though it’s not an anti-inflammatory, it should help reduce pain. In many cases, people have found icing the neck helps reduce inflammation & pain, & in others, heat works better.
As far as anti-inflammatory diets go, low to no sugar & low carbs i.e. Paleo or Ketogenic type diets are both in that category. In both of these, carbs come from fruits & veggies instead of grains, legumes & dairy. As with any diet program there are extremes. For research purposes, I recommend Mark Sisson’s blogs marksdailyapple.com &/or primalblueprint.com for the ketogenic approach. For Paleo, Diane Sanfilippo’s blog: balancedbites.com along w/ her book Practical Paleo. Another good Paleo blog is nomnompaleo.com. Michelle Tam, who co-wrote the book/cookbook Nom Nom Paleo is an entertaining author. I think all three of these people have more moderate & realistic approaches to these types of diets. Should you elect to continue as you are, then just reducing or eliminating refined sugar & highly processed foods & drinks from your diet, for the time being, will help. There is also a thought that red meat is more inflammatory than other types so going w/ “white” meats & fish for awhile might also be helpful.
seamom put together a good list of things to buy to prepare for post op recovery. You can find it here: Surgery shopping list
I’m so glad you have surgery soon. Having 5 cm styloids is pretty significant. I hope you find reduction in symptoms immediately after surgery & progressively as you heal!
Hi, I’m experiencing some odd feeling in my right side that moving around back of neck, most discomfort on right side like sharp streak zings pain. I’m not scared, but very concerned. Slight headaches on right side, inner ear, from bottom I guess the skull going up my head. Left side starting to feel wierd. My first Dr. appointment is mid January, had to change insurance company to get Doctor, praying this is the correct one. I was told that this is a very rare issue… Any advice or suggestions are welcomed.
As you were diagnosed in April, have you had a successful surgery since?
Thank you Isaiah
I forgot to mention also that the B group vitamins are supposed to be good for nerve healing, I took supplements before & after surgery. Should probably check with a doctor or pharmacist if they’re okay for you.
Lots of info in the Newbies Guide section about common symptoms & treatments; it’s a good idea to educate yourself as much as possible before your appt. so you know what to ask & what is right about ES- not all doctors understand it!
It sounds like your shooting pains could possibly be nerve pain, there are medications which help with that, info again in the Newbies Guide.
Not too long to eait now for your apt., I hopeit goes well!
Thank you, I saw symptoms listed that I’m having not realize they were part of ES. Thank you for your response.
sjlash…I have not yet had surgery! One would think after so many years of suffering and going undiagnosed, that surgery would happen immediately! Not the case here. I have been to see 2 surgeons since that time - neither of which were the right one for me. The one here in the OKC area was in agreement that I have ES and willing to di the surgery, but I didn’t have a warm and fuzzy with him. He laughed when I asked him if he knew this was also known as the suicide syndrome and was skeptical of several of my symptoms!!! The second one I saw in the Dallas area wasn’t so sure I even have ES! She said though my SPs were elongated, she didn’t think they were long enough to warrrant all my symptoms by what she could see on the CTs and MRIs. I will finish my current phys ther sessions for my cervical spine issues - see how I come out of that and try to decide whether to continue with that surgery first or pursue the ES with Doctor Ness in Baton Rouge that emma entrusted to do her surgery. If that doesn’t work out, I will consult Dr. Samji in San Jose, CA.