I have had successful surgery to remove both styloids within the last year. Like everyone else, my set of symptoms have been varied and strange, with my most troubling ones being constant severe headaches and passing out. My story is like so many others on here and I’m curious about a few things and wonder if I could ask a few questions?
So, here goes. Has anyone else had -?
- First Bite Syndrome for years and not just after surgery?
- Overwhelming déjà vu before passing out when turning your head?
- Loss of normal cervical lordosis (or a straight neck as opposed to the normal curved neck)?
- Spondylosis in cervical spine?
- Diagnosis of Intracranial Hypotension?
- Strange feeling all over your head (which is very hard to describe)?
Wishing everyone the very best on your journey to diagnosis, treatment and recovery!
I am 5 weeks post-op. I have and have had #3 - which makes total sense, your neck is locked, no curve. #4 I think is fairly common for most people as we age, so that one I just regard as aging (I’m 49). #6 I totally get. I have had the left removed and now my head feels different on each side and I occasionally just have weird sensations around my head. Are you specifically referring to a particular type of feeling - the electrical buzz or another?
Wow! That was a quick reply.
I wondered if there was a connection between the spondylitis and straight neck in relation to the position of the styloids and how many others also have the combination. I always found trying to describe the weird feeling all over my head so hard, even more so now it’s gone. The best I could describe it is like a combination of the feeling you get when your reflexes are being tested on your knee and the shivers, or pins and needles.
Hope you’re doing ok after your surgery! Take care
Ah! I forgot to also ask…
7. Does anyone experience severe pain on the top of your head when feeling extremely emotional or exited? I could never understand why that happened to me, but since knowing I had ES I guess it’s because of the changes in the throat when you’re fighting back tears etc.
I do get a weird tingly feeling on my head sometimes, I had an awful sensation in my head, can only describe it as like my brain being rolled up! Thankfully that’s gone now! I never had passing out, did get bad headaches if I slept flat , that’s gone now as well.
Goes to show how weird & varied EScsymptoms can be, really hope that your surgery resolves all of them with time
I do have First Bite Syndrome that hasn’t resolved. My surgeries were 4-4.5 years ago. It’s much less pronounced than it was but still there. Thankfully I only have it on the right side. I’ve also found that staying very hydrated helps reduce the symptoms. I try to drink 80-100 oz of fluid/day. If I only drink 60 oz in a day, I feel a big difference.
I do hope you continue to heal & notice positive changes in all the areas affected by ES.
I was never ever going to mention this because I thought it was a total coincidence - but I about fell out when I read your comment about the spine. In August of 2016 (more than a year before my first “real” ES symptom in January 2018), I went to my primary doctor after noticing a “hump” in my spine right at the point where you would say the neck meets the back. Like about lined up with my shoulders. It honestly popped up pretty quick. It was a pretty pronounced bump like when you rubbed your hand over it, it wasn’t smooth. Given I had turned 40 that year I said “must be age”. But I had an x-ray done and my primary labeled it “neck swelling” under “conditions” in my chart. At the 6 visits to a chiropractor in October when I was trying to “fix” Eagle syndrome, he said “wow you already have a Grandma hump”. I said “Yeah I guess I do”.
About a week ago - 5 weeks out from surgery - I must have been washing my hair or something and rubbed that area. WAY flatter. Practically no hump. I thought for half a second about the surgery but then totally dismissed it.
Possible link? Crazy. I would have never imagined that. Can’t wait to get the other side done to see what other changes occur!
I had 6 for many years and Dr’s would just dismiss it. I also had terrible migraine type headaches that were never gone and would get really bad at times. Those headaches have almost completely dissipated since my surgery. The tingling in my face and head has almost completely gone and has steadily gotten better since my surgery last August and the stabbing in my throat on that side is gone. I also have 4 and unfortunately, the surgery did not resolve my neck pain issues which have gradually become worse. I’m now scheduled next month for a 4 level cervical fusion (acdf) at levels C3 - C7. Eventually I will probably get the SP on the other side done. So far I mostly have the stabbing in the throat on that side with some headaches. I don’t think I have the 1st bite syndrome but I do get a sharp pain in my jaw every now and then. I am able to chew gum again for for short periods. I wouldn’t dare put a piece of gum in my mouth before the surgery and for awhile after.
Same here with gum. The bag of juicy fruit in the car taunts me.
I don’t think I will ever chew gum again - it scares me!
If you think about the skull/neck anatomy, it could be possible for calcified ligaments to act as “cables” pulling the skull forward over time & thus creating a “hump”/kyphosis in the cervical spine/thoracic spine as it compensates for the new head position. Neck mobility becomes more limited as well & a more “forward head posture” could occur. I would expect this symptom to resolve over time if the “cables” are removed & normal neck/head mobility/position return.
ES symptoms are so weird and varied. Thankfully the worst of mine have been kicked into touch. Now that I’m feeling well again and I can think straight I want to find out more. I will do some trawling and see where it gets me.
That all makes so much sense. I love your analogy! I was convinced from the beginning that my problems were somehow connected with my neck and now I’m sure.
Well, well, well, the way you describe your “hump”!! I hadn’t thought of it before, but I definitely had a hump too, which has now gone! Crazy isn’t it!
I do hope your cervical fusion surgery goes well! So much to be dealing with.
I think that we may have so many other factors in common that we might not have thought about before. There were also quite a few things on the symptoms list, that I had all along, but never thought to mention them to my neurologist, as I never thought that they might be connected. She was confused enough as it was.
eaglesnest - I’m so glad to read about the positive changes you’ve seen since having ES surgery. I am sorry that styloid removal didn’t cure your neck troubles & will pray your cervical fusion takes care of your neck pain going forward. I love that our bodies can repair themselves, but over our lifetimes, there is often enough wear & tear that some things finally “wear out”. Thank goodness we live in an age w/ the technology to help us when that happens.
I had lunch with my mom and sister today and they knew about my spine hump and had felt it two years ago when it first started growing. Their jaws dropped when they felt how smooth that part of my spine is now! I’ve been smiling these past few days at the realization that those ligaments caused more trouble than I even was aware of!!! Exciting to think of the benefits of the surgery, especially when I’m still licking my wounds from the first one. I’ve said a few times on here how ready I am to get the second one done when the time is right.
Hello eaglesnest! And everyone else as well!!!
I am soooo tired of all of this (and we all know what I mean by “this”) and I finally decided in January that I would move forward with the cervical spine repair first. Just maybe the fusions would “lift” my neck a bit and maybe take some of the pressure off my nerves and such that the SPs and ligaments are causing! My neuro doc sent me for a bone density test prior to discussion of the surgery and as you might guess, there is a problem. I have osteoporosis now. I had no idea! So, I thought it would be a smart course of action to try and build my density for a year or so prior to doing the cervical fusion and have an appt to see a bone specialist next week. My concern about this is what we all might think of…what will calcium therapy/treatments do to these already out of control SPs and partially calcified ligaments? Has anyone been treated for osteoporosis? What was the result?
On another note, I have developed a new position that triggers the vertigo…bending forward and looking down. So now I’ve got vertigo when I bend my head back and to the left as well as bending my head down!
On a positive note, I have been taking the 2500mg of CBD oil (6 drops under the tongue every nite) and the improvement is amazing. I don’t have pain 24/7 - more like 12/4…lol. Also of note is help with sleeping. Though I take a tramdol and a flexeril every nite before bed, it had kind of stopped working as well. The CBD supplements nicely and greatly helps with the constant inflamation of all parts in between!
You pose an interesting question. I don’t know of anyone who’s gone through therapy for osteoporosis with styloids still present but hopefully you’ll hear from others who know more than I do.
When I was going through my ES surgical period, there were discussions about whether or not calcium supplementation had caused ES in some people, & there were some forum members who had overly high levels of blood calcium. A connection between high blood calcium & ES was questioned. I do take calcium supplements & have for years as I’m osteopenic & near osteoporotic in my lumbar spine. I checked my most recent blood work when I was diagnosed w/ ES only to find my blood calcium levels were well w/in the normal range, thus, I couldn’t blame ES on calcium supplements. That’s not to say blood calcium levels or calcium supplementation can’t be contributors to ES. They simply weren’t in my case.
It sounds like you’ve got some pretty nasty vascular impingement going on possibly caused by your styloids. Is there any possibility of having your ES surgery(ies) over the course of the next year while you build your bones up so as to prevent any further complications w/ your styloids? It seems that might be your best course of action at this point. Not to scare you, but the longer the vascular tissues are compressed by the styloids, the greater the risk of permanent damage to them.
I’m glad the CBD oil is making a significant difference for you. I hope it keeps working & doesn’t fail down the road like the tramadol & flexeril eventually did.
I’ll be praying for you to have wisdom regarding the best course of action going forward.
Metabolic disorders are a possible cause of ES, as Isaiah says there have been a few discussions about calcium levels, but not sure about the osteoporosis if any members have found calcium for that makes it worse… I’m so glad you’ve found something to help the ES pain in the meantime!
Should playing saxophone will hurt or cause pain in ES in the neck or styloid???
In regards to calcium supplements:
I used to take a calcium supplements in powder form for years. Three years ago I had an emergency appendectomy. In the abdominopelvic cavity where the appendix is located I had small calcium stones - whether or not the cause of the appendicitis is not know. I had been thinking of this lately and was wondering if calcium supplements could be the cause of the ES calcification. (I no longer take the supplement.)
All the best,