I had a left side styloidectomy just over a month ago. The surgery went very well, and I have healed back up quite nicely…Many of my neurological symptoms have gotten better. Still, I have some remaining symptoms – some of which are now more pronounced on the right side. I even had a couple of days where I experienced what I refer to as an “awakening” where most of my symptoms went away. My brain and body were working well again…I felt completely back to normal! It was astonishing, to say the least. However, it was short-lived.
Since my styloidectomy, what I believe to be my cervical instability (AAI) has gotten much worse. To the point I was at a year or so ago before extensive prolotherapy injections that really helped. My atlas was holding quite well before my surgery including a full three-month period. However, since my surgery, it has subluxated 7 times…Seemingly more so each week. Sometimes it will hold for a few minutes after getting adjusted…sometimes a few hours and sometimes a day or two. But when I foolishly forget and turn my head more than 10° or so to either side, it goes back out.
I have found that a neck collar and changing my pillows helped a bit, but it’s still going out and the related symptoms remain…
I have been able to find one thread about the correlation with ES surgery and increased instability (post titled CCI and ES). In particular, the first comment from Isaiah on February 28. There are likely more posts that I have overlooked…
I don’t know that anyone knows 100 percent whether a unilateral styloidectomy can create instability (or some sort of perceived imbalance)…Given the pathology of why we (supposedly) have elongated styloids in the first place, it certainly seems plausible. Rather than looking for an answer to that question, though, I’m curious about the following:
Has anyone else experienced increased instability after surgery (whether real or perceived)?
Have you found anything that helps, including removal of the opposite side elongated styloid?
As you know, we all suffer from this in so many complicated ways. I continue this fight because I know my well-self is inside. I have felt it…and it was amazing. I’m just trying to figure out what to do now including making the case for having surgery on the right side. Your feedback is appreciated!
I’m really glad you’ve your ES surgery but am sorry for the increase in your AAI symptoms. That’s definitely not what we hope for. You’re still pretty early in recovery so some of what you’re experiencing may yet decrease or disappear entirely. Cervical instability does make your situation more challenging though.
I didn’t suffer from cervical instability so can’t answer either of your questions, but I want to say what a great thought you stated: “I know my well-self is inside”! I LOVE your attitude!! That is an amazingly hopeful mindset. Hope carries us when life’s challenges stumble us.
I hope that as you recover from this surgery, your symptoms again recede & you feel much better than you do now. I’ll pray for that.
Thanks for the insight and kind words. Knowing that my well self is in there is one of a few things that keeps me going. I’m glad I’ve been blessed with experiencing it so that I can keep working on getting better. Fingers crossed!
I agree with Isaiah, & don’t have CCI so can’t give you any input, I know there’s been some talk on here about how maybe the styloids grew to stabilise an unstable neck…I know that the symptoms commonly ramp up on the opposite side after surgery so that’s common. I guess in theory if one side is still elongated, &/or the ligaments are calcified it could create a tension in the neck & maybe give a feeling of instability, I don’t know
Unfortunately there are so many unknowns with ES & then add to the pot other complicated medical conditions, it’s one big soup!
I’ll be praying for you too & hope that this improves
@eaglebgone , how exactly your neck instability was diagnosed? Flex/ext x-rays, upright MRI, rotational CT?..
Yep x-rays and MRI plus based on symptoms and elimination of other factors.
Hi @eaglebgone, so I did have instability as well as VES with both JVs compressed. I managed my instability for over 4 years with NUCCA/Atlas Orthagonal adjustments but by 2021 my adjustments weren’t holding and I had to stop turning my head at all. In May 2022 I had spinal fusion of C1/C2. This operation is very difficult to get in Uk but it was an instant fix for my instability problems. My head turn & trapped blood problems remained and I had right styloid removed in August. I can now turn my head again. So don’t give up, there are solutions out there that do help, it’s just difficult to find them. Hope things improve for you soon. D
I have cervical instability (wEDS) and had prolo therapy back in the 1987-92. I can’t say that it helped me overall because I am still struggling with neck issues. They are just worse now since I am aging.
I had ES surgery in 2020 (separately done - 8 months apart) and honestly did not see a difference (worsening) in my neck instability. About 6 weeks after 1st surgery, the right side (where styloid was) did start kicking up pain and convinced me to have the other side done. I do think with CCI, you do one side and it impacts the other side. Our ligaments are just plain messed up and our bodies adapt to old ways of holding itself causing dysfunction ie: perceived instability. Are you doing any PT/OT, structural re-education work?
Im not sure how old you are, but if you are subluxing that much, you may want to consider fusion (assuming you have done that yet). I wish I had years ago.
I don’t know how many pillows I have bought thru the years and they seem to help for awhile, then it doesnt. I do think there is a connection with CCI/neck instability and Eagles symptoms becoming more painful and symptomatic. I had 2 whiplash accidents in my early 20’s and I do think it made everything worse.
If you go for other side, dont expect 100% results when you have CCI. Get in for some body work - massage/acupuncture and good PT to re-educate and strengthen after words. May want to consider more prolo down the road?
I’m so glad to hear this and you found some relief. Fingers crossed that I can as well!
Wow, sounds like you’ve been through it all!
I would think that much of this is perceived as well because it seems to be a mixed bag with some people having instability and others not. My second styloidectomy made my instability at least twice as bad.
Just a couple of weeks ago, I was literally lying parallel to the floor to pick something up that rolled under the bed and my neck (and head) literally dropped straight down… Loud pop when it happened as well. Also, could barely turn my head or look down without my atlas going out. Both are most certainly instability.
I found that after two rounds of prolotherapy last year, my atlas started holding. I had a few more rounds before my first styloidectomy and things were getting progressively better. Now I’m back to where I was earlier this year… There’s no doubt a connection between the styloidectomy’s and my instability. I’m doing my darndest to not get fusion surgery.
Funny you should ask about PT and structural reeducation. I’m definitely finding out that my body is in such a state of dysstructure and the muscles need to be reeducated. In addition to my upper cervical chiropractic work, I just started PT and craniosacral massage. Both are really really helping me. Wish I would’ve started with them much sooner!
Yeah I think my whiplashes pushed my body into that territory of misery as well…just too much on top of everything else I had going on before that.
I agree spinal fusion must be a last resort. I did not resort to that lightly. I managed instability with NUCCA /Atlas Orthagonal corrections for over 3-4 yrs, but that stopped working & I now realise I had some iHH all that time.
But if you have the right spinal fusion surgeon, it’s probably 2 months of significant discomfort and pain for a potentially permanent relief of Brain stem being squeezed by Atlas bone, disruption of cFS fluid flow in spine/brain& relief of muscular distortion . My neurosurgeon never fuses below C1/C2.
For me -as I had VES, JV compression x2, the increased blood flow from fusion was difficult. My recent VES ENT surgery to skull base on right side has made a big difference at week 5-6. May Not be out of woods yet, but a lot better than 12 months ago.
Just sharing in case it helps those fit whom fusion becomes the only viable option. D
Instability wise, how do you get diagnosed? All that I could get here in Canada was flexion extension X-rays and obviously the conclusion that everything is good, even though flexion is seriously limited for me. I can’t flex my neck much.
Do they measure CXA and other parameters to properly diagnose instabilities?
The first scan I had was an upright MRI with flex ion and head turning which showed I could turn my head too far and that Alar & Cruciform ligaments holding head in place were damaged. But it needs a skilled person who understands CCI to report on this.
My Neurosurgeon did CT with contrast & head turn and MRI (both supine). On scan images it’s evident my skull is titled to one side. Compressed JVs also evident on scan. (But the radiologist missed all that in their report). Needs someone who knows what to look for on imaging.
Queens Sq did X Ray with flexion that did not find evidence of enough instability for venous problems but did find elongated styloid issues & some calcification of styloid ligament.
In UK CCI is not well understood, fusion remains controversial & getting accurate diagnosis, meaningful help &/or fusion remains very difficult. Most patients get told it’s their imagination and get pain meds at best. This situation is really terrible for patients with serious CCI and needs to change. I understand NHS only fuses in A&E accident incidents (where death or paralysis risk) or if osteoarthritis at top of cervical spine where bones visibly failing &/or bone lodged in brain on scans.
Hope that is helpful. D
Postscript-at later date also had ICP Monitoring & Venogram at Queens Sq. Showed head turning caused very significant spikes in ICP levels. D
@PatientD thank you for all the details. Now at least I know the protocol and can try my luck somewhere out of the country.
Here in Canada we have exactly the same as in the UK less the doctors available who are willing to order rotational CTs and radiologists willing to analyse all these pieces in the scans…
I wonder if we here in Canada even have anything definitely stating what the rotational limits are supposed to be like… Some of them even bluntly told me “you know, you aren’t getting younger anymore”…
Yes medics have many excuses for their poor diagnostic skills & will often blame patients themselves. Not a fan as you can tell.
If you are in Canada then I guess USA is your logical destination. As I am in UK other folks may know good US CCI medics.
My only leads/thoughts are:-
Look at EDS patient info, think they have list of CCI medics as EDS patients can have Hypermobility/CCI issues.
dr Martin Rosen (Atlas Orthagonal) in New York is a world leading authority on CCI & I heard he has scanner in office to measure CSF flows & maybe other scanning capabilities too. If he can’t help you, he may know someone who can.
3Regenexx in USA claim to know the US surgeons who do lots of fusion for CCI. But their main interest will be selling their own stem cell treatments to you, so bear that in mind if you approach them.
- I did see that famous golfers have had some spine fusion work (eg Toger Woods), but not at C1/c2 level so far as I know. May be worth researching who treated them.
5 maybe looking for spinal fusion research papers online will help you find medics who do this work. That’s how I found my ENT Eagles surgeon.
- I think UK based medics are maybe cheaper than in US but a long way to travel & if have medical cover then guess costs matter less.
Good luck in finding help you need. D
Ps. My Neurosurgeon says never fuse below C1/C2, but other medics may disagree. Is spinal fusion in Barcelona but have heard mixed reports. I have 50% reduction in head turn after fusion, but you can still drive once can do emergency stop. To protect fusion I try to use thoracic spine for extra rotation. D
In my case something weird is going on, I suspect might be some underlying pathology with spine and joints as even before turning forty I already have DDD in the neck (two disks are desiccated and one of them lost height), DDD in T (multiple desiccated, one lost height), multiple facet arthropathies in neck, T, L, SI… Something is going on, might be some connective tissue disorder rapidly turning problematic since very very late 2019/early 2020. Coincidence? Maybe. Maybe not .
@eaglebgone are you on FB groups about Eagles and craniocervical instability? There are quite a few folks who went through styloidectomy and fusion, and one Canadian guy who got only fusion and didn’t need styloidectomy afterwards as the bones didn’t compress anything afterwards.
Hey yall interesting , I had a fusion two years ago.While I was still having problems my neuro surgeon did a ct and thats when they found my styloids so I had put that on the back burner and deal with my eagles symptoms.my neck is crunchy