I am so grateful to have this forum to come to in such times of need. This ES journey is a long and daunting journey to say the very least. I pray that we can all find relief.
I hope my question makes since, as my symptoms are making it very difficult to find the right words to say.
Have any of you been diagnosed with ES and CCI? I would love any information on your path to diagnosis and treatment.
I have bilateral ES and had my right side removed in December. I have not found any relief from my daily pressure headaches and vertigo. I also have left side neck/jaw pain that seems to be worse than before surgery. Honestly, it feels as if I didn’t undergo a surgery at all. My surgeon was very optimistic that my pressure headaches and vertigo would be relieved with removing the most compressed side so this outcome is causing me much hopelessness.
I recently had an upright MRI to look for CCI and am awaiting the results. I am unsure what is causing my symptoms now. I was hoping it was as simple as having the left side removed, but now CCI is a question. I’ve also heard that CCI doctors are less inclined to help you if you have both styloids out. This is all so confusing. If CCI is common in ES, wouldn’t you want to make sure the patient doesn’t have CCI before removing the styloids? I’ve also heard so many times that removing styloids doesn’t interfere with neck stability, so why wouldn’t a CCI Dr. help a patient after their styloids have been removed…or does removing the styloids cause instability issues?
I would really appreciate any light you can shed on these questions. Thank you so much for taking the time help me.
I’m sorry that you’ve been presented w/ another possible diagnosis. So frustrating for you! We have many members with CCI (& EDS - Ehlers Danlos Syndrome which often go together). Typically, I don’t think having the styloids removed affects CCI because it’s more a function of cervical vertebrae instability, & the styloids don’t normally support the cervical vertebrae but are accessory anchors for a few muscles & ligaments. @Snapple2020 has written a lot about CCI among other things. She would be a good person to answer questions.
It has been suggested that when one styloid is removed, the muscles & other soft tissues in the neck sort of shift to create a new balance that accommodates the side w/o the styloid. I would speculate that in cases of bilateral ES this might mean that the remaining styloid may shift a bit, too, which could increase symptoms from that side. It might also present the “appearance” of CCI w/o it truly being present.
If you click on the magnifying glass icon in the upper right of this page & type in CCI, many discussions will come up. I hope you find them helpful.
So sorry that you’ve not had the results you hoped for with surgery, & now things look more complicated with a possible CCI diagnosis too…Obviously you want to find that out one way or another & before any more surgeries, but bear in mind if you had bilateral ES & only one side removed, you could still be getting compression & symptoms from the remaining side. We have had members who’ve had cross over symptoms, so until you have the second side done, you won’t be able to tell for sure how the first surgery went & whether you can be free of ES symptoms. We’ve heard too of doctors who won’t do the 2nd side when having the first side removed doesn’t seem to have helped, & members have had to go to different doctors to get further surgery, which has helped. Just a thought! Sending you a hug & hope that you get some answers
Eagle1,
I have had bilateral eagles surgery and have CCI, TMJ, hEDS, osteoarthritis and TOS. I get regular botox and steriods in my jaw, neck and occipital region. I have had just about every kind of therapy including prolo or proliferon injections in my neck over the past 3 decades to tighten my ligaments.
I have only developed vertigo more recently and well after ES surgery. I felt I was on a stable path to recover. The vertigo and tinnitus came on suddenly after tooth extraction and trauma to the jaw. Ive also had some mild sudden hearing loss in one ear. I did have some TMJ flairs due to ES surgery but it passed.
I am having major problems with my scalene ligaments in my neck, and nerves in my shoulder, arm and hands now. I have sneaky suspicion it is related to the neck instability and postural issues. I do not think that having ES surgery has any impact to what I am experiencing now or impacts negatively to neck instability. I already have experience with prolo-therapy and have been suggested to have PRP injections in various locations in my body. All of these alternative therapies are considered out of pocket by insurance and the data and studies do not support paying exorbitant prices to try them out. ie: tighten ligaments to stabilize them. I am scheduled to see new vascular/neuro surgeons for evaluation as well as ENT for the ear issues. Il pass on what I have learned as I go. As I have expressed before, I feel like I am playing whack-a-mole when it comes to my symptoms. I am growing tired at times but never give up. I think I can do things to improve my overall health. Easier said than done.
@Snapple2020 so sorry that you’re still having issues, it must be exhausting & so frustrating to fix one issue & have another surface. Thinking of you
Thank you so much for the response, Snapple! It is comforting to hear from someone who also has ES, TMJ and CCI. i am really struggling and am grateful that you reached out! I would really love to know more about your journey and the timeline of how you were diagnosed with these conditions.
For me, this all started 10 years ago and the TMJ diagnosis came first. My left side neck/jaw are killing me as I sit here and type this. I wore a TMJ splint that would help temporarily with the left side pain, but never touched the pressure headaches and this “rocking on a boat” sensation that is present whenever I am upright. I want off this damn boat!!
The ES diagnosis came last year after seeing a new TMJ specialist who said “yes you have some TMJ, but your styloids are your problem.” This gave me great hope that I had finally found my issue and that I could maybe live a more normal life again. I had my right styloid removed in December and I have had zero improvement in symptoms. I am scheduled to have my left styloid removed in July, but now have the new diagnosis of CCI. I can’t even explain to you how hopeless and lost I feel. I have absolutely no idea what to do next as far as treatment.
My ES Dr. told me that my neck in a mess…he said that there are signs of instability, but also that my extremely straight neck could be playing a huge factor. His suggestion was for me to travel to see Dr. Hauser in Florida. This is not an option for me.
So now I am in the process of trying to get in to see a neurolsurgeon who understands CCI. I am scared to have my left side removed because I have heard that taking the styloids out can make the instability worse. I have also heard that the top CCI neurosurgeons may not take me on as a patient if I have both styloids removed.
I would really love to hear your thoughts, how you went about things, things that have helped, and anything else you can tell me! I am sorry to hear you are struggling as well. Praying for better days for us!
I feel as though I am at the end of my rope. Holding on for dear life. Thank you for helping me connect with Snapple2020. I would be so grateful if you could connect me with others who have had CCI and ES. I am unsure what to do next. I don’t know if I should proceed with the left side surgery or wait until I see a knowledgeable CCI neurosurgeon. I just do not want to make my situation worse.
My left side neck/jaw symptoms are definitely increased at this point. My primary just put in a prescription for a muscle relaxer called Trizanidine to try and ease the pain. I pray it works! I will not be able to take it during the day, so if you have any suggestions to help with pain relief, I am all ears.
Thank you for the response. I wish I knew that the remaining styloid is what is causing my symptoms and that it was as easy as having it removed. That would be a miracle if I had the left side removed and felt better. My fear is having the left side out and not having any improvement and potentially making the CCI worse. I do not know what to do. I would appreciate any advice/info you might have. Thanks so much everything!
I can understand your worries about the styloid being removed if you’ve heard that it might make it difficult for you to see the specialist…I’m sorry but I don’t know much about the CCI so don’t feel qualified to give you any advice I’m afraid…will pray that you find the right doctor & treatment. Sending you a hug
Eagle1,
I already knew I had other issues going on before having my styloids out. Im pretty certain taking the other one out will not worsen CCI issues. At least it didn’t for me. I took a rather one issue at a time approach. I expected taking styloids out would not improve my TMJ or my CCI. I did the eagles surgery in hopes of solving some of my chronic pain problems in my neck shooting up to my ears from the styloids and calcifications. For the most part if has but I am now struggling what is likely the EDS / neck instability and now TOS. I have tried prolotherapy (over a 10 year period) and recommend to not waste your money in FLA for that in your neck. All the prolo therapy is to create nodules of scar tissue in my neck. I just saw an excellent webinar by a pain specialist who specializes in EDS and he did not think it a good idea in the neck area. I have never heard of CCI docs refusing patients who has styloids out but its possible some may. What part of the country/state to you live in?
The only thing that helps me is deep tissue massage, cranial sacral therapy and more recently injections of steroids and botox in the jaw have provided the most help. I know I have significant osteoarthritis in my jaw so thats why I know ES surgery will not help it.
I have the pressure headaches too as well as the swaying, more recently vertigo and sudden hearing loss. I have lost function in one of my middle ears and they suspect something going on with the facial nerve. Ive been to several TMJ specialist and found them to be part-snake oil salesman. I am going in a few months to an oral facial center at a large academic institution this summer where they don’t charge you thousands of dollars for appliances that dont work.
My neck issues started when I was 20. I am now 65. I have run the gamut on treatments for the headaches. TMJ probably started in my 30’s and I was told by 40 about the osteoarthritis in my jaw. Did prolo-therapy in my 40’s. Alot of chiropractic, PT, OT and almost 20 surgeries for primarily nerve compression or torn ligaments. Getting into a warm water pool and doing water therapy helps with overall pain - I discovered that in my 40’s after going to a workshop on fibromyalgia. My 50’s I was under a high amount of stress and pain increased along with it. The past couple years especially with COVID, I was under even more stress with bad work/hostile environments. I decided to semi-retire 2 weeks ago. High stress and poor diet does not help and only worsens it all.
The past year, my neck and shoulders have worsened and I do think weight gain has not helped. I need to get back down to my regular weight as I am certain extra weight hurts posture and creates more dysfunction. Im on the road in a week to see a vascular surgeon to be evaluated for TOS (Thoracic Outlet Syndrome). I already had TOS surgery on other side 20 years ago. Ive had all kinds of MRI’s and CT scans on my neck but never much in the way of movement or dynamic imaging that measures instability. Im hoping I might get some more cutting edge imaging in a couple weeks when I go to LA. That is my next plan of attack. I wish I had done that many years ago. I hope that helps…at least some. I let you know how it goes with the next round of evaluations. Hang in there.
I’m so glad you wrote an updated post. I’ve been wondering what happened w/ your CCI testing & now I know. @Snapple2020 gave you the best information - far beyond anything I could have suggested (nothing like experience as a teacher!). I hope what she’s told you is very helpful. I would also recommend going through w/ the 2nd ES surgery as I still feel confident it will help resolve at least some of your symptoms. CCI can then be suspected for what is left.
We don’t recommend sharing your location on the public part of our forum but you can PM Snapple to share more personal details if you want to do that. If you need a reminder about how to send a PM, please ask & I’ll walk you through it.
I think about you often & will keep praying for you to find the right doctors & treatments to help stabilize your CCI & resolve your symptoms.
