Anybody here with diagnosed CCI/AAI? I have it and am seeing Samji regarding ES (elongated styloid intertwined with ext carotid). My neurosurgeon has no interest in ES or coordinating care between the issues (though known to be sometimes comorbid), and I’m hoping somebody here has experience coordinating and navigating these issues together. I’m really hoping Dr. Samji has experience with CCI patients and wondering what I can do to prepare or who I can seek for second opinion, etc. This stuff takes forever to get through. Six years in…I want to make progress and keep things rolling. Any nuggets of wisdom welcome.
We’ve had quite a few members with CCI, & lots with EhlersDanlos, they do seem to be linked…There have been quite a few discussions in the past- if you search for cranial instability it’ll come up with them, although they may not give you answers it’ll hopefully help you connect with others.
Hopefully Snapple2020 will see this & chip in; she’s very knowledgeable about EDS & has had two surgeries with Dr Samji. So I guess he does have experience!
Hi. Dr Samji is my surgeon who did my right side 3 years ago. He had to take it out in 5 pieces since it was wrapped around my carotid. I have ES on left but my neck is actually worse now so I saw him again last week after CT and MRI w/contrast on cervical spine. He sent me to neurologist…more tests coming. ….my neck is bad. I could definitely go back to him if my left side needs surgery but for now - it’s my neck causing symptoms and that could be triggering my left at times. I trust his ability to operate and is extremely careful with nerve monitoring during surgery. Best of luck to you.
Thank you for your post, Gail. It’s good for our members to know that not all neck problems in patients with ES are caused by the styloids. There are so many bones (cervical vertebra & discs), nerves, muscles, tendons, ligaments & vascular tissues in the area, elongated styloids are only one component that can affect how the neck feels. Getting styloids removed is very helpful for many people but not everyone. I’m also glad to read that Dr. Samji has your vote of confidence in spite of how your neck is currently feeling. I am thankful for the medical treatment he’s given me, as well.
I’m so sorry you’re one of those who didn’t get good relief from your styloid removal. I hope the neurologist is able to help you resolve your remaining symptoms or at least help minimize them.
So sorry that you have additional neck problems; I hope that you’re able to get some treatment for this & your neuro is helpful…