Good morning,
Regarding skull base pain, I’m having a hard time deciphering if pain at skull base/top of spine is cervical in nature. I do have a ‘bad’ cervical spine, but never had this dull but strong ache at what I’ve been calling skull base, until C1 met my styloid (C1 had to have moved closer, am sure they had been meeting all along, but situation became significantly worse in March).
Pain is relieved with lidocaine patches which I put on at night and take combo of Gabapentin/Ibuprofren mostly around the clock.
So if have skull base pain, can you elaborate on what it is for you? Wondering how surgery relieves this; is it perhaps occipital in nature and settles (?).
I had significant skull base (occipital) pain as one of my ES symptoms. I used to think it was caused by the vagus nerve as it exits the skull in that area but so do the other cranial nerves that cause ES symptoms. Bottom line, I’m not sure what causes it, but mine did go away after my styloids were removed. I think on one side it lingered for awhile & on the other it was gone soon after surgery.
My skull base pain has recently returned on the left, & I was mortified that maybe ES was recurring, but a PT I’m seeing for another issue felt around on my neck & was quite vocal about how tight my SCM & the surrounding area is. She’s done some massage & the pain has gradually gone away. I’m incredibly relieved.
As far as the pain worsening over time prior to ES surgery, mine definitely got worse & the best explanation I can think of is the longer the styloids are compressing the soft tissues/nerves/blood vessels w/in the neck, the more inflamed everything becomes which shrinks the space inside the neck creating constant pressure on the nerves, etc. This would obviously increase pain & other symptoms. Have you tried icing your neck/skull base as perhaps that could be helpful? Ice has often taken me out of a world of hurt from various body parts. As it’s often said, “Getting old ain’t for sissies!”
Yikes on you pain recurring… and wonderful that it has receded. I’ve not gone back to massage as it is difficult to lay down… but that would be a good test for me… My therapist is incredibly thoughtful and careful…
Like you and others have said, it may just take the surgery for these onion layers to peel off. Since I have a rotated C1, trying to make sure I’m addressing my neck in the right order.
I meet with Dr. Costantino next week and then a local neurosurgeon (about C1) the following week. So at a minimum I will have a bit more info on my options.
@Leah - I’m really glad your appt. w/ Dr. Costantino is coming up soon. I expect he’ll provide helpful information both on symptoms & options. I’m glad you have the neurosurgeon appt. so soon after so you can easily compare notes.
I’d forgotten about your rotated C-1 even though you’ve mentioned it multiple times. Sorry about that! It could definitely be a factor in the skull base pain. It will be interesting to see what Dr. C & the neurosurgeon have to say about that as well.
Hi there! Sorry we are both here! But hoping to get on the other side of this. Believe Dr. C is an
Otolaryngology, Craniofacial Surgery, Head / Neck Surgery… not brain and spine. He works with Dr. Lo who is a neurosurgeon and I need to make an appt with him as well. I don’t know how they view a rotated C1… with regards to the C1 shave they currently perform. I suspect Dr. C will refer me to Dr. Lo regarding questions on C1, TBD. Are you experiencing vascular compression? Mine is a bit elusive… not showing on regular scans… hoping I don’t need a dynamic venogram. Waiting to hear from my Vascular Neurologist on next steps from his end.
His profile says brain and spine, but not sure Dr Annino wants to do surgery but hasn’t done as many vascular surgeries. I have done upright with flexion/extension of cranial sacral area which shows rotation. I feel like I need a neurosurgeon, ent and vascular surgeon working on me all at once!!! I have heard of Dr. Lo. I live in Connecticut, where are you?
What imaging showed your rotated C1? Many neurosurgeons here don’t acknowledge that. I was supposed to be in Denver next week to see both Hepworth and Centeno both that got canceled. I am not sure what is causing my misalignment, thus the reason by having both Hepworth and Centeno opinions on it. Now, I’m really screwed. I have never heard of a vascular neurologist……
@Brandy - stay in touch w/ Dr. Hepworth’s office & get that appt. rescheduled. Apparently he has 2 new NPs he’s training so he’ll be able to see more patients in the not too distant future. You should have some priority since you already “had your foot in the door”.
@Brandy my C1 rotation is notable on my CT scan with contrast. Like you, I have questioned multiple doctors about my C1, and they don’t seem to think it’s a problem. It was first found with an atlas orthogonal chiropractor many years ago, so I knew the difference of when C1 was moved back in place. Must be how everyone else goes around without the significant pain that I suspect we feel.
I have seen multiple physical medicine and rehabilitation doctors, I have brought up the C1 looking for help, and I have literally been told that that doesn’t happen, which I cannot understand, since it is clearly sitting in a rotated position. I really don’t even know how to process that someone who has studied anatomy and muscles either does not know, or does not want to acknowledge this predicament.
The vascular neurologist, Dr. Rishi Gupta, I found on our (this forum’s) doctors list. I had not heard of this specialty as well, and was so hoping he could help me in with nerve questions regarding the styloid, but he only does vascular diagnosis and non-surgical interventions with issues of neck and above.
So sorry about your situation with Dr. Hepworth… I know how frustrating this all is and what a difficult path to treatment.
I do have an appointment with a neurosurgeon locally, that will reserve any enthusiasm regarding getting answers since these seem to be hard to come by as you know.
I do have a scheduled appointment with Dr. Hepworth himself in October. However, there is no guarantee that will hold. I personally, would not feel comfortable seeing a fairly new NP after spending thousands in air fare and hotels. It will either be Hepworth or bust. Right now, there is no guarantee that I will end going in October. I have a scheduled consult with Costatino next month. Annino is not on my good side right now…
My rotation only shows up on DMX or upright with flexion/extension. Every past neurosurgeon I have been to says everything is fine and not to go “looking for things that are not there”. I am hoping that Dr. Costatino can provide me some answers and perhaps refer me to Dr. Lo. It is a lot…
Are you speaking of Ct angiogram or Ct neck? Dr. Annino did a Ct neck for soft tissue only. I would have to look into my various portals to see. I have had so much imaging, I am shocked I do not glow in the dark! Would this best be seen on a Cat scan of the neck? Do they normally look at the C0-C2 areas on those images?
@Brandy - If your CT scan was of your neck relative to viewing your styloids, then C0-C2 should be visible though you’d need images from the back side to get a good look at cervical spine rotation.
How do they get images from the back side? Most of the ordering Drs for the cat scan of the soft tissues of neck for styloids was supine. Only the DMX and upright with flexion/extension was not supine.
I’m not sure if I understand your question correctly, but CT scan is basically a constantly rotating x-ray beam around you when you get into the machine, like a spiral. From there, every “flat” or 3d image is basically a computer-aided projection/interpretation of the data that was gathered during the scan.
So after the beam has finished its job, you can get all the slices from that single scan, given the beam was “thin” enough (thus defining minimal width of the slice, or something like that).
