Hi all - I know this is a bit out of the perview of this forum, but for who have had your C1 shaved during their ES surgery, can you describe the basis for that approach?
My C1 and C2 are rotated against each other, and my C1 on the left side (second picture) looks like it is significantly pressing against my IJV, compared to right side (first picture) where you can clearly see it is sitting behind my IJV.
Third picture is the posterior angle of my neck, which shows it is pretty slanted. Fourth picture shows C1 in the inferior position. You can see it is angled so that the left side is shifted forward.
Could the compression in my jugular vein at C1 be due to cervical cranial instability? If so, will shaving C1 permanently fix this issue? Are there other approaches such as PT/chiro that could help?
I happen to live in Denver where one of the leading CCI doctor practices. The consultation is $500 and his treatment is thousands out of pocket as insurance doesn’t cover it (stem cells). It’s overwhelming to consider having to add another type of specialist to my collection, in addition to that high of costs. Wondering if it’s worth it and if anyone here happens to have any guidance.
WOW! Your C2 is REALLY rotated! I can see everything you mentioned in the images. Did you talk to Dr. Hepworth about your cervical spine situation? If not, he is acutely aware of CCI issues & has specialists to whom he refers his patients. Did he referred you to the doctor you’re contemplating seeing for that? Have you had an upright MRI to more definitively diagnose CCI? Dr. Hep has a particular radiology lab he uses for that, too.
Have you ever had a neck injury or been diagnosed with hypermobile Ehlers Danlos Syndrome?
The problem with CCI is the upper cervical spine - usually C0 (skull base), C1 & C2 are unstable at their interfaces thus shaving the transverse process of C1 on the left might not be a permanent fix for your IJV compression because C1 is liable to shift again unless it fused to the skull or C2 or both, or otherwise supported since it’s unstable. Some of our members who’ve had more extreme upper cervical misalignment have seen AO (atlasorthogonal) Chiropractors who use a specialized machine to help “tap” the vertebrae back into more proper alignment though they can’t usually fix the misalignment totally. Here’s a link to a YouTube video done by Dr. Middleton who did some work on one of our members a few years ago. He does a good job explaining what he did, however, he wasn’t able to totally restore the correct position of C1. Any type of chiropractic therapy must be thought through seriously when vascular compression exists & the chiropractor doing adjustments must be someone experienced with vascular compression syndromes. Unfortunately, doctors who do the very specialized cervical spine work aren’t covered by insurance because medical insurance considers this to be alternative therapy & not medical treatment.
That was the bad news. The good news is that sometimes the vertebrae can be shifted back into better position via PT or postural work, but those take patience & time. Some of our members have gotten good results by seeing an craniosacral osteopath, but again, these doctors are usually not covered by insurance since their therapy is considered alternative.
i didn’t talk to Hepworth about the cervical spine situation but i will be sure to mention it at my next appt. i haven’t been diagnosed with EDS though i wouldn’t necessarily be surprised if i met the criteria for it.
in terms of injuries in childhood, i was a VERY accident prone kid (severe undiagnosed ADHD lol) and there are a couple injuries i can think of that may have impacted my skeletal structure. out of the ones i remember, one that probably caused some damage - at age 5 fell out of a non moving minivan and landed on my head, completely upside down, on the asphalt. i did things like that often.
have you heard of the centeno-schulz clinic in Westminster, CO? they are CCI experts and do innovative stem cell injections that supposedly prevent having to get spinal fusions. my friends son is in his 20s and has flown in from out of state twice for treatment for CCI there. i think it’s about $10k per injection (not covered by insurance) but has very high success rates supposedly and much lower risks than spinal fusions. i need to look into it more.
its been very overwhelming learning i have this many health problems in the last 8 months.
this is really helpful to info about chiropractors and cranial sacral therapists. my friend has been seeing a cranial sacral therapist recently who she highly recommended seeing, so i will set up an appt with her and give it a try
Usually the chiropractors are a short term fix so I would not expect much from such treatment.
If you never tried physiotherapy then I really recommend starting with that since CCI can be a result of poor posture.
I was diagnosed with CCI and been recently treated with PRP injections to C0-C3 ligaments and I can see quite good results in terms of neck stability. Keep in mind that there are few specialist who will perform such injections and I think Centeno are leading experts in this field. They have also developed a really innovative method of injecting PRP directly into the alar or transverse ligaments. These are the ligaments that are not reachable from the back of the neck and are in many cases a root cause of the instability when these ligaments are to loose.
They perform such injections by the throat, so this procedure is done in general anesthesia.
In my honest opinion any surgeries should be considered as a last resort as they have high risk of complications.
I have been to Centeno Schultz as well as Hepworth in Denver. Personally, I would get additional opinions on your spine. I would highly recommend consulting with Dr. Henderson in Maryland. He is far superior and treats EDS patients. Before spending tens of thousands of dollars at Centeno Schultz on treatment that may not work, you need to get a fuller understanding especially if you think you have EDS.
Dr. Hepworth is my Dr. He probably can assist with imaging but my experience is it’s very difficult to deal with his office. It took forever to get imaging ordered and approved. You will need an upright of cranial cervical junction and/or CT cervical with flexion/extension. I am planning on having surgery with Hepworth but need everything ruled out beforehand so I do not end up worse. I have hEDS. I am currently under Dr. Henderson’s care and need to have both Drs consulting to determine what to do first.
To be determined. I have already had one fusion that did not work in Boston. I had a fusion at 5/6/7. I believe the issue all along was my C1/styloid that no Dr. picked up on. No surprise. I consulted with both Dr. Centeno and Dr. Schultz. Dr. Schultz did my PRP. My DMX picked up damage to my alar and transverse ligaments. Dr. Schultz wanted to do the PICL procedure. Mind you, Dr. Centeno told me I was not a candidate for it. Dr. Henderson told me my imaging does not support this diagnosis. He thinks my issues are at C3/4/5. Very possible has this would be indicative of adjacent segment disease. He has ordered more imaging for me. I fly into Baltimore soon to go over all of the new imaging and get his opinion.
@Brandy - Dr. Hepworth is working diligently to resolve the problems in his medical office. He expects positive changes re: office communications for his patients starting on 8/1/24.
I hope you don’t mind my jumping in. I was reading through your thread and saw that you know a craniosacral massage therapist in Denver? Can I ask who they are? I live in Denver as well, am post surgery, and looking for someone with the touch of a feather to help my guarding muscles to let go.
I don’t have anywhere near the kind of issues you have with you CCI, but I did go down the Centeno-Schultz road a few years ago. Ended up not going through with their recommended therapy as it really felt more like a “sell” than a true “we can help you”. But as I’m sure you have read many feel that their treatments are helpful. It’s good to see you looking at all of the options as well though, from body work to potentially meeting with Dr Henderson. It’s so difficult when you’re a complex patient with more than one thing going on to figure out what the best next step is that will offer the greatest chance of some relief. I wish you luck as you navigate this road. And I would say, better to take longer than you wish to come to a well thought through decision that to rush into “a” decision.
my friend suffers with near constant migraines due to a concussion. the migraines have been treatment resistant. she has only great things to say about Sydney!
Thank you so much for the details. I’m thrilled to see that she really is based in Denver. I’m sorry for your friend. I had to stop working four years ago because of continuous migraine. It’s completely changed my life and I would not wish it on anyone. Also treatment resistant, My hope is that at least a fair portion of that migraine has been driven by IJVS And therefore will improve as my body adjusts to things post surgery. I am glad that your friend has found somebody that offers her at least some relief.
have you heard of Dr. Saperstein at the center for complex neurology EDS & pots in Phoenix? That’s where I’m from so it would be easier to travel there to see him.
