My question was discussed as the last item of the tonight’s EDS call and you said that I could follow up here (it was in regard to my apt at TCI and some possible things….low lying tonsils, retroflexed odontoid, abnormal clivo-axial angle. You had said you had some of the same things and was able to treat it medically). Can I get more info on that? My appointment at TCI is coming up soon on 10/21 and I want to make sure I as well versed as I possibly can be and make sure I ask the right questions….I have no idea what to expect at my appointment. If there are things I can try medically I’m all for it!
There might also be a question on syringomyelia. If this is something that is found – have you had any results treating this medically also?
Do you find that some of the tracking eye issues, vertigo, dizziness (other autonomic stuff) goes away with the treatment you are talking about?
I have a couple of images of my brain and c-spine I can send along if you’d like.
Thank you SO much for all the terrific info on tonight’s call. You are awesome!
Hi Nancy (and everyone else!) for hanging in on that webinar! Yikes. Tons of technological glitches, but I was so glad that most of you stayed. YOU DESERVE A MEDAL! I’m curious where you are from, Nancy (could you get to Texas for treatment)? We’re just winding up our treatment trial for this and hope to get it published soon. So I have to tippy-toe a bit until it is published… But, YES, vertigo, dizziness, lateral rectus palsy and other symptoms usually go away, too. Yippee. I can usually tell if you are a candidate by looking at your MRI’s of head (and neck if you have them — for spine you get 2 bonus points. ha), your symptoms checklist (you can find it here: http://prettyill.com/resources/view/symptoms_checklist_for_chronic_fatigue_syndrome_m.e ) and I’m using some special ocular instrumentation to take a very close (and technology-driven) look at your eyes. Although I’m wrapping up the clinical trial patients, we can likely look at your info and see if you qualify. We can get you started on treatment, and perhaps have a member of your team keep it going once you’ve settled in (medically). 🙂 I *really* want to get to the next layers of figuring out exactly why this has happened to you, but getting you started with treatment first can make your quality of life MUCH better while we work out the rest of it. So, if you’d like to start with your symptoms checklist (please remind me who you are when you send it in), I’ll be happy to see what we can do at this juncture. As I mentioned, my kids and I had ALL of the cranio-cervical instability symptoms/signs (including retroflexed odontoid, etc), but we were still able to avoid all surgeries. I pray you can achieve the same, and think it is perhaps approaching poor ethics NOT to try this on patients prior to invasive, painful and irreversible surgeries. Or maybe I’m just a chicken when it comes to surgery. ha. 😉