No problem! CCI is extremely challenged and there is allot of misinformation and confusion about how to deal with it. I was told many things that ended up not being true.
In terms of the AO- I had to get vectors from an AO in NY( I live in CA) because a dozen other upper cervical Drs couldn’t help me + can only be correctly adjusted by 2 so finding an AO qualified enough to even help someone with CCI is extremely difficult as well. Upper cervical chiros are most definitely not created equal.
I know Centeno Schultz is pretty expensive but Dr Reeves was very affordable. Granted travel costs for repeat treatments out of state can add up just(I had 3 with him). Not saying Reeves is or isn’t the right fit for what you’re looking for, just saying there are options. There are some prolotherapy FB groups out there where you can ask around for Dr suggestions( who can treat CCI). You can even ask for some non-regenex options. Regenexx and caring medical kindof dominate the space but there are other prolotherapy Drs who’ve been treating CCI for ages( before they even had a name for it) and aren’t advertising loudly about it.
Thanks for your well wishes. I had the eagles problem the whole time unfortunately( it just wasn’t diagnosed), so I’m hopeful this surgery will be the best right step and I won’t need more and more procedures as I see is the case for many others with similar conditions. It can feel never ending when you’ve been through allot already though.
Glad your daughter has you helping to advocate for her! And hope you both can find the right fit for care soon.
I sure hope all goes well with your surgery. re: Mast Cell meds….are you talking about Cromolyn? You have to come off that? Im heading into surgery myself, thats why I ask. My daughter as severe POTS and somewhat housebound as well. I would think as long as your well hydrated and heart rate stabilized and pain under control, you should be ok to not do an overnight stay but if my insurance would cover it, Id stay.
These are points that can be discussed w/ Dr. Hepworth & the anesthesiologist prior to your surgery as both will come to see you prior to you being wheeled into the OR. You can request a smaller intubation tube than is normally used, have a chat about types of anesthesia, & discuss head position though I’m not sure how negotiable that is based on what Dr. H needs to access during surgery.
@Glitterbats, may I ask what AO doc you saw in NY – was it Dr. Rosa? He tried ever so hard to help my CCI, atlas and C2 torquing opposite directions, then sent us to Dr. Centeno for 5 treatments of $10-15,000 a piece (and we’re self-pay!) … We also went to an AO doc here in GA (Dr. Boutwell, a phenomenal doc, who’s also on Dr. Rosa’s board, and works in the same office in Augusta with his twin brother) – for about 6 months, we went the 1½ hr. one way drive TWICE a week, with no improvements. My atlas was out every. single. time. We continued seeing him sporadically for a couple years, then stopped it altogether, partly because of the 3 hr. round trip drive.
Then…5 months ago I was diagnosed with EDS/CTD/MCAS/ES, etc. And since then all the struggles we’ve had over the years start making sense.
Prolotherapy did NOT work for me. I had 4 treatments on my neck, of about 200 injections per treatment (the blood would run down my neck, and drip through the hole where I was face down on the table, and pool in a puddle on the shelf below – gruesome!) But like you said, everyone responds differently, and I’m glad if it does help some folks!
I’ve been reading on the forum daily, enjoying it because symptoms folks mention hit home so closely. In the last week, my husband spent several hours one Sunday afternoon reading and reading through the forum too. His comment when I asked “Interesting?” was, “Yes, it’s interesting. And what stands out is that the symptoms are the SAME! all the way through it, and match up with [my] symptoms, too.”
@GeorgiaKay - I love your husband w/o ever meeting him! How kind & caring of him to take the time to read through posts on our forum & even more so to see the connection between what he read here & what you’re going through.
I know I’ve said it before, but I’m so sorry the alternative therapies you’ve tried, at great expense, haven’t give you any symptoms relief. Finding out what the basis is of your CCI i.e. hEDS/CTD/MCAS/ES is significant to helping understand why you’re struggling. I recently posted a link to Dr. Linda Bluestein’s blog called Bendy Bodies. If you haven’t looked at her information, I think you’ll find it interesting & helpful. https://www.bendybodiespodcast.com/
Yes, I saw Dr Rosa. I’ve had to get two sets of vectors but I did start holding longer with the first set. I’m not sure where you got prolo but the exact placement and how it’s injected seems at times almost more important than what proliferating agent is being used. I really don’t think most Drs of any kind know how to deal with CCI.
I tried multiple Regenexx treatments that did not seem to do anything( stem cells, prp, prolo) for a few years. Anyway, I’m sorry Rosa wasn’t able to help. I mean it sounds like you’ve gone to really good people, so it is possible AO just doesn’t help you that much. Or maybe Eagles is interfering allot.
Out of control inflammation, MCAS, dysautonomia, stress can also all interfere with holding adjustments. Honestly, this is a bit lame but even posture and what pillow you use, etc effects it. The main thing is just to get through the window post adjustment bc it’s very easy to loose it for a period of days/ even weeks after it gets put back. I’ve been there where it doesn’t hold at all or can’t even get past 24hrs and I know how terrible that is. I’ve learned now to not even barely use my arms after an adjustment( mostly lay down), as stability increases the longer your holding. Sorry you’re dealing with bad instability.
I’ve driven crazy distances and even gotten on a plane for my atlas so I get it. Have been through absolute hell with it.
There are some people who also need fusion but it sounds like you have allot of other things going on to consider first.
Thanks very much! I appreciate any well wishes I can get. Cromolyn is just one of the things I’m on but I do think you may be right about that one. And that most likely we can stay on Cromolyn up to surgery.