I don't know if Jen Brea is going to read this, but at least someone who knows her case closely could reply as I have been talking to many patients and we wonder a lot of things about her case. I have also CCI/AAI confirmed in my case so me, like all those with CCI/AAI have many doubts:
1)It seems she can't move her neck sideways, or has lost many degrees of movement, is that true? The doctor who evaluated me even said I would not be able to drive.
2)Since restoring that area alignment restores most of the body functions we have lost, does it restore as well the collagen production? Could the surgery be a king of "loop-breaking" method to restore collagen production. Can you remove the implant used in the surgery once the collagen production is restored and thus gain the lost movement again? (just an idea).
3)Are there any alternative methods to restore the collagen production in that area not as invasive as the surgery that are proven to work? From FMT's to stem cell therapy...anything recommended for that that is permanent?
4)Can you lift weights or put weight on your shoulders/head? or is that dangerous? what sports can you do now or can't you?
1) This is the best place to ask these questions:
https://www.facebook.com/groups/2235327493461719/?fref=nf but briefly, I can turn my head 50 degrees and have normal flexion/extension. I don’t really notice the ROM I’ve lost. My neck was just very stiff immediately after surgery as I had to wear a cervical collar for three months. It’s been a process of PT and working with a myofascial release person to increase my ROM (but ONLY after strengthening my neck). Although frankly, if my head were fixed in place, it would be a very small detail in comparison to what I’ve gained.
2) I don’t think so. At least, my nails (which became brittle after onset) are still brittle
3) Nothing proven. Folks are trying stem cell prolotherapy and BPC 157
4) Yes, lifting weights are a very important part of my PT. I should probably never run or do anything high impact, but other than that, I’m fine. Note: folks with hEDS probably have additional activity restrictions.
I saw on Twitter that
@JenB is currently bed bound again. She has a CSF leak and is awaiting a blood patch to fix it. Hopefully this is just a temporary blip for her. Wishing her well. Nothing to do with your question, but she may not be well enough to respond at the moment.
Yeah, I have been in bed since Friday. I think I’ve had the leak for over a month, after some PT-prescribed massage for my tethered cord scar. Something is probably not 100% right in the way that I healed. However, it was a slow leak. It would manifest as me suddenly needing to lay down at 2-6pm after standing all day, then getting a new burst of energy after being supine for a few hours (i.e,. CSF fluid replenishing).
Then Friday, I sat in a weird, twisted position for two hours during a meeting, which I think increased the rate of the leak A few minutes after getting up, I developed the classic spinal fluid headache. And then yesterday was hell. So that’s how I figured it out. Good news is, I’ve been more or less totally flat since Friday night and leak seems to have substantially self-healed, inasmuch as at least I can’t tell that I am leaking when I am upright for a few minutes. I am probably going to try another 48 hours of bed rest and then slowly increasing my upright activity, laying flat if I notice any symptoms of a leak. Hopefully, I can self-heal completely now that I know it is happening. If not, I will go get a patch. Main thing is to make sure that the imaging looks OK. Something tore my dura, and I need to see if there is a more extensive problem I need to fix.
Oh sorry to hear she is sick again, I have read her twitter and I really dont know why she keeps ignoring the microbiome since it seems to be the root cause of the disease (this and all). Im quite puzzled.
Because I don’t think we have any strong evidence this is the root cause of the disease and modulating my microbiome has never had any impact on my health. If that’s helpful for others, great, but I don’t know much about it because it has not been significant in my case. My G.I. symptoms or disbyosis I used to have was a function of slow motility, a symptom of autonomic dysfunction. This improved dramatically with both my vagus nerve stimulator and Mestinon. And then resolved completely with surgery.
On the vagus nerve: after it enters the jugular foramen, it joins the brainstem. So if the brainstem is compressed, it is quite plausible the vagus nerve is along with it (intracranially). If it were not, then CCI probably wouldn’t cause some of the symptoms that it does. Also, there are a bunch of cranial nerves that can get compressed with CCI that also don’t exit the foramen magnum but can cause symptoms like facial numbness, mouth drooping, tongue sticking out, etc.