I am so happy to see an update from you! I just got my 2nd PICL on the 18th and it got me wondering how you were doing. I’m so sorry you’re dealing with the dystonia. I’ve got some long covid/dysautonomia stuff going along with mine and you’re right that it’s so hard when it’s more than just the cci. One thing I absolutely love hearing you say is “I can’t do that YET” and “WHEN I’m healed”. Yes ma’am! ❤️

I’m partway through your update and hearing that you’re atlas has held for nine months, brings tears to my eyes. I also relate to how intense these conditions are and how especially dystonic symptoms are incredibly difficult and isolating because of the limits of sensory. If in time you end up having the energy for the dystonia video, I think it could benefit a lot of us who have both CCI and dystonia symptoms. Wishing you the best and rooting for you. 💛

Hey Diana, happy holidays. Small wins are the way forward, keep up the good work

Wishing you a peaceful and happy Christmas and much healing in the new year ❤

Best wishes

Hello @ItsStabilityTime I have CCI and was diagnosed thru Regenexx in Colorado. I wanted to know before I book the PICL procedure if it worked for you? How are you doing? Hope to hear back. Thank you!

Well explained

How are things going after second p I c l?

Hi- I’m a new sub to your channel- I don’t hold an atlas correction and my AO doctor sees that with patients who have issues related to jaw positioning/occlusion- whereby splint devices such as the tanner device which is a lower arch splint can work very well alongside an atlas correction and can be very effective to maintain atlas alignment for much longer periods. I’m going down this treatment path now and have spoken with many that use this splint device and some haven’t come out of atlas correction since using the splint device. Hope that helps

Hi- I’m a new sub to your channel- I also don’t hold an atlas correction and my AO doctor sees that with patients who have issues related to jaw positioning/occlusion- whereby splint devices such as the tanner device which is a lower arch splint can work very well alongside an atlas correction and can be very effective to maintain atlas alignment for much longer periods. I’m going down this treatment path now and have spoken with many that use this splint device and some haven’t come out of atlas correction since using the splint device. Hope that helps

What is the name of this clinic?

My 21 year old daughter has had severe CCI. We have been all over the country and finally found the best regenerative medicine doctored at Centano Shultz clinic in Broomfield Colorado. These guys are the most progressive and scientific with CCI and the recovery from this condition. They literally have saved my daughters life.

I totally understand what your going through. I have it as well and it is totally disabilitating. I have had prolotherapy with no success so far. I live in the U.S.A. in Texas and every doctor i see thinks im crazy or knows nothing about this issue. If PRP or stem cell do not fix your CCI. I have only found 1 surgeon in the U.S. that does this surgery. He is in New York and his name is Daniel Riew. I am still trying to find out how i can get insurance to see this surgeon. I seen video of CCI patient that had great success with him. I pray for healing for you.

somatic exercises acupressure points

Bless your soul. You are so kind to share this. It gives a sense of calm to hear hope in your voice. I had a motorcycle accident 2 years and 2 months ago. 81 doctors. 4 countries. No answers. 12 symptoms daily. Recently they found a partial tear to the transverse ligament on the right side via MRI (July 4th, 2024)...I am in India, have been for a year. I am wondering what you would recommend I do next in my journey?

Is there a certain amount of years after injury that stem cells will not work? Because 9 years later still unable to work or grocery shop. I’ve lost everything home, spouse and children ended up in psych wards no one believed me. But God is good and uses my story now. I’ve wanted to go to get PRP in Colorado or Florida but I lack the support to recover or even go out of state. Washington state is where I live.

How long does it take to get correctly diagnosed. I’ve been suffering for so many years and it’s devastating and feels like sometimes it’s too late.

How is your recovery going? I just did my telemedicine with doctor c couple days ago, He wants me to go forward with ao chiropractic, Which i've never done before, After that he wants me to go to Colorado for my in person visit to see if they'll do posteriors.Or the p I c l procedure. It's nice to finally have a diagnosis and answers. And and a treatment plan.

I have issues between c1-c2 also. Was PICL your first attempt with injections/regenerative medicine? I’m deciding between PICL or prolotherapy for first attempt

I’m so glad you are doing better. I will point out that it is not a sound wave but a percussion wave that moves the atlas.

My friend had her breakthrough right about 5 months mark.

Please try scenar therapy it helped me so much

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How was your recovery immediately after the procedure, Like going to the hotel room , then getting on the plane?

Why didn't bobblehead improve that's my worst symptom

Much appreciated for documenting your journey. I am going for Prolotherapy using dextrose in September 2024.

Check out the Headloading methods I am developing! Anyone with this serious condition will be amazed at how we can address it at the roots this way!! My page has good info and all free. So many of my symptoms have vanished!

First I would like to thank you for recording and sharing your experience with stem cell procedure and healing. It means a lot to us dealing with CCI/AAI. Then I would like to ask you two things - Who did you do the procedure with and also, I saw in some other videos of yours that you are wearing soft instead of hard collar. I’d like to hear your experiences with it and reasons why you chose soft instead of hard. I’ll be following your updates and progress and chearleading for your healing. 🍀

Can you please share what you do in pt and things to mange dystopia sending much love ❤❤❤❤

Go you !!❤

Have u been evaluated for Tethered Cord? (And do you have lower body symptoms ?) Also great job - you’re moving along and trying things and I think you’ll feel the benefits with a bit of time ❤

This is a great resource for others-I really appreciate the way you explain things. I think it’ll be helpful to many, and I’m adding it to the resource playlist on my channel. I have a question for myself: I also struggle with sensory issues, and how noise affects my balance and coordination. Is this something you’ve come across as being part of dystonia?

@JoaoSiebinho Hey Joao, I thought this video might give you some good information.

I think I heard wrong- did you say no pain meds?!!!!

So far my only real change is my heart rate is becoming a bit more stable. All of the neuro stuff like dizziness and feeling faint is still so rough. I am so happy you’re seeing something positive. ❤️

I certainly wouldn't mind having more upright time 🤕, good that you have noticed that

Scrambler therapy works super well for dystonia!!! I have that machine also come to NYC

Come to NYC I have a scenar device I will treat you!

Try scenar therapy it works so well and also there’s an upper cervical specialist in NYC at Apollo that is great

And you have also put #bobblehead in the hashtags ☺

Friend, have you ever been evaluated for autism and ADHD? I ask because when I got diagnosed with hEDS, I started working with a PT that specializes in EDS for a few months and I started to notice that at the end of every zoom call, I would feel SO horrible and exhausted. And finally she asked me if I had ever suspected AuDHD and I told her no, it's never been mentioned to me before that I might have it, but then I ended up looking into it and read the book Unmasking Autism and SO much clicked together as to why I was feeling so terrible after phone calls and zoom calls with people. I ended up getting a formal diagnosis (which I don't necessarily recommend other than for the validation because it's very expensive) and it helped me realize how much simple things like making eye contact, having long conversations, forcing myself to sit up to be "polite" even if I felt uncomfortable, thinking about the script in my head of what I should say, etc just really drain me. So I started focusing on trying to fill my day with more "glimmers" versus "triggers" and that helps a lot. I will say, it's very difficult because so much of regular day to day life and living in the modern world triggers me but when I really listen to my intuition about what I need as an Audhder and knowing how important it is to accomodate myself has been life changing. Also, the prevalence of neurodivergence in EDS is massive! I wish they would do more research studies as to why this is.

I relate a lot to what you said, especially about how our journeys can differ in how these conditions impact us and what management and recovery may look like. I also understand how much it takes just to manage basic energy levels. While we want to give, it's crucial to ensure we're not depleting ourselves to the point where it further impacts our health. Thanks for sharing your thoughts and needs. Warmly, Rachel

I’m going for picl too

Can’t wait for picl update

❤

Funny you said, "God will restore more than you lost." I was at my river this morning praying in the sun and water, it was so magical., I even said it outloud, "God will give my double for me trouble". The phrase “God will bless you double for your trouble” is derived from the book of Isaiah 61:7: I have been suffering with blurry vision and dizziness everyday from my CCI. I am seeing a sought out Chiro who does DMX"s but I am also being treated by him at $125 a pop. So expensive and it seems like restoring my curve and to get better seems so far away. Going to stay hopeful and positive. GOd bless you! Keep making videos!

For the vast majority of individuals, 8-12 treatments at 1 time per month, with a few necessary protocols and accurate diagnostics and techniques is the key to healing. How someone chooses to find their way to healing varies greatly but the actual particulars needed to heal are basically the same. ✌️ ❤️ 🌈

How are you doing these days??

Ooooo it sounds like it could be your hyoid bone potentially (I'm not a doctor so not medical advice!). But my hyoid bone dislocates frequently and it feels like a sharp bone slipping in my throat, more towards the front and not the back. C1-C2 slipping would be felt more towards the back. But it's also possible that it's a calcified styloid, have you been evaluated for eagles? You could need a CTA or CTV for this, I believe an MRV can also diagnose it. Do you mind sharing the clinic that you are seeing for the neuro rehab? Personally, I have been researching the connection between jugular vein compression and dystonia. Jugular vein compression leads to intracranial hypertension chronically in many cases and venous outflow disorder, basically blood flow and CSF will build up in your head and not be able to exit fast enough. I had an invasive angiogram, venogram, and lumbar puncture by one of the world's top IIH specialists and he was able to trigger my dystonia during the angio/venogram by increasing the pressure through my veins. Also, he uses lumbar puncture as a provocative test to see how reducing CSF pressure affects symptoms, and my dystonia was almost GONE for the six hours that my CSF pressure was lowered. He believes that those with hEDS have issues with CSF pressure and are highly sensitive to changes in pressure.

You should do cervical strength training, the muscles hold c1 in place, it’s the only thing that will solve your issue Iron neck device worked for me and there is a guy on KZbin with heds that is getting great results with iron neck device. Prolo is a rip off!!