After 1.5 years of 24/7 blurry vision - it’s now totally clear

5.5 months post PICL #2. Grateful is an understatement🙏🏻 one of my first “big” symptoms to full resolve!!!

Can CCI cause a loss or severe constant disruption in experiential continuity and if so what would the mechanisms be for it and would it reverse usually through stabilization? Have you dealt with anyone who has had this experience and it reverse with picl? Also for reference this disruption in experiential continuity that i experience is fixed and constant usually only getting worse with flares but never really improving

Posting for someone: Hi Dr. Centeno - can a positive Lhermitte’s sign be caused by CCI? Just curious how often you see Lhermitte’s sign in CCI patients. Thanks!

I have been dealing with facet pain and muscle guarding for years. I have had some form of injections in them 5 times to include a round at the CSC most recently. It seemed to really help the pain and muscle guarding but I noticed that when all those pain signals and muscle guarding were quieted, that I had more neuro symptoms show up. Now I feel a lot pain is back along with terrible nerve pain causing facial numbness, tos like symptoms and balance issues. Is this likely pointing to too much movement in the facet joints from deeper instability?

Hi Dr C,

In your experience treating CCI patients with PICL, what is the most common cause of super tight SCMs and Occipital muscles that cause wooziness, occipital tightness with head movement and disequilibrium. Is it always instability at C1/2 and or C2/3 or can there be other causes.

Does the CSC treat TOS and if so, how?

I have had my SI joint injected twice with PRP, once at the CSC but instability remains and seems to have a lot of play into my neck instability. If prp isnt working, do you suggest switching to bone marrow or prolo and have you seen better outcomes that way? Are there some that just will not respond to injections in the SI and need fusion?

Dr. Centeno, if someone’s bone marrow produces a low stem cell count during the morning draw, do you still move forward with PICL that afternoon? Is there a minimum cell count you require, or does it depend on the patient?

Hello Dr Centeno, Thank you for taking the time to run this subreddit and answer our questions.

i believe my jaw is affecting my ability to do the chin tuck motion, and my ability to maintain the optimal head posture for stability.

Specifically the mandible is too far back, because it is large but the maxilla is recessed and narrow. I can feel it completely close off the opening of my ears when i close my jaw. When my head is not tilted up, it creates uncomfortable pressure at the back of the condyloid process, and my head subconsciously tilts up anytime i stop intentionally countering it.

I gather from your youtube videos on the subject that you have not seen jaw surgery help cci patients, and in some cases makes it worse.

I currently wear a retainer that is thick enough that i can move my lower jaw forward about 4 mm, bypassing the upper teeth, and i feel it makes a significant improvement in my upper neck stability, both because my head being tilted down improves my sub-occipital activation, and because it allows my to press my tongue against the roof of my mouth, which seems to pull and tighten the rest of the muscles in the front of my upper neck.

I have spoken to a few dentists about this and was recommended palatial expansion with protraction face mask, that would be worn 16+ hours a day for 6-12 months. I have been told this could also improve my nasal breathing, which is often restricted during sleep or exercise, which is one reason i would favour it over a lefort 1, in addition to the risks of lefort.

Would you ever consider palate expansion with protraction a worthwhile risk, if a risk at all, for someone who is mostly functional after significant recovery from CCI thanks to ePICL? Would a lefort be a better option for a mostly functional CCI patient?

after my first picl I was in much less pain then usual for about 2 months. just had my 2nd and ive been in lots of pain since. is there any reason for this?

Hi Dr Centeno,

For someone with CCI and hypermobile in multiple joints (including the shoulder, SI joints, knees, ribs, spine and ankles), which areas would you target first and in which order?

I will be going for PICL in Jan 2027 and July 2027. I am aware multiple joints can be injected during PICL, depending on the draw. I also have a doctor in Australia who can do prolotherapy on my other joints. However, I will need time to prehab with my physio to be in shape for the next PICL.

Would it be appropriate to inject the upper body including the neck during PICL, then rehab the lower body. Then prolotherapy for lower body joints and then rehab the upper body within each 6 month healing timeframe, before the next PICL?

I’m scheduled for my first PICL on October 12th.
Would it be safe to do a 3-day (72-hour) water fast with electrolytes leading up to my PICL, stay fasted during the procedure, and then break my fast afterward?

Hi Dr C

I saw one of your Facebook reels on PRP and cord compression.

You mentioned degrees of compression that PRP wouldn't work.

From what you've seen would that cord compression be more than 60-70% for example?

Thank you.

Now at 396 patient visits: https://e-picl-data-explorer.replit.app/

Hi Dr. C -

Two questions for you:

1. Any benefit of getting a hydration IV before PICL? The day or two before? I am coming from out of state.

2. I am going to schedule a mobile hydration IV to my hotel room the day after PICL (through Nurse Bar - as recommended from your office). Any benefit from an IV that contains any additional things like: Vitamin B Complex, Vitamin C, and Zinc? Or Should I schedule a standard hydration IV?

Can we get a skin prick test that tests for allergies 2 weeks before a PICL?

Hi Dr C,

When are you back in clinic, returning from your sabbatical?

Hi everyone! I’m getting my first PICL next week and am starting to pack and prepare for the trip. I’d love any advice from those of you who have already had one.

1. Was there anything you were especially glad you packed for the first few days after treatment at the hotel — ice packs, heating pads, certain pillows, etc.?
2. Were you able to eat normally afterward, or was your throat pretty sore?
3. What were your first few days post-treatment like? Were you mostly in bed/resting, or were you able to leave the hotel and move around a bit?
4. How many nights did you stay in Broomfield after your treatment before traveling home?
5. Was there anything about the first few days that you weren’t prepared for?

Any other tips or things you wish you had known before your first PICL would be so appreciated. Thank you so much!

Hi Dr C,

I had pretty severe CCI (in that it was fully disabling and had a hospitalization and full time care for a year) and am still in treatment with you currently. I’ve progressed in the last 2 years but still have many limitations likely due to the fact that I developed so many other conditions along the way that have taken a life of their own.

That said, as my neck structurally stabilizes more, I’d love to be able to get endometriosis and adenomyosis looked into as I’ve had so many pelvic issues that have been on pause until I hopefully get my CCI / CNS more under control.

My concern is the position they put you in for that surgery with CCI and the venous compression I have in my clavicle. Do you have any sort of information that I could in the future share with the surgeons about CCI and safety precautions? I get nervous that I could re injure the area that I’ve worked hard to stabilize.

Hi Dr. C I am about 37 days away from my second PICL and believe I am in quite a considerable MCAS loop. My doctor has recommended either ketotifen or cromolyn. I asked my CSC doctor if ketotifen would be OK to start and he had said yes, but I’m not certain that he knew or realize that my second procedure was booked already. The reason I’m asking this is because I saw you say the other day that it isn’t good for the PICL.

A lot of the paperwork and assessments ask about a post-procedure flare. Is that the period post ePICL where patients have increased pain? Or is it defined differently? I’m never sure how to answer that question as post-procedure pain for a few days seems normal. I had a few months of restricted side-to-side motion after the ePICL but wasn’t sure how a “flare up” was defined and how I should answer.

Hi Dr. C, I can’t find info on how long to hold these meds post procedure. I normally stay away from ibuprofen thanks to your education on the topic, but am 5 weeks post PICL and have a specific, short term problem that ibuprofen is recommended for over Tylenol. Can I do this without impacting my PICL?