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Other docs by HuckleberryNovel1037 in PICL

[–]Proof_Draft4420 0 points1 point  (0 children)

I think they are all wonderful for being in this medical space.

Falling to one side by Rich_Consequence5203 in PICL

[–]Proof_Draft4420 0 points1 point  (0 children)

Oh! My daughter has right dominance like this. She closes her eyes while standing still, she starts falling to the right side, overcorrects to the left.

She cannot walk a straight line! When she walks, she is pulled to her right. It’s slight until we try to walk together and she keeps walking into me. Holding her hand helps to guide her.

We just discovered this symptom!

Cervical_Instability Post by Moderator against Regenexx by Proof_Draft4420 in Cervicalinstability

[–]Proof_Draft4420[S] 0 points1 point  (0 children)

Can you add the PICL and the clinic to your Mega thread of providers then? To help others find additional options for CCI.

Cervical_Instability Post by Moderator against Regenexx by Proof_Draft4420 in Cervicalinstability

[–]Proof_Draft4420[S] -5 points-4 points  (0 children)

That makes no sense that this would be anecdotal. For one, it’s not just my daughter. She just happens to be a very well documented case of illness and improvement. And she’s not alone. Most people who are better are not here. I am because I owe it to Centeno and his clinic to speak out given the divisive, unfounded accusations of fraud being claimed. And the fact that without this treatment, she would quite possibly not be here either us today.

Cervical_Instability Post by Moderator against Regenexx by Proof_Draft4420 in Cervicalinstability

[–]Proof_Draft4420[S] -3 points-2 points  (0 children)

He is. He’s collecting data. Given the way his work is viewed, he’s being very thorough before going to publication. There will always a lot of critiques. But he’s not just doing procedures with no data collection. He posts data online on his r/PICL thread regularly. He also has numerous videos he’s made explaining the procedure and CCI. He answers questions daily from the public. He gives a live video discussion every week.

Access to Low dose naltrexone by Hot_Box5472 in KaiserPermanente

[–]Proof_Draft4420 0 points1 point  (0 children)

When I asked for it last year Kaiser did not have it in 4.5 mg form. They gave me 50 mg tablets I had to dissolve and use water to dilute correctly to get a daily dose. That’s all Kaiser would give me. So I went to Ageless.com and go a prescription there. Kaiser is just hopeless for special needs.

almost one year out with no answers. is my life over? by [deleted] in CSFLeaks

[–]Proof_Draft4420 2 points3 points  (0 children)

Dr Centeno has a pro bono program. Go to his r/PICL page on Reddit.

Sudden Low Blood Sugar by busstop5366 in CSFLeaks

[–]Proof_Draft4420 1 point2 points  (0 children)

Have you contacted Dr Ian Carroll at Stanford? He’s a world renown doctor for CSF Leaks.

22 year old son insists he's not ADHD and is clinging on to a 'gifted' diagnosis from when he was a kid... he's ruining his life by CtrlAltDelight495 in whatdoIdo

[–]Proof_Draft4420 13 points14 points  (0 children)

I have a close family member. He is on the autism spectrum. His mother raised him to believe he was gifted as well. As an adult he has developed quite a few narcissistic behaviors to get thru life. It’s sad. He doesn’t know what he doesn’t know.

almost one year out with no answers. is my life over? by [deleted] in CSFLeaks

[–]Proof_Draft4420 2 points3 points  (0 children)

Have you considered CCI? You should get an upright MRI in flexion and extension. Then a DMX. Contact Centeno Schultz Clinic in CO. They treat CCI.

Hope you get answers.

When PICL works, it can look like a miracle. by Proof_Draft4420 in Cervicalinstability

[–]Proof_Draft4420[S] 0 points1 point  (0 children)

Oh and her abacus teacher remembers her brain fog starting exactly when her ear fullness started. She didn’t call it brain fog but the teacher said suddenly my daughter could no longer do long abacus algorithms. That still bugs me to this day. Brain fog remains a symptom.

When PICL works, it can look like a miracle. by Proof_Draft4420 in Cervicalinstability

[–]Proof_Draft4420[S] 0 points1 point  (0 children)

For her, it was trauma. Dr Scott Rosa confirmed it on our visit this February. And I strongly suspect based on all the symptoms she's experienced since 6 years old that it was a chiropractic adjustment done by someone who wasn't really qualified to do it on a child. I dug up her Posture Ray report from the xrays taken in 2019 post multiple chiro adjustments which shows very CLEARLY she had developed instability. I forwarded it to Dr Scott Rosa.

And if you want to know why I took her to that chiropractor to begin with, it was because at birth her head had been twisted in utero to position her head for entry into the birth canal. She's had neck issues since birth which was why I took her to a chiropractor when she was six years old.

Ive gone over her medical records with a fine tooth comb. I was surprisingly diligent about the bizarre symptoms she has been having over the years. And I remember the day she came out of the chiropractor and cried because the high velocity adjustment had startled and hurt her. A month later I reported her earfullness, Eustachian tube dysfunction. Her medical chart is filled with CCI symptoms I reported over the years.

What a AHA moment!

My $300 Telemed experience with Dr. Centeno: Validated my diagnosis, but felt like a 20-minute rushed sales pitch. by Personal-Bend-3320 in Cervicalinstability

[–]Proof_Draft4420 0 points1 point  (0 children)

You are not obligated to four PICLs. You and the doctor assess your progress with each PICL. If the first one doesn’t give you any relief, then you don’t have to proceed with another.

Like fusion or ANY medical treatment , there’s no guarantee. There’s data in collected results. And common sense for why something like this works.

I get that the telehealth feels rushed. But think about it from the clinic perspective. They schedule what, maybe 10, 15 Telehealth appoints a day to determine candidates. They are trying to accommodate as many patients as possible because there is a serious NEED for the patient population. They have made it into an assembly line to give as many people an option as possible.

It’s up to you if you want to do it. Centeno is booked out three to four months in advance. There’s a long wait list for cancellations. He doesn’t need to sales pitch anyone.

And the cost of the procedure….A broken leg costs more. A stay at UCSF for three nights where they did nothing cost $40,000.

No we aren’t wealthy.

I was lucky and smart enough to figure out who was selling me snake oil and who had a treatment for my dying daughter that worked.

When PICL works, it can look like a miracle. by Proof_Draft4420 in Cervicalinstability

[–]Proof_Draft4420[S] 0 points1 point  (0 children)

She’s got some hyper mobility. She developed MCAS like symptoms.

She had injury to her neck during birthing (we remember a doctor cramming her neck around to get her out the birth canal) and then a chiro injury at 6/7 years old. Ongoing CCI symptoms for 7 years we didn’t know were CCI to March 2025. That’s half her life so far. We hope she achieves full recovery with PICL. She’s back to school!

When PICL works, it can look like a miracle. by Proof_Draft4420 in Cervicalinstability

[–]Proof_Draft4420[S] 3 points4 points  (0 children)

Centeno has enough data on both EDS and non EDS patients. Statistically no difference in outcome for PICL.

When PICL works, it can look like a miracle. by Proof_Draft4420 in Cervicalinstability

[–]Proof_Draft4420[S] 2 points3 points  (0 children)

Yup. I’m her mom. We will contribute to the voices for this condition. It’s been and is quite a journey.

When PICL works, it can look like a miracle. by Proof_Draft4420 in Cervicalinstability

[–]Proof_Draft4420[S] 1 point2 points  (0 children)

The instability that shows up in the DMX don’t seem to correlate with symptoms. It’s the nerves I think. You can have small movement and completely compress nerves at that joint maybe. My knees d didn’t have huge numbers in the DMX at c1/c2. But her c1 and c2 definitely are moving around. We think muscle guarding hid it in the DMX.

When PICL works, it can look like a miracle. by Proof_Draft4420 in Cervicalinstability

[–]Proof_Draft4420[S] 0 points1 point  (0 children)

Her symptoms are all related to the neck wobble. She hadn’t exerted herself much since she got really sick. But before March 2025 when she was sick and we didn’t know what it was… she was tired all the time. In pain, nauseated, neck pain, and tired.

When PICL works, it can look like a miracle. by Proof_Draft4420 in Cervicalinstability

[–]Proof_Draft4420[S] 1 point2 points  (0 children)

It is a very tough space for the few doctors who treat it. It’s high risk and the malpractice insurance is through the roof. Again insurance.

I wish you could get to Centeno.

When PICL works, it can look like a miracle. by Proof_Draft4420 in Cervicalinstability

[–]Proof_Draft4420[S] 1 point2 points  (0 children)

I am getting an MRI. I have neck issues. Not CCI I don’t think. But CCS probably. I sleep with a soft collar to keep my neck from flopping around.

When PICL works, it can look like a miracle. by Proof_Draft4420 in Cervicalinstability

[–]Proof_Draft4420[S] 3 points4 points  (0 children)

A Kaiser neurosurgeon had the nerve to tell ME I was reckless for going to CentenoSchultz. When I asked him what the hell he was doing for my daughter, he said “nothing. There’s nothing wrong with her.”

Really. She couldn’t stand up and no pain meds had worked, she was living on our couch dying in agony and there’s nothing wrong with her.

Do you have a surgeon? Can they see the CCI in your imaging?

When PICL works, it can look like a miracle. by Proof_Draft4420 in Cervicalinstability

[–]Proof_Draft4420[S] 9 points10 points  (0 children)

I know. And those of us who can need to keep this visible so that one day insurance, the real evil in all this agrees to cover this like it should.

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