Fraser Henderson - Doctor in Maryland who treats EDS, CCI, tethered spinal cord, POTS

[Mary]

This showed up in my feed this morning: https://www.news4jax.com/features/2...s-journey-after-18-month-fight-for-diagnosis/

After the usual gaslighting by doctors, the woman in the story was referred to a doctor in Maryland who has actually been able to help her, Dr. Fraser Henderson: https://metropolitanneurosurgery.org/ She was found to have EDS, CCI, tethered spinal cord syndrome. She was already diagnosed with POTS. She's had 7 surgeries, the article doesn't give all the details but it sounds like the doctors in Maryland are finally helping her.

I know finding good doctors knowledgeable about these conditions is just about impossible and this one sounds good. Overall it's a pretty good little article too - stresses we have to advocate for ourselves, change providers if they're not helping, etc.

 

[Zebra]

Hi, @Mary

What a great resource to share for those of us interested in exploring CCI, tethered cord, etc.

It seemed like for many years, one of the only experts in this area was in Spain!

Good to know there is someone stateside as well..

 

[Mary]

@Zebra - I feel the same way, I was very surprised to see this article. I don’t deal with those issues, but I have read about them on this forum and elsewhere and the only doctors I’ve read about who can treat them are in Spain - I can’t imagine being able to access effective medical care for any of us for that matter!

 

[Wayne]

It seemed like for many years, one of the only experts in this area was in Spain!

Hi @Zebra -- It has seemed to me there's a variety of therapies that could potentially be helpful for people with CCI related issues, and are generally easier to access and safer to employ than surgery (which may be needed in some cases).

The following video is done by Ross Hauser of Caring Clinic in Florida (another office in Illinois), a place I've wanted to visit for an evaluation for quite some time now. It's really quite an eye opener for people unfamiliar with the many symptoms that can be caused by CCI, and how prolotherapy can sometimes resolve them--without surgery.

Conditions caused by CCI that can be treated with prolotherapy

Ran across the following today by Jeff Woods, who's posted extensively here on PR on his successful CCI surgery.

Abstract​

The underlying pathologies driving post-acute infectious syndromes (e.g. myalgic encephalomyelitis / chronic fatigue syndrome, long COVID, etc) remain poorly understood. Given the extreme burden these illnesses impose on suffers, and the dramatic increase in cases following the COVID-19 pandemic, it is important to establish a deeper understanding of these pathologies.​

​

We propose a model of how ME/CFS (and related illnesses), might emerge following a viral insult. Central to this hypothesis is the recognition that the core diagnostic features of ME/CFS involve bodily systems known to be governed by the brainstem. This is consistent with the growing literature suggesting that spinal and craniocervical pathologies are over-represented in people with ME/CFS and other post-infectious disorders.​

​

We hypothesize that a non-trivial number of cases of ME/CFS and Long Covid (LC) may have a ``mechanical basis." We propose that an infectious insult may trigger an initial loss of connective tissue integrity in susceptible individuals (e.g. those with pre-existing hypermobility spectrum disorders), which in turn leads to instability at the craniocervical junction, and ultimately mechanical deformation of the brainstem.​

​

This ultimately causes widespread autonomic nervous system and immune system dysfunction due to aberrant signaling from the deformed nuclei. This causal chain may also lead to a vicious cycle: if the dysregulation produced by the initial brainstem deformation leads to a deranged immune response or state of chronic hyper-inflammation, further expression of connective tissue degrading and remodeling factors such as MMPs and mast cells may be triggered.​

​

This could further degrade the connective tissues of the craniocervical junction and, in turn, increase mechanical deformation of the brainstem, leading to symptom exacerbation over time and leading to the chronic, lifelong presentation typical of ME/CFS.​

https://www.preprints.org/manuscript/202506.0874/v1