Craniocervical Instability - Dr. Amy Proal interviews Dr. Ilene Ruhoy about diagnosis/treatment of structural issues such as CCI

Shanti1

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Ilene S. Ruhoy, MD, PhD is a board certified neurologist and Medical Director for the Chiari/EDS Center at Mount Sinai South Nassau. Dr. Ruhoy has trained in both pediatric and adult neurology at Seattle Children’s Hospital and the University of Washington where she received additional training in mitochondrial medicine and neuromuscular medicine. She also completed a two-year fellowship in Integrative Medicine at the University of Arizona under integrative physician Dr. Andrew Weil. Now, at the Chiari/EDS Center, Ilene uses a combination of both allopathic and integrative approaches to treat patients with chronic conditions such as EDS and ME/CFS, where she focuses on the diagnosis and treatment of structural issues such as craniocervical instability in such patients.
 

Shanti1

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Another amazing interview from Amy. Here are my notes:

General:
  • Connective tissues hold our organs in place, cover our brain as meninges, surround our blood vessels, and keep our joints stable via ligaments
  • Hypermobile/EDS patients often have POTS and other forms of dysautonomia that is likely linked to compromised connective tissue
  • The ligaments stabilizing the base of the skull and the first two cervical vertebrae present a particular vulnerability because the brain stem is housed in that region as well as blood vessels that feed the brain.
  • Craniocervical Instability (CCI) can lead to compression of vulnerable structures, including the brain stem. The brain stem controls a lot of autonomic function and also has connections with the hypothalamus so compression can also lead to neuroendocrine disorders.
  • The flow and movement of cerebral spinal fluid can also be compromised by the crowding and compression of CCI
  • High intracranial pressure is a common finding in ME/CFS along with cranial blood flow abnormalities
Predisposition
  • Being born with hypermobility gives a predisposition, but isn’t necessarily pathological. This is why there are great dancers/gymnasts.
  • Hypermobility is the first hit, a second hit may be infection, physical trauma, or toxic exposure
  • Many pathogens break down connective tissue, this is a mechanism they use in order to invade
  • Mast cells produce MMP-9, which is an enzyme that breaks down collagen (this is done to allow other immune components and WBC to migrate and infiltrate the area they are needed)
Diagnosis- three components
  • Clinical history and exam: Is the patient worse in certain positions? Many people will report a worsening of symptoms in certain positions, like turning right or left, because that is when the structures are compressed
  • Response to traction: Is the patient better with traction? Traction relieves compression, so improvement with traction can solidify the diagnosis
  • Imaging: imaging can show compression and may show a Chiari, which is when some brain tissue extends into the spinal canal.
Treatment
  • The first approach is to minimize ligamentous laxity by reducing inflammation, treating any mast cell activation, and attempting to identify and treat any infections or exposures, such as mold
  • Injection therapies can be used, such as PRP or stem cells. She didn’t mention it, but it seems prolotherapy would be appropriate (this is where an irritant is injected into a ligament to cause it to scar and tighten).
  • If fusion surgery is needed to resolve symptoms, the patient is put into a metered traction device to determine the level of traction at which their symptoms are most improved. The fusion surgery aims to maintain the optimal spacing determined in the traction test.
Tethered Cord
  • Many patients who have CCI also have a tethered cord, which is a condition in which the spinal cord becomes attached to the tissue of the surrounding spinal canal wall and is no longer free floating
  • This is thought to happen as a result of the inflammation of the connective tissue
  • Tethering can lead to symptoms as well, but CCI symptoms are typically worse. It can be corrected surgically.
 

Wayne

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Injection therapies can be used, such as PRP or stem cells. She didn’t mention it, but it seems prolotherapy would be appropriate (this is where an irritant is injected into a ligament to cause it to scar and tighten).
Tinnitus and sound sensitivity are very common in people with ME/CFS, and apparently very common in people with cervical instability. The following video is by a man who's specialized in treating CI for many years, and talks about using prolotherapy to treat CI induced tinnitus and sound sensitivity.

Tinnitus- why this symptom is so common in patients with cervical instability
 
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Shanti1

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Tinnitus and sound sensitivity are very common in people with ME/CFS, and apparently very common in people with cranial instability. The following video is by a man who's specialized in treating CI for many years, and talks about using prolotherapy to treat CI induced tinnitus and sound sensitivity.
Great video! Dr. Hauser is really specialized, I would definitely want to see him if I had CCI or EDS.