Niki Naeve

The Occult of the Tethered Cord

By this time, late December 2023, Colin and I are jokingly referring to the whole affair as “The Occult of the Tethered Cord.”  It seems so surreal.

Dr. Klinge had said she was scheduling out to late February.  Colin and I poured over our calendars; we both had a two week period which would work for surgery March 5.  There were few other windows possible for Colin in 2024. I researched flights and Airbnbs and was ready to press the “go” button.  I was told the surgery scheduler would be back in town Jan 3, and would call me.

Within minutes of returning from my appointment at Rhode Island Hospital, I had consulted the EDS Tethered Cord Group on Facebook.  These people are amazing.  I worried about how to manage travel from Rhode Island to Colorado after such a major surgery, but thankfully others have gone before me.  Many of Dr. Klinge’s tethered cord patients travel for care.

I‘d be restricted to lifting no more than ten pounds for six weeks, not to mention allowed little to no bending at the waist, twisting, or squatting.   One woman said she’d had two surgeries and flown home first class one time and booked three seats for herself the second; the latter was much better.  Check.  It’ll be expensive, but now I know how I’m going to do this.  Partner as assistant, direct flight fro Boston, Airbnb, car rental, Dramamine, Metoprolol (to manage POTS, especially during rough air,) wheelchair, three seats….arranged ride home.  We can do this.

FYI, we had to fly in and out of Boston for a direct flight, but Breeze Airlines says they will offer direct flights from providence to Denver and some other cities starting in May. 

I had a plan, but…Crickets.  Jan 3, no call.  Jan 4, 5…9, 10…I called the office and left messages on the portal every few days.  I was told they’re getting people in as they saw Dr. Klinge, but I was starting to wonder if something else was going on.  I knew the surgeon had  taken some time off to deal with some personal health issues in 2023.  Rumor on line was she may be out for the foreseeable future.  She had been training two others, but I was reluctant to have surgery with anyone less experienced than Dr. Klinge, especially considering I’m relatively functional as I am.

So, after two weeks, I let it go.  Colin and I sat down and planned out the year – without any surgeries!  MALS was supposed to be next, but it seems there’s a possibility treating Tethered Cord can help MALS.  Dr. Klinge said she’d had a few patients with my main pain pattern, (currently being identified as MALS, the “impaled with a broomstick” feeling front to back, just to the right of the diaphragm.)  One or two each had that pain disappear, get better, or not improve at all. 

Also, I was (and still am) not at all thrilled about the potential of three months of nausea promised by Dr. Richards after MALS surgery.  So, I decided to take a memo from the universe and just take a year off surgeries!  What fun!  We reserved an Airbnb in Arkansas for the much anticipated solar Eclipse, bought tickets to Oregon for Colin’s workshop in August, and discussed his art fair schedule and trips to Moab to fix things at the condos.  Colin also accepted some photo tours he’d put on hold for the surgery in March.  I told my band I could sing in the kirtan March 9.  Life moved forward.

You know what happens next, of course.  Suddenly, three weeks after I’d expected a call, I got a message through the portal: “You’ve been scheduled for surgery March 5.” 

Wait, what? 

After some back and forth, we managed to schedule for the following week; I’d sing my kirtan, Colin would be back from Moab, and he had no tours scheduled until April.  It felt a little rushed, but given the unpredictable nature of health, life and the universe, we thought we should grab this “golden ring” while it presented itself.

I personally know many people who suspect they have Tethered Cord, and simply can’t access the expertise for a proper diagnosis.  There are just so very few doctors who can correctly identify and treat adult tethered cord.  I am very fortunate to have nationally accepted health insurance which covers Dr. K and her hospital.  But if you have, say, Medicaid in the state of New York, you’re limited to doctors within the state and will have to private pay to see her.  You can send her imaging and see if she will see you, (which would indicate she sees something suspicious on imaging, and would like to further confirm with her neurological testing) but you will then have to pay to travel to Providence, stay and see her.  Not everyone can swing that, much less pay for neurosurgery, so what would be the point? 

I’ve had several conversations with people in various stages of appealing to insurance, trying to change insurance providers or somehow swing the finances to see Dr. K, and I wish I had easy answers.  I do often remind people there’s a dedicated Insurance Commissioner, (I believe in every state,) and it is their job to intervene for you when you hit a roadblock with your insurance company.  I have personally used mine once or twice, with good results.  If you have had any luck with this process, I’d *very* much appreciate you leaving details in the comments.  My heart goes out to those in the darkness if the diagnostic process.  I have been there, (and to some extent always will be,) but I’ve had the luck and resources to pursue options others have not.

Alternately, thinking outside the box, I wonder if those without access may be able to swing a sort of hybrid process, at least for diagnosis.  You might do this by submitting imaging to Dr. Klinge’s office for analysis, and if they call you for an appointment, you know she has seen something suspicious for Tethered Cord.  Then you might see an in-network neurologist and have them test your reflexes and leg strength.  If you have large differences in upper and lower body reflexes and leg strength, (right vs. left,) plus other symptoms of Tethered Cord, you have pretty strong evidence for a diagnosis.  Then, perhaps, you start re-organizing your life to obtain insurance which covers surgery or start fighting with your insurance for coverage. 

None of this sounds easy, and if Dr. Klinge doesn’t see a tether on imaging, this is one step harder, of course.  In that case, one may still have “Occult” Tethered Cord, which must be diagnosed by everything besides imaging. Here are some symptoms to keep in mind if you suspect Tethered Cord:

• Low back pain

• Pain, weakness, numbness, tremors or spasms in legs (one website I saw says “shooting” pain, but a doctor I heard interviewed says he usually sees more of a deep, dull ache.)

• Bladder dysfunction (hesitancy, urgency frequency, repeated UTIs)

• Bowel dysfunction (usually manifests as constipation)

• Changes in how feet appear (arch being pulled up or toes curling down)

• Cysts on spinal cord

• Scoliosis (I would add to this, spinal degeneration beyond what’s expected for your age or other conditions, as this is the case with me)

• Difficulty with movement

For a diagnosis, you want to corroborate symptoms as much as possible with imaging and clincal findings.  Also, EDSers, keep in mind we’re more prone to this than others.  Klinge’s office says about 75% of their TC surgical patients have EDS.  So yay, they are experienced with us!  Boo, it’s another thing we have to watch out for.  I hope that helps.