The diagnosis of tethered cord was barely on my radar until I saw my current Physical Therapist, Dr. Caroline Creager. An EDSer, herself, Dr. Creager has done deep dives into whatever research is available regarding the more malevolent ghosts which ride with hEDS, in order to help herself and her kids.
Honestly, at first I was mostly bummed that my previous talented and compassionate physical therapist left town. The next one fired me because I wasn’t progressing as she thought insurance would demand in order to keep covering treatment. It’s difficult to find PTs who specialize in hypermobile people, and I was at the end of the list of those nearby who take any insurance whatsoever. Dr. Creager was a bit of a longshot, and I was pretty sure I’d just have to keep accepting lower levels of care for chronic pain and/or keep accumulating debt in order to access decent therapy. I figured eventually I’d need to rely on heavier and heavier hitting drugs to manage pain.
Since we’d already established I have hEDS, (Hypermobile Ehlers-Danlos Syndrome) when I started treatment with her, Dr. Creager utilized some rather low-tech methods to screen me for various EDS comorbidities, such as CSF leak. I laid down, we taped some kinesio tape on my back, and she asked me how I felt once I was upright. Since it perked me up, at least a little, she was pretty sure I’m a leaker right away. Then, maybe 3 months into my treatment with her, one day Dr. Creager said, “I will eat my shorts if you don’t have tethered cord.”
I’ve had a lot of diagnoses thrown around and don’t light my hair on fire about much anything, any more. I suppose, like most of us with odd connective tissue issues, I’m a bit numb to the bombardment of chronically bad news about the state of the body I inhabit. My reaction was probably kind of between an eye roll and a sense of dread. This obviously isn’t true… but if it is, what insurmountable amount of work and research, long drives to new doctors, painful tests and teeth gnashing is this going to result in?
Finding a sort of middle-of-the-road path in a sense of duty (to myself? to Dr. Creager? to science?) I decided it couldn’t hurt to send my imaging to the nearest of the two surgeons she recommended for tethered cord. It took several months to get the necessary MRIs connected with the correct FAX number for the referral, and by the time I got my ducks in a row, Dr. Pang was no longer accepting new patients outside the state of Oregon.
I almost stopped there. But, I mused, as long as I already have the imaging… I might as well run it by Dr. Creager’s one other referral, Dr. Klinge in Providence, Rhode Island.
While I awaited her reply, I saw two spinal specialists in the Denver/Boulder area to advise on the imaging, which showed just a lotta buncha crap, basically degeneration beyond what a person “should” have at my age. Mostly they offered some shots which might help pain temporarily, spinal surgeries later if I need them. I mentioned tethered cord and both were definitive: there’s nothing there, there.
I ran the imaging casually by some other people who read MRIs, and they agreed. Yup, no tether. You’re fine, Well, maybe not fine… but you don’t have that.
A few more months passed. One day Dr. Klinge’s office called me to schedule an office visit. I wasn’t remotely ready for this. I had one question.
“Does the fact that Dr. Klinge is willing to see me mean she has reviewed my imaging, and sees something suspicious for tethered cord?”
“Yes.”
Well, crap. I cancelled the return leg of my Christmas visit to Wisconsin and decided to fly from there to Providence, since I’d be halfway across the country, anyway.
I remember when I used to hope for a diagnosis. Any diagnosis. Through my twenties I sought medical logic for my many odd symptoms. Tests were run. Observations were made. Heads were patted. Surely you’re just suffering from anxiety, or have too much to do. “Sometimes we all just need to relax,” one well-meaning neurologist told me, while another reported me as “inappropriately jovial.” (So I’m not allowed to be determined to find a diagnosis, or sad, or happy?) This all just seemed an absurd joke by then. Clearly everything I observed in my body was either not true, or completely unobservable by the rest of humankind.
Then at age 31, diagnoses started piling in, and I rather wished they would stop. Interstitial Cystitis, some sort of vague autoimmune connective tissue disease, Wolff-Parkinsons-White or A/V nodal re-entry, Hashimotos… I figured a cardiac ablation would solve a good deal of my symptoms, but it was only the beginning. I moved to New York to try for full time work on the stage. I figured I’d at least die having tried.
Next came a deep dive into the vascular compressions world, after some imaging implied I may have Renal Nutcracker Syndrome. Since then I’ve been swimming in those waters with an amazing group of people around the world. I went to Germany for a more detailed diagnosis, and decided to start my surgical intervention from the top down, with the Jugular Eagle Syndrome.
I was in my mid to late 40’s when someone on a Facebook page suggested Ehlers-Danlos. I gave it the same eyeroll I gave the Tethered Cord; that can’t possibly be me. But then a highly respected geneticist in New York said it was.
Classic tethered cord is typically found in children. It’s common when babies are born with Spina Bifida (a childhood friend of mine has that. I never imagined our bodies would have this in common!) Kids present with difficulty walking, leg pain and bladder dysfunction.
Normally, the spinal cord floats freely within the spinal canal. A tethered cord is one which has adhered itself to the surrounding tissues and is stuck there. The cord hangs lower in the spinal canal than usual, and the filum terminale, the very end of the spinal cord, is attached via fatty tissue which acts like the secured end of a bungie cord. (I like to refer to this as my “prehensile tail” because it sounds way more cool.)
The medical field is still somewhat in its infancy in diagnosing adults who have Tethered Cord. We often feel a tugging at the base of our skulls, low back pain, have bladder and/or bowel dysfunction (like chronic constipation), leg pain and/or weakness, even toes curling,…it can all be a bit subtle. Dr. Creager even pointed out a small indentation on my right foot’s arch which could be a sign of TC. Here’s a “provocation” test you can do at home for some basic information: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7871268/?fbclid=IwAR3E05mlsBPX-q1q7so5gonqX9IMWeFChs-SaoVfRXLV8UfXGwa9UOZH0As_aem_ARdmO4RFL4jJREPNkfilE1S4Q7Ps-7y-tuBV61kl8T6_45-ZVnLbP7W5vxLrWGfOWkU3r7h809SPxbIPKioXSyGr
To make things more challenging, Tethered Cord can’t always be seen on imaging, even by the most experienced practitioners. This is referred to as “Occult” Tethered Cord. And this is why I was fully prepared for Dr. Klinge to tell me she’d seen nothing on my imaging, but based on some vague observation of my reported symptoms, she thought I might, just might have it. In which case I was ready to pack my things and stay home.
So, I was pretty surprised when, in the first minute of our appointment, Dr. Klinge, handed me some black and white photos. She’s a thin woman with a lilting German dialect, and she doesn’t seem to suffer from the usual surgeon personality. That is, she’s unafraid to throw around a little compassion and concern. “I can clearly see the filum, here,” she pointed out. When I told her other doctors haven’t seen it, she seemed genuinely surprised. Even more surprised when I described them as spinal specialists. “Well, to me, it’s quite obvious…I’m… sorry it was missed before.”
(Which led me naturally to the question, if ONLY Dr. Klinge can see Tethered Cord, then is it “Occult?” Since then, some fellow patients and I have settled on “Occult-ish.” )
After this pronouncement, Dr. Klinge proceeded to conduct a few neurological tests, which frankly seemed somewhat basic and random to me. She tested reflexes and declared that I’m hypo-reflexive in my upper body and hyper-reflexive in my lower, which supports the diagnosis. Then, while I sat on the examination table, she had me push against her with my lower legs. Now, Dr. Klinge is not a large woman. And she was seated on a stool with four fully functioning wheels between it and the floor. So, I was kind of focused on not flinging the woman across the room with my superhuman leg strength. But when we were done, she looked satisfied. One leg was definitely stronger than the other. Another supportive indication of tethered cord.
As I wandered back to my hotel in something of a daze, I was still inclined to doubt the diagnosis. But my mind kept returning to those black and white images. And I do have Tethered Cord symptoms – bladder, bowel and sexual dysfunction, low back pain, leg pain…not to mention a scoliotic curve, tugging at the occiputs, and how about that spinal imaging? All those degenerative changes? Could they all be due to hypermobility, alone? Could the bladder be explained by other things, like an autoimmune condition or mast cells? And lots of people have scoliosis. But the picture was being drawn, whether I wished to look at it or not.
For more information on Tethered Cord: https://rthm.com/articles/what-is-tethered-cord-syndrome/
Next: The Occult of the tethered Cord
P.S. Here’s a video I took with info about the Hotel Providence and other info about Providence and my appointment:
Niki Naeve 
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