And…Trading Tethers?
For those who are here for the music, I have a fun thing I’m very excited to share – my first music video!
Ra ma da sa is a call to the elements of the sun, moon and earth for individual and universal healing. After that finally hit the charts (LOL,) I couldn’t help but envision a project using Colin’s uniquely beautiful landscape photos to amplify the message.
We are fortunate our talented friend, David Kreger, was willing to work on the project with us. It was fun because it was truly a three-way collaboration between the three of us.
I’ve never done a music video before. It was a scary and self-consciously squirmy project at times. Colin and I were both out of our elements – him with the capturing of video which is not a landscape, and me with the being in it. Yikes! But we relied on nature’s beauty and David’s editing skill to carry it.
I hope the result is something which helps this chant transcend via the senses, tapping the immense healing capacity deep within all of us, embracing the vast resources available to every creature anchored to this magnificent and energetically buzzing planet.
The full version will be released one week from today, on Friday, March 14, on the day of a full Blood Moon lunar eclipse! Here’s a preview. (I’m not sure if it will play video in your email, or if you’ll need to click on it to play):
Most the photography and video were taken by Colin D. Young. Video editing by David Kreger.
And for those who are here for the epically entertaining medical misadventures of Niki, without any further ado:
Trading Tethers?
Lying on my side, spread across three seats on a United flight from Boston to Denver two weeks after having my prehensile tail sheared, I tuned in to the deep hum of the engines and felt a torrential gush of relief. I admit a few tears of gratitude may have slid down my lowermost cheek. Part of this package of overwhelming emotion was the knowledge that so many people want to be assessed for tethered cord and don’t have access, yet I was somehow immensely fortunate enough to have it all – from diagnosis to surgery – and even covered by insurance! Part was gratitude for Colin and his unflappable care of me in these times. Part was an awareness of a culmination of many months of planning, hand-wringing and financial investment, finally coming to some sort of conclusion.
What got me, though, was the kindness of the flight attendants. I just couldn’t take it. They didn’t know why I’d booked three seats together (plus one for Colin across the aisle,) but they treated me like a first class passenger. (Or like royalty, in my mind.) They offered me extra blankets (extra blankets? When is the last time you were offered even one blanket on a flight? I once asked for one and they laughed at me!) “to smooth out the bumps between seats,” checked in with me regularly with sincere concern, and, of course, offered triple snacks. Because, after all, I’d paid for three seats! United flight attendants: Thank you! And…respect. I don’t know how you keep that face on while keeping us all safe in the air.
I always take Dramamine to fly, and it helps, but being upright I often still feel unwell. Being horizontal was a dream! Even in turbulence, I barely felt woozy. More gratitude. I thought of the many times I’ve felt much worse on flights, afraid I would puke and/or pass out, crazy worried about being embarrassed, and no one would know how to help me. Every time, all I needed was to lie down. I thought, there’s probably someone else on this very flight who has some medical issue and feels worse than I do right now. They are effectively invisible. It amazes me how people’s behavior changes when your issue is made evident, one way or another. If only some people knew how many others suffer in silence.
We had researched the exact location of the United gate at the airport and Colin dropped me there (with luggage I could easily roll) so I didn’t have to endure jostling on the rental return shuttle. It all felt surreal. Checking us both in, asking for and getting a wheelchair, riding along the smooth floors of the airport… it felt like everything moved oddly in time, and a little like I was already in the air.
I checked with other people who’d had this surgery and overwhelmingly they agreed: having three seats together was better than first class, because you can get fully horizontal. After this experience, I wholeheartedly agree. I admit it will be hard to go back to just the one.
I must apologize for how long it’s taken me to get to this part of the Tethered Cord journey. Many people have asked about how I’m doing, out of concern for me and because they’re considering TC surgery and are curious about what to expect.
The truth is, I wasn’t sure what to say. In recovery, it’s difficult to distinguish between a blip and a trend, downward and upward, and I didn’t want to report one as the other. And fact: everyone’s process will be different. Some people have more nausea, some more pain, some have immediate bladder relief, others none. Five percent re-tether. When you embark upon a major surgery, no matter your level or preparation, there’s always a certain amount that’s left to chance.
By some measures, recovery was surprisingly swift. Two days post surgery I was released, and rode with Colin to the laundromat and pharmacy. Riding in the car felt a bit rough, but doable, and I slept with only Ultram for pain management that night. On day three I walked down the block and used only Lidocaine Patches and Tylenol for pain. (Pro tip – sit on your Lidocaine patches before putting them on, to heat them up!) Later in the week I used Gabapentin some nights, and on that I slept like a log, in 12 hour stretches except for a few bathroom breaks (which were less frequently needed than I expected.)
By then I had already noticed my occipital region no longer tugs when I look down. That was weird. Like, I had thought everyone’s neck felt like it was attached to an anchor by a rope. It was delightfully loose. I did kind of wonder what was still holding my head on. Colin called me “Bobble head” because I kept playing with it.
Pretty soon I also noticed my ribs felt more loose than they ever have. I wondered if maybe the annual winter lung “thing” I treat with antibiotics and steroids will no longer be a “thing” for me, with all this room to breathe. (Spoiler alert – the following winter has now come about, and believe it or not, no lung thing so far!)
I was woozy and POTSy; on a pretty short leash for sitting upright in those first few days, and indeed (to a lesser extent) for months, afterwards. I had some nausea and ear-ringing. But five days post surgery I walked, very slowly, almost a mile, in a pretty place with a view of a lighthouse about a 20 minute drive from our Airbnb.
Post-surgery day 5, Colin’s cousin generously took a day off work and her kids out of school to come visit from Boston, and I sat up to talk with them for over an hour. She’s the school nurse, and to make the trip educational for her kids she asked me to explain my surgery to her elementary school aged boys. She also nurtured their sense of empathy and importance of family by encouraging them to give me gifts of their choosing to lift my spirits. I walked away richer by a mood ring, an earthy-looking bracelet and a vary ambitiously-sized lip balm, which smelled wonderful.
The following day, we made a pilgrimage to the local mall to find a place to charge our electric vehicle (our Airbn had a charger but it turned out to be incompatible with the car we rented) and have dinner at P.F. Chang’s. I was fine except for driving in circles around the parking garage, looking for the chargers. Hello, nausea. Later that week, Another friend came to visit from Brooklyn.
BLT: Not a yummy sandwich. For those new in the CSF leak/spine surgery world, “No BLT” refers to no bending, lifting or twisting. This is one of the most challenging aspects post-surgery, and the reason it’s much easier with a designated Person (capital “P” intended.) I can’t remember exactly how long I was supposed to adhere to no BLT – maybe six weeks?
Anyway, I checked in with my P.T. a few weeks after surgery and asked her to help clarify some of the “no BLT” recommendations. I told her I’d sometimes squat to avoid the “B” (bending) part of BLT, if I needed to reach something on the floor. Or if I found myself on my left side in bed and wanted a lip balm from the night stand on the right, I’d reach over and get it. Also, I wondered, is it OK to do dishes standing up, since it’s really not B, L, or T-ing?
She was like, um, nuh-uh. No. Squatting; F My I, squatting is also a provocative stance for the spine, not unlike bending or twisting. If you want something from the floor, use a reacher/grabber thingy (like the one pictured below.) The night stand; I need to log roll back over if I want that lip balm. As for standing a doing dishes, that’s OK for very short periods of time, basically as long as you can keep supporting it by strongly engaging your core, maybe a couple to few minutes. Basically, against all my tree-hugging instincts, when Colin left town I used just the top rack of the dishwasher.
Reacher/grabber thingy: https://www.amazon.com/dp/B07WRG21LX?ref_=ppx_hzsearch_conn_dt_b_fed_asin_title_1&th=1
Word up from other patients is that keeping faith with your “no BLT” is important for ideal healing. People have also mentioned that they think maybe they’ve re-tethered because they didn’t sufficiently control mast cells during their recovery. There’s little solid data on that, but since around 75% of Dr. Klinge’s tethered cord patients have some form of EDS, and mast cell activation seems to go hand-in-hand with EDS, if not act as a causative factor, it stands to reason we should pay attention to our mast cell proliferation.
As Dr. Maitland says, “The mast cells disrupt the collagen, the collagen disrupts the connective tissue, the connective tissue disrupts everything.”
A note about where we stayed; our Airbnb was near the corner of Smith Street and Oakland Avenue, in the Oakland Historic District, northwest of Providence. Providence college was a few blocks away, so there’s a fair amount of student housing around. It was all right. I’d avoided downtown because I feared it would be noisy, but we had a fair amount of street noise where we were and one very loud fight break out on the street, (involving someone taking a bat to someone’s car, I think?) So maybe downtown would have been more accessible for fun things for Colin to walk to, and about as noisy. I can’t say for sure. Overall we felt safe, and were very happy to have two couches, separate beds, a kitchen and a TV.
For those who want an actual blow-by-blow, in detail account of my surgical recovery, I’m going to put a link to my log in my Dropbox. (And in my experience, those links often break, so please feel free to contact me if you’d like access and the link doesn’t work.)
Over the next weeks and months….
There was a stich which spit out and needed to have some antibiotic cream put on it. Dr. Creager was very pro-active about checking my incision every weekly visit to P.T., even if I wasn’t her patient that day, because she has seen these things go south, fast. It’s possible that due to her diligence I avoided a major infection.
POTS, as promised, was quite exacerbated. And this attached itself to depression. CSF leak may also be a component. Months after surgery, I still had a hard time sitting up at my desk. Motivation was extremely low. I diagnosed myself with “Post-surgical depression” and started treatment with a psychologist, then a psychiatrist.
There was a fair amount of G.I. trouble, which I eventually treated as SIBO. I assume all the antibiotics I was pumped with during surgery altered the gut balance. Other patients I spoke with reported SIBO as a common occurrence during recovery.
My bladder never truly improved, or maybe a little. It seemed like at first I might be getting up less at night, and that may still be true, but at the same time I seem to have a bit more hesitancy. So it’s about a wash.
Months after surgery, low back weakness was still the limiting factor in walking more than about a half mile at a normal pace. That was disappointing, but eventually resolved. Still, I spent much of this past year simply resenting any movement which caused any stress on my lower back – leaning over to pick something up on my night stand, picking up something from the floor, even leaning over slight to do the dishes made me just disproportionately…mad.
We think I grew about ¼ inch taller – we’re not sure. If you’re considering tethered cord surgery, I highly recommend measuring yourself some time beforehand, (in the morning and evening, because your height can change over the course of the day.) That would have helped settle this question!
If bladder issues are a concern, I’d also recommend keeping a bladder diary, so you can compare pre and post surgical behavior. Again, I failed on this front.
The biggest lingering issue in recovery eventually became two spots on my back to each side of about T11-12, which felt like cables attached to their corresponding S.I. joints (on either side of the sacrum.) At the top end, these spots corresponded pretty well to the ones which felt like they had bowling balls hanging from them in the days in hospital.
It kind of felt like I traded in one long tether one for two shorter ones! Wait…did I just Trade Tethers?
The most frustrating thing about these nasty little spots was they physically kept me from slouching. On long car rides, I sometimes rest by putting my knees on the glove box and sliding down in the seat. Not possible. Child Pose? I could creep down most of the way into it, very slowly, but then just had to stop. Squatting? Weird and uncomfortable. Felt like someone was physically sticking their thumbs into my back.
Having been hypermobile my whole life, I am absolutely not used to this kind of restriction. And I’ve discovered I actually really need that slouch at times, in order to get blood to my head and mitigate nausea. And sometimes I just wanted to be a proper couch potato, but by back was not having it!
About seven months post surgery, I saw a chiropractor who I usually see only for his functional medicine expertise. He offered to try adjusting me and at first I demurred, knowing EDSers are warned away from anything but the most gentle chiropractic care. But he assured me he’d be careful, and had a particular image in his mind as to what was happening. I laid on my back, and he cupped one hand under the T11-12 part of my spine and pushed the rest of my body down with his. I felt and heard a shift, and it felt …a little less stuck.
Over the next weeks, between self- adjusting, two adjustments at the chiropractor’s and more with my P.T., I felt the first softening of these “alternate tethers.” It would take several more months, but eventually they would release their hold on the S.I. joints and creep, ever so slowly upward, until I felt like only about a half inch of space was stuck. Then…at about eight months…finally, almost nothing.
If I ever want to seriously sing opera again, I will have to do some serious re-building of those lower back muscles. They still get tired. But for every day use (walking and kirtan singing!) they’re now fine. I’m fine!
I’d say overall, I feel a bit looser in the neck and chest than before surgery, and so far seem to have less lung irritation. Bladder function is about the same, in the aggregate. Bowel is better, but I think that’s due to the addition of a supplement called ColonMax, to my daily pill regime.
I still do struggle with fatigue and depression; I need at least 10-12 hours of sleep per day in order to function for a few hours, after which I’m grounded once again by pain and fatigue. I’ve considered whether anesthesia might be building up in my brain and exacerbating these things, and that may be true, but now I’m undergoing a diagnostic procedure for CSF leak. There’s a very strong connection between fatigue, depression and CSF leak, and a very strong postural component to my symptoms, so consideration for CSF leak is strong. I don’t think TC surgery caused this, as it’s been ongoing for decades. More on that, later.
Dr. Klinge’s team says that, on the whole, their patients tend to feel their most recovered at about the 1-year mark. There may be gains yet to come!
So, that’s the summary. I’m keeping in mind that we may never know if the main goal of the surgery was fulfilled, which was to slow down spinal degeneration, (which was probably caused in part by the tension the tethered cord put on the structure.) Since I don’t have another me laying around to not have TC surgery and compare, we’ll never know for sure.
I do feel confident there was some gain, and with any luck, 75 year old me will be grateful I did it!
Niki Naeve 
Leave a reply to Colin Young Cancel reply