Tethered Spinal Cord Syndrome

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Curating Resources for Tethered Cord Surgery Patients, Parents/Guardians, and Spouses

I'm collaborating with Dr. Petra Klinge of Rhode Island and her staff to develop helpful resources that can be shared with children, their parents/guardians, patients and their spouses. The link to the survey better describes the purpose and intent of data collecting. I hope you'll consider helping me curate resources for our little zebras, their families and other patients undergoing tethered cord surgery!

Tethered Cord Syndrome Surgery - Survey for Patients, Parent...

#TetheredSpinalCordSyndrome #EhlersDanlosSyndrome

Tethered Cord Syndrome Surgery - Survey for Patients, Parents/Guardians and Spouses

If you are a previous patient, caregiver and/or guardian who has undergone the surgical procedure for tethered cord syndrome (TCS) at Hasbro Children's Hospital, with services provided by Dr. Petra Klinge, we'd appreciate your feedback! I'm collaborating with Dr. Klinge and her medical staff to better prepare families who will be staying at and going through TCS surgery at Hasbro Children's Hospital. Your personal information will not be shared with anyone; your email is being collected so that, should we have any follow up questions to the answers you provide, we can reach out for clarification. Your responses will help guide the development of new materials and resources for children, their guardians and others who will be having their TCS corrected via surgery by Dr. Klinge. Thank you for your support! Shaina Smith Ehlers-Danlos Syndrome advocate, patient and mom
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I’m new here!

Hi, my name is victorymightylovable. I'm here because
I'm tired of trying to explain to people my diagnoses and how they affect me, even though I look all right.
#MightyTogether #Anxiety #Depression #Migraine #TetheredSpinalCordSyndrome

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1 Week Post-op #EhlersDanlosSyndrome

I had my Tethered Cord Surgery on September 14th. It is both better and worse post-op than I expected. The hospital experience was hellishly painful, but since arriving home, I’m moving around better than I expected. I am more fatigued and more in pain than I remember being after my C1-C2 fusion (although almost 3 years might have softened the memory). Bowel and bladder seem better, but I am concerned with some heaviness in my legs and some discomfort in my hips like that pre-surgery. The real test for my walking will be leaving the house for my follow-up with my neurosurgeon. For those who have also had tethered cord release surgery: how did it improve your symptoms and how soon did you notice improvement? Did it take a while for the full effect to be seen? I know that there was always the chance of some of the neurological symptoms becoming permanent, but I hope that this is not the case here. I’d welcome any input/ would appreciate hearing your experience with tethered cord release surgery; I believe my was L5-S1 and I had an occult tethered cord, if that helps. God bless… #EhlersDanlosSyndrome #tetheredcordreleasesurgery tetheredciresurgery #laminectomy


I’m new here!

Hi, I’m new here, I’m Samantha from RareResilience where I share my journey with chronic and rare conditions, my fight for survival & justice and I also advocate for others in similar circumstances. I’m a senior psychotherapist and Psychology major, with additional training in healthcare, SEN, functional medicine & nutrition.
I’m here to meet likeminded people, to share my writing & journaling & to connect … connection is what we all need I think 💖💪🏼
#MightyTogether #ehlers-DanlosSyndrome #Dysautonomia #Dystonia #PelvicOrganProlapse #TetheredSpinalCordSyndrome #Scoliosis #PTSD #complexpost-traumaticStressDisorder #Anxiety #Grief #RareDisease

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newbie here 👋 #EhlersDanlosSyndrome #TetheredSpinalCordSyndrome #MastCellActivationDisorder #Dysautonomia

heyo- just putting myself out here !
hopefully I can meet some others with similar conditions (^:
looking forward 2 reading y'alls stories


Back to school #Parenting #TetheredSpinalCordSyndrome

Thoughts on going back to school ? I asked my daughter to comment on the pro and cons. "So far, my back to school experience has been virtual, as most of the schools are. Its been challenging, but intriguing to find out how to use different apps, and technologies so that I can continue school virtually. This virtual school actually makes it a lot easier for me personally. I honestly prefer virtual learning, other than the fact that I don't see my friends. Since going virtual, it helps a lot with my pain, since I can sit at the comfort of my home without having to climb stairs or walk from and to different classes. Another helpful part of virtual learning for me is how I have so much flexibility to attend my physical therapy and laser therapy. This is mostly why I love taking part in virtual learning! as frustrating as it may be, the best this I can do is stay virtual to keep myself and everybody else safe". I think that having the option of virtual is a good option for a kid with a medical condition.