Hello. This was really informative. I'm a 47 year old Native American and I may have a tethered cord. I really don't know where to start the process. I'm glad to find this video...I may watch it again.
I was born with spinafida occulta and a tethered spinal cord. Even though I had it at birth, the doctor told my mother it would resolve itself. (1950). Long story short, I was not diagnosed until age 65! By then, it had done so much damage to my body, mostly legs, back, bowel, and bladder. Had surgery in 2016. Some issues were resolved, others did not. My drop foot did not.
La section du filum terminal diminue la tension dans la moelle épinière (néanmoins celle-ci reste bien fixée par les ligaments dentelés). Cette légère diminution de tension permet peut-être que le foramen de Magendie se réouvre permettant au LCR de circuler à nouveau et de voir la réapparition de la grande citerne.
I would like to know more about acquired TCS through injury or infection. It is mentioned in the literature but I cannot find specifics like did the person always have asymptomatic TCS and then experienced an injury or illness that then caused thickened/tightened filum or even tethering?
I guess Im randomly asking but does anybody know of a tool to get back into an Instagram account..? I was stupid forgot the password. I would love any tips you can offer me!
@Ben Prince thanks for your reply. I got to the site on google and im waiting for the hacking stuff atm. Takes a while so I will reply here later when my account password hopefully is recovered.
My name is Eva, I am a Samoan/Maori 17 year old with a condition called Cloacal Exstrophy. I was diagnosed with Sensitization Syndrome in 2017 when I presented with pain initially in my right thigh then it progressed to my left groin. They suggested a tough love regime where my parents, teachers and health care providers made me move and exercise despite how much pain I presented . For 4 years I was tortured until my Dad couldn't take it anymore and in desperation contacted the hospital who got angry and dropped us from the pain team. We requested the hospital records and was shocked to see that they had attributed a behavioral component to my symptom's. They have me listed as a Bladder Exstrophy and said the pain is because of my medical history however I only had the one surgery after birth and never suffered pain before. As it turns out I have all the symptoms of a tethered cord. 100% of Cloacal Exstrophies have occult spinal dysraphism. However when I finally got to see the hospital neurosurgeon for the first time in my life last year he told Dad that that not true. The hospital has destroyed my life and my family. And we continue to get denied care at Starship hospital who have become increasingly hostile. The lawyer contacted me today and said I am dropped from childrens and have to go to adult My weight is down to 2-5% of average. I'm the only Cloacal Exstrophy in the world where no attempt has been made to make me continent. Or fix a widening pubic synapsis. And a tethered cord. I'm the only Cloacal Exstrophy in New Zealand. And I just found out that 90% of my large bowel is gone. My original Pediatric surgeon hasn't bothered passing that on to anyone. And the hospital doesn't believe me even though I showed them the original surgery notes. I just got turned down for colorectal input. I've been on an adult waiting list for bladder surgery for 7 years as they said that its an elective surgery. And I've had no orthopedic, urology or colorectal input as a Cloacal exstrophy. Its a miserable existence and hugely stressful for my whanau. The pain deep into my groin is constant now and debilitating. Both my feet are numb. And my bladder has disappeared on the MRI. My body is bent and they said that one of my legs is shorter than the other. I never had that before I was 10. If anyone knows where I can get my cord untethered then please give me a cost and Dad said he would ask his Iwi (tribe Tainui) and Mom can get the Samoan church to help raise the money. Plus our Island community where I live (Waiheke Island). Once we have the Cloacal Exstrophy international community telling the doctors here in New Zealand about this condition than I can raise the money very quickly I think. Dads number is 64 027 225 1459 And Dad reminded me that Apart from the 100% OSD for Cloacal Exstrophies I have Cutaneous markers, Cafe au lats, talipes toe, haemangiomata on forehead (removed), anorectal malformation, urogenital sinus, Urogenic dysfunction. Spinal abnormalities. Right shoulder radiographically higher than the left. Significant kyphosis . Some spinal bifida. Scoliosis, leg length discrepancy. And there is a syrinx in the cervical and lower thoracic areas of my cord
Urinary frequency, nighttime urinary frequency, insufficient bladder emptying, Postural Orthostatic Tachycardia Syndrome, Dysautonomia, Dystonia, double vision, fuzzy vision, non-epileptic seizures, spasicity, sharp shooting electrical pain in arms and legs, weakness, Scoliosis, hEDS, chest pain, tachycardia, heart fluttering, gasping, hiccups, spasms, deviated uvula, mild to moderate disc degeneration, sensory processing disorder, high functioning autism and 'superior' intelligence (tested by psychologist) in cranial cervical instability (?), leg weakness and more symptoms in my 21 year-old daughter. Thinking to start with a visit to see this doctor, rather than someone to strengthen ligaments in the neck...possibly the foundation is the problem which is causing pressure at C1-C2. L-2-L3; L-3-L-4 are dessicated. Im not sure all the terminology is correct or my remembering of the mri terms. She has done physical therapy, but when the pt doctor pressed on her mid back when there is a twist in her spine, it caused a full day of episodes (POTS-like weakness, then non-epileptic seizures that she let make her pass out...if she rearranges her head to a central position as the seizures weaken, she stays conscious and the seizures contiine. When she doesn't pull her head back to neutral, she passes out and the seizures stop.) She also has muscle twisting and passes out in her sleep, waking up feeling exhausted, blue lips, weak. Sometimes she has to try to waken herself up to 4 or more times.
I am not a baby I am 39 an non chiari I have a tethered spinal cord and am I searching for pain relief at this point ill to anything ! I have been highly against opiates for many many years now n have self medicated w marijuana instead I waw given very lil Info on it when I was diagnosed and jus been trying but its taking a toll on my quality of life n Im missing out on a lot I need help a push in right direction anything
I'm 32 and I found out I have tethered cord in an mri. My leg atrophied to nothing. My pain is constant. I see a neurosurgeon soon, but I have other spina bifida complications. I cry. My mental state is deteriorating faster than my physical state. I feel for you so much
She is such a nice person 🥰
Dr. Klinge is a genius.
She was my surgeon! 😊
Hello. This was really informative. I'm a 47 year old Native American and I may have a tethered cord. I really don't know where to start the process. I'm glad to find this video...I may watch it again.
A neurologist appt is the 1st step
My son had surgery with Dr. Klinge and she is a miracle worker. If you haven’t found your neurosurgeon, see if you wan book an appointment with her.
I was born with spinafida occulta and a tethered spinal cord. Even though I had it at birth, the doctor told my mother it would resolve itself. (1950). Long story short, I was not diagnosed until age 65! By then, it had done so much damage to my body, mostly legs, back, bowel, and bladder. Had surgery in 2016. Some issues were resolved, others did not. My drop foot did not.
Lately I'm extremely sensitive to light & sound. is that natural with TC issues?
La section du filum terminal diminue la tension dans la moelle épinière (néanmoins celle-ci reste bien fixée par les ligaments dentelés). Cette légère diminution de tension permet peut-être que le foramen de Magendie se réouvre permettant au LCR de circuler à nouveau et de voir la réapparition de la grande citerne.
I would like to know more about acquired TCS through injury or infection. It is mentioned in the literature but I cannot find specifics like did the person always have asymptomatic TCS and then experienced an injury or illness that then caused thickened/tightened filum or even tethering?
I guess Im randomly asking but does anybody know of a tool to get back into an Instagram account..?
I was stupid forgot the password. I would love any tips you can offer me!
@Tristian Parker instablaster =)
@Ben Prince thanks for your reply. I got to the site on google and im waiting for the hacking stuff atm.
Takes a while so I will reply here later when my account password hopefully is recovered.
@Ben Prince it worked and I now got access to my account again. I am so happy!
Thank you so much you saved my account !
@Tristian Parker no problem :)
Hi- at the end of the video it mentions emailing her staff for a second opinion. Do you have that contact information?
I’ve been trying for years, she isn’t practicing right now, she was my surgeon in 2013
She is is still practicing
My name is Eva, I am a Samoan/Maori 17 year old with a condition called Cloacal Exstrophy. I was diagnosed with Sensitization Syndrome in 2017 when I presented with pain initially in my right thigh then it progressed to my left groin. They suggested a tough love regime where my parents, teachers and health care providers made me move and exercise despite how much pain I presented . For 4 years I was tortured until my Dad couldn't take it anymore and in desperation contacted the hospital who got angry and dropped us from the pain team. We requested the hospital records and was shocked to see that they had attributed a behavioral component to my symptom's. They have me listed as a Bladder Exstrophy and said the pain is because of my medical history however I only had the one surgery after birth and never suffered pain before. As it turns out I have all the symptoms of a tethered cord. 100% of Cloacal Exstrophies have occult spinal dysraphism. However when I finally got to see the hospital neurosurgeon for the first time in my life last year he told Dad that that not true.
The hospital has destroyed my life and my family. And we continue to get denied care at Starship hospital who have become increasingly hostile. The lawyer contacted me today and said I am dropped from childrens and have to go to adult
My weight is down to 2-5% of average. I'm the only Cloacal Exstrophy in the world where no attempt has been made to make me continent. Or fix a widening pubic synapsis. And a tethered cord. I'm the only Cloacal Exstrophy in New Zealand.
And I just found out that 90% of my large bowel is gone. My original Pediatric surgeon hasn't bothered passing that on to anyone. And the hospital doesn't believe me even though I showed them the original surgery notes. I just got turned down for colorectal input. I've been on an adult waiting list for bladder surgery for 7 years as they said that its an elective surgery. And I've had no orthopedic, urology or colorectal input as a Cloacal exstrophy.
Its a miserable existence and hugely stressful for my whanau. The pain deep into my groin is constant now and debilitating. Both my feet are numb. And my bladder has disappeared on the MRI. My body is bent and they said that one of my legs is shorter than the other. I never had that before I was 10. If anyone knows where I can get my cord untethered then please give me a cost and Dad said he would ask his Iwi (tribe Tainui) and Mom can get the Samoan church to help raise the money. Plus our Island community where I live (Waiheke Island). Once we have the Cloacal Exstrophy international community telling the doctors here in New Zealand about this condition than I can raise the money very quickly I think. Dads number is 64 027 225 1459
And Dad reminded me that Apart from the 100% OSD for Cloacal Exstrophies I have Cutaneous markers, Cafe au lats, talipes toe, haemangiomata on forehead (removed), anorectal malformation, urogenital sinus, Urogenic dysfunction.
Spinal abnormalities. Right shoulder radiographically higher than the left. Significant kyphosis . Some spinal bifida. Scoliosis, leg length discrepancy.
And there is a syrinx in the cervical and lower thoracic areas of my cord
Omg this is TERRIBLE they psychosomatized me too! Criminal!!!
Urinary frequency, nighttime urinary frequency, insufficient bladder emptying, Postural Orthostatic Tachycardia Syndrome, Dysautonomia, Dystonia, double vision, fuzzy vision, non-epileptic seizures, spasicity, sharp shooting electrical pain in arms and legs, weakness, Scoliosis, hEDS, chest pain, tachycardia, heart fluttering, gasping, hiccups, spasms, deviated uvula, mild to moderate disc degeneration, sensory processing disorder, high functioning autism and 'superior' intelligence (tested by psychologist) in cranial cervical instability (?), leg weakness and more symptoms in my 21 year-old daughter. Thinking to start with a visit to see this doctor, rather than someone to strengthen ligaments in the neck...possibly the foundation is the problem which is causing pressure at C1-C2. L-2-L3; L-3-L-4 are dessicated. Im not sure all the terminology is correct or my remembering of the mri terms. She has done physical therapy, but when the pt doctor pressed on her mid back when there is a twist in her spine, it caused a full day of episodes (POTS-like weakness, then non-epileptic seizures that she let make her pass out...if she rearranges her head to a central position as the seizures weaken, she stays conscious and the seizures contiine. When she doesn't pull her head back to neutral, she passes out and the seizures stop.) She also has muscle twisting and passes out in her sleep, waking up feeling exhausted, blue lips, weak. Sometimes she has to try to waken herself up to 4 or more times.
Does anyone know why Klinge stopped practicing in USA?!? She was my surgeon and I need her help but she’s just… gone.
Hmmm, she was my surgeon 4 days ago
@@BroedyOliver yes i actually ended up getting back i with her, she had taken time off last year and was out of the country.
@@BroedyOliverso she is back now?
I am not a baby I am 39 an non chiari I have a tethered spinal cord and am I searching for pain relief at this point ill to anything ! I have been highly against opiates for many many years now n have self medicated w marijuana instead I waw given very lil Info on it when I was diagnosed and jus been trying but its taking a toll on my quality of life n Im missing out on a lot I need help a push in right direction anything
I'm 32 and I found out I have tethered cord in an mri. My leg atrophied to nothing. My pain is constant. I see a neurosurgeon soon, but I have other spina bifida complications. I cry. My mental state is deteriorating faster than my physical state. I feel for you so much