If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.
Find out how to let us know if you're concerned about another member's safety.
Find out how to let us know if you're concerned about another member's safety.
Teethered Chord
jlhogan22
Community member Posts: 1 Listener
I joined this forum seeing that there were some posts in regards to their childs tethered chord. My daughter is now 5 years old and was diagnosed with a tethered chord about 1 year ago. She has a deep sacral dimple, which lead us to get an MRI and was then diagnosed with a tethered chord. we have been seeing a Specialist and going to Lurie Children's in Chicago for yearly testing. She struggles with constipation and has had 3 UTI's in the past 3 years, other than that she's great. I am wondering if anyone knows of any other Specialist in the Chicaogland area outside of Lurie Children's that they would recommend? We are looking for another resource to help with the Uro test she needs with the cath, because I am not happy with how Lurie's does it. They want to put her under General Anesthesia in one location, then wake and have us transport her to the other location with Cath in to conduct urine test. That is not going to work, she will freak out. Need to do this all in one location. Any insight or specialist recommendations would be much appreciated!
Comments
-
Hi @jlhogan22 & welcome to the community.I'm sorry your little girl is going through so much. Has surgery been mentioned to free her tethered cord, & would you consider going to New York? I know a neurosurgeon there who treats this & a related condition (which affects our family). As far as conditions in which tethered cord can co-exist go, he is a world-renowned expert in this field, having pioneered techniques to enable more effective surgery, as well as minimally invasive surgery.About 2 years ago he had operated on over 300 patients with a tethered cord. Please let me know if you would like to know more.
-
jlhogan22 said:I joined this forum seeing that there were some posts in regards to their childs tethered chord. My daughter is now 5 years old and was diagnosed with a tethered chord about 1 year ago. She has a deep sacral dimple, which lead us to get an MRI and was then diagnosed with a tethered chord. we have been seeing a Specialist and going to Lurie Children's in Chicago for yearly testing. She struggles with constipation and has had 3 UTI's in the past 3 years, other than that she's great. I am wondering if anyone knows of any other Specialist in the Chicaogland area outside of Lurie Children's that they would recommend? We are looking for another resource to help with the Uro test she needs with the cath, because I am not happy with how Lurie's does it. They want to put her under General Anesthesia in one location, then wake and have us transport her to the other location with Cath in to conduct urine test. That is not going to work, she will freak out. Need to do this all in one location. Any insight or specialist recommendations would be much appreciated!
-
Hi @jlhogan22. How are you getting on? Did you manage to find another specialist for your daughter?Community Manager
Scope
Brightness
Categories
- All Categories
- 13.3K Start here and say hello!
- 7K Coffee lounge
- 101 Games lounge
- 483 Cost of living
- 4.6K Disability rights and campaigning
- 1.9K Research and opportunities
- 230 Community updates
- 9.6K Talk about your situation
- 2.1K Children, parents, and families
- 1.6K Work and employment
- 807 Education
- 1.7K Housing and independent living
- 1.4K Aids, adaptations, and equipment
- 666 Dating, sex, and relationships
- 374 Exercise and accessible facilities
- 845 Transport and travel
- 32K Talk about money
- 4.6K Benefits and financial support
- 5.2K Employment and Support Allowance (ESA)
- 17.2K PIP, DLA, and AA
- 5K Universal Credit (UC)
- 6.4K Talk about your impairment
- 1.8K Cerebral palsy
- 886 Chronic pain and pain management
- 183 Physical and neurological impairments
- 1.1K Autism and neurodiversity
- 1.3K Mental health and wellbeing
- 328 Sensory impairments
- 832 Rare, invisible, and undiagnosed conditions
Complete our feedback form and tell us how we can make the community better.