Tethered spinal cord advice and statementing advice welcome!

[highbury]

Does anyone have experience or knowledge of tethered spinal cord? A recent MRI scan shows my 3 year old daughter has a tethered spinal cord, we are awaiting referral to neurosurgery to discuss surgery options. Also any advice on how best to ensure successful outcome for statutory assessmetn for statement of special educational needs welcome. Our daughters also has developmental delay for motor skills of 1 year, 1 year speech & language delay, hypomobility and hypotonia and presents as child with mild cerebal palsy (e.g fisting of hand, retracting of arm, balance and co-ordination issues, w-sitting). We are currently going through statutory assessment for SN.

I know nothing about the actual diagnosis your dd has, but I assume you are getting OT, physio and portage?

Yes we get physio and speech & language therepy. Used to get portage but not anymore.

Hi there.

My eldest daughter (now 7y) was born with a tethered spinal cord but luckily it was diagnosed when she was a month old and she had immediate surgery at Great Ormond Street. She had quite intensive monitoring at GOS until she was about 18 months old, then six monthly and now it is just yearly. The main tests she has now are regular ultrasounds of her kidneys and bladder and assessments of her bladder function. She has only had a few hiccups along the way with regard to bladder function, and everything seems to be developing normally now.

She had physio locally, special Piedro boots and now just needs insoles in her shoes. Her left leg remains slightly weak, but not so that you would really notice.

With regard to statementing, my youngest daughter has Down syndrome, so we have been through statementing for her. My main advice would be to keep on the LEA's case, don't let them fob you off at any stage and get in touch with either IPSEA or SOS!SEN (if you are in London or the surrounding area). They will take you through the process and support you. IPSEA has a helpful website. If you have more specific questions re statementing, ask away, or maybe post a specific thread.

Sorry this has ended up long!!

My daughter is now 5 and had a tethered cord. She had it operated on just over a year ago. The op was long but ok, worst part being she had to stay flat for 5 days afterwards.
It improved her balance no end, she can now jump, hop and pedal a bike which she couldn't do before. Her legs are still a bit weak at the pedalling though but she's nifty on her scooter now! I also make sure she does as much physical exercise as possible, walking, dancing lessons etc as it all helps.
The only thing the op did not do was improve her continence. She is doubly incontinent and has intermittent catheters 6 times a day. She didn't have any extra help at school in reception so I had to go in 4 times a day but got audit funding for yr1 and now has a lovely 1to1 everyday from 930 til 230. You have to really fight for help, but you know your child better than anyone so know what help she will need. Luckily my DD didn't need statementing as our local school is a church school and hubby is a vicar. Good luck with everything. Contact me if you want any more advice.

Can I ask what symptoms your daughter displayed prior to op? Our daughter has poor balance & co-ordination and inabilty to jump, hop, pedal bike etc...but not sure if this is connected to tethered cord or not.

Our daughter is currently in nappies, showing no awarness for potty training. But as she's still in nappies we don't know if she is incontinent...did you just find out when your daughter wasn't able to potty train?

Obviously your neurosurgons advised to go through with surgery sooner rather than leaving to see if condition deterioriated. What questions do you think we should ask about wheather to do surgery now or leave?

How long did your daughter take off nursery/school to recover from the op?

I had a tethered spinal cord but I was one of those rare cases that wasn't picked up until adulthood (I was 30). I'd had symptoms since childhood but doctors dismissed them and I decided I must be making a fuss over nothing so didn't tell anyone until I eventually became overwhelmed with pain and lost use of my legs.

I had my surgery 18 months ago and despite some rare and nasty complications I have recovered a lot of what I had lost, I still have continence issues but sooooo much less pain and I can use my legs nearly normally.

As far as I know the earlier you can have the surgery the better the results are likely to be but unfortunately for some people the scar tissue can cause re-tethering.

Some places check routinely but some don't, has she had a had MRI to check for the related condition Chiari Malformation? That can cause some of the other symptoms you describe.

Hi again,
Our daughters was picked up because shortly after birth she developed a large birthmark at the base of her spine which didn't diminish. Her dermatologist refered us and I will be forever grateful to him. She then had an mri on her 1st birthday which showed the tethering. She also had a large area in he cord which had fluid in which needed to be drained. We were told then that her birthmark would need to diminish before surgery could take place as she would hemmorage otherwise. The neuro surgeon said he wanted to do the op before she got too old as if she started to loose function in her legs it would be very difficult to get it back.
The symptoms she displayed were; right foot turning in and over slightly, (outside top of shoe was always wearing away) couldn't jump, hop, pedal, scoot and poor balance.
She walked at 9 months and was always charging around but her right leg used to suddenly give way (more so if she was tired) and she'd fall right over. I just thought she was slow at the jumping thing until my GP said it was a symptom.
Since the op her foot still turns in but not over, and she only trips if she is really tired out. I guess to most people she would appear to be clumsy.
With the potty training thing I guessed early on that she couldn't do it. She is very bright, and kept taking her nappy off so we tried pants. She knew just what was expected but just had no notion of when she needed to go until she had already done it.
After the op she stayed in for 12 days but that was mainly to sort catheters out as since the op she has been unable to fully empty herself. She then had a week off pre-school after that. She did have to wear a neoprane support belt for 6 weeks after which went from the top of her bottom to just under her boobs. She was really good about it but I knew she hated it and it really itched sometimes.
Given your daughter is displaying signs of weakness already, I would imagine surgery sooner rather than later would be best but obviously I don't know her. I think at this age children bounce back very quickly, and obviously you don't need to worry about her missing school yet. I beleive I am right in saying that a high percentage of cords will re-tether. Certainly they are expecting our daughter to need the op at least once more before she stops growing. Her last MRI showed 'gradual but not significant changes' this was a year on from the op. I haven't had a conultant apt through yet to ask exactly what this means...but I'm guessing it is slowly starting to re-attatch. For us its just a case of keeping an eye on her and if things start to get worse again then we need to contact her surgeon. She has 6 monthly apt with neurology, and 3 monthly with urology. We also have a urologist nurse who comes to see us and visits my daughter in school and trains her carers etc.
Hope this helps, sorry for the immensley long post!