Tethered Spinal Cord

General
1

Hello,

Has anyone heard of Tethered Spinal Cord and it's relation with CM-I?

There's an Institut in Barcelona that treats CM-I with a minimal invasive surgery where they do a sectioning of the filium terminale which supposedly prevents the disease to get worse and in most cases the tonsils tend to get back in their place.

Does anyone have information about this? or know someone who did this surgery?

Thanks,

João

2

Hiya
I don’t know of anyone else, but I am wondering if you have a scoliosis? I have read that the 3 can go hand in hand .

3

Hi,

I'm doing 4 MRI's and a RX to my entire spine to see what I have from top to bottom and then I'll send the exams to Barcelona. That's why I opened this subject on the forum.

4

Hi, I’ve just read the info on their site. It makes for interesting and possibly exciting reading ! .i am uk based so any treatment I’d b entitled to would be from the nhs. Obviously going it alone abroad would cost. I’m wondering how costly ? Do u have any idea ? It sounds so obvious that the whole Chiari thing could b caused by a downward pull by the spine. I also have a scoliosis which hasn’t really caused me any probs for the 32 yrs I’ve known its there apart from recently when its decided to give me pain. But then I never knew I had Chiari either and that’s only hit me hard in the last few months.looking back there have been increasing signs of it tho.so please keep me informed of your progress with this. And good luck ! X

5

Hi,

I'm going to do my exames in two weeks and then send them to Barcelona and wait. After they tell me if I can or can't do the surgery I will informe you.

6

I looked into this yest. From wot I can gather, tethered cord is different to the procedure in Barcelona. Its called filum terminale , which is cutting the cord that attaches the end of the spinal cord to the base of the spine. Tethered cord is where the actual spinal cord itself attatches to bones of the spine(that’s my understanding anyway) they feel that the downward movement of the brain is caused by the tension of a to short spinal cord.therefore by cutting the end it releases the tension. The brain rarely moves back upwards coz of developing under pressure in the 1st place. However releasing the pressure does allow csf and blood to flow properly again with lots of benefits. Most importantly that it stops Chiari progressing. You still have it afterwards but the symptoms are ment to b alleviated…or at least that’s how I understand it all ! Please do let me know how it all goes , v interested.