Hi.
Just to comment on the Barcelona Clinic. I wrote to them a few months ago. It was in connection with Chiari.
The reply I got made it sound too easy. They likened the operation to extracting a wisdom tooth. I just felt that if this precedure was so good we would have heard more about it.
I haven't heard anything bad about them. But again... I just think we would have heard a lot more if it were so good.
Jackie.
Hi and welcome, glad you found the forum, Sorry to hear your diagnosis of a syrinx cavity and it sounds like tethered cord? If you are going to have surgery on you fillum terminale, then you much have tethered cord and that is most likely the cause of your numbness and you syrinx. Does this sound similar to what the doctor have said to you?
I am confused my they way it is wrote as being at D10 I believe this is meant to be T-10 for thoracic spine. you have Cervical, thoracic, lumbar, sacrum, coccyx. those are the sections that make up the spine,, the term dorsal is a medical term doctors use to describe where something is in your body such ad interior /posterior , "the dorsal aspect of the anterior structure" that type of thing. Is this making sense to you? these things can be very confusing.
Wiki definition
In human neuroanatomy, once you reach the forebrain, dorsal is equivalent to superior and ventral is equivalent to inferior.
Nerve rootlets stemming from the spinal cord (CNS) form dorsal (sensory) and ventral (motor) roots before these unite to form the spinal nerve (PNS).
I think you need to sit down with a nurse or the NS and discuss these thing with then so you understand better what is going on, they need to try and explain things in a way you can understand, the surgeries carry a lot of risks and these conditions can give you a lot of physical restrictions, you need to be as informed as possible in all aspects of your condition, you must be your own advocate.
You should start getting copies of you medical history and tests like mri's on disk and doctor visit records so that if you seek care in different places later on, you will have all that stuff handy for them to have access to. If you do not inform new doctors, sometimes things can get missed, but if you make sure it is all there, mistakes like that will not happen.
Please keep us updated on our condition, I am here if you ever need any help understanding anything, I will try my best to help you understand I know that that can be the scariest part of all this. Take care and hope you post again soon. Stacey
Hello
Thank you for your answer.
I didn´t have a brain MRI but I had a cervical one and the doctor told me I did´'t seem to have anything associated with that syrinx!
For me it´s really confusing because of the location of the syrinx, wich is near D10 on the dorsal spine.
I have been looking up for possible surgical treatment and I've seen some options (I don't know if they are all indicated for syringomyelia) and after seing a doctor he told me that this could also be Terminal Ventricle (wich I can't get much information about) and that there is no way to know. That made me so confused... Don't you know if there's a way to make an accurate diagnosis?
I didn't have any big trauma that I can remember so I don't think it's trauma caused. I don´t have a tumour as well.
I do, however, have a numbness on my right leg, wich made me do all the exams...
By the way, I don´t know if you have any information about an istitute especialized in chiari and syringomyelia in Barcelona. They are trying a less invasive approach with a surgery on the fillum terminale. I just wanted to know if someone has had some kind of experience with them and what was they're opinion.
Thank you for all the help
Di
Hi and welcome to the Chiari/syringomyelia forum.
Form most syrinx's...they can be too small to do much about...shunts and stents may not be an option....so for those with bot chiari and a syrinx the chiari PFD surgery is done to help restore CSF flow in hopes that the syrinx will shrink...and many times they do.
Have u had a Brain MRI as well?...do u know if u have chiari also?
Were u in a MVA that this cyst or syrinx could be the result of an injury? In that case u may not have chiari and then options will be even more limited.
I do have an article on shunts in my profile page...please feel free to read it.
"selma"