Length of the syrinx

[marymac]

Hi Ho All

How long is your syrinx? I am very interested in this: mine goes from C-3 all the way down: conus - to the butt. Thought I read an article that said very few, if any, people have a syrinx this long: true or false? I'll believe my friends here over almost anybody. I know it's been s l o w, but maybe we can pick it up.

Hope everyone is as comfy as can be and warm. Feel guilty writing in my nightgown while on the porch. . . Have the best day you can.
Smiles & sunshine

[razzle]

t 4 -m t10 thorastic area

[syrinx48]

Hi Marymac,

My syrinx runs also from C4 down to the conus. It starts as a syringohydromyelia then at T1 it becomes wider until at its width is 5mm at T8. Then it runs until the conus as a syringohydromyelia. That is why most of the NS say that my syrinx is thoracic, but in fact runs all the way down.
It grew that way slowly. I was diagnosed in 2005. Now after several years it becomes larger, also at the thoracic part ( by diagnosis T6)

Annemarie

[kristinanneb]

Mine runs C6 - T12. It is long and skinny and then gets wider from T2 - T8 with its widest part at 6mm at T6. I was diagnosed in 2001 and had been relatively stable with my symptoms (mostly pain) until this year. In this last year I have had increasing spasticity in my legs which is starting to make it difficult to walk (not to mention sit or lay down ). My syrinx is idiopathic - no chiari, no trauma. I personally suspect tight filum but there is nothing visible on MRI poiting in that direction.

Best,
Kristin

[Andrea]

Mine was the whole length as well. Fortunately bc of my shunt it has collapsed! (took a couple of years though). Symptoms remain but are not progressing

[marymac]

Thank you for your input: IMO we (with the full spine syrinx) cannot convey how we feel with our doctors: nobody else has one running the whole length so how do they determine our pain: fully medicated, I can be productive, creative, am a musician/composer, grocery shop if necessary. Even then, I have to pace myself. Without meds, I literally can't move: absolutely everything aches/burns/pounds. Is anybody else stuck in the rut I am?
and forgettabout Obamacare: I can't afford $900/month for just ME. Anybody else???
Feel as good as you can and thanks for answering.

[tennesseewalker]

C1 to the bottom of T7.

[LouiseB]

Syrinx C3-T10, congenital occult tethered cord - cut filum terminale 2007 ( I live in Spain, there is a great Dr in Barcelona who operated on me for 15,000 Dollars). Syrinx shrunk.

2010 grew again full length, long and skinny, symptoms all over the place, pain mainly in legs??? Neuro can´t tell me why. I stay home and don´t go out, activities even a lunch out increases pain. Been on all the drugs, they for work for awhile then dosage is maxed out and pain increases.

My son just turned 18 and off to university, I have been a single mum since he was 3, so I am free of responsibilities. I am thinking in throwing in the towel as it were, Quality of life is not pleasant. My Neuro wants me to give it another year to see if he can help me, but without my son I seem to have lost all need to keep trying. I think one night when the pain gets too bad, i will probably just pop to many meds. I have been close, but not intentially, just trying to get to sleep so pain will stop for awhile.

[syrinx48]

Hi Louise,

Please don't give up hope! I sent you a PM

Annemarie