just syringomyelia

[lisaob1]

i joined this forum because my daughter has syringomyelia,i was invited to join this forum,altho its chiari i appreciate that but is there anyone with syringomyelia out there also?

[vbirdee02]

Has anyone with syringomeylia tried high quality cbd oil to shrink syrinx; it has show to work with brain tumors;;;but not studies yet.

[lisaob1]

hi,thankyou for being polite lol,all this technology makes me feel old,thankyou again for your posts
lisa x

[lisaob1]

hi thankyou so much for your reply,my daughter is pretty ok,she has her good days and bad,i admire her so much as she is such a little fighter,she twisted her ankle last week and would not accept a lift of me to the library to meet her friends,altho its only a five minute walk,it must seem like twenty to her.im so proud of her. there is something id like to ask,my daughter hasnt had a mri for almost three years,doctors she sees keep saying they are goin to do one but nothing seems to come about. im just waiting now for an appointment as i have had to push for it,what my question is..can a syrinx usually get larger?it was 9mm 3 years ago and im worried as i dont know what to expect.with her muscle disease its hard to determine what is causing her problems.and is 9mm quite large coz it feels it is,im frightened if it is larger how much larger can it actually get?

[STL5]

Welcome!  I hope that your daughter is doing okay.  I have a syrinx and chiari.  Please feel free to ask me any questions.

[youngwife]

Oh, hey, please don't feel silly!  We've all had to learn at some point what cyber codes are!! ;)

[lisaob1]

hi there,thankyou so much for your reply,and thankyou for letting me know DD also,means a lot,feel bit silly now
thanks again

[youngwife]

Hi there!  Welcome to the forum!  I hope you find lots of good info here.  And there are wonderful friends to be made.

My daughter is 16, and has Syringomyelia, Chiari, and Tethered Cord Syndrome.  She lives with daily pain, and the limitations that brings.  It is heartbreaking to hear of other kids that are also struggling.

DD = Dear Daughter
DS = Dear Son
DH = Dear Husband

:) HTH!

Blessings,

Rebecca

[lisaob1]

hi thankyou so much for your replies,without sounding naieve,what does DD mean?

[Mazie1209]

Hi! I also have a syrinx, (i have mri pic posted in my profile) but I also have chiari. This is a great forum!!
Mazie :o)

[hdavids]

OHH hit the enter button too soon..... Welcome to the forum lisaob1 your in the right place for support from others that share the same condition as your DD

[hdavids]

Hi

I have syringomyelia/syrinx, I have not been dx with chiari.

If you have any questions feel free to ask :)

[Spaceystac]

Sorry that no one else has posted yet. When I first started looking around this site, I remember typing Syrinx and/or Syringomyelia in the search bar for this site. I got any post ever posted with those words in, rather it was in the Neurology community, or the Chiari community, It shows all of them. I did this to find out if there were other's and where they were. I found that some of them had posted many years ago, some of them had only posted once and never returned. I found this forum and it seems to be more active than most, hopefully more Syringomyelia members will post soon!   Stacey
  

[Spaceystac]

Hi, yes there are many of us here. I am not fully diagnosed with syringomyelia, but i do have a Syrinx. It is more rare to have a Syrinx, and I believe that is why it seems like there are less of us on this forum.  
  Hope more members with Syringomyelia  post for you, so you can meet others for you to chat with.
   Feel free to let us know if you have any more questions, or post just for support!     Stacey