what came first??

[katie_m8]

It's a bit like the chicken and egg story..  what came first .. tonsillar descent or syrinx and which one do they fix??

A bit about me .. I suffered from severe headaches last November, I never had a headache like that before.  Went private as doctors were saying it was cluster headaches.  Private consultant said my type of head ache was a red flag and I needed an mri brain.  I had that done which showed lack of csf on brain and tonsillar descent.  He then said I needed an mri spine done which has shown an abnormality on t10/t11 and he felt it may have been dural ecstasia as he felt I had intracranial hypotension with the lack of fluid around my brain.  I'm waiting on a final diagnosis as after my lumbar puncture he no longer feels I have intracranial hypotension but in doing the self diagnosis bit I'm wondering if the abnormality could be a syrinx and if so will they treat the syrinx or tonsillar descent?  I'm due to be reviewed at the end of january.  I do have faith in my consultant and know I will be looked after we'll whatever the final diagnosis is.

[katie_m8]

Hi just a quick update to let you know I'm getting a blood patch tomorrow.  My consultant says he thinks I have a csf leak.  Hopefully this will help.  I'll come back and let you know how I get on:)

[selmaS]

  Avoiding  surgery  due to  a connective  tissue disorder  is not the answer...,I  have one  and had  surgery  and I did not  get worse...the thing  is my  Drs  checked  me for these related conditions  and took  them into account when they did surgery to help avoid more issues post op......

EDS  patients tend to heal  slower, and we have issues with meds  and foreign matter....so what is used for a dura patch is vitally important.

  If  you  have  a  CSF  obstruction, which  it  sounds like  you do since  you  have  a syrinx..,.surgery is the best option for both the herniation creating  the obstruction  and to help the syrinx shrink.

[baccalynnwv]

All of those things mentioned can be common stories with Chiari Chiari patients. And actually, if you have EDS, it can make your symptoms much worse if not treated. But you are right, EDS makes it hard to heal in many cases. It kind of depends on the quality of life you have - or want to have - as if you elect for surgery. Hopefully yours can be avoided. Keep us posted please!

Check out CSFinfo.org and other web sites dedicated to Chairi. See if anything sounds suspect and make sure to ask your doctor about it.

[katie_m8]

He didn't exactly say I had chairi .. it was tonsillar descent but I'm thinking ahead and believe surgery is best avoided if you have a connective tissue disorder as you could end up worse.  My family have lots of complications going on such as spondololysis (think that's how you spell it lol) andAAA, thyroid disorders etc etc!

[selmaS]

Yeah-we-do-not-have-a-like-button-here-lol.....but-we-can-hope-one-day-we-might...lol...

Why-not-go-down-that-path-if-you-have-Chiari-you-need-to-know-b4-you-entertain-any-thoughts-of-surgery!!!!

[katie_m8]

Thanks very much for your replies.  I normally use Facebook and was looking for "like" buttons.   All of your comments are very helpful.

My consultant will see me this Friday so ill find out sooner than I initially though so ill post after I see him and give you an update.  I don't know what else the abnormality could be on my spine other than a syrinx .. has anyone had an abnormality found .. My mri was with contrast.  I'm pretty sure if it was something with bones etc they would know exactly what it is.

I had no trauma so it must be congenital (if this is my final diagnosis).  I had thought about connective tissue disorders such as EDS but my consultant doesn't think I should go down that path.  

I'll keep you posted .. Thanks again for taking the time to answer my Question:) xx

[selmaS]

   Hi and  welcome  to  the  Chiari forum.

I  asked  a  similar question regarding Chiari and  EDS....but as  the above posters mentioned the obstruction  of  CSF flow  tends to cause a syrinx to develop.....

None of  us here  are in the medical  profession....but have learned  along  our own Chiari  journey the  info  we  share.

  As  to which  they treat  first it would  be  the Chiari....with the decompression surgery in  hopes  restoring  CSF  flow will  also  allow the syrinx  to  shrink....sometimes  they  do  and  sometimes  not....

They  tend  to not  do  surgery  just on a  syrinx  as most  are too small  to use a stent  or  shunt  to  allow them to  drain....

Plus,  just  getting  the syrinx to drain   does not  help the CSF flow that is obstructed  by  the cerebral  tonsils....so they  have to  address that first, and hope it helps the syrinx  as well....

Now, it is also  possible  to  develop a syrinx  at the same time a herniation develops if they  are  due to  a  blunt force  trauma....so if  your  Chiari is acquired and  not congenital...that  could  be possible...but not  too  likely.

Hope  this  is helpful....know  you  are  not  alone <3

[Elisaandbucky]

I am reading your post and the response from baccalynnwv, which sounds accurate to me. But, also, I am not a physician. It is great that you are so proa time about your health. Maybe you could get some answers sooner if others cancel appointments before your scheduled review at the end of January.

[baccalynnwv]

I can not answer about what your doctor thought was seen on the MRI, but I am pretty sure the syrinx only forms when there is CSF blockage or injury to the spinal cord. So, CSF blockage/tonsillar descent first - then syrinx.

Someone might come and correct me though.

However, I think the syrinx - if seen - are pretty easy for a radiologist to identify and not get confused with other things. But again - I could be totally wrong.