Just diagnosed

[mags100]

Hi I have just found out today that I have Chiai Malformation and a spinal cord syrinx.  I had a MRI scan with contrast as the Drs thought I had MS.  This is a bit of a shock for me and I don't really know a lot about the condition.  I have been referred to a neurosurgeon but have not had an appointment yet.  I have quite a lot of symptoms the worst of which would be serve LBP which radiates around my hips and down my legs.  Can anyone tell me a bit more about this condition and what I could expect.

[mags100]

ThanksSelma

[selmaS]

  There is a list of Chiari Drs compiled by The Ann Conroy Trust.....I do have a link if you need it....

Unfortunately yes, that is all too common for many of us....we are all different but have had similar issues like that happen.

I got the back spasms post op....and was lead to believe they were due to a related condition I have Ehlers-Dablos....so do have that ruled out.

For no apparent reason symptoms can flare and change....so nothing is impossible to consider to be linked to Chiari....no matter how odd we may think it is....and this is why Drs too are not sure how to figure this all out as it is not something taught in med school....Chiari is not new, but is new to being found in live patients...as MRI's were not always around to find it....now that they have they are not sure what it means for us to have it and some like to tell us, instead of learning from us....

But lucky for us, there are some that focus on Chiari and related conditions...so help is out there.....

[mags100]

Selma thanks so much for ur help.  I have been complaining about different symptoms from my teenage years, I am now 40 and just feel like I have been banging my head against a wall every time I went to the Drs. I ended up paying to have a private MRI done to try and get something sorted as the NHS here wasn't helping me.  I had a bad time in Feb this year I thought my back had went into spasm but I ended up not being able to walk more than a few steps for about 5 weeks I am still recovering from this at the moment.  Is it usual to have episodes like this? Sorry to be a torture but my GP doesn't seem to know much about it.

[selmaS]

  Hi and welcome to the Chiari forum.

It is normal to be scared as most of us never heard of this b4 getting the DX.....not that it is helpful, but more have Chiari then MS, it is just not well known. The symptoms are similar tho and many times, people are mis-DX'd as having MS and even treated for it when it is in fact Chiari.....

When you have  Chiari with a syrinx, surgery is usually the first option they go to when you are symptomatic.....the decompression surgery for Chiari in many instances will allow the syrinx to shrink....but this does not always work....and surgery is not  cure for Chiari...once you have it you always have it and surgery may not relieve all symptoms you have and can cause more IF your Dr is not a true Chiari specialist and  rules out ALL related conditions as it is the related conditions that can cause set backs and one to feel worse post op...that and doing too much too soon.....

Chiari is the malformation of the skull , it is too small and forces the cerebral tonsils to herniate....the herniation then obstructs CSF flow which can cause the formation of a syrinx (pocket of CSF fluid) to build and grow putting pressure on the spinal cord and or brain stem depending on where it forms....most Drs will look only in the cervical spine but a syrinx can form in any part so a MRI of the cervical, thoracic and lumbar is needed to rule out a syrinx in those areas as well as rule out disk issues and  tethered cord.....

Those with Chiari are prone to auto immune conditions like Hashimoto's thyroiditis and connective tissue disorders like Ehlers-Danlos....and some other autonomic conditions like POTS.....

It can be over whelming, and having the right Dr is key!!!! But know you are not alone....first educate your self on Chiari and ALL related conditions which will help you know when you do have the right Dr....but you will want to research them as well and find one that is a true specialist...not one that treats it from time to time....experience and knowledge is very important.

Hang in there.