What to Expect

[marmar0515]

I was just diagnosis with Chiari Type 1 and I am wondering what to expect. I have been going to a pain clinic for about 3 years and was told I have arthritis, degenerative joint disease and disk disease and scoliosis also my cervical spine (neck) is prefectly straight there is no natural curve to my neck because of the scoliosis and my cervical spine being straight my upper back and neck go in to muscle spasms all the time I get trigger point injectsion every month to try and help stop the spasms the trigger points do help. I was sent to a headache doctor who wants to give me Botox trigger points injections that will give me longer lasting results  I am waiting to see if my insurance will pay for Botox trigger points. I have a headache all the time that never goes away (I know now that it is from the Chiari) for about the last 6 or 7 months my symptoms have gotten worse and the headache doctor wants to give me an infusion therapy to desensitize my body from the headache pain. The Chiari appears to have grown from an MRI that was done 3 years ago ( I was not told at that time that I had Chiari) from 3mm to 5mm is that something that can happen? and has anyone had the infusion therapy? and can I expect the Chiari to get worse? Any information would be a great help.

[selmaS]

HI I must agree with the above posters.....I also want to say u may want ur dx of fibro re-examined.I was told I had fibro and now I am dx with Ehlers-Danlos Syndrome....it feels very much like fibro.....but is very different.

U deff want to know if u have this, so do get it ruled out.

"selma"

[plumsaki]

I, too, would suggest finding a Chiari specialist straight away!!!  They will be able to answer your questions in the best manner.  It is definitely possible for your Chiari to worsen.  I lived virtually asymptomatically for years (with the exception of the occasional ACM headache) until I fell.  My chiari went from 8mm to 15mm and I had a sudden barrage of symptoms within a matter of weeks from my fall.  I had my decompression surgery this past January.

[marmar0515]

Thanks for your input. I also have fybromyalgia so it is also hard to tell when I am having a flare up of fybromyalgia or Chiari symptoms.

[Shane99]

Read the top of the forum thread about welcoming you. It can answer a lot of your questions.

But yes, it will most likely get worse. At 3mm a lot of Dr don't consider it Chiari, at 5mm they usually make the diagnoses.

I've had the decompression surgery, but not the injesctions. The best bi of advice I can give is; Get a Chiari Specialist.