Non-invasive treatment for craniocervical instability?

[Miminka0]

I have had chronic neck pain and stiffness alternating with weakness (and many, many other symptoms) for about two years. It started after minor head trauma where I hit my head on a heavy, metal lantern. I felt by skull ricochet at the base, and since then... I've never been the same.

I've seen numerous doctors and been to a pain clinic. I had a flexion / extension x ray done and a lying down MRI, and both showed nothing unusual except for loss of lordosis. Hence the doctors I've seen have settled on a tentative whiplash diagnosis and given me NSAIDS, lyrica and valium as well as physiotherapy. But of course these don't treat the core problem, which is why I'm still struggling 2 years later. I've had to resort to looking for answers online, and I'm certain now I have craniocervical instability, especially as I am hypermobile hence I probably have some form of EDS.

I'm finding it exceptionally difficult to find information and support in my city (Melbourne, Australia). I'm not keen on the idea of eventual surgery. Is anyone in a similar position? Does anyone know how to make the cervical spine more stable without surgery? Is this even possible?

[selmaS]

No an upright MRI is not needed to DX Chiari. But it can help show how a minimal herniation can be affected by gravity and obstruct CSF flow.
Yes that is the small list. If you find a Dr not on the list please add to the thread.

[Miminka0]

Also can they diagnose CCI from a standing MRI? Or does it need to be a different kind of test?

[Miminka0]

Thanks Elisaandbucky and SelmaS, is this the list you're referring to: http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-Australia/show/1314732

No one mentioned Melbourne doctors in that list. I swear living here is like living in Medieval times. However after googling I found a facebook page and a relevant site which I will link for other's convenience should they view this thread:

https://www.************/chiari.syringomyelia.australia
http://www.chiariaustralia.com/where-to-get-help

@ SelmaS, no I don't know yet if I have chiari. I don't get very frequent or severe headaches luckily *knock on wood*. But I have balance issues, tinnitus, occasional tingling sensations and some dysautonomia issues. These issues were there prior to my head / neck trauma but were minor and didn't interfere with life. They got worse after the trauma but have yet to debilitate me. I have seen that dizziness and tinnitus can be caused by basic whiplash, however in my case which I firmly believe is CCI, I am essentially getting whiplash again and again from minor movements, which is why I never get better. My main problem by far atm is neck stiffness, weakness and pain. But I'd like to rule out chiari, since my symptoms could be due to both conditions.

I have found and upright MRI in Melbourne at least:   http://baysidestandingmri.com.au/ (again, I'm linking everything here to ensure the public viewing this thread can see).

My understanding is that chiari can ONLY be diagnosed from a standing MRI, is that right? And if so, are all radiographers trained to spot and report chiari? I want to be confident that if I receive an standing MRI, they won't 'miss' a chiari malformation because they aren't trained to spot such things or consider it normal or something.

[selmaS]

  Hi and welcome to the Chiari forum.

I too had a DX of whip lash from a MVA and was treated with PT...it did help with my loss of lordosis BUT when you have EDS and other issues ....they can continue past what the Drs feel is  "fixed".

Do you know if you have Chiari as well?

I was told I have CCI as well...and would need surgery in the future....well I had my decompression surgery for my Chiari and that will be 6 yrs ago on the 28th of this month and so far no fusion surgery.....

I really feel the neck exercises given to me post op have given my neck strength....there are certain ones we should do and they must be done correctly or it can do more harm then good....I do feel I have been able to avoid this surgery due to these exercises....

And I do agree, you need to find a true Chiari specialist..which is not easy...but we do have a short list for Australia.....but could be worth looking into...use the links to the list of Drs and then you will see a link for Drs in your Country.....

Know you are not alone/

[Elisaandbucky]

the very first thing is to say welcome to a safe and encouraging community of people who regularly share lots of helpful information. It is great that you are doing research about your issues. And, the other crucial idea is to find a surgeon who specializes in Chiari and related issues. There is a list of doctors listed by geographical region; however, some travel could be necessary. As an everyday thing, keep track of all your symptoms in a journal with dates. This will help you when you go to see a surgeon. I hope I have given you some help. Keep reading the posts and responses here, so you can continue to gather helpful information. I wish for you some answers and some pain relief. Keep us up to date on anything you learn.