I am new to the group. I was diagnosed and had surgery in 2001 and have since had off and on trouble with Chiari symptoms. I have always taken meds for migraines and see a neuro Dr for regular follow ups. One of my major symptoms has always been terrible neck and shoulder pain that radiates to my arms and wrists. Lately this has gotten much worse. My Dr ordered a cervical MRI, last one was done in 2005 and showed nothing. This time my Dr told me it was fine. However, I have always liked to obtain copies of the reports for review (after my Chiari was missed by multiple Drs I have learned to double check!). My reports (also had x-rays) indicated the presence of mild and moderate degenerative disc disease, moderate posterior spondylosis, and some effacement of the thecal sac. I have been googling this trying to find out if I should be concerned about this or if this is nothing to worry about as would be suggested by my Dr telling me my MRI was fine.... (would at least like to know results for my own knowledge so not to happy about having to find this out on my own).
My Dr and I had been discussing a return to physical therapy and I see online this is a normal treatment for DDD. I would appreciate any feedback on whether or not this is something to be pursued, something to monitor or if anyone finds a link between this and their Chiari. Any help is appreciated!! Thanks!
Kwiat, I’m not sure it’s a Chiari thing (but it definitely could be) but more an Ehlers Danlos Syndrome thing. eDS /Hypermobility syndrome shows up in at least 20% of chiarians and it wreaks havoc on joints, especially vertebrael joints. You can google the brighton Criteria and the Beighton criteria for EDS. If It was me, I would consider seeing a Chiari NS who can also diagnose cranial cervical instability, and just have the whole 9 yards evaluated. I would do the PT in the meantime… But have a keen set of eyes on your DDD and make sure that’s all it is- many people with Chiari and aeDS have cranial cervical instability.
I have DDD, Chiari, EDS and Cranial cervical instability. Oh- reminds me have you had a flexion extension cervical xray exam? This will show if your vertabrae slip off one another when you bend or extend your neck. There is an upright cervical flexion extension MRI too, which is much more thorough.
Thanks for the feedback. There is definitly a pattern here. I have not been checked for EDS but I did look up the criteria online and think I meet it. I was just recently told about the DDD and spinal arthritis so this is very helpful information for me to have when I see my Dr. I am unsure of what CCI is?
Thank you all for your help! does anyone have anything that works well for the pain of DDD/neck pain? I do also use a cape like heat cool pack and it does wonders. I use something called arnica gel too, it is a homeopathic gel and it helps a lot. I have recently tried Cymbalta for pain but couldn't stand all the side effects. For a while I was taking so much advil for pain and migraines that I ended up with stomach ulcers so I am trying to find better ways to manage the pain! Thanks!
One of my Drs had suggested that I had "cranial settling" years ago ... is that similar to cranio-cervical instability? Did you see a neurologist or a neurosurgeon to find this all out?
Wow. I feel right at home here. I was also told I have DDD and facet arthritis. I asked about ehlers danlos they had no comments and didn't relate it to the Chiari. I tell you all in the brief momments of being on here I am feeling more encouragement than I have had years. THANK YOU! !
For any CCI you need to see a specialized NS. Cranial settling is one of the forms of CCI. The very top top of your spine (odontoid, dens) is "poking" upward into spinal cord and medulla. With cranial settling the skull sinks downward around the spine allowing cord and brainstem to crease over the odontoid. Do you have rheumatoid arthritis? If not you may have, or in addition to, Ehlers Danlos syndrome. CCI is so painful, symptoms mimic Chiari plus some. Please please please get a sleep study done immediately, breathing difficulties are dangerous, not trying to be alarming but it is true. You do need a Chiari specialist who ALSO disgnoses and fuses for CCI. With CCI a decompression by itself will not relieve symptoms and may likely (most likely) make them worse. The surgeons I am aware of who deal with CCI are
TCI, NY Henderson, MD Rosner, NC Sandhu, MD Frim ?, IL Trumble?, FL There is another one who I can't remember a member recently spoke of a great experience- mods can you remember?there are of course others who I haven't heard of, this is not THE list but we have to be careful of who we choose.
Great videos explaining CCI with Chiari and EDS (rheumatoid arthritis too) are: CSFinfo.org Videos Greater metropolitan area Watch them all!! Especially regarding CCI.
To look into Ehlers Danlos Google the Brighton Criteria and the Beighton Criteria. Not all EDSers are currently hypermobile (maybe in younger years) nor do we all have the "doughy" skin.
