SO a syrinx was ruled out. ....u will also want to rule out related conditions as well ...make sure there is no CSF obstruction.....and go from there.
I feel it is best to see a true Chiari specialist to again make sure ur issues are not Chiari related in that it could be EDS, CCI, ....as examples.
CCI = cervio cranial instability....
Hi and welcome to the Chiari forum.
First u need to locate a true Chiari specialist.....a reg, MRI is not a suggest means to determine if CSF flow is obstructed...a reg MRI is a still pic, while a CINE MRI shows flow or a disruption in flow....yes it is possible to have some CSF in that area of the foreman magnum...but that does not mean the tonsils do not pulsate and block it at times...so do look into a CINE MRI and or an upright MRI...
U said no syrinx, did u have a MRI of the cervical, thoracic and lumbar spine? If not a syrinx was not ruled out, only in the area that a MRI was done can be ruled out and many with Chiari have had a syrinx in the thoracic and lumbar spine....so more MRI's are needed as well.
Then there are the related conditions....bcuz Chiari is a congenital condition, we adapt to many of the symptoms and consider them "normal" so we lessen our own need to look more closely at the condition and related conditions.
I think u need to look at a list of symptoms and reflect back on ne u may have or had that u do not consider as related to ur Chiari DX....and see just what all has been going on, as Chiari symptoms cycle and change over time....
It is not possible to answer ur question until u have more testing done...and then only a Dr can do that.....
But I will say not everyone with Chiari will require surgery.
Thank you Selma. Yes I have had MRI of brain, lumbar , thoracic region as well. Tethered cord has also been ruled out.
I guess it all comes down to how I can deal with the symptoms on a daily basis. i.e. how frequent or severe the headaches are.
You are doing a great job with your advice.
Thanks once more. I am in the care of a reliable NS ( not in the USA )
Since my last entry I am in' wait and watch" mode as my NS has suggested that I may be developing a Syrinx (some thickening noted on my spinal cord ) I am repeating all the MRI scans again later in the year.
Apart from constant pain at the base of my skull , I am not too bad. The headaches have decreased but I get on average one very brief pressure headache each week. I am taking a low dose of Mobic which seems to have helped a bit. I am keeping a diary.
I note several others report they have Hashimotos Thyroiditis. I have had this for 25 years.Incidently my sister has now had a Chiari identified, She also has Hashimotos. With her the Chiari is not causing any problems. She has been diagnosed with PMR which explains her aches and pains.
PMR as in Polymyalgia rheumatica?
It is not uncommon for those with Chiari to have RA, or EDS which can cause all over pain.... it can also cause auto immune conditions like Hashimoto's.
Have u had testing for related conditions like ICP, POTS, ?
Yes, poly myalgia rheumatica..
No I doubt I have POTS or ICP.
I have age related rheumatoid arthritis . I have had a full body bone scan.
Than you Selma
Oops . I have osteo arthritis not rheumatoid arthritis.
Two months ago I started Mobic (an anti inflammatory) for my neck pain and I have almost turned the corner.
I am still having to repeat of all my MRIs in October to check if there has been any changes..
My pressure headaches have dropped from weekly to occasionally and my general health has improved..
I am attending regular aqua exercises as well.
Thanks for the clarification and the update...so glad to hear this is working for you.
Do keep us posted if you see anymore improvements...or changes from the meds and your aqua classes. : )
At my October check up, my" tonsils" were measured at 10 mm. Previously they were 12 mm. My pressure headaches have reduced to rarely now. My Neuro stated that sometimes symptoms will subside for a time and may return. I am being reviewed in 12 months .There was a small bulge in the thoracic area of my spine, but that has not changed and it has not developed into a syrinx.
I am still on Mobic and aqua classes 3-4 times a week certainly do help.
Meanwhile my lower back pain has increased due to osteo arthritis and I have recently had severe sciatica.My lumbar MRI shows I have a synovial cyst at L5S1. So it is back to the neurosurgeon for a new problem ! Oh the delights of aging ! I am reading that removal of the cyst is the preferred option for the best outcome. I can put this off until after the Christmas break. Merry Christmas to you.