Hello all, first of all thanks so much for your warm welcome to the site. 6 weeks ago I hadn't heard of a Chiari malformation, then it was pointed out to me by an ENT consultant who I'd seen for ear pain, tinnitus balance problems and vertigo. Oh I said well isnt that the part of the brain responsible for balance ? So is that why I'm dizzy? No! You need to see a neurologist. End of ENT consultation. I saw a neurologist on 2nd Dec he was happy to reassure me that although he couldn't view the scan the report was within normal limits and that none of the 17 symptoms that had developed over 11 years were in any way caused by it. All of them he felt were migraine. Including arm and leg weakness and back and shoulder pain. I'm finding this confusing and I'm not sure why I don't agree, I asked why with the head ache for example was it worse at night, I thought migraines had triggers, mine is worse with gravity, wakes me up, isn't affected by food or light. He said its an Atypical migraine . I'd really appreciate others opinions I'm bored with myself and losing the plot. More has happened since then but I'll stop there cos that's really what I wanted to ask
AW thank you Abby and Rebecca' I'm discovering that this is battle for everyone , so inspiring reading peoples stories.Well I currently have 2 plans put in place for me,
A.outpatient Neurologolist appt He agreed to arrange full scan and NCT etc and review with a view to neurosurgery referral
B.Inpatient neurologist emphatic that I have medication overuse headache and migraine and chiari absolutely irrelevant. She injected my head started me on Topiromate. And discharged me to chronic pain people.
I have a 3rd plan, to try to be positive and make the most of both, I'll try not taking pain killers start topiromate, meanwhile I've confirmed that my scan appointment is still going ahead and asked to see neuro A for original review. Thanks again x
Debby, keep that positive attitude. In my own experience and reading lots of others’ NLs LOVE a migrain. They have an RX pad for that and also happen to know almost nothing about Chiari. NLs are great for a lot of things but generally not for Chiari. You need a specialized chiari NS to evaluate your unique brain and spine, evaluate for EDS and CRANIO cervical instability. For most people surgery is an option, but you need to know what you have. If you see an NS and not sure it’s right keep going till something fits. I’ll include a previous post.
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.
Vitamin d deficiency
Magnesium deficiency
Vitamin Bs deficiencies
Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.
Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required. Finding a surgeon who screens for CCI is tough- not all Chiari surgeons have started screening for and treating CCI.
Dysautonomia- Dinet.org
Tethered cord syndrome
Sleep apnea
I am glad you found us,
Jenn
Ty Jenn
I'll read the links and let you know .. I'm glad I found you too