Just wanted to introduce myself - I just got my diagnosis last week and have spent far too many hours reading this weekend. :) I found this site yesterday and was very happy and relieved.
I started getting symptoms in June and it's been a whirlwind of doctor's appointments leading up to the two MRI's that led to my diagnosis. My family doctor is amazing, she called me at home the day after my second MRI with the news.
I have an appointment with the neurologist tomorrow - I still don't know all the details of the diagnosis ie. size, is there a syrinx etc... so I'm still a bit nervous about that.
Also tomorrow going to see the rheumatologist - this whole thing started with joint pain in my hands, I thought I had RA. Hands still hurt, but probably safe to say it's not RA now.
Anyway - I just wanted to say thank you to everyone who has posted such valuable information. I spent hours over the weekend reading and learning. I'm feeling very positive and prepared for every possibility going forward.
I am fairly new to this site as well, and also spent a number of hours reading old posts.
So many members have posted useful information. I sounds like you have probably have written down a few questions you want to ask your doctors, just from reading their posts.
It is understandable that you are nervous about your reports. I always take someone with me to appts. because there is so much coming at you, in the beginning that it is difficult to remember everything.
Take care, and we will look forward to hearing about your appointment.
Hi--I, too, am recently diagnosed (Sept. 15) and have my first appointment with a neurosurgeon tomorrow. Hope yours goes well, and I hope we both have good news going forward! It's a lot to take in, isn't it?
Glad you found us. Let us know how your appt goes, and consider finding a Chiari specialized NS- not too many NLs understand what Chiari really is and how it’s treated- many think Chiari is benign and symptomless.
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.
So... my NL appointment got postponed until today. But it went well I think. She was very nice.
She had the MRI's right there on the computer - she pulled them up, scrolled through them, and within a few minutes we were talking referral to the NS. She looked me in the eye and said "soon".
She gave me a prescription for nortriptyline, which I'm not sure about. I was on it once before (8 years ago), for a period of about 9 months, and I hated it. Thinking back though, I was on a much higher dose... that NL put me on a step up program that took me from 10mg up to 60mg, and then back down again all within the 9 month time-frame and it really threw me for a loop. So I'm not sure if I want to start it again, I've got to think about that for a bit.
There is a syrinx, small but she saw it right away. When my family doctor read me the report from the DI technicians, she said they saw something between C5 and C6 but "it could just be artefact". So I'm taking the fact that the NL picked up on it right away means she's familiar with chiari and all it's complications. Back to see her in a month.
Going for a test, forgot the name already... they put electrodes on the head and feet and measure the time it takes the signals to travel? What is that called, and what is that going to tell them?