Good evening all! I'm new to this whole thing. So new that my neurologist never said Chiari, he talked about brain tonsils being too low and that in some people, it can cause my symptoms. I hit the Internet and Googled brain tonsils. I found Arnold-Chiari Malformation and this support group.
I didn't get the written report from the neurologist, so I called them and they sent another one, which I received today. It confirmed a small Chiari, but didn't give the actual size. Everything else looked normal. One side of my brain is bigger then the other, but that's a congenital development thing as well. Now I have to wait until the neurosurgeon calls to set up an appointment hopefully sometime next week.
I have been having a hard time for a couple months- dizzy, spots in my vision, unsteady on my feet, far less coordination (not that I've ever been graceful) and many other symptoms that I've had over years like fatigue deep down exhaustion and still not being able to sleep. I've had neck aches since I was a kid and migraines (from the back of my head to behind my eyes) since I was pregnant with my first child. I have shoulder pain. I've gotten so uncoordinated that I have to be careful when I chew or I'll bite my tongue and or the inside of my lips. Looking back, I think many of these were actually symptoms no one picked up on. All in all, I've discovered I'm not crazy or alone! Thank you for having this forum. I've learned a lot already. Now I have to wait to see what the neurosurgeon has to say.
Is it possible to have something happen to aggravate Chiari? It's been bad for a couple months, but I have no idea what's different. Also, is it normal to have so many symptoms and have a small Chiari?
Thanks! I'm waiting to hear from the NS to get in to see him/her. I'm in Maine, so I'm sure there is a long wait time to get in and see any NS here.
Shandier, glad you are seeing an NS. If you want to consider surgery as an option please take the time to find a true Chiari specialist. Some of us have had to travel to get to a reputable surgeon.
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, since you are newly diagnosed I just want you to be informed.
Vitamin d deficiency
Magnesium deficiency
Ehlers Danlos syndrome- 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.
Dysautonomia
Tethered cord syndrome
I am glad you found us,
Jenn
Thank you for the info. According to my research, there is only ONE NS in my area that does decompression surgery. All the other NS may. I'm NOT going to any of them. I have no idea who my neurologist is sending me to, but I'll be doing my research on them. I also started researching the Chiari Institute in New York which is the closest center to me.
Vitamin D? Really? My GP has been working with me on trying to figure out what's been going on for a long time. He had my blood tested for EVERYTHING. My vitamin D level was 4. It's supposed to be above 30... I've been taking 2000 IU a day for almost a year and it's come up a little, but not much. I've been taking Effexor for depression for a couple of years. I was hoping that raising it might get off the Effexor. Man, this is all starting to click into place. I'm so glad that I found this place to ask questions and get information!
Thank you all!
Hi Shandier, I also have a vit d deficiency. A few yrs ago a rheumatologist found it and put me on 50,000 units per week for 8 weeks. It brought me to 24. After that I take 5000 all months except june thru oct and 2000 during summer. My levels are now in the 50s and fatique and joints incredibly better. I recommend a rheumatologist for your vit d. I too am new here and just received mri results yesterday stating tonsils 5mm below normal. Best of luck on your research.
Thanks for the info! I will be calling my GP on Monday about the vit D and see if there is a magnesium deficiency.