well, my symptom list is kinda long - over 35 symptoms - but i'll try to hit the worst ones or most frequent. Pressure headaches, severe neck pain, memory problems and confusion, vision problems, ringing or heartbeat in ears, balance is off, unsteady gait (crazy legs), and severe fatigue. I think the memory and confusion are the hardest for me to deal with, because i use to run million dollar companies and now i can barely help my daughter with her 3rd grade homework! Oh, also meant to tell you that dr. Heffez is the only dr that looked at my csf flow and i have less than 1/3 the normal flow. Hope that helps ~ Shannon
Shannon--Thank you! Can I ask--what kind of symptoms were you/are you having? I am hopeful the surgery will go well and have you feeling better!!!
Hi Kim! My herniation is less than yours and my mri's said low lying tonsils too. It took me going to dr. Heffez as well to get any help! I live in Mississippi by the way. I have been very pleased with him and his staff, and he will be doing my decompression surgery on may 24th. If you have any questions, just ask! Blessings ~ Shannon
Thanks everyone--for the welcome and the advice/insight. I need to continue to do more reading. It is still surprising to me that the first neuro told me that the 'low-lying tonsils' wouldn't cause any of the symptoms--and to read that indeed these can be caused by this. The last 2 weeks have been a whirlwind...I was diagnosed with the TIA, then possible stroke/MS, then a migraine....only to find out that the 6mm measurement on the cerrebellum could cause these symptoms. Phew! No wonder I am tired!!!! Kim
Hi...we have several members that had their surgery there and a few with surgery scheduled with Dr H.
Please research all drs to be sure they r the right dr for u.It appears the drs u have been to have no idea about chiari...the size of herniation is not the determining factors as to whether or not it can cause symptoms....most drs look for a herniation at least 5mm...but, ur dr should be looking for a CSF blockage and overcrowding...and it appears u have most of the symptoms already.
We r happy to have u join our little family here, so sorry the reason u had to seek us out.
"selma"
I sent my MRI's last friday and got a response by tuesday. I go see him on the 21st. I have heard great things about him.
Take care
Sooo glad to hear that you have taken the next step and that you got a good response. 6mm is a good size but even if it wasn't that large...it isn't the size of the herniation that necessarily matters..it is how much overcrowding and CSF blockage there is. There are many others who have dealt with TCI..so I'm sure you will get lots of responses. I have heard nothing but good things about TCI and I WISH that we had one in Canada.
Carolyn
Hmmm....emailed The Wisconsin Chiari Center and got a message back, supposedly from Dr. Heffez that says " All this could be due to the Chiari. A 6mm herniation is bad enough."
Certainly makes me think. I am going to mail off the MRI results and other requested information to have them reviewed. Has anyone else sent their info to the center?
I have found a Chiari person in the area and my PCP is good with providing the referral necessary. He was supposed to be in my insurance and I am hoping that info was current!!!
Any other info is appreciated. Thank you so much!!
Hello and Welcome,
100% yes, these symptoms could be connected with Chiari...which is what you have if your tonsills are herniated. If you have dr's that are not educated in this matter, they will tell you it is asymptomatic, but they are wrong!!
Hopefully, you have your MRI reports and pictures. I would look for a new specialist to get a second opinion on them. The Chiari Institute will receive inquiries by email for a nominal fee and they will review them. I suggest you do that right away or if that is not possible..find a Chiari specialist (preferrably a NS) in your area. The key to fighting Chiari is to find the right specialists who understand the condition!! Dizziness is almost always on the top 3 symptoms listed for Chiari along with headaches.
Once again, definitely look into it and soon!!!
Good luck, please keep us posted!
Carolyn