Hello,
I was diagnosed with Chiari I Malformation in November of 2010. Because my symptoms were severe, I was recommended for surgery with Dr. Albert Lee in Tallahassee and underwent the procedure in January 2011.
Within the last two months, I've had increased neck pressure and headaches. This concerned me, so I went through my primary to get an MRI done and arranged for the results to also be sent to Dr. Lee's office. Today, I received a call from my primary to inform me that the MRI I had was unchanged from October 2010 - BEFORE I had the surgery. The Chiari Malformation still registers on the MRI.
My question is, how is this possible? I underwent this surgery and never received a follow-up MRI (I was told I didn't need one). Did the surgery not work? Or, did it work, and then the Chiari progressed again? I'm so confused and upset, and I feel like I underwent surgery for no reason at all. My symptoms did seem to go away for a time, but now I'm right back to where I started.
Please help, I'm so confused and I don't know what to do. I think, if I don't like Dr. Lee's answer, I'm going to seek out a second opinion. I don't know what options my insurance will allow (I have CHP), but I'm scared of doing the surgery a second time and have THAT one not work, either. I know Chiari can be progressive, but I just... I don't know, I don't know what happened. Has anyone had this happen before? What could be the underlying cause of something like this?
Thank you so much for your help.
I've not had my post-surgery MRI as of yet so I'm not sure what it should look like. Was it a regular MRI or a CINE to measure CSF flow? My doctor orders a CINE at 6 mos. post op to make sure that CSF is flowing adequately and that no scar tissue has built up.
Thank you for the responses.
The MRI I had was just a regular MRI. My question is, I suppose, how can the symptoms be truly alleviated if the MRI still shows the exact same thing?
If my brain has more room, wouldn't that impact the results of the MRI?
I think the herniation will still show. For instance in my surgery they did the C1 laminectomy to give the tonsils more room. That makes me think that they still expected them to be herniated, they were just removing bone to accommodate this . The before and after pictures on my doctor's website still show a herniation but shows the removed bone and restored flow of CSF.
Persephone,
I live near Tallahassee and was considering surgery with Dr Lee's partner. Instead we decided to seek treatment at Mayo Clinic Jacksonville. I know Mayo Clinic is considered out of network with CHP, but maybe a consultation at Shands would be covered??
I can't imagine the frustration you must be feeling, and the anxiety :(
Please keep us updated on your progress, okay?
~Lindola~