Post Chiari Decompression Surgery Question

Question

Hello everyone! I'm new to the forum ando hoping to get some help and support here. I'm struggling so much with symptoms that weren't there before the surgery and wondered if I'm ever going to be normal again? My surgery was January 19, and since then, the severe nerve pain in my neck and down my left arm has eased up; however, now I'm struggling with extreme fatigue, migraines, and vision problems with my left eye-I see purple spiderwebs constantly. Neither the Neurosurgeon or the Neurologist can explain any of it. I've had MRI's and CTA's and both look ok. Today I experienced numbness in my lips and right middle fingertips-weird to say the least. Has anyone else experienced the same symptoms? Should I be concerned? Is this normal? My husband is so frustrated with me- he just doesn't get it but I'm not making it up. :(:(:( Any help would be most appreciated. I'm back to work full time next week and I really don't think I can do it. Thank you so much. Val

selmaS · Answer

Not many NS know how Chiari can affect us so, it is not a stretch that the optho did not think to send you to a neuro optho.

 Keep us posted on what you find out.

selmaS · Answer

My daughter also got married after my PFD surgery...I was approx 2 yrs post op.....so I just needed to be able to attend and get thru it.....( I did all the flowers etc) so it was a lot to do at that point post op for me.....being a slow healer it took time and some of my other issues were flaring up but it all fell into place for me and I have yet to feel surgery is required for my CCI....

selmaS · Answer

I am sure it may be a possibility that it could be the CCI....but it could also be my tethered cord....EDS....a number of things....if it continues I will have it checked out...but for now a little numbness is manageable....

 When first told about a possible fusion I did not want to consider it as my ROM was limited for yrs...once I had surgery my ROM was so much better I just wanted  to enjoy it for a while...

poosygirl · Answer

Hi Babydoll. I am no expert at all, and I haven't even had surgery yet, but am considering it if the NS I see in June says I'm a candidate, and if I can find a true chiari specialist I can trust to do it. But I've been doing a lot of research to prepare and last night I watched a few very informative videos that explain a lot about craniocervical instability and Ehlers-Danlos Syndrome (EDS). Apparently, a LOT of the surgeries fail if the person has EDS and CCI is not properly treated during surgery. They have a much higher success rate when this is taken into consideration.
I am just wondering if this could be your problem. Here is the video: https://www.youtube.com/watch?v=U33T8JFXvk0
CSF presents Diagnosis of Craniocertebral Instability in the Chiari/EDS Population
My neck feels extremely weak, sore and difficult to hold up my head. Selma, I know you have CCI but have so far gotten away without having your neck fused because of your exercises. But could your new numbness be a symptom of CCI? The thought of fusion really frightened me, looking so uncomfortable because of taking away your mobility. But the way this doctor is handling it, it appears to give proper mobility and good results. Worth looking into.
Hope you get the answers to your questions Babydoll!

selmaS · Answer

Hi BDVal and welcome to the Chiari forum.

 I tend to still get the numbness in my fingers as well....I have had down the back of my left thigh more recently....AND I am going on 8 yrs post op!

 It tales time to heal and we are all different.

 Have you been to a neuro- optho  to have your eyes checked? And were ALL related conditions ruled out?