I had decompression surgery in 2011 and felt great right after. Two years later I felt the symptoms creeping back and now I’m real close to feeling how I felt prior to my surgery. My amazing NS who did my surgery is gone and the new one they sent me to was a complete waste. I should have walked out when he said “so you had surgery cause you were having some headaches?” If he would have even skimmed my chart he would have known my continuous headache was only a small piece of what my body was suffering from. Anyway his comment to me was if the surgery worked then there’s no reason why you should be having symptoms again. Has anyone else had a short success story only to relapse back?
I have. I had surgery in 2011 as well and I’m having a recurrence of symptoms. My NS is checking some other options before jumping back to Chiari just to be safe. But I feel your pain and frustration with being brushed off.
Thank you
Keep your chin up and stand firm. No one knows your pain or body better than you and don’t let anyone convince you otherwise. Sending good juju your way.
Sue,
Having some headaches, huh? Oh my goodness.
So, you are definitely not alone. Many of us here myself included had returning symptoms, sometimes worse then before surgery. I’ll give you all my thoughts about it.
Did you have a complete decompression including duraplasty and plate to the back of the skull?
Do you have Ehlers Danlos Syndrome? This one is very important because people with EDS can be born with and or develop cranio cervical instability. EDS is genetic and affects the collagen elastin you produce. It can cause all soft tissues of the body to be lax and stretchy, including the ligaments that hold your joints together. If the ligaments that hold your head to your neck- or any neck joint-become lax the bones will move too much and stretch and kink your spinal cord. The symptoms of cranio cervical instability mimic the symptoms of Chiari. There many different kinds of CCi- some are congenital and present because of the shape and relation of the skull and neck, others develop over time, like the stretched out ligaments. EDS is prevalent with Chiari.
This is the best video I have seen about EDS and CCI:
CSFinfo.org
Scroll to videos
Scroll to greater metropolitan area
Watch everything with cranio cervical instability and EDS in it.
You can google the Brighton Criteria and the Beighton Criteria to get an idea of how EDS is diagnosed and see if you fit with any of the criteria. You do not need to have doughy skin to have EDS. To be diagnosed with CCI you will need a flexion extension cervical MRI and two rotational cervical CT scans, then most importantly a doctor, who actually knows what CCI is, to look at the images. I am seeing that it is very difficult to find an NS who understands CCI and EDS, there are few in the US who correct it- correctly!
Dysautonomia is another one lots of chiarians have, a good website for this one is dinet.org. POTS seems to be the popular type for Chiari and it can add to the headache, dizziness, nausea, and general feeling of dying. I take a simple beta blocker for it and does wonders.
Some OTC things some of us have found to help with symptoms are:
Daily higher dose Vitamin D3
Daily magnesium supplement
Getting checked and treated for sleep apnea
I would suggest new MRIS too. Sue sorry you are going through this, it’s a tough place to be. Some of my friends here offered the perspective that going through this is more a journey, and that feels better to me cause it reminds me there are options and professionals available and that there is hope.
Jenn 
Jen, thank you for the information. I am going to look into EDS. I did have a complete decompression and recently had new MRI which cost me $800 and my new NS wouldn’t even call me with the results. After 3 weeks of calling them the nurse finally called back and said " he said everything looks fine" …that was worth the $. Needless to say I will also be looking for a new NS. One that actually knows what Chiari is.
That’s ridiculous. I would get a copy of the actual radiologist report- when I hear “everything is fine” I assume there are things in the report they just don’t feel like explaining.
Thank you, I’ll have to get a copy of the report and my disc.
Hi everyone,
I haven’t been on here in a long time but I was wondering the same thing. I have never gotten much relief from the head pain in fact half the time it is worse. I had surgery in 2013 in Houston… I recently have started to get the dizziness and staring to blackout every time I turn my head or look up… Which is scaring me because I had to get surgery so save my life because I was getting no blood to my brain. Could I really have brain swelling again? I don’t have a Neurologist anymore because Che informed me that he can’t do anything else for me… Does anyone know of a great Neurologist in Houston/Sugarland area that I might be about to get an appointment with? Or any information that might help me?