Can you have periods where you feel okay and then feel absolutely terrible for 2-3-4 weeks? or is it always there making your life miserable.
From my experience… …Yes, there can be good days. My situation is not directly Chiari related, but it is neurological and I have a VP shunt. My symptoms fluctuate something horrible. I simply never can tell. I often explain it like this:-
"...Some days I can leap a tall building in a single bound. (OK, so a bit of an exaggeration ) Other days I'm lucky to be able to crawl out of bed...."
Some days my balance goes a miss, some days I get an odd numbness/tingles down one side, some days my vision plays tricks, some days one side of my face drops and then some days I can have a combination of each and every one of these. And then of course the joys (NOT) of the ever-present fluctuating headache which range somewhere from ‘I’m OK’ to ‘Someone please chop my head off’. I just never can tell when, why or how ‘today’ is going to go.
Merl from the Moderator Support Team
Dear Janey, So sorry to hear you are still having symptoms. Are you post-decompression surgery? Prior to my surgery, I was 24/7 in agony, brain dead, and paralyzed. After the decompression surgery, I recovered 70%. It was my brain stem that received the most damage. The brain stem is in charge of your body’s cycles; wake and sleep, menstral (if you’re female, that is), biorhythms, etc… There is some kind of biological clock in the brain stem - and mine got damaged from the Chiari ‘squish.’ I believe that because that biological clock in the brain stem got damaged,
I now experience regular re-occurring Chiari symptoms - or ‘flare-ups.’ Even 8 years post-decompression surgery. It befuddles everyone I know - but without fail, all my Chiari symptoms will return every 4th day (for 24 hours) and every 12th week (for the full week), and then leave. And… I return to ‘normal!’ I have been able to map out a calendar for years in advance for my ‘crash’ days - and every single one shows up right on time. During the week-long ‘flare-up,’ the symptoms return much more severely and I can barely endure it. I do know that the flare up ends, though. And, that helps me through it.
There has not been a single thing I can do to stop a scheduled every-4th-day re-occurring ’ crash’ day from coming. However, I can bring on unscheduled ‘crash’ days with stress. Emotional stress. Physical stress - like a hard workout - doesn’t seem to bring on more ‘crash’ days. But, stress that taxes the Central Nervous System - like mental or emotional - stress - will guarantee bring all my Chiari symptoms back on quite quickly at any time. That is why I have never been able to take on an outside job since decompression surgery. The rushed, precision lifestyle required for the American workforce triggers the stress-crash response in me within minutes. Do you know if there any triggers that are bringing on your bad days or weeks?
Everybody’s recovery is different. Everyone’s CNS is different. I have never met anyone else who has experienced re-occurring symptoms - the ‘crash’ days - to such regularity like I do. But, it might make sense that emotional stress might be bringing on bad stuff. I hope you see improvement - or at least are able to enjoy the good days.
Beth and Mod - thank you both for relating your experiences. I have not had surgery, in fact it’s not likely I ever will because my chiari was an incidental finding on my MRI and was noted as “borderline.” So fat chance of any of my doctors thinking that is important, despite the fact that I have had 4 brain MRIs for 1) vertigo 2) severe headache 3) weird neurological symptoms that no one can explain and 3) dysphagia - all are chiari symptoms, as well as a neck MRI for neck pain and 2 CT brain scans. It was only on the last MRI that it was noted as “stable compared to last MRI” (but never even noted on the last MRI).
I flucuate up and down so much, right now I’m in a downward spiral, I had a terrible headache behind my eyes for 2-3 weeks, that finally went away (doctor said it was migraine and to go get my eyes tested) and now I just feel super weak, my legs feel like jello. Not sure if this could be chiari related or not.
Beth - so interesting that you have clockwork scheduled of flare-ups. It’s too bad that surgery didn’t fix you 100%, from what I understand at best it’s a 50/50 chance and the best thing it can do is stop the progression. I know what you mean about not working. There is no way I could work feeling the way I am right now. In fact I retired a year ago, much earlier than I planned, because my flucuating symptoms were too much for me to handle with a very stressful job.
Even if a doctor were to finally acknowledge that yes I do have Chiari and yes that is what is causing my symptoms I doublt I would have the surgery unless it were a matter of life and death. Just knowing this is why I feel the way I do would be enough to satisfy me, because otherwise I will continue to think the worst case scenario about my symptoms.
Mine symptoms are related to stress as well as neck position when I sleep I found that when I sleep on a awkward position (falling asleep in the car or sleeping with different pillows that I’m not used to in hotels) my symptoms are terrible and will last 2-3 weeks so I’ve purchased a memory foam pillow and literally take every where with me I have also found cbd oil has helped with my stress I still have bad days but there as not as many and they don’t last past as long hope this helps.
I have periods where I can barely manage . This includes dizziness, numbness in my face, head and arms, headache and exhaustion. I have a 8mm syrinx but the doctors told me that this shouldn’t be a problem! I believe that it is causing a lot of my issues. I had decompression surgery years ago. It helped me. I worry that the syrinx will cause more damage.
As another member, Beth states in another post Negative help from the neurologist
“…the length of the hernia makes no difference in the severity of Chiari symptoms. A plug is a plug…”
For some % of people, they are symptomatic between certain perimeters, but some can also be symptomatic outside of these so called perimeters. Personally, if you’re symptomatic, I’d be trying to seek a 2nd opinion from a professional knowledgeable in Chiari.
Merl from the Moderator Support Team
I have flare ups. Some days I feel ok where I have mild symptoms & then days where its so debilitating I can’t even move. Lately, I mostly have bad days with head pain, muscle aches w/tingling & numbness, shoulder & neck pain, etc…I’ve just recently told work of my chiari & no one knew what it was & said they would’ve never known by looking at me.