Hi guys. Long story short, I have Chiari 1 and have been advised (last week) that surgery is the best option for me. Mine was found d by accident years ago and I only began noticing symptoms over the last year and a half. The last 2 days I have felt very foggy. Today I am so amazingly tired/weak, my hands/arms feel stiff like and I am getting these intermittent headaches that I have never had. It feels like some stabbing into the top and back of my head. Not at the same time though. Then I’m left with a dull headache. Anyway, please give me your thoughts as you can. Thanks.
Thanks for the quick response. I feel ‘strange’. I don’t know if it is all in my head (no pun intended) or if something is wrong. I’ve been having more frequent episodes of shortness of breath over the last week. These type of headaches today are new and like I said, I’m incredibly tired and weak and I haven’t done anything all day. The weakness and exhaustion is what is worrying me the most.
I read through it all. I do get the racing heart that feels like it is jumping around your chest. I had that all thru the night and and some today but it happens all the time, I notice it more when I am at rest.
If you are experiencing shortness of breath, and/or new blood pressure or arrhythmia issues, time to seek care. Or if the pain from the headache can’t be controlled by the pain meds you have at hand. Sounds like your intracranial pressure may be up.
Thanks again guys. It’s so hard to filter through the info on the net. Should I wait and call tomorrow or contact the office now?
I was told by 2 ns in 2 different cities that the extensive syrinx required immediate surgery. One was wanting to do it within 2 weeks of diagnosis. The reasoning was that once the symptoms begin increasing from the syrinx they don’t know how quickly it can advance to irreversible damage.
Is the pain centered in the back of your head or more to one side? Mine was more to the left side behind my left ear and the pain was a unbearable stabbing pain. The dr put me on Tramadol to help with the pain it did work. I had my surgery on June 6 and it did help I would def recommend doing the surgery it has helped a lot I am still going threw some pain but my dr told me my case was a 10 out of 10 when it comes to severity but the surgery went great
I’m happy to hear that your surgery was successful Joe. I’m hoping yours was too, Thankful. The stabbing pains are intermittent and occur either on the top center or in the back. Then I go back to dull headache.
The symptoms can be so very scary, I know how you feel. Mine literally hit me while I slept one night, like a freight train, and nothings been the same since. Mine was brought on by chiropractic neck manipulation. There have been more times than I can count over the last 2 yrs that I was certain I was dying due to the symptoms, rushed to the er to be a guinea pig for the nxt four hours, to simply be released and told I’m ‘fine’. Honestly, I haven’t felt my ‘normal’ since this all started 2 yrs ago, in terms of feeling ‘strange’ and ‘foggy’. I’m 5 months post op and those feelings have become a daily norm I’ve unfortunately had to learn to accept and deal with. Some days better, some worse. My vision, hearing, memory everything affected as if I had a stroke. I don’t think i’d take on the responsibility of telling you yes call or no wait, simply because noone knows you better than you. As it’s been said here, rarely are the symptoms deadly and since surgery is on the table, your doctors are well aware of what’s going on. They believe it will help you or they wouldn’t have suggested it, and unfortunately the symptoms you’re experiencing might be here to stay until something is done. If you’re having doubts you should seek a second/third opinion to put your mind at ease. Hope this helps some 
My situation was exactly the same. Found mine by accident and it explained a lot of issues i had been having. I was told the symptoms could be irreversible and could get wors if not treated. Told i was a good candidate but that it was up to be based on my symptoms. Being in my late 30s I wanted to deal with it now while in relatively good health. I scheduled surgery for two weeks later. I am currently 5 weeks post op and while I am still recovering I have felt a huge difference and a sense of relief. Happy to answer any questions you might have.
Thanks to both of you. I’m Def concerned about having surgery. It’s good to hear that you had such positive results litlzoe. @ Christin - are you glad you had the surgery? As for me, unless I start feeling worse, I think I’m going to wait and see how I feel in the morning. I’ve read about the struggles so many have been through and although it seems mine are coming on quickly, I know that I should count my blessings.
Hi beeba. when you say a syrinx would be a no longer wait situation, do you mean immediate surgery, or do you mean its time to know you have to get it done? I ask because I still cant find a surgeon, & the ones I have met with have all told me different things. I have an extremely big (actually wide) syrinx, & that just really scared me reading your post
Beeba said:
Well your question has two answers. If you are in severe pain then yes you need intervention in the way of pain management to help get you through it and sometimes just break the cycle. Now in terms of surgical intervention - it would be completely blocked cerebral fluid or a syrinx. Now immediate in most medical conditions means rush you into the operating room. In the chiari world immediate surgical intervention means scheduling surgery within a few weeks. There are a few - but rare - more severe cases where you are told do it now or you will have severe complications. Those are more rare but that is why if you know you have the condition at all you must be diligent about doing your follow up mri's and being followed closely by a ns. When severe sleep apnea is involved that would be more emergent. As chiari does not - usually - kill you but sleep apnea is very serious and should weigh strongly on the decision for surgery. Personally - a syrinx would be a no longer waiting situation. Interested in how others answer. Do want to be clear - there are always some more extreme cases but in general the symptoms will tell you if things are getting worse and most know when it is time. Some have been caught totally off guard - yet they knew "something" was wrong but just didn't know what. I hope others answer. And kids are a whole different situation as the problems and effects are different.
Thank you, I fully understand that this is your opinion, but that is what I asked for. The only reason I said it made me nervous is because, again, I havnt found a surgeon, & I have been told so many conflicting things. I feel most secure with the information I get here. I understand my condition shouldnt be taken lightly, but never in my travels has an NS really explained the urgency or consequences. Only you guys have, so again, thank you. I hope my appointments in 2 weeks are productive!
Beeba said:
Jessica, just my opinion - but yes I would be scheduling with a syrinx. I of course would never want to scare anyone into surgery. But that said for me a syrinx is a game changer. This is fluid building around your spinal cord which controls all bodily functions. This is usually a condition where there is little debate. The chiari and herniation can be argued but once fluid is being forced down - you must question why? Things can be worse in the head than seen on the pictures which have lead to the syrinx. Perhaps others will say otherwise. And I have seen others with very small syrinx's wait and see but more than not I see that the progress and people end up having surgery. For me - and just for me - any syrinx I would have surgery as soon as I could. I have not seen one go away without it and my fear alone with what could happen would make this a no question situation for me. With chiari there can be ebbs and flows and symptoms where I can question what is causing symptoms. But a syrinx with or without symptoms can happen to quick for my comfort level. As I said in the normal medical world immediate surgery means now - in chiari world it means you are scheduled within the month. Iam sorry if my feelings on this have made you nervous as that would never be my intention and I do want to be clear this is only my opinion as to what I would do for myself or a loved one. I would feel there was no option at that juncture. I wish you the best and hope you find the right dr and decide with them what is best for you.
jessica said:Hi beeba. when you say a syrinx would be a no longer wait situation, do you mean immediate surgery, or do you mean its time to know you have to get it done? I ask because I still cant find a surgeon, & the ones I have met with have all told me different things. I have an extremely big (actually wide) syrinx, & that just really scared me reading your post
Beeba said:Well your question has two answers. If you are in severe pain then yes you need intervention in the way of pain management to help get you through it and sometimes just break the cycle. Now in terms of surgical intervention - it would be completely blocked cerebral fluid or a syrinx. Now immediate in most medical conditions means rush you into the operating room. In the chiari world immediate surgical intervention means scheduling surgery within a few weeks. There are a few - but rare - more severe cases where you are told do it now or you will have severe complications. Those are more rare but that is why if you know you have the condition at all you must be diligent about doing your follow up mri's and being followed closely by a ns. When severe sleep apnea is involved that would be more emergent. As chiari does not - usually - kill you but sleep apnea is very serious and should weigh strongly on the decision for surgery. Personally - a syrinx would be a no longer waiting situation. Interested in how others answer. Do want to be clear - there are always some more extreme cases but in general the symptoms will tell you if things are getting worse and most know when it is time. Some have been caught totally off guard - yet they knew "something" was wrong but just didn't know what. I hope others answer. And kids are a whole different situation as the problems and effects are different.
I will say this: even though the ns that I chose said that I could not put it off, my surgery was not scheduled for 4 weeks. He actually let me fly out of town for a meeting while I was waiting. He also said that if you have a large syrinx it did not get there over night. Your body has been accommodating over time and it is probably reaching the limits of what it can take without having symptoms. I explained away many minor symptoms over several years. I would actually mention MS from time to time. No signs of that on MRI. How big was the syrinx? Did I miss the width in a previous post?
Very glad I had surgery…only sorry I was forced to wait nearly 2 yrs to have it d/t all the misdiagnoses. I would have had surgery 2 weeks after it all started if given the option. It has definately helped me…I may have to have another surgery but again I was a complicated case.