Chiari Online Support Group

Should I?

Hi all! I made a post a few months back about some of my “weird” symptoms that I experience.
Thankfully none of my symptoms have worsened since then so I am grateful for that. I have an 8mm chiari (since last checked in may 2018). My symptoms include: occasional dizziness, occasional headaches, facial spasms/twitching, brain fog, shakiness in my hands, twitching of my hands and lower legs that comes and goes throughout the day, constant ringing in my ears 24/7, and I think I’ve developed anxiety due to my chiari.
As I said, none of the symptoms have really worsened at all. They all come and go and some days are worse than others.
At my last visit with neuro ophthalmologist a few months ago after we went over my symptoms he said that he thinks I am going well and that surgery isnt an option he would reccomend to me at this time if I can avoid it. I agreed with him on that. If I can function like this I am fine with it. I’m kind of used to my symptoms even though they are very annoying and somewhat worrisome. Plus, I’m pretty good at managing them.
But now I’m not sure. I’m sk scared of what’s going on with me now. Its causing me to worry 24/7 around the clock and I’m not sure if I should get the surgery or not. I’m terrified of the surgery. My aunt (approximately 40 years old) had 3 surgeries about 5-7 years ago and hasnt been the same since. She can’t work… she actually became worse afterwards. That’s what I’m most afraid of. I dont want to risk possibly being in worse condition than I started off at. I know I cant compare my case to hers ect but just knowing that there is no guarantee scares me to death. But I have been thinking about it as a possibility. Any advice?

Taylor, if you say you COULD tolerate your symptoms now, then DON’T have the surgery. Save that as your very LAST option. I was on pain killers for SEVERE headaches and couldn’t live with it anymore after 5 years of every non-surgical intervention that I was aware of. I am now off pain meds, after Surgery in 2015. I am starting to worsen again, so not sure surgery was the answer. I feel for you SO much in this decision. Good luck.

Hey, Taylor… I am going to be proactive for the surgery option. My neurosurgeon told me that your best chances of recovering from Chiari decompression surgery is 1) the younger you are when you have it, and 2) the sooner you have it once Chiari symptoms start in. My neursurgeon did nothing but Chiari decompression surgery, so I feel he knew what he was talking about. In spite of this news, I recovered 75% after 10-years of symptoms - and I was 52 when I had the decompression. The neuro-doc told me my chances of full recovery were not good. But, hey. I am VERY happy with 75% after living 10 years close to total paralysis and brain-dead-ness. I do have permanent damage to my brain stem BECAUSE I waited so long for the decompression. (I was misdiagnosed all those years… not my fault!) With Chiaris, parts of your brain: cerebellum, brain stem, etc… are getting squished! They are not supposed to be. Why do you want to live with that? (Besides - the brain squish also acts like a plug - blocking cerebral-spinal fluid flow. That restricts any medications from working properly. If at all!)

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I have had 3 brain surgeries since June 2017…I would definitely recommend that you do your homework first before you go through with the surgery. It makes the world of difference by having the right nuerosurgeon which is familiar with chiari and has a good success rate. I believe that I am one of the few cases where my body is just against me but I also chose the wrong nuerosurgeon for the first 2 surgeries…like I said it makes a whole lot of difference. Good luck to you hun

Hello I can understand that the symptoms are very worrisome but I think if you’ve been able to tolerate the symptoms up to now try to hold on, until you feel that it these symptoms has enable you. I’ve been diagnosed since May 2015 and I to have been dealing with similar symptoms but now I have a severe left pain shoulder that is reaching up into the back of my head and I will not consider surgery for now. Tomorrow I have an appointment with a new neurologist hopefully the results will be good. My prayers are with hope you get better but try to hold on the surgery.

Interesting point of view… I have been thinking for quite some time now that none of the medications they have offered my daughter have worked as they expected and that it is possibly due to the compression. No one in our circle of medical professionals has ever mentioned that may be the reason. Thank you for sharing your experience and thoughts. I am following as many people here as possible in hopes of helping my 11 yo daughter. She was diagnosed with Chiari in August and has become very symptomatic. The neurologists & neurosurgeons we’ve seen have tried to explain away her symptoms with everything from migraines to anxiety/depression. None of the medications have helped her at all and many have given her terrible side effects (including a severe dystonic reaction that scared us both to death). We are currently waiting for a second opinion with Boston’s Children’s Hospital.