I have not had the surgery and most likely will not unless my doctor says i absolutely have to. I have alot of minor headaches and some black out spells but i wouldnt necessarily say my symptoms have worsened since i was diagnosed. My nuerosurgeon actually talked me out of the surgery because of how mine is on my spine i should technically have alot of difficulty walking and i dont so he thinks the surgery would cause my ability to walk to either be messed with or non existent. explore your options before you let a doctor cut on you for sure!
My daughter, who is 14, has suffered permanent nerve damage from her Chiari. She has no sensation in her right hand and has fairly bad numbness in her right foot. She has trouble controlling any small motor movements. Her left hand started tremoring right at surgery time. She can no longer write and needs help with buttons and snaps while getting dress. She will be in adaptive PE from now on and is having to find ways to adapt to live with her disability.Her surgeon told us that while the surgery was not likely to be able to reverse these symptoms but without it they would progress to her left side and could lead to even paralysis. Her herniation was completely blocking the flow of the CSF. I know there are different degrees and sizes but I shudder to think of where we'd be if we hadn't had surgical intervention as soon as we did. The last MRI showed that the syrinx is draining on it's own and things are progressing. Her balance is better and while she still has headaches they aren't nearly as bad. I am so glad she had the surgery.
Hi Jessica,
I was diagnosed with CM1 too late and almost became a quadriplegic.My CSF was 98% blocked & it was pushing my C Spine verterbrae out. I had to have my C Spine rebuilt at the same time as my CM surgeries. The surgeries lasted 16 hours. I had a Geniculate Neuralgia & had MVD surgery in 12/2004. I went back for a follow up check up in 9/2005. I had gone back to work full time & only symptoms were neck pain and headaches I had all my life, but nothing I considered major. I didn't have any idea something that serious was wrong. I will never forget the next day my NS called and told me to pull over on the pkwy, that I had to get back to Pittsburgh for emergency surgery. I didn't know or care what Chiari is I just didn't want my daughter to have a mother that was a quadriplegic. I also saw 52 specialists just to get to this NS for a correct diagnosis. When I was pregnant with my daughter in 1993 I had a MRI because I had a migraine daily while pregnant. The results showed the Chiari with a 15mm herniation then & I was never told & it wasn't followed up on.
I guess the reason I am telling you this is so you know if you have a CM & don't have it monitored what can happen. I live daily in pain and walk around like my head is screwed to my spine which my PCP laughs and says ..."well it basically is."My vision has been affected, so has every part of my life.
I have only told two people to have surgery.
My best recommendation is if you decide not to have surgery........ please just keep it monitored. You don't want to live like I have to.
Tracy Z.
thank you Tracyz for sharing. I do plan on having it monitored. Its just unbelievable to me that not 1 doctor has mentioned that to date. I figured it stands to common sense, but after everyone shared their story with me, I fully understand how important it is. It is practically a miracle I was even diagnosed at all, having taken so many MRI's already for the symptoms over the years, but still not recieving any information or options from doctors. I am very grateful for the chiari family here!
Thank you Dr Trumble for your input. I understand what you are saying about using a neurologist if you dont want surgery, however, it is hard to decide whether or not surgery is the right option when I have not been able to find a doctor, neurosurgeon or not, who is taking the time to explain my condition to me. I understand the measurements of the herniation is not indicative of the severity of the situation, but i never even heard the term herniation if not for this group. 1 NS even told me (after I asked) I had no herniation & to stop listening to people online, as he was showing me my MRI, telling me how my brain has grown significantly under my skull! It is very difficult to decide what is right for yourself with this kind of medical attention. Every spare minute I have is dedicated to hunting down a descent NS, & informing myself. I am glad you mentioned possible narcotic addiction! That is absolutely a concern for me. I am currently taking lyrica, which I am ready to ditch, doesnt do a thing for me, & percocet, which does help with the pain, & is probably the only reason I get any sleep at all, but I worry about being on it long term. I cant even find a doctor who reviews my medication! I have a few more doctors to see, then I have hit the end of the road with insurance, so my fingers are crossed.When I find a doctor with chiari experience, who takes the time to evaluate my symptoms, history, & medication, then maybe I can be on my way to the right decision for me.
Thank you for asking this question. I have been wanting to ask it myself as well.
I actually had one surgery. That surgery didn't work. No improvement.
I have Syringomyelia (Syrinx) as well.
Surgery has been recommended again and again.
I am afraid of getting an inexperienced uneducated doctor. In my area, the doc that locals consider "brilliant' has done the procedure on children and only 3 adults. And I don't have the insurance I had the first time or the money to travel.
So, I am putting it off, worrying, and not sure what to do. Risk a substandard doc on already controversial procedure or just let nature take its course?
My first surgery was endoscopic, dura was only split and not opened and my skull and vertebra only shaved not removed. The 'traditional' surgery scares the heeby jeebies outta me. Plus I am not as healthy as I was first go round. Higher risk.
And I have kids...Not sure I am as willing to risk it as the docs are. ya know? And its not like docs have been the most trustworthy people i have known in my life.
I can totally relate to you, Just Whisper! except I havnt had 1 surgery yet. I have had zero luck with doctors myself, & my insurance is a huge issue as well. I have been told that after 1 surgery, multiples are more complicated due to cutting into places that have already been cut in to. What area do you live in?