I am a 40 year old female. I had a Chiari 1 with a 8mm herniation. It was first diagnosed in 1998 but full blown symtoms (symptoms) didn't begin until 2003. I had my surgery St. Patty's day 2003. I was good until 4 days after I was discharged I was rushed back to the hospital with spinal meningitis. They next year was awful. Neurologists thought I was crazy, making up the fact that I was still having symptoms. I got thru it, but it was hell. So I just started having headaches again, numbness in my legs, horrible back-neck pain, and severe memory loss. I just want to know if anyone out there has had anything like this, so long after surgery, also I am a terrible speller! So forgive me. Thanks everyone!
I can't speak for the length of time post surgery as I am only 9 months post op but I can totally understand what you are talking about. Many of my symptoms did not go away after surgery (though some important ones got better) and I was pretty disappointed. Then, when I went looking for some answers as to why...it was the same thing, just weird looks and suggestions that don't make sense and somewhere along the way you just realize that they aren't going to help you. Neurologist have been no help to me at all either before or after. But one thing I have decided is that I am going to keep pursuing things and not just sit back and "accept the fact".
So my suggestion to you and believe me, I know how hard it is, is to start pushing for them to do some follow up tests. Those symptoms coming back could mean that you have had a re-blockage for some reason. You may have to face some cynical Drs, I have too, but we are the only ones that are REALLY concerned about our health so we have to be our own advocates.
Good luck to you and please know that having this forum means that you are not alone in this!!
hi leelee and welcome to our family! i hope you will find the support and answers you need here....i know it's been a God send for me! i'm sorry you're back to square one and having problems again.
was your first surgery done by a chiari specialist? do you have any other conditions like a syrinx, eds, ra, other spinal issues? there doesn't seem to be a whole lot of rhyme or reason with the way chiari works....for some of us, we have the surgery and never have another problem, others have it and some symptoms go away while others stay. some have the surgery and while some symptoms go away, other new ones develope or for some, nothing changes at all. and for some, their symptoms get worse. but surgery is the only option we have at this point in time to stop the progression of chiari symptoms! it's a double edged sword, to say the least and one side is just as sharp as the other!
my humble suggestion is to find a cm specialist and go see him. see if you can at least get a current mri of your brain and spine and go from there. like carolyn said, you are amongst friends here....friends that understand where you have been and where you are. i hope you will keep us posted with your progress and good luck!!!
I just had surgery 2 1/2 weeks ago. My doctor told me that I could continue to have some of the symptoms like hand tremors and ringing in my ears. The most important thing is that the head and neck pain is gone. But I have read on here that if you get the headaches again, it is usually around 5 years postop. Also, my doctor said that the surgery does not cure you but just slows the progression of the chiari. Hope this help!
I am so sorry u r dealing with these issues and I do know it is possible to get all of this back even after surgery or as a result of it or a related condition.
May I ask, were u checked for a syrinx?...tethered cord?.....Intercranial hypertension?
When was ur last MRI?...did they check for scar tissue?
And lastly was ur NS a chiari specialist and will he look at u know to help u?...if not, try to find one that will...we do have a list on here for the US and Canada.....to help u get started on research to find the right dr...please note u may have to travel to get to one.
I hope we r able to help u figure out what is going on, and offer support I am sure will help.
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