The one thing that I keep reading that confuses me is the time period between diagnosis and the actual surgery. How many of you have waited and waited and waited? I don't understand the need to wait years for the symptoms to worsen (and quite possibly permanent damage to be done). Any thoughts?
It was "mentioned" on my check out paperwork from the ER this past Friday and now trying to get MRI approved so I can meet with Neuro. But, reading the community posts, I see quite often that symptoms are not enough in some situations or maybe they are just down played. What has your experience been? I need to be enlightened. :)
I was diagnosed May 16th 2011 and had surgery Sept. 30 2011. The only reason I had surgery so soon was because I was moving out of the province and would have had to go through the whole process again. So the secretary at the Surgeon’s office squeezed me in.
It is because not everyone who has Chiari will need surgery. Some people live with it their whole lives and never have a problem. Surgery is dangerous and does not solve the problems. Some patients see great relief and others may see none. Even with surgery the symptoms come back for most patients years later. Surgery is only done when all other options have been take and surgery is the only thing that MIGHT help.
GUESS WHAT?! My MRI is scheduled for tonight!!! WHOOOT! I'm just happy for progress, whatever they decide, I want to know my diagnosis (mm, syrinxes, etc) and what my options are, ya know?
Ok, got it. Thanks for the clarification DR!
DannieRae said:
It is because not everyone who has Chiari will need surgery. Some people live with it their whole lives and never have a problem. Surgery is dangerous and does not solve the problems. Some patients see great relief and others may see none. Even with surgery the symptoms come back for most patients years later. Surgery is only done when all other options have been take and surgery is the only thing that MIGHT help.
I think what made me sad was that many had gotten SO bad that they were incapacitated, with further complications and then once they got surgery they were so much better! I just didn't understand why the Neuro's would wait so long with obvious symptoms. But, I understand the severity of the surgery, too. :)
bflywarrior said:
GUESS WHAT?! My MRI is scheduled for tonight!!! WHOOOT! I'm just happy for progress, whatever they decide, I want to know my diagnosis (mm, syrinxes, etc) and what my options are, ya know?
I was lucky, I am almost 3 years out of surgery and so far have had little trouble with symptoms. I’d say in total I’ve had maybe a month (adding all bad days together) out of the last 2.5 years of symptom days. I felt so good after surgery, I was trying to get up and walk around and get them to open curtains so I could feel the warmth of the sun on my skin for the first time in over a year. I’ve been lucky and unlucky. But I am very thankful for my Neurosurgeon and my follow up Neurosurgeon, for all of their efforts and insights.
ooooo! I love that, NieNie! Those are the stories I like to hear!!!
Just got my MRI done yesterday evening, so I prolly will be waiting till mid next week to hear back, don't y'all think?
I was diagnosed in February 2012 and had surgery in October of that year. I'd had symptoms for years and after seeing 2 useless neurologists I decided to send my MRI's to a specialist. Dr. Ringer from the Mayfield Chiari Center did my surgery on October 15, 2012 and I honestly feel he gave me my life back! I rarely experience my old symptoms and when I do they are a very minor. People warn me that sometimes symptoms return years after surgery but honestly to me even if that should happen down the line the years in between will have been worth it!
Has anyone else had symptoms come and go? My symptoms can be really bad one day and I can feel really good another day.
My symptoms used to vary from day to day. My NS speculated it is caused by outside things like barometric pressure influencing the CSF flow to your brain.
bflywarrior said:
Has anyone else had symptoms come and go? My symptoms can be really bad one day and I can feel really good another day.
I feel like this is an issue with soooo many things. I went to ER back in December for headache and severe dizziness and they did a CT scan and said I had needed to have an MRI because they found my cerebellum to be too low. I never heard a size mm at all. Went to my dr who said he didn't really know too much on it but SAID my reading were 2-3 mm herniation and referred me to a horrible neurologist. I waited 6 weeks to see him and they he just said I'm fine WITHOUT even looking at my scan. When I said I wanted a MRI he treated me like a total idiot and once again said I'm fine and said it was all migraines. I have tried his medication but it isn't working.I finally decided to be my own advocate and have found another dr. Went and picked up my own scans and the report from radiologist said 4-5 mm . WTF why would one dr say 2-3 when the report clearly says 4-5...big difference IMO. I see another dr in 2 weeks and am praying for a better outcome. Im just tired of being in pain.