My symptoms have severely impacted my life (can’t work, can’t drive, can’t continue college), but the neurologist that ordered my Cine MRI says I only need physical therapy (and not surgery) because the Cine MRI showed only a mildly blocked CSF flow at one spot:
Mildly diminished bidirectional flow is seen in the dorsal thecal sac at the craniocervical junction.
Meanwhile I’m dealing with reduced sensation on one half of my body, eyes that dart around constantly and go blurry (slowly increasing my gabapentin to see if it helps), balance so bad I need a cane and walker, stabbing pain in my throat, occasionally brief severe headaches. I always seem to forget a symptom when I try to list them, lol. And the neurologist who said I probably don’t need surgery also thought my main complaint was headache. I was like, “uhh no, it’s the numbness and blurriness and nystagmus and frequent falls”. He then started to warm up to the idea that I might in fact have severe symptoms.
Sitting here twiddling my thumbs while I wait for my records to be sent to the neurosurgeons I’ve been referred to. Nervous that once I finally see a neurosurgeon they’ll tell me to “wait and see” instead of doing any treatment.
So, my question: do neurosurgeons tend to “wait and see” if there’s only a mild blockage of CSF? or does any blockage (no matter the severity) of CSF tend to indicate that surgery is needed?
Hey @wibblywobblybobbly ,
Firstly, Welcome to Ben’s Friends. My name is Merl and I’m a member of the modsupport team here on our network.
Personally, I have had LOTS of experience with CSF issues and unfortunately your experience with medicos is not unique. Often we can report symptoms which are minimised and if the images look okay, then everything is okay (according to the medicos). They cannot feel your pain, they cannot experience your symptoms. You can always seek a second opinion. For a very long time I was told the headaches, the odd symptoms were growing pains. I was exaggerating “Ohh, it can’t be THAT bad…”. Then it was all labelled a psych issue, because “…Headaches? Well, Everybody gets headaches…” Not like these they don’t.
So, I ignored it all and got on with life. One day I’m driving down the road and everything went dark. I couldn’t see. I called my wife who came and got me. Dr sent me for scans, then comes out with “Ohh look what we found…” like it was all something new. I went to see a neurologist whose response was ‘wait and watch’. I wasn’t happy with his response and went to see a neurosurgeon. The surgeon wanted me in surgery ASAP.
That “Wait’n’Watch” approach is not unusual. Let’s face it, neurosurgery is MAJOR surgery and if it can at all be avoided, I would strongly recommend it. There can be a few causes of CSF issues from an over-production, to a lack of absorption. There can also be issues with the flow of the fluid and the positioning of the brain restricting the flow. These are all things that need to be considered by your treating dr’s.
Now I say “… if it can at all be avoided I would strongly recommend it.” And here’s why.
My first surgery was to ‘Fix’ the issue. It did not fix anything, in fact, it set off a cascade of issues. I have since required a further 5 neurosurgeries and at a recent neurosurgical appointment it was recommended I needed yet another, No.7 (Which I’m presently trying to avoid like the plague). I have a VP shunt (a plastic drain tube) in my brain and have had blockages and breakages in the shunt which has also needed medical intervention.
I would suggest that if you are not satisfied with the response you have received, you should seek a 2nd opinion from an independent neurosurgeon.
Merl from the Modsupport Team
Chiari institute Barcelona. I beg you to check it out!
I got this Chiari 1 Malformation, from my dad who wore Agent Orange for weeks in Nam. Fast forward to 2018, my Takata Airbag Overexploding, i was then found to have Chiari, which i was sick since childhood & so were my children & now my grandchildren.
The Surgeon who is the Best Brain Surgeon in our state, said this surgery is so dangerous he refused, & laughed about how i needed the other things doctored, like my hands, burnt face, etc.
Has anyone w/Chiari had shingles on the thumb that travels up to my armpit? It’s getting more frequent & worse each time it breaks out. Yes Gabapentin helps, but i don’t want to be addicted to it
You need to see a neuro surgeon not a neurologist.
This is short and sweet. You need to see a neurosurgeon not a neurologist for surgery. The neurologist will help with any symptoms AFTER surgery but the surgeon will tell you if surgery is needed. They can base the decision off the CINE MRI or just your symptoms if they are bad enough. Surgery does not go by size of the herniation. That’s where a lot of people get confused. You can have a 20mm herniation but have a wide foramen magnum so there for not present many symptoms or you could have 2mm herniation and a narrow foramen magnum so you have severe symptoms. People confuse the herniation size with foramen diameter. You should start there and compare your foramen magnum opening that will tell you if surgery will help your symptoms. If you do not have a narrow opening then spinal fluid should flow normally and brain stem compression shouldn’t be an issue. Basically if your opening is wide enough for everything to still function properly then decompression will not help you.