Just saw the neurosurgeon last week and says he is quite surprised that I am still doing what I am doing after he seen the MRI discs and doing the general neurotically tests. He says that if I do the surgery sooner than later that paralysis may kick in but that I would still suffer from the headaches. But he is also not booking for surgery until January or February. I think that I should get a second opinion. Also, how do I explain to my parents that yes I have had head traumas as a child, but this is not necessarily their fault for what’s happening to me. Anyone with success story? This might ease my parents concerns! They are very supportive no matter what I do!!!
Get a second opinion if your Doctor is being a pain!! Not sure what your actual diagnosis is- what is he saying about paralysis? I had decompression surgery June 2. Doing good right now. I had some dizziness and balance issues a few weeks ago, but they seem to be gone now. Head hurts a little sometimes- not bad enough to take painkillers. Still get tired and take naps during the day.
Chiari is congenital defect so you’ve always had it. Not something parents are responsible for. If you want details about surgery, I can send some! Hang in there!
Thanks for responding, the reason for my parents concern is that my dad said when I was a year old and learning to walk I had hit the back of head on one those old school baseboard where they were very thick. My dad said that he could litterally put the width of his finger where I hit my head. The way the doctor had explained what’s needs to happen to me for surgery is where he will take a piece of the skull out and put a sponge like substance in replacement of missing skull. This is to allow the spinal fluid to flow thru my body. The syrinx (I think I spelled it wrong) has increased in size because of the lack of fluid flowing through my body. Is this similar to what your trying to explain to me or is decompression different from what I said? Doctor also says have Chiairi Type I.
Decompression Surgery: the surgeon cuts through muscle and tissue in the middle of the back of your head. He will fold those to the sides and will then cut a part of the skull bone at the base. This is to make more room. He may also cut off part of the first cervical vertebra (C1). Then he may cauterize the tonsils so they shrink back up into the skull above the foramen magnum. Some doctors then put a dura patch over the cerebellum. Others do not. Then they stitch everything back together.
My surgery was about 5 hours.
When your doctor says sponge like substance, I don’t know what that is. The main thing is that they move the cerebellar tonsils back up into the skull so they aren’t blocking the CSF flow. I didn’t have a syrinx.
As for your concussion as a child- hard to say if that caused your Chiari. Most Chiari are birth defects where the skull is just too small for the size of the brain.
Use the spoon theory! That helped me with explaining to my friends and family ! If you don’t know what this is google it! Its a wonderful tool so peoole understand . I had decompression last yr in Sept.
So for delay in response. Thank you for advices it’s not that the doctor is a pain but just scared of becoming paralyzed because of too many people depending on me. But I have started the process of getting the surgery date but I also getting a second opinion this week. Found this other doctor’s number on web who supposedly deals with Chiairi. Thanks again everyone!