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If they are a good surgeon they should be deciding based on your symptoms and the amount of CSF blockage you have (have you had a CINE MRI?). The length of your herniation is not really an indicator of the severity of your Chiari. People with large herniations can be asymptomatic while those with "small" herniations can be very sick, or vise versa.
Hope that is helpful : )
PS. If your Neurosurgeon thinks that the herniation size is the only indicator or that you don't need a CINE MRI or if they only do 2 decompression surgeries a year - go get another opinion! This is your health and your choice as to whether you have surgery and who performs it.
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The first hospital that I went to refused to do the Flow Study MRI because I had a built in retainer. I have recently switched Hospitals and Doctors so we shall see what the new Doctor says. Can they decide on surgery without the flow study?
Donna1013 said:
If they are a good surgeon they should be deciding based on your symptoms and the amount of CSF blockage you have (have you had a CINE MRI?). The length of your herniation is not really an indicator of the severity of your Chiari. People with large herniations can be asymptomatic while those with "small" herniations can be very sick, or vise versa.
Hope that is helpful : )
PS. If your Neurosurgeon thinks that the herniation size is the only indicator or that you don't need a CINE MRI or if they only do 2 decompression surgeries a year - go get another opinion! This is your health and your choice as to whether you have surgery and who performs it.
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It sounds like you have lots of symptoms to go on even without this imaging study. We'll have to see what your NS thinks about it. There are no hard-and-fast rules. Have you seen the sponsored conversation about Questions to Ask Your Neurosurgeon?
I don't think that anyone will let you have an MRI with an implanted metal device, as it wouldn't be safe for you. How did you get diagnosed if you can't have an MRI? How would they do post-op check ups? CAT scans? Can you have your retainer removed temporarily if you need to have surgery so they can do all of the normal tests?
Most places let me have MRI's, but there aren't many places that perform the Flow Study. I have never been told that my retainer was an issue until now. I saw all the questions to ask the Neurosurgeon. I have seen one Neurosurgeon so far that said by my measurements that my Chiari can't be causing all my symptoms. I was not pleased with him so I have looked elsewhere. He did not specialize in Chiari and I figured I didn't want someone like that doing the surgery. I have two young kids at home and I feel like they are suffering along with my husband. There are days that are good, but there are days that I can't function. I don't feel like anyone understands unless they have this same condition. I am just hoping that this new Neurosurgeon can give me some answers.
Donna1013 said:
It sounds like you have lots of symptoms to go on even without this imaging study. We'll have to see what your NS thinks about it. There are no hard-and-fast rules. Have you seen the sponsored conversation about Questions to Ask Your Neurosurgeon?
I don't think that anyone will let you have an MRI with an implanted metal device, as it wouldn't be safe for you. How did you get diagnosed if you can't have an MRI? How would they do post-op check ups? CAT scans? Can you have your retainer removed temporarily if you need to have surgery so they can do all of the normal tests?
I certainly hope so too! Good luck with this new doctor!
Thank you!
Donna1013 said:
I certainly hope so too! Good luck with this new doctor!
I’m 4 months out and I had surgery with a specialist here inN.C…My journey started 27 years ago and I’ll not even go into all the paths I have taken.There’s so many Drs. involved at least 12+ medical and lots of therapist,chiropractors,so many I can’t keep count.I will tell you from what I have experienced,just go to the specialist,if you have done your homework and feel you understand the symptoms.If a NS goes only on tests alone,you are at the wrong place.The specialist will go on symptoms but they know what test are the best too.My NS did a different kind of exam and did a special MRI and a tilt table test.The tilt table will help determine how the brain works with the heart and the blood pressure.You may be told there has to be a certain herniation but that is so not true,only you know what’s going on in your body.In my case the tonsil was pressing into the brain stem and the symptoms were so severe,but that wasn’t showing up on the MRI.When my surgery was done the NS said things were worse than he ever thought they were and we were both glad he did it.The recovery is going well but this takes a long time,about a year is what I’ve been told.Go with your intuition and listen to your body.The NS here in N.C. is Dr. Rosner and he is a pioneer in this field,
he has patients who travel from all over.