Ok, so after being treated like I was an idiot for suggesting that Chiari was the root of my problems and symptoms ther verdict finally came in today. The results from my CINE MRI and cervical MRI came in today. The nurse from the Neurosurgeon's office and told me that the "Spinal fluid flow suggests a real Chiari Malformation and surgery would be suggested to fix the problem". See, my doctor doesn't consider descended cerebellar tonsils a CM, you have to have a CSF flow blockage of some kind. Anyway, I'm wondering what to do now. I feel like at least they acknowledge my Chiari now and are willing to do the surgery, but at the same time it's brain surgery and I kind of wasn't expecting that to be the answer since both my Neurologist and Neurosurgeon were so convinced the Chiari wasn't the issue. I'm also ticked off that I've been on steroids to treat the Occipital Neuralgia my Neurologist was convinced was what I was suffering from instead. Anyway, I wanted to ask all of you Zipperheads some questions and get some feedback if I can.
Medical facts about MY case:
-CSF flow blockage of some kind
-Have had head MRI with and without contrast for initial diagnosis
-Have had CINE MRI without contrast only of head and Cervical Spine
-Diagnosed with complex migraines 6 years ago
-No Triptan migraine meds work--I've tried them all except Zomig & no other meds tried have worked--done Elavil, Cymbalta and a round of steroids
-Percocet doesn't always help pain I have in head, neck, shoulders, collarbone
Questions for the Zipperheads:
Would you do the surgery again if given the chance?
Should I ask for a full spinal MRI to check for syrinx and tethered cord before doing surgery?
What type of dura graph did you have? Bovine, cadavar, other and did you have a bad reaction?
Did you get meningitis after surgery?
Have you had to have any revisional surgeries?
How soon after could you drive?
Was your memory effected by the surgery?
What pain meds were given in the hospital and while at home and how long were you on the meds after the surgery?
Did you try any diuretics to help with CSF flow and did they actually help?
I think that's all for now. If anyone actually read this novel of a post, THANKS SO MUCH!
-First and foremost I would definitely have the surgery again mine went great! I was doing so bad before it that pretty much anything was better than having to continue in that pain.
-I had mris of my head (with and without contrast), c-spine and t-spine so maybe a full spine mri wouldn't be a bad idea.
-I was fortunate enough not to need a dura graft he only had to hatch my dura so that when it healed it was a little bigger. I had a bone about the size of a half dollar removed and a part of my first vertebrae also.
-I did not get meningitis nor have I had any revisional surgeries but it hasn't even been a year since my first one.
-It took a while for me to drive but I was 16 at the time so I always had my parents and sister to get me where I needed to be. I think it was about a month but I don't fully remember.
-I'm not sure if my memory was effected or not, I do have problems remembering things now and trying to find the right word that I want to use but I was having some of that before too so I can't say if it got worse.
-I was on a morphine drip in the hospital and I had a button that I could push every 1/2 hour for a boost (lets just say that I wish it was every 10 min that I could push it) I was on vicadin when I got home for a couple weeks i think.
-my scar is like 5 inches and they shaved almost the whole back of my head but my hair was long enough to cover it so no one noticed unless i put it in a ponytail. unfortunately it still hasn't grown back all the way
-there are pics on my profile
- one more thing, I would try to see a different doc, especially if the one you're seeing now didn't acknowledge your chiari in the first place
Thank-you for your input! May I ask what your herniation mm was before surgery? The Neurosurgeon I saw is the chief of Neurosurgery at Emory Hospital in Atlanta, so he's kind of the best of the best around here since there are no Chiari specialists that are close to me, or that accept my insurance. So, it's not that he wouldn't really recognize it, he just doesn't recognize Chiari as Chiari unless there is a spinal fluid blockage because without a blockage, I suppose he thinks the symptoms are treatable and not really "threatening". Anyway, I've only seen him once and they were very nice today and helpful when they called with the CINE results.
No problem! My herniation was 10mm. I only had a slight blockage of CSF and was told that it was my choice whether or not I wanted the surgery and that he would do it if I wanted. My surgeon isn't a specialist either but has had a few other chiari patients before me all with great results so I was confident that he could do the job. He also said that even though my blockage wasn't significant my symptoms were definitely chiari related just by my description of the pain and he checked my eyes and said he could see the pressure or something.
I am so glad that they were a help with the CINE results and I hope they continue to help you and that you get the best treatment possible!
After having been told I needed this surgery, I would like to share with you my experience. First, the MRI I had done was interpreted incorrectly by the first NS and radiologist. Turns out the slice was not at the exact midpoint. So i spent the last 3 months of my life in complete agony thinking I needed brain surgery until I went to get a 2nd and 3rd opinion by a couple Chiari specialists, Dr. Oro being one of them.
It turns out my flow is only mildly reduced and that surgery would actually cause more harm than relief. Turns out the majority of my symptoms are due to cervical spondylosis with a potential component of occipital neuralgia.
Long story short - Definitely see a Chiari specialist or an experienced NS who sees about 8-10 cases a month. If you're case is on the borderline, surgery may do more harm than good.
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