Saturday, October 25, 2014
Wednesday, January 13, 2010 Ericaneedshelp, Community Member, asks

Q: Migraine and chiari malformation

I have been through three neurologist and countless medications and treatments for my migraines for the past 4 yrs. I was recently diagnosted with a type 1 chiari malformation, although terrified of this condition I'm glad they finally found something. My doctor tells me this is not the main reason for the migraine and want to continue with the meds, I feel like that all I've done for 4 years is trial and error with medications. I'm not crazy with the thought of brain surgery either but I don't know what my options are at this time. My question is does anyone else have both chiari and migraines? And if so what kind of meds are you on? And also has anyone had the decompression or shunt surgery, and what should I expect?

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Answers (5)
Nancy Harris Bonk, Community Member
1/14/10 9:23pm

Hey there,

 

Glad to hear you've found something. I would suggest going to a real expert who knows Migraine and chiari. The Chiari Institute has great information and you may be able to find one on this site: Conque Chiari.

 

Maybe others will be in to help too. Have you been over to the forum?

 

Good luck

Nancy

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ashbiller, Community Member
1/20/10 10:35pm

Do not let the doctors tell you this.  I went to 3 neurologists and they also said my Chiari Malformation was nothing to worry about.  I ended up un a wheel chair for 3 months because of compression of my brainstem.  I had really bad headaches that I thought were migraines.  I finally decided to contact the Cleveland Clinic because they have a wonderful Chiari program. I went to see Dr. Xiang Di and he put me on for decompression surgery the same day.  I had the surgery in Sept of this year and went back to work 3 weeks later in the busy office I work for.  He does the procedure through an endoscopic approach.  It was the best thing I ever did.  My headaches are not completely gone and I am walking again.  You need a Chiari specialist.  A regular neurologist will not give you the answers you need.  Honestly, I had never had any surgery before, but this decompression surgery is not bad.  My life has changes so much because my headaches are gone.  Just hang in there and find a Chiari Specialist.  Dr. Di is the best!!!!!

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Ericaneedshelp, Community Member
1/21/10 12:06pm

Thank you so much for answerig my question. I have been doing as much research as possible on chiari and am in the process of filing for disabilty because my migraines have gotten so bad. I am terrified about surgery though I am near the Cleveland Clinic by about 2 1/2hours I actually seen them once for the  migraines. Again thank you for answering.

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Lou, Community Member
4/21/10 11:44pm

This is all so helpful to me! My 11 yr old daughter was recently diagnosed with Chiari Malformation.One neurologist and 2 Pediatric Neurosurgeons said she needed the decompression surgery.I went to one last Pediatric Neurosurgeon(he was highly recommened). He actually said it could be migraines and to try medical managment,see how it goes, before doing the surgery.Now I am so scared and confused.She has some Headaches,but more neurological issues with pain,numbness and tingling to right side.I have one question for those who had the surgery....Was the Dura touched?  Did anyone have a patch?  I am curious.  Please help and thank you!  Also, I personally suffer from migraines, and I just am not sure if this is what she has.

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lisariu, Community Member
7/13/10 1:09pm

Hi, I have recently been diagnosed with Chiari malformation (type 1) with syrinx. I have also suffered from migraine since I was 11. My very first migraine paralysed my rt side for nearly 3 days and I had lots of tests as a member of my family had a brain tumour (so they did loads of tests to rule that out). These days I only get about 1 migraine every 6 months or so (unless I'm really looking forward to something, or if I am 'dazzled' by bright lights which seems to bring one on). I am not sure whether there is a connection between the two and I don't think the experts know either. I have had many symptoms over many years and they are getting worse. I had the 'usual' problems when I went to the doc about my other headaches and other symptoms, but everything was always put down to something else. I was actually relieved initially when 'something' showed up on the MRI, but it was short lived when I started researching the conditions. I have got over that now, but am having to really push to see a specialist in Chiari. At the moment, I am under a neurosurgeon, but think his speciality is MS not Chiari. Anyway, I'll sort it out sooner or later. No-one has mentioned surgery to me, but I think its recommended if you have syrinx too (although the longer you have symptoms, the less likely it is to work).  

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Nina, Community Member
10/29/10 12:57am

I suffer from Migraines and I also have elhers danlos with chiari 1. I know how you feel.  My migraines have gotten so bad that I don't remember what happens on the day that I have one.  I have suffered from migraines my whole life and they have gotten worse as I get older.  The doctor has given me so many meds.  I really can't name them all.  One that I have found that help is topomax and Relpax.  It will not take them away but it will make them were they don't come so often.  I am truely sorry you have them I would not wish this on anyone. I truely hope the doctors find a med that works for you.

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By Ericaneedshelp, Community Member— Last Modified: 03/24/11, First Published: 01/13/10