Chiari Malformation Community
Chiari Type 1 Malformation
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Chiari Type 1 Malformation

I was diagnosed in May 2012 with Chiari Type 1 Malformation with a herniation of 6mm. I have horrible migraines, constant pressure in the back of my head, dizziness, trouble concentrating, trouble matching
my thoughts and words, weakness, fatigue, blurred vision and numbness and tingling in my face, hands, and
feet. I have also been diagnosed with Meniere's disease which deals with ringing and buzzing in the ears as well
as hearing loss. Well today I had a flow gated MRI...problem is there is no obstruction of csf. It's a problem because the neurosurgeon now says my
symptoms are not from my Chiari. So now I'm lost and don't know what to do! I live with tremendous pain everyday with it getting worse along the way.

Please say someone out there knows what I'm going through...any help is appreciated.
16 Comments Post a Comment
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Avatar_f_tn
Hi there.  It sounds like chiari to me.  I have ALL the same symptoms.  It angers me that your dr said that, because, its not only the flow that causes problems, its the pressure.  I was diagnosed with chiari type 1 in Feb 2011.  It wasnt until after I had my daughter in 2009 that the symptoms really became unbareable.  Pcp ordered an mri just to be safe, and every day Im thankful he took a chance with that.  I had a 9mm herniation that quickly grew to 13mm in a month. Neuro wasnt sure about surgery, but I explained how crippling this was for me.  How the quality of my life was literally sucking because of this.  He agreed to do surgery after that. I had decompression surgey in June 2011 at Mass General in Boston, MA and felt amazing immediately afterward. He even said he was glad we did it because there was soooo much pressure, no room for my brain.  It was about 4 months later, all my symptoms slowly started to return.  After several mris, over the course of a year, it was apparent that the spinal fluid was building up somewhere.  Neuro was hopeful it would fix itself, but it did not.  In May 2012 neuro tried to aspirate the fluid out as I had a dizzy spell that was going on 8 days straight.  It helped briefly, but the fluid built back up.  I am currently recovering from my second chiari surgery (Jan 10, 2013).  Neuro thought the patch on the dura had a leak, but the problem was beyond the dura and it ended up being the arachnoid layer that for some reason had delaminated itself and created a pocket collecting the fluid, therefore, bulging and causing pressure on my brain and the dura patch.  I encourage everyone; if you know something isn't right than most likely you're right.  I wasn't stopping until I got answers and come to find out I was right and yet again baffled drs. The fluid literally squirted out this time because of all the pressure. Don't be afraid to ask for more tests or get stern. No one knows your body better than you do.  You are not crazy. Hopefully, this is helpful.  Get answers or a second opinion, hell get a third if you have to.  No one deserves to live like this, trust me I know exactly how you feel!  Best of luck dear.
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Avatar_f_tn
Thank you so much. I have been to a neuroligist last year and she didn't seem to know what to do either. I am so tired all the time and the pain / pressure in the back of my head never goes away. I'm so tired of feeling like this. The NS I saw yesterday wants me to go
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Avatar_f_tn
Sorry...she wants me to go to a pain management office for occipital nerve blocks.
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Avatar_f_tn
Wow - we seem to be a set of three. I too was dxd in early 2012, all the same symptoms. The tingling is occasional, but present. I've tried Every.Med.In.The.Book. Some of them twice. I've done Botox - which worked better than anything else - but I can't afford it. The surgery will be cheaper - how's that for a sign our medical (what's the word???) uh.... whatever. Our insurances and doctors are backward.
I'm on my 3rd? NL, and he doesn't seem any better than the last. I'm trying meds for a second time that I HATED the first time. (I put my foot down on Cymbalta and Topamax). I'm jumping through every hoop he holds up.

I'm hesitant about the surgery because I know I don't recover well, and I know I'm functioning at "not bad" right now. If things are worse after the surgery- well, I don't want to make things tougher on my family. They kinda need me to be "Mom" right now.
My headaches are liveable right now. I've been pretty stable for months. I'm not happy, but I can deal. (I do wish my doctor would let me have enough of the one medication that helps to get through a month though)

OH - medical FIELD! That's the word..... I hate the aphasia. I used to be so dang smart, and now I sound like an idiot. I think that's the worst part. No one takes me seriously because I can't finish a sentence intelligently. I did so well in college and on my GREs. And now I sound like a dumb blond who's done too many drugs.

Wow. I'm sorry. I just totally took over your post....I'm going to leave it though, because I need someone to read it, and I know I won't remember what I typed.
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Wow - My story is very similar. My herniation is 8-9mm, but I have no CSF obstruction so the neurosurgeon doesn't seem to think my symptoms are due to Chiari.  I also have been recently diagnosed with POTS but POTS doesn't explain all of my symptoms (not nearly).  I am currently on short-term disability since December 20th.  My neuro won't clear me and neither with the electrophysiologist, as of yet.  I am a mom to a 2 1/2 year old and I have a great job that I don't wont to lose.  My neuro wants me to go to the Chiari Institute, I sent them my info about 2 weeks ago and am waiting for a call (crossing my fingers) ... but needless to say I am frustrated because I am looking for answers like  -Am I able to return to work?  The electrophysiologist said 25% of people diagnosed with POTS end up on SSD.  When I asked the neuro the same question he basically ignores it and writes me out of work and says we will re-evaluate in 3 weeks.  What these people don't get is I have a mortgage and bills to pay and a little girl to take care of - My fiance doesn't have the best job right now even though he has a masters degree - b/c the lovely economy - so he is currently in nursing school b/c thats a guaranteed job - but wont be done for 1 1/2 years.... So in the meanwhile his check and my disability checks are barely cutting it....

Sorry for the ranting, but I just wish we all could get some answers and proper help!
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Avatar_f_tn
I am the same way! I cannot remember anything!! I have always been really smart but just feel so ignorant now. I work full time...in the medical field!...and have 4 children. I have missed a lot of work due to my health. I also feel that I'm letting my children down because I'm not the same person I used to be. At almost 34 years old...I feel like I'm 80! It doesn't help that also have Psoriatic Arthritis. I just want to feel...normal.
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620923_tn?1413427272

  Hi and welcome to the Chiari forum.

Not all with Chiari symptoms have the CSF obstruction, which is a good thing, and a bad thing all rolled into one...good bcuz u do not want the obstruction, but u want answers so this is bad.

Well what u will want to look at next is other related issues...like ICP, POTS, ehlers -danlos which all can cause the many symptoms u mentioned.

Also get a 2nd opinion...get copies of ur MRI's u have had so far and the  reports and find a true chiari specialist and see what they say regarding ur symptoms and no obstruction.

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Avatar_f_tn
Thanks to all of you. I don't feel crazy now. I know the symptoms I'm having are real...I just need to keep going until the right person can explain them and help me. As far as a Chiari specialist...where should I start?? My NS is at Vanderbilt in Nashville, TN. As far as I know there are no true Chiari specialist around here. So looks like I'll have to travel??
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620923_tn?1413427272

  There is a Dr in Nashville...check out the list of Drs we have in the Health pages or here as a thread u have to back page to page one to see the list.http://www.medhelp.org/health_pages/list?cid=186
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Avatar_f_tn
I also am a mom of a 3 yr old, so I know how difficult it is to live like this.  Honestly, drs don't know all there is to know about Chiari.   They know what they know and they're still learning.  My cfs flow was flowing but the herniation was preventing it from flowing properly causing all the same symptoms.  The fatigue is something unexplainable.  It would be 2 in the afternoon and I was drained.   Foggy head, hard to concentrate, ringing in the ears, I would get this tingling in my upper center shoulder/back area....its no walk in the park.  A lot of times I felt so alone or like I was crazy...cause no one understood.  Partially why I joined this website.  As awful as it may sound, hearing from everyone with the same issues makes me feel not alone.  Maybe a little selfish...The other part of me wants to help give advice on being your own advocate.  The problem with chiari too is that it can continue to cause neurological damage.  So the affectiveness of the surgery can be amazing and all symptoms gone, or make some symptoms better but also stop the progression.  When symptoms get worse, then you know somethingbis going on .  Thats how we found the buildupbof fluid, we just didnt know where exactly until dr got in there for the second time.  Second recovery was supposed to be easier, not in my case.  This has been hell.
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Well I went for an occipital nerve block yesterday as they think part of my problem is occipital neuralgia. It didn't work...go figure! So now they are in the process of referring me yet again!
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Have you had the surgery? I have an 18 month old and I understand how you feel.
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I am from crossville tn. I know how you feel. I used to be so smart and know i just feel stupid. My memory issues have caused many many problems for me and my family. I can't seem to remember anything no matter how important it is. I have headaches everyday especially in the mornings when i get up. My surgery is Thursday. I like my doctor he is very nice and understanding. His name is Dr. Justes and he is in cookeville. That is not the right spelling for his name but i cant spell hardly at all i am sorry. If you would like the number or anything just send me a msg.
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I have not had surgery. At this point they are saying there is no need for it because there is no obstruction and therefore something else must be causing my symptoms.
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Thank you so much. I will look into him. Good luck with your surgery and please keep me posted. Praying for you.
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Anyone who could recommend some good Chiari Malformation books/ would be greatly appreciated.
Thanks
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