Chiari Malformation Community
Reoccuring Chiari Headaches?
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Reoccuring Chiari Headaches?

Hello,

I am a 20 year old male and had an MRI done at the beginning of February due to constant headaches that I had been suffering from for a few weeks. It was discovered that I had a slight chiari malformation type 1 of less than 5 mm. I saw a local neurosurgeon who informed me after looking at the MRI that it wasn't anything worth worrying about. He said that the radiologist shouldn't have noted anything regarding a chiari since it wasn't a major herniation and that the radiologist was scaring us about something that wasn't causing my pain in his opinion. My headaches got progressively worse over the next few weeks with nausea and major stiffness in my neck and shoulders (tested negative for meningitis). My headaches finally went away (mid-February) and now they have returned in this past week or so (beginning of May). It's not severe headache pain but constant and very annoying/bothersome. I'm also feeling some irritation in my neck and shoulders but at the moment it's not major pain, just almost feels as if I slept in an awkward position. No pain medicine helps.

I guess the point of this very long story is to ask this question...if someone were to have a chiari malformation type 1, would it be possible for the symptoms to "disappear" only to reoccur a few months later? I don't know what's causing these headaches but I want to get it fixed ASAP. I'm wondering if my neurosurgeon just didn't have much experience with chiari's and that I should get a second opinion from another neurosurgeon. Thank you in advance for whoever reads this and replies.
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

To answer ur question"can symptoms disappear only to return a month later"

YES!!! Chiari symptoms cycle and can flare depending on ur stress levels and activity.

The other thing is there is no "fix" for Chiari...yes, ur NS may not have the experience with Chiari as it is not the herniation length that matters but if u have a CSF obstruction.

A CINE MRI is in order, and a MRI of ur thoracic and lumbar spine...u need to rule out syringomyelia, tethered cord, ICP, POTS, sleep apnea, ehlers-danlos....and check all vitamin and mineral levels.'

This will be a long bumpy road...but take ur time, educate urself...just as there r NS's that discount Chiari there r those out there that will do surgery even tho they do not have the experience and u can end up with more issues...so make sure ALL related conditions are ruled out b4 u consider surgery, and see a few NS's u know are true Chiari specialists.
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Ditto to everything Selma said.
I would only add that sometimes you can't tell what might bring symptoms on--it could be a change in the weather--just be aware that there might be triggers.  Or not.
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Hello my name is Lynette and someone told me you where the best person to ask my questions to. I was told that I have Chiari Malformation type 1 and syrinx 15mm and I was told today that my syrinx may be bleeding. Can you please explain this to me so that I can get a better understanding?
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

First I have to comment on ur username...Nettypoo...lol...that is a nickname all of my nieces have for my sister-in-law Annette...lol...cute!!

I have to admit, I am not sure how or y ur syrinx might be bleeding other then having an injury to that area or a growth of some sort...this is not really something I can help u with, but I know someone that may....hang in there and I will see what I can find out for u : )
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620923_tn?1405964489

  Hi...I got more info regarding a bleed with a syrinx...were u told u had a AVM? What symptoms r u having ?

Did they mention a stroke?
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Hello I just read your message no he did say anything. The only reason he told me anything is because his nurse scheduling the appointment while I was right there. He was like I don't know how to put it and I told him to just say it. He said I had Chiari Malformation type 1 with a syrinx and possible bleeding.  He got me an appointment for Monday to see Daniel Barrow.  I just pray everything goes well. Thanks for checking for me!!!
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I want to also add that I was in a car accident in January.
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620923_tn?1405964489

  Oh ok....that may explain  the possible bleed...did u have ne stroke like symptoms around that time?...just wondering, and it is possible that u do not have a bleed it is just something he feels u might have....so I would not focus on that....

Do let me know how ur visit with Dr Barrows goes...Good Luck : )
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