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chairi malfirmation

Hello I happen just to be scrolling apoun this website and came across this.......ill try to make this as brief as i can but theres so much lol....well about 5 years ago i had got into a bad car accident and was getting neck pain n headaches so my regular docter orderd an mri which showed i had chairi malfirmation about 5mm and went an seen a neuro sergent well it had gotten droped after that because i felt okay besides the minor headaches and neck pain..well about 2 months ago i started discovering all these odd and different symtopms at frist i started like out of it feeling body heaviness,weakness,dizzyness palms would get very sweaty well my regular docter had orderd for me to get another mri of my brain and it came back as if i had chairi malfirmation again which i already knew about but didnt think at all about it or that would be causing any problems well my docter wanted me to go see a neuro which i did and the neruo had ordered a mri of my upper spine and  brain and that came back *** well 5 to 6 mm chairi malfirmation n he also said that the mri showed it looked a little kinked up in the back near my spinal cord so he requested i go see a neurosergent which i did then she also ordered me a closed mri n a csf flow study  onmy brain so that came back also the chairi malfirmation of 7 mm and that the fluid in the back of my brain was flowing slower then normal but she thinks that its not life threating at this time and thinks suergery doesnt needed to be done at this time and also requested i go for a second opinon for a neurosergent and which i did i went up to see a specialtist in boston,ma at this time i was starting to get real bad dizzy spells and body heavyness and also some tingling n numbness in my face  n arms n legs im very weak n tired an  just feel like im out of it all of the time and just not myself at all i do get headaches time to time in the back of my head n neck pain still i also get once n a wile sharp pains in my left air n jaw n i even get sometimes feels like shortness of breathn chest pains at times my whole body feels extremly wired n not myself with the heavyness n dizzyness and everything along with it....i did go to the neurosergent in boston,ma and he looked over my mri/csflow study in front of my husband n I and he doesnt seem to think that the symtopms im getting are caused from the chairi and says to see my neuro from around here and he wants me too get another mri done of my whole spine im actually getting my 24hr eeg testing done right now as im writing this because my neuro around here also wanted to rule out seziuers i did have a eeg test done about a month ago but it came back abnormal so he wants this 24hr one done to see more like i said i feel like im at my breaking point and thers no hope and i dont know what to do im 23 years old and just recently got married and have a 7 year old son i just want to get better and know i will be okay and get some excat anwers onto what is going on im in the process of still  seeing my docters well many of them i just figured i would tell my story on here and see if i could get some replies back onto if anyone has delt with the same circumstance ever i dont know what else to think at this point and hoping i will be okay and sergery will not be needed! thanks for taking the time to read this and if you want to i would love replies thanks so much....katie from warwick rhode island
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620923 tn?1452915648
COMMUNITY LEADER

Thanks for sharing about ur NS....can u please add his info to our list? We r always looking for names for the members to research.

Please locate the Drs list thread and add his info.
If u need help  or have already done so, let me know and thanks so much for sharing : )

   "selma"
Helpful - 0
1672915 tn?1335220598
Hello! I live right near you in South Eastern Ma. I was diagnosed with Chiari1 with a syrink and had to have a laminectomy 1yr ago. My Neurosurgeon who I saw and did my surgery is dr.Cello. He is an excellent surgeon. When I first saw him I already had a MRI of lumbar, midback, and cervical spine but he wanted me to get one of my brain. When he was going over my MRI he explained it in a way that I could understand. He is not one of the surgeons who thinks that once he does the surgery he is done with u. I saw him not only to get my stitches out but a few mnths after the surgery but also after I had my 6 mnth MRI's done and he wants to see me in a yr or two or if my symptoms get worse or if I have new ones. Also when I told him I was having problems with my primary dr. He Reffered me to another primary who actually is knowledgeable about Chiari and now I have a reg dr. who I feel comfortable with. Good luck with everything and keep us posted.
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999891 tn?1407276076
As you post other threads drop down, you were looking for this thread but could not find it. By posting a response  I sent it or bumped it back to the top.

Can I suggest you maybe take some time to get familiar with the site here by scrolling down to: HOW TO NAVIGATE ON MEDHELP:
From Here
http://www.medhelp.org/posts/Chiari-Malformation/Welcome-to-the-Chiari-and-Syringomyelia-Forum/show/699262
Helpful - 0
999891 tn?1407276076
"Bump"
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Many of us get mixed signals as to what we should do and when...what u need to do is get tested for related issues like a syrinx...did u have a MRI of the cervical , thoracic and lumbar spine?...if not, a syrinx was not or could not be ruled out. This is important u want to avoid one if possible from forming and a CSF obstruction can lead to one forming newhere in the spine...too many Drs only check the cervical spine for a syrinx and proclaim u r syrinx free.

Next in addition to CSF flow, u need to look at symptoms and how this is affecting ur overall health...surgery is not a cure, or a fix...many can end up feeling worse post op...or develop new issues related to having the surgery...this is not something u can know in advance..and the benefits must out weight the risks in moving forward with surgery.

  Do make sure u r talking with true chiari specialists, and know that not all with chiari r surgical candidates...so find a good NL close to home to do testing and to help u if u do qualify for surgery as a NS only has u as a patient for so long then u r released.

   "selma"

  
Helpful - 0
1306714 tn?1327257080
Welcome to this forum and I'm so happy you have found us.  You will get more info on here than any where.  I'm also happy you have gotten a second opppion.  When I was dx'd mine was also at 6.5 mm, but as you will see on here it is not the lenght but the width that matter's.  As for me I decided on surgery because it was affecting my daily life.  You will know in your heart when it is best for you to have surgery.  I know finding out you have Chairi is hard to deal with and ecspecially hard to except, but finding the right NS is the best and a specialist is your answer.  I want to let you know your not alone in this journey and we will help and support you the best we can.  It is a long journey for some of us, but it is all worth it.  I have to say the one thing that was hard for me to accept is having Chairi surgery is not a cure and once a Chairian always a Chairian.  It is a life altering issue we have to deal with, but as you read other's post on here you will find we all have different way's and different symptoms that we have to accept and deal with, but we deal with them together which has been life saving for me.  I hope the best for you in you journey and want to let you know your not alone.  
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