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Chiari malformation complications?

I'm recently new to this I have a mild chiari malformation as the neurologist says, but here these past 3 months I have lost the feeling of my left leg, I get numbness in my face, and my muscles feel so tight! My headaches are being treated but i feel like when one thing is treated any other pops up. I have spastic problems with my legs and feet as they said the other day. When a flare up happens all I want to do is just lay in bed till my joints quit hurting and my back pain goes away. I have a mri on my spine here soon to see even though it's a mild case surgery is a suggestion which I'm completely terrified of. Has anyone had it, as well is there a medicine to even possibly help me. I feel like just giving up honestly.
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Avatar universal
Hi Robbie
What are your leg symptoms like exactly I'd be interested to hear?
Also how long has this been gojng on?
From what I've read surgery is a option if there's reduced flow etc
Helpful - 0
Avatar universal
I had spine surgery on my lower spine about 8 or 9 years ago. something was really wrong because i was no longer able to walk. My surgeon was the best because he fixed the problem and i was able to walk again. But I have been in pain ever since. Now i am told i have pseudomeningocele. I know what your going through because it is happening to me as well. It has been getting worse and now i can barely walk and i must use a walker. My spine surgeon has retired.  I have severe muscle spasems all of the time. I have neuropathy in all of my hands, feet, and going up my legs. My spine is now tingling. I also get headaches and my entire body aches constantly. My primary doc just said i need a neurologist. She had me on A LOT of very strong pain meds for several years now. But now that there are new restrictions regarding pain meds, she is dropping the patients who she prescribed them to. She dropped me a month ago and i had vicious withdrawals. But the pain i now feel makes me wish to die. What to do, i wish i knew too. If anyone knows, i would love to find out how to fix this once and for all.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Surgery should only be discussed once you have ruled out ALL related and non related conditions and had a CINE MRI to see if you have a CSF obstruction....surgery is done to  restore CSF flow not to reduce symptoms...but we all hope for them to lessen post op.

Since you mentioned joint pains....make sure they rule out Ehlers-Danlos Syndrome as it is a related condition and can cause headaches as well as all over joint and muscle pain and often is mis-DX'd as fibro.

I had surgery 6 yrs ago this MAY and I would do it all over again....but I researched my Drs and made sure I knew enuff to make an informed decision...having the right Dr is key.

Look at our list of Drs and use it to research Drs in your area...keep in mind you may have to travel and that this list is not a referral nor an endorsement for those listed....

And know you are not alone.
Helpful - 0
Avatar universal
Thanks! It helps me to hear that your surgery went well both of yall! It's q scary thing to even think about. They've done a mri on my head/brain and an eeg cause I was having seziures. I have a mri that's supposed to be done on my spine and I think it's called throatic if I'm spelling it right. I just have so much trouble these past few months with the burning in my neck and spine, pain in my neck, my left leg is losing sensation and I'm having muscle tightness on my left side of my arm and legs. I have days where I feel like my whole nervous system is haywire! I've heard there are great doctors out there. How did yall find your NS? Did you use the recommended doctors or searched for your own? I just want to know ahead of time just incase I'm 24 so I've never had to search for doctors and stuff before :(
Helpful - 0
12573102 tn?1431701617
Hi.....I just wanted to comment on using the doctor's list for research.  I did the same thing & just had my decompression surgery April 2nd.  I am doing really well.  I still have occasional headaches & neck stiffness, but much better than prior to surgery.  All other symptoms thus far are resolved but I know they can always return.   I did review the list on this site & it  is very helpful.  I started with the closest area to me & luckily I found a doc only 1 1/2 hours away.  I called his office to inquire about his knowledge of Chiari, how many decompression surgeries yearly done & to see if he tested for related conditions.  Luckily for me, I found my doc with only 2 NS visits (the 1st was not on the list thank god cuz he was horrible).  Make sure you don't allow surgery unless you are positive it is necessary.  There are major risks with any surgery let alone brain surgery.  I was off balance/dizzy & lost hearing in my right ear for 7 weeks straight b4 I agreed to the surgery(unable to drive or work).  It was noted that I had a CSF flow obstruction.  I am now able to drive, no longer off balance/dizzy & hearing is normal.   I immediately woke up in ICU & felt a difference despite the pain from surgery!!!!!  Good luck in your search & wishing you relief of symptoms!!!
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi...I went to see several NS's in my area one was supposed to be a specialist but was not, then I was told of  one down in Philly and he too was not a true Chiari specialist as his words to me were " you deff have Chiari but it is above me" he could not make suggestions as to what I do next....

I was lucky to hear of a Chiari conference which many of the countries top Chiari specialists would speak...I got to meet several and ask questions and once home continued to e-mail back and forth with one and he was not my Dr and was never my Dr but he told me what testing to get next and what to look for...very helpful...I did have surgery with a Dr in the group he was in....

Having the right Dr is key and educating yourself is very important.
Helpful - 0
Avatar universal
Thanks! I'm hoping to have answers when I get this Mri on my spine and throatic if that's what it's called. I'm glad that your surgery went well it's a relief to hear everyone that had it is doing good. I don't blame you on being uneasy cause it runs through my head all the time. I'm getting to the point where I'm fed up with it. I just want to somewhat be able to actually feel better without all these crazy things going on.
Helpful - 0
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