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Chiari Malformation - 2 decompression surgeries and still issues

Hello everyone. I've been a member here for a bit, and mostly just read stories and look for answers, so this is my first post. In 2009, age 26, I gave birth to a beautiful baby girl. That's when everything changed on many levels. Essentially after having a baby, you're fatigued and "off" but something wasn't right. I started walking into thing, felt unstable, headaches, and then started getting sensations that I was falling. I had numbness in my neck and upper back and PC didn't like the way things sounded. Had an MRI in 2010 and concluded that I had Chiari Malformation. The herniation kept growing and symptoms got worse. I had my first decompression surgery in June 2011. Everything was amazing afterwards. The surgery wad great. I healed well and felt wonderful. The pressure was gone in my head and ears and I felt like I had control over myself and life again....for a few months. In September 2011, the symptoms came back as if someone just flicked a switch. I was devastated. MRI showed a cist like area collecting spinal fluid where the patch was. In 2012 we tried aspirating the fluid which worked for the moment, but the fluid just kept building; essentially placing pressure again on the cerebellum. In January 2013, Dr's decided to go in again. The surgery went well, but recovery was awful! ((make note, I did not take any of the pain medication outside of the hospital except for ibuprofen)). It seems as though that "patch" was no longer holding place and it was creating a damn and collecting all the fluid. They replaced the patch (I think) and double stitched it in place.  Things were okay for a bit. And then slowly the symptoms returned. Everyone claims my brain looks good and I have been through every Dr there can be. Dizzy specialist, cardiologists, Neuro, ENT, chiropractor....etc. I've had diagnoses of silent migraines, vertigo, possible POTS, dehydration, stress..... All with no success as being an answer. So after one Dr last year said "i was too emotional" I gave up.  I just let everything be, because I had a family to get to and a life to try and enjoy. Then on June 26 this year I blacked out while driving Hoe from work. Scariest thing ever. I don't know how I didn't crash, but when I came back to, I couldn't lift my head up. It had slumped over when I blacked out (and I don't mean things got dark... It was like my body shut off) and then felt like it weighed 100 lbs. So now Dr's are all over me trying to figure things out but they don't know. Had CT scans, echocardiogram, ultrasound of coratid artery, heart monitor, and next is a MRI, an EEG to rule out seizures. But, nothing seems to add up to the Dr's so right now we're trying to find a needle in a haystack. I have a bad feeling it's the collection of fluid in the base of my skull where the patch is causing these issues again. Blacking out is new though.  Any thoughts, advice, similar situations? I'm beyond frustrated as I do not plan on letting this run my life nor did I sign up to have brain surgery every other year.... Thanks for "listening".   :o)
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620923 tn?1452915648
COMMUNITY LEADER

  Sorry to hear your trip to the cavern's ended the way it did....could be the change in lighting....darker areas can affect out balance and cause all sorts of issues and symptoms to occur....as it also affects our depth perception....

It also sounds like the Drs you have been to, are not Chiari specialists.....
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Avatar universal
Oh geesh, that sounds frightening. I have an EEG test in September to rule out seizures. No one thinks any of this, my feeling crummy all the time, exhausted, dizzy/disconnected, slug like...etc has anything to do with my chiari. So they're putting me on migraine meds tomorrow and testing for unusual brain activity. MRI was "normal". Which is weird cause the pressure in my head and ears is unbearable at times. Went to Howe caverns in New York last week, went into the cave about 156 feet under ground and thought I was going to lose it. Had no balance, felt nauseous, extreme  pressure in my head....I had to leave.  Just been awful, so I hope the new meds give me some relief.
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620923 tn?1452915648
COMMUNITY LEADER

  It is not that you do not lose consciousness at all...but it is so quick...I was aware I was falling but could not call out for help, brace myself....nothing...but I knew I was falling....could not figure out why.....it is like flipping the switch off and back on again....but no time to rebound....strange. Anyway that is what my Dr called it.....I really think it is the same as I know I went out but very briefly.

Could be the Drs are calling this a drop attack even tho the description is different....just sharing what my Drs referred to what happened to me and it was very similar to what you had...except I was very nauseated when I was able to move again on my own....my daughter said I was not responding to her, I thought I was....as I said I heard her...just things were not connected or connecting.....??

Do make sure you are talking with a Chiari specialist....not all Drs know about some of the related conditions and issues connected to Chiari.
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Avatar universal
I just googled drop attack and it says it's a sudden Falk without losing consciousness. That's not what happened to me. I was driving, looked to the left and when ib turned my head back forward my body shut off. Blacked out, completely lost consciousness but only for a few seconds, but when I came back to, I couldn't pick my head back up. To me, that sounds like fluid imbalance. But I'm no Dr lol
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Avatar universal
Thank you for your post!! That is veeeeerrrryyy interesting and I will definitely look into that!! What do you mean by "having a drop attack"? A drop in what exactly? The black out episode is what my Dr's can't seem to pinpoint or connect to chiari which concerns me. Which is also why they said it has nothing to do with my chiari and has sent us all on this wild goose chase. I just wasn't to live somewhat normal and enjoy life without the constant search for answers. I've always been healthy my whole life, very active growing up, and all this has sent me into a funk that really prevents me from quality of life. I can deal with no roller coasters or crazy stuff, lol, but I'd like to be able to do a cartwheel with my daughter. Thanks again!!!
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to posting on the Chiari forum, I know you have been a member for a while...and I hope we can help you find answers.

The first question is, what type of patch did they use?
2nd....did they rule out Ehlers-Danlos*?

The reason I asked both of these is bcuz...those with Chiari are prone to connective tissue disorders like EDS* and we can have rejection issues to foreign matter....ie- the dura patch....so, we are told it is best to use tissue from our own bodies....this is why the patch continues to fail....and it will also cause you to feel poorly.

Many Drs that are not true Chiari specialists do not know to look for these related conditions and may miss or over look them.....but it could be replacing the patch with tissue harvested from you to help heal with out the  excess CSF pooling.

The way you describe your body shutting off is similar to how it feels when you have a drop attack.....and it is pretty much how my Dr explained what one was....

Unfortunately this has happened to a few other members ziggy2 is one member you may want to chat with....send her a PM.

I hope this is helpful.
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