Chiari Malformation Community
What should I expect
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What should I expect

I was rushed to the hospital one week ago for dizziness, numbness, and just an all over bad feeling. I was given a CT scan and diagnosed with Chiari Malformation. I have been struggling with this for about 9 months now, with 7 ER visits, a complete cardio work up, a neurologist visit, 2 psychiatrist visits, a family practice visit and 2 "Urgent Care" facility visits. All the visits prior to the one last week have basically told me that I am crazy and suffer from extreme anxiety, acid reflux, GERD, and the family practice doctor even told me that she wasn't even going to look at me because if I had been to a certain hospital 7 times then there was nothing wrong with me. I am lucky to live on the border of another state with a much more advanced health care system and finally decided to visit one of their hospitals, in which case my CT scan showed possible Chiari. I visited a different neurologist with my results in which case he tried to tell me that the drop of the brain is a normal occurrence and that I had migraines. I had to push for an MRI and EEG. Lately the symptoms have gotten worse. Really foggy thinking, pain in the right side, major muscle twitching, constant heart palpitations, the feeling of food stuck in my throat, what seems to feel like bolts of electricity whizzing through my head, etc. I am waiting for my insurance to approve the MRI and having trouble wrapping my head around this disorder and all of it's effects on my body. I worry that I will not be able to work, drive, or live my life. Can anyone give me some advise on how to handle everything? I am a 31 year old female with a full time job and 2 boys.

Thanks so much!
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620923_tn?1416285879

  Hi and welcome to the Chiari forum.

Well u have certainly gotten what we have dubbed the "Royal Chiari Run Around"....Drs claiming u have anxiety, nothing but normal issues for the way ur brain appears...blah blah blah.....NOT !! If just one of them had to live like this they would understand that it is NOT Normal....sigh.

The other issue is they only look at the herniation and how long it is , not if it is obstructing CSF flow....and how it is affecting ur overall health....u must be nuts....so go to a shrink....ugh.....BTDT and let me tell u it  was the shrink in my case that was nuts....lol...

Not knowing where u live, I can not suggest which list is best for u to review, but we do have a list of Drs for diff areas.....use the list as a tool to research Drs as the list is not a referral nor an endorsement .

Find a true Chiari specialist it is key to getting proper care and testing as u will want to rule out ALL related conditions as some can affect how u feel and heal post op.

Know u r not alone <3
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My daughter who is 22 sound EXACTLY like bleary81. I could cry reading this. I kept telling the doctors that the headaches seemed to start around the "bolts of electricity whizzing through" her "head". She originally had MRI's at 15 that the neurosurgeon in CT said doesn't look right but "can't put his finger on, brain seems low, sagging," etc.. She finally collapsed on the lacrosse field and ended up in ER for head pain, etc.."migraines, pinched nerve, depression (btw NOT a depressed kid), . After several ER visits for pain Dr's found CSF leak at base of brain that had brain matter herniating thru hole. She had surgery to repair 6 years ago. She was a bit better for a time but was never the same. She has pain every day. I finally took her to a pain management clinic and she was doing SLIGHTLY better until last year. Her pain is worse and we are going thru more tests to see if she is leaking again. I happened onto this forum out of curiosity for doctor recommendations and read bleary81. This describes my daughter EXACTLY.  I am in the New York City area. Any advice would be much appreciated.
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620923_tn?1416285879

  Hi and welcome to the Chiari forum.

I am so sorry ur DD is having continued issues post op. What she is doing post op activity wise can play a role as well as what was DX'd prior to surgery....Do u know if she has ne related conditions to Chiari?

Then the type of surgery done is something to look at as well. What was done?.....

And whom did she see for the first surgery and what post op care did she receive?
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She hasn't been diagnosed with Chiari but the symptoms sound so alike. She had a CSF leak repair behind her right eye along bottom of brain. She had a spinal drain post op for 7 days. She had physical therapy but continues to need forarm crutches for support and balance.
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I was hospitalized Saturday night and they kept me into Sunday morning for chest and back pain and trouble swallowing. I seem to get worse every day and its frustrating. I burp constantly and suffer with pain in my chest and trouble breathing. I had my MRI and EEG done Monday morning and am just waiting on the results. As I sit here typing I am in pain. I cry every day for an answer or some miracle to help me get better especially for my 2 young boys. My blood pressure seems to be a problem now. One minute it will spike to 135/87 then drop to 107/67 in a matter of minute. My eyes twitch at night cause they seem so tired, my legs feel like they can barely carry myself. I am scared to be left alone and hate the thought of driving, shopping, going to public functions for fear of passing out or falling. I pray for everyone going through this as it can put such a damper on what seemed to once be a perfectly normal life.
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I live in northeastern NC but upon what my neurologist says regarding my results I plan to travel to the University of PA if need be. There aren't many Chiari specialists in this area. In fact I've had RNs and nurses ask, You have what?
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620923_tn?1416285879

  Hi I am so sorry u had a bad weekend, but u do have a NS down there.....Dr Rosner  is a top Chiari specialist.

I did go to the Unnv of Penn with no success.....

I know there are many Drs, NS's etc that have no idea what Chiari is or even if they heard of it have no idea how it affects us.


Do look at the list of Drs we have posted in the Health Pages and there is a thread here on this page, to get names and research them, the list is not a referral nor an endorsement.
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I have 2 kids and one on the way, so I know exactly how you feel. I also hate being alone and have a hard time driving or going in public. I have not had surgery yet and have not seen a specialist. Big hugs!
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