Chiari Malformation type 1

Hi @luckypeppersi I so sorry to hear you were treated so rudely. I can imagine that the symptoms affecting your heart have you concerned. If you haven't already called Mayo Clinic, here are the contact numbers http://mayocl.in/1mtmR63

@ashleybryant, do you have any advice to offer?

Luckypeppersi, What type of heart issues is the chiari causing?

Here is an example. A few weeks ago it was about 715 am. I was getting ready for work and coughed. It felt like a rubber band had snapped on or in my heart. It took a couple of minutes then I was able to finish getting ready for work. An hour later I am at work and sneezed. It felt like someone had knuckle punched me on my left shoulder. The pain shot down my arm. Hand was numb and throbbing arm was in severe pain. I was struggling to catch my breath, sweaty, tingling up the back of my neck and head. Fifteen minutes later, my co-worker had me in the er. All basic heart attack test showed no signs of heart attack. This has been going on for a year now. Usually the pain is a little more progressive not as sudden. Always puts me in bed for at least a day or two. Exhausted, weak, crying for no reason.
I did get a hold of Mayo. We are now waiting on getting an appointment with a specialist in Chiari.

Hello all,
29Y.O. Male
Type 1 Malformation Diagnosed in 2005
Severely Aggravated with a Motor Vec accident back in march of 2016
I guess ill start recent and work to the old.
I just recently had surgery for Chirai 1 type Malformation on 12/6/16, I had a standard Decompression preformed in Las Vegas by the crudest most arrogant "Surgeon"/man I have ever met.
With that Said the man is a god with his hands apparently.
I was released from Surgery on the 7th of Dec 2016 after the "most rapid recovery the hospital has seen" (this was repeatedly told to me by 5-6 Doctors/staff)
On the 16th of Dec 2016 I had my stapes removed and was given a "it looks perfect" But yet couldn't feel any of the stapes being removed but the last one that got "Stuck" and had to be forcedly removed by his S.A.
So Imma give you a basic breakdown of my current "complications" If you wouldn't mind reading this and if anything is "serious enough to Seek Attention let me know please"
With that said, It isn't without complications. I now am having issues swallowing it feeling like there's always something caught in my throat but when I go to do the act I have no issues. I'm also having a "stretching feeling at the Top of the base of my skull about 6cm above from the sight of the Dura area that was Operated on I have about 75% of the muscular movement back in my neck now. and had Small Bugle at the base of the skull that I was unaware of until I accidently "popped" it doing my Iso Exercises (neck retention/mobility) I haven't had pain or anything sense or any cause for alarm from it. I cant seam to Stay Awake past like 7pm... anymore when before I was a bit of an insomniac.
I don't have any other heath Concerns Everything else read fine in my workup and yada yada... do I need to worry about the above what does everyone think?

I know this has been posted on another thread but I cant find it _-_

Oh,so painful.....im at 10mm and from everything ive read, the surgery just makes room for a further fall! Ive had the same problem with "yes, you have to have it" to "you are nowhere near needing it". Ive stopped all meds and the nearest Chiari Center is in Milwaukee, Im SW of Chicago. Unfortunately, no matter your choice: there is no "cure". Im done trying to treat symptoms instead of the cause, and some nights i just sit and cry from the pain and symptoms. I have multiple conditions so finding 1 solid treatment plan has been impossible, and no doctor has been able to come to any solid conclusions. Wake up happy you are still breathing!

Hi this is my first time. I was diagnosed 3 years ago with a chairi malformation. My symptoms have gotten worse causing me to not have my life. I have seen 2 different neurologist saying my symptoms are from migraines. How can you tell the difference between migraines and a chairi?

Hello @mkell13, welcome to Connect. I moved your discussion post in to a long existing conversation on Chairi malformation so that all of the members who have discussed this diagnosis in the past would get a notification. If you are responding by email, I encourage you to click on the VIEW & REPLY button at the bottom of the email so that you will be taken to the long discussion. Once there, you will meet other members who have had similar experiences and diagnoses as you.

@mkell13, what have your neurologists told you about the migraine pain? Have they talked about why they don't think it is from the malformation?

I now have ringing in my ears, dizziness, and i even passed out twice. I have facial drooping so bad i cant see out of my left eye while my right eye vision is blurry. When i go to the ER they immediately start me on stroke protocol . I have numbness in my right foot. Nausea/vomiting. My pain is so tense it is a severe pressure in my head. My blood pressure gets very high at 210/147. I constantly have my head hurt 24/7. Im told t
My bp is high from the pain. Ive had 3 neurologist tell me i have a chairi and it went from 2-3 mm to 3-4 mm since 3 years ago. My problem is i just saw another neurologist and she says its all from migraines. I went telling myself i will do whatever even surgery but i feel im going backwards from 3 years ago since now its just migraines again. I was put on medical leave due to not being able to do my job as a nurse. I just want my life back and i am so confused whether i should try yet another dr. I feel so defeated.

Also, i have tried botox and lots of meds such as depakote, indomethicin, nausea meds. They will put me in the hospital to stop the pain. Im tired of just masking the symptoms with no relief. I get sharp shooting pain that starts in my neck/ back of my head. My upper mid back has pain it. If i sit up too long or sneeze hard is when the pain will start. Now the new dr wants to put me on opioids or send me to a pain clinic. Does anyone else have these symptoms or is it really just migraines?

Lol... Sorry, if you just read around you'll find many of us have debilitating headaches, dizziness, confusion, skin sensitivity, not really able to use arms or hands much from pain and weakness, temperature control problems, unusual bruising or ability to turn bruising into "blunt trauma", usually from a fall, nausea, blurred vision, light sensitivity, minor/severe balance issues, seizures, light-headedness, passing out, scoliosis and other related conditions, drooping face, drooling, going right when the GPS says left, food tastes funny, slight drooling, sleep problems, and most of all? PAIN. INCURABLE PAIN. Without any cures, when you look around you'll see surgery usually makes it worse, this condition makes doctors turn you into a drug addict because there's nothing they can do. My brain's on the list for scientific donation at the Miami brain bank to try to help a generation sometime, somewhere because it's not happening now. There aren't even any clinical trials. I hope this helps, and may explain other weird or painful things that may begin to happen. But if you have insurance? FIND A SPECIALIST. There's a new center in Wisconsin and UCLA just opened a center. This is only the beginning. I have 3 college degrees, can't work, and I think my IQ of 156 is now more like 56.

The very best thing you can do is to find yourselves a really good neurosurgeon who is familiar with decompression surgery. He needs to have performed a lot of them so do your research. Please do not be fobbed off by doctors who tell you it's all in your head!!. First thing is for your doctor to arrange for you to have an MRI scan and then you demand to see a neurosurgeon.
I had decompression surgery almost 12 years ago. I never had the headache but other vague symptoms for 9 years and it was only when I had an MRI scan that the Chair 1. and Syringomyelia was diagnosed.
I have been left with some nerve damage in my back and I take medication for that. Other then that I lead a very normal life. I think I am one of the lucky ones because I had a fantastic surgeon operate on me. Please do your research as there is help for you. Make your doctor listen to you and shout if you have to.