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Chiari Malformation type 1

Posted by @anorwalk in Brain & Nervous System, Jun 19, 2013


I've been reading all the post on chiari and wondered if anyone has a good out come of the surgery. I have been to 4 neurologist and 1 surgeon and keep getting different answers. 3 drs say I don't need surgery and the last one said that i really need it or could be paralyzed by any straining. I have a headache all the time and can barely function. Balance problems, numbness and burning in my hands and legs My hurn. Is only 5mm. Any advise? Thank you.

Tags: Chiari, neurology, paralysis


Posted by @trouse, Jul 7, 2013

Anorwalk, I know what you are going through!! I had and was diagnosed with the same problem and symptoms back 3 years ago. I couldn't get any answers from my doctors, so I decided to see a specialist. I had this special MRI done on my brain. The next week I had surgery, I had 95% blockage in my brain. They removed part of the back of my scull for circulation. Two weeks after surgery had complications and contracted spinal menengitis, I was very sick, lost 30 pounds in 4 days and was in the hospital for 14. During my menengitis, The back of my head swelled severely and they thought they might have to go back in and remove the pressure. The specialist gave me some sort of antibiotics which brought the swelling down. After the surgery I still have periodic headaches, some short term memory loss, and comprehension which is all normal after surgery. So far I have been OK. I have a friend who had three surgeries from chiari, he went to the same doctor as I did. I do not mean to scare you, I am sorry if I am. If I were you get two opinions from doctors that know about it, and if they both agree, see what hey have to say! If it is bad take care of it right away!! You will be fine!! I was scared at first, but now I am glad I did it! Recovery takes time, but then it's over! If you need to talk about this, I am here for you! I have been there!! I hope this information helps! Let me know, hope to hear from you soon!

Debra McMillan likes this

Posted by @sweetthing111059, Nov 1, 2013

I was diagnosed with the Chiari back in 2005 and I was already having problems with my right arm and hand. I had so many mris and scans and finally was sent to the doctor that told me what was wrong. I had no idea what this dr was talking about until he told me I was born with it which really made me wonder why it had never been found. Anyway I was really scared to have surgery around my brain but when I ask what would happen and when he told my I would eventually lose the use of my arms and just the thought of never being able to hug my daughter or granddaughters was unbearable I scheduled the surgery. It went fine. I went back in two weeks everything looked good cane back home and the next day I noticed a little bulge in the sight but just figured it was where they had taken the staples out. Well over the next week or two ur got bigger than a orange so I go to my family doctor. He looks at it says he could drain it but wanted my surgeron to look at it. So he calls my surgeron and they tell me to come straight there. So we head there once in the room I don't see the doctor but his intern. She states there us a problem but I needed another mri before they could do anything. So I have the mri now know this thing is getting bigger everyday. Finally they call,me tell me I needed another surgery because the bulge was filling up with spinal fluid. So here I go back to surgery really scared this time and for the 1st time since the 1st surgery I saw the doctor and he finally looked and his only statement was, You do have a problem. Then he turned and walked away. He did get the problem fixed but I still have severe pain at the base of my skull to the point it effects everything I do it feels like my head is to heavy for my neck to hold up. Its worst 0n the left side but I've had 2 more neck surgeries to fix the disc and all but I only hurt at the base 0f my skull down the sight of that one surgery. Could something else be wrong or is this pain normal and something I've got to live with for the rest of my life because I am no some of the strongest pain meds and they just dull it enough so I just get through the day. I didn't hurt like this before the surgery. But when I told this crazy dr he just said there was nothing else he could do but he would make me a appointment to see a psychiatrist. It was like he did his job got his money and washed his hands of me. So all the other dr ive been to just say its scar tissue. But I'm seeing a new pain management dr who is running all kinds of test to find. Out what is really going on. So wish me luck because I hurt before the surgery but this pain is something im finding harder and harder to live with. It now runs my life if I can even call it a life. But will keep u posted as to out come but in meantime if anyone else has this or had these problems any advice as to what I can or need to do to get some relief please let me know. Good luck with your Chiari Anorwalk. Will be praying for you.


Posted by @anorwalk, Jul 7, 2013

Thank you trouse. I have been to one Nero surgeon and three neurologist in the past year. The worst was that I found out my dx by reading my MRI report not by my dr. So I got sick of him and found a dr who has dealt with it before. When I saw the surgeon he said I didn't need the surgery, but when I saw my new dr he said that I needed surgery ASAP other wise I was a sneeze away from being paralyzed. So now I'm going to the mayo clinic in AZ. He put me on a bunch of meds and I still get no relief. I have been dealing with severe headaches everyday for over a year. How long did it take you before someone believed you about your pain and symptoms? I'm really glad that your doing so great. Here in AZ there are not a lot of specialist. I guess we will see what mayo has to say.


Posted by @spoiledheather, Sep 28, 2012

Has anyone on here had surgery for chiari malformation??


Posted by @sweetthing111059, Nov 2, 2013

I had chiari surgery back in 2005. But for some reason I started looking spinal fluid and to go back in and ride something. The only problems I have is real bad headaches at the base of the skull where the Chiari is. I just think I use the wrong doctor because when I tried to tell him what was happening he wanted to send me to a nut doctor thinking its all in my head. I know I have the pain in nor crazy. But think god my pain management dr isrunning all kind of test to find out just what is going on he is determined to find my problems. Make sure u find a doctor willing to sit down and talk to you.any thing I can help with please let me know I know how painful. They are.



Posted by @staceybeyer, Sep 25, 2014

I have been diagnosed with chiari malformation and I have been having bad headaches for over a year now 24/7. I also have blurred vision that the doctors are not sure why.i am on my 3rd set of botox treatment and it hasnt done nothing. I am nit sure if it is the malformation causing my problems and the doctor is no help with that. Anyone having or has had the same problems? Needing a little advise about this. I cant keep having migraines every day.

Posted by @Margaret_Marie, Sep 26, 2014

Hi @staceybeyer. Here's some information on treatments for chiari malformation that you may find helpful Anyone else have some advice?


Posted by @ginabee, Jul 28, 2015

I have been diagnosed with Chiari Malformation type 1 8.5 cm and have been having a lot of issues... at this point I am not having surgery until it is better preformed... anyone out here with the same thing.


Posted by @cnoethe, Aug 11, 2015

Hi i am about to see the neurologiat for my chiari malformation what can i expect and does the botox work any advice would be great. I have lots of symptoms and these headaches are horrible


Posted by @staceybeyer, Aug 11, 2015

Hi christine. The Botox did not work for me at all but everyone is different. I have had these headaches for over 2 years and i am still the same if not worse. I even went to a head institute in Michigan and all they wantes to do is keep me for 10 days to do iv medication. I dont live anywhere close to them so i wouldnt stay. I figure my doctor can do that here by me. I have been to over 10 doctors and they dont know what to do. I see mine tomorrow so we shall see what he has to say again. I had a spinal fluid leak sealed but now i cant feel some of my hand and fingers from the surgery and it didnt help my headaches. When you go in to see your doctor just make sure you ask him if this will help. Be open minded to what they want to try first. Dont do the physical therapy because igs just a waste of money and time if they want to try that before. Good luck and let me know what they want to do maybe it will help me too.


Posted by @cnoethe, Aug 13, 2015

Good morning. How was your appointment yesterday? I don't know much about
mine. She had me do a 45 min mri of the head and neck to see how severe my
case is. She said that I had a slight less reaction when she would touch
anything on my left side which concerned her. She explained that surgery is
usually the best treatment since my family Dr has already tried most of the
medication that she would have used. She is worried that there could be a
cyst which sometimes does occur with chiari malformation. She will be in
contact by tomorrow to inform which route to go. I hope you got some
answers at your appointment


Posted by @donnak69, Sep 29, 2015

I was told by a Nuero-Optimologist that when your brain swells it pinches off your putulatary gland. Which causes the headaches and double vision.
Sorry about the spelling but hopefully that explains a little


Posted by @ashleybryant, Jul 25, 2016

i was diagnosed with Chairi Malformation in 2003, i had surgery soon after being diagnosed. It saved my life, as i was getting worse and worse as the days passed. It is now 13 years later, I don't regret having the surgery. My opinion is if you are having many issues to try and talk with a good surgeon and see what it is that they can possibly do for you. I know that they can offer some type of steroid to help with the swelling until you decide to do the surgery. You always have options, just remember that.


Posted by @luckypeppersi, Oct 21, 2016

I just went and seen a neurologist this morning. I have a 10 mm and a 6 mm herniation and he said he didn't feel it was significant and no big deal. He said I obviously know more than him and was very rude. I am 42 and the chiari started impacting my heart a year ago. I was able to live with all the other symptoms till it started at my heart. I am now in the process of finding a specialist at mayo in Rochester Mn. I would like to do more of a physical therapy type of treatment.


Posted by @colleenyoung, Oct 21, 2016

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

@ashleybryant, do you have any advice to offer?

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


Posted by @luckypeppersi, Oct 21, 2016

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.


Posted by @donnak69, Sep 29, 2015

All I keep getting told is "your brain isn't falling out enough to worry about it". I now have seizures I can't work, I can't drive and I have many other problems and I am only 46


Posted by @cynaburst, Oct 2, 2015

So sorry to hear that you have been struggling. Have you been able to locate a doctor who specializes in Chiari Malformation? I know that there are some around the country, though you may have to do some digging and travel to find one. I have found that a specialist makes all the difference.


Posted by @david33, Feb 13, 2016

Hello, my name is David and I went through surgery on Jan the 21st to relieve pressure on the cerebellum.....the doctors call it Chairi malformation decompression. I know that the symptoms I had before wasn't going to clear up with this surgery, but I can't tell the new from the old....numbness, dizzy and lightheaded, weird headaches, ext. Can someone who went through this surgery help me before I make a complete idiot by going to the hospital, or calling the doctor for my complaints.


Posted by @colleenyoung, Feb 13, 2016

Hi @david33 and welcome to Connect!

I moved your message to this discussion thread in the Brain & Nervous System group where others are talking about Chiari Malformation. Here you'll meet @trouse @donnak69 @cnoethe @staceybeyer and others.

There are few older discussion threads that you can also read. Simply put Chiari Malformation into the search field.

Personally, I think talking to your doctor would be a good idea. It would be helpful for that conversation if you could clearly describe your current symptoms and if there is any difference between before surgery and after surgery - no matter how slight the difference might be. Have you noticed any difference at all?

maidmarion likes this

Posted by @maidmarion, May 6, 2016

I wanted to let everyone with the diagnosis of Chiari to consider having the surgery but make sure your neurosurgeon performs a lot of them. I had an excellent surgeon and he performed surgery on me and I am a almost 60 years old. My headaches are not nearly as bad as pre-surgery. My surgery was two weeks ago. I would like to know if there is anyone out there that has had the surgery and can tell me if their headaches subsided and if the back of your head will ever feel normal. Thanks, Marion


Posted by @colleenyoung, May 6, 2016

Welcome @maidmarion.
I'm glad that you were able to post a message.
Two weeks is not a very long time post surgery. I suspect you will experience more healing yet, but I've never had this procedure done. @david33 recently went through the surgery and may have more to add. I'm tagging @alicein_wonderland on this message to bring her into the discussion as well.


Posted by @maidmarion, May 6, 2016

Thank you Colleen. I am glad I found a place where I can talk to others and know that I am not alone.


Posted by @scotthinojosa, Dec 19, 2016

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 _-_


Posted by @vbrunette, Fri, Jan 13 at 2:51pm CDT

Oh,so 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!


Posted by @mkell13, Sat, Mar 11 at 1:05pm CDT

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?

Posted by @JustinMcClanahan, Sat, Mar 11 at 2:46pm CDT

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?


Posted by @mkell13, Sat, Mar 11 at 2:56pm CDT

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.


Posted by @mkell13, Sat, Mar 11 at 3:56pm CDT

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?


Posted by @vbrunette, Mon, Mar 13 at 12:32pm CDT

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.

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