Chiari Malformation type 1

Posted by anorwalk @anorwalk, Jun 19, 2013

Hi,

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.

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?

Liked by maidmarion

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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

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@maidmarion

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

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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.

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@maidmarion

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

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

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@staceybeyer

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.

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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.

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@staceybeyer

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.

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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.

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@staceybeyer

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.

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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?

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@staceybeyer

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.

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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.

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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 _-_

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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!

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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?

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@mkell13

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?

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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?

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@mkell13

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?

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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.

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@mkell13

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?

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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?

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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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