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.

@spoiledheather

Has anyone on here had surgery for chiari malformation??

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Yes I have but I'm afraid my outcome was not that good so I will spare u the details, just fine everything there is to know about it knolage is everything !

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@duke77

Yes I have but I'm afraid my outcome was not that good so I will spare u the details, just fine everything there is to know about it knolage is everything !

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Hi, @duke77 – I think your experiences and comments here would be helpful to others in this discussion on chiari malformation. Wondering if you would share more about the outcome you mentioned was not that good, and also what you were saying about knowledge being everything?

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@lisalucier

Hi, @duke77 – I think your experiences and comments here would be helpful to others in this discussion on chiari malformation. Wondering if you would share more about the outcome you mentioned was not that good, and also what you were saying about knowledge being everything?

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lisaluciier,Hi have a whole lot of deficits like to type this is taking me forever, I can only walk around 2000 steps intense pain burning and numbness in arms hands and back, my right leg goes numb besides the brain fog lol these are the things that happen in a regular day that I am aware of.

Liked by Lisa Lucier

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@duke77

lisaluciier,Hi have a whole lot of deficits like to type this is taking me forever, I can only walk around 2000 steps intense pain burning and numbness in arms hands and back, my right leg goes numb besides the brain fog lol these are the things that happen in a regular day that I am aware of.

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Hi, @duke77 – sorry that to type your post took forever. I can imagine that would be hard to take.

Hoping some of the other members who have posted here — like @tracyeylens @mfann @luckygirl @david33 @oh_suzie_q @giglgirlnm @jillweinandt @denise32 — will join in with some thoughts on the slow typing and only being able to walk around 2000 steps; the intense pain, burning and numbness in your arms, hands and back; and the brain fog.

What is the next step in your treatment, @duke77?

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@lisalucier

Hi, @duke77 – sorry that to type your post took forever. I can imagine that would be hard to take.

Hoping some of the other members who have posted here — like @tracyeylens @mfann @luckygirl @david33 @oh_suzie_q @giglgirlnm @jillweinandt @denise32 — will join in with some thoughts on the slow typing and only being able to walk around 2000 steps; the intense pain, burning and numbness in your arms, hands and back; and the brain fog.

What is the next step in your treatment, @duke77?

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That's ok ,lisaluciierq_, I don't mind that's why I don't say much I feel as though I belong it's just nice to know we are all in the same boat sort of lol

Liked by Lisa Lucier

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I was diagnosed with both Chiari Malformation and Syringomyelia back in August 2015. Had surgery in September 2015. My surgery was successful. It accomplished what it was meant to do by stopping the progression. I do have issues with my hand, but had EIP Opponensplasty last summer to improve the usage of my hand. I continue to be monitored by a neurologist yearly. As of my last MRI this past spring, everything continues to look good.

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@trouse

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!
trouse

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Thank you so much for answering me on Chiari malformation surgery! I am very scared!! I have 2 doctors saying I need it! I have serve nerve damage on my left side and I'm told I have a cyst on in spinal cord and they are hoping by doing the Chiari surgery this will get my spinal fluid to move and fix it??? I'm in so much pain I dnt know what to do!

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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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I'm having surgery on Sept 4th and I'm scared to death! I've concealed 2 times but the nerve pain is so bad I'll try anything! Did you have her e pain before surgery? If so is it better now? And how does the back of yr head feel after surgery!?

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@ashleybryant

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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My problem is not just Chiari malformation I also have a cyst in my spinal cord and the nerve pain is hell!

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I'm in the same boat as you ! The numbness,and sticking burning on my whole left side is too much some days and I know you know what I mean I'm having the Chiari surgery on Sept 4th and I'm scared!!! Please pray for me,and my god be with you also!! God bless you

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@nancy82415

I was diagnosed with both Chiari Malformation and Syringomyelia back in August 2015. Had surgery in September 2015. My surgery was successful. It accomplished what it was meant to do by stopping the progression. I do have issues with my hand, but had EIP Opponensplasty last summer to improve the usage of my hand. I continue to be monitored by a neurologist yearly. As of my last MRI this past spring, everything continues to look good.

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I have the problems as you ! I have Chiari and a cyst on my spinal cord they are hoping the surgery will make my spinal fluid will move after surgery and fix the cyst! But I'm scared to death to have surgery! How lo g did it take to heal after surgery? And did it fix yr nerve pain?

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@david33

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.
Thanks

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Oh god yr scarring me ! I'm having surgery on Sept 4th and I'm freaking out! I can deal with the bad headaches, but the nerve pain is pure HELL! Did it help ur nerve pain? And how are you doing? Does it take a long time to heal after surgery

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@anorwalk

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.

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I thought about the mayo clinic but its too far away from me ! Im have surgery on Sept 4th please pray for me ! I'll let everyone know how it goes if I wake up! It's in God's hands

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@resawaller

I thought about the mayo clinic but its too far away from me ! Im have surgery on Sept 4th please pray for me ! I'll let everyone know how it goes if I wake up! It's in God's hands

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God bless you and I'll pray for you also, I know the pain yr in , it's horrible! God bless you!

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@donnak69

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

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Have you had the Chiari surgery? And do you have nerve damage?

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