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.

@vbrunette

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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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.

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@spoiledheather

Has anyone on here had surgery for chiari malformation??

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Yes I had decompression surgery 12 years ago. I lead a very normal life and the only problem I have is with my back. I have damaged nerves in my back and I take pregablin twice a day.

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@vbrunette

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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My I ask if you think you had it done early enough that it helped with the out come of your surgery.

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@vbrunette

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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NannieSue,
Please tell us a little bit about your diagnosis. You mentioned in another post that the malformation is small. What more can you tell us? Are you considering surgery?

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@vbrunette

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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NannieSue,
I also wanted to tag @dink75 @vbrunette and @luckygirl on this discussion. You may also wish to watch this video Q&A with Dr. Nicholas Wetjen, neurosurgeon, and Dr. Mai-Lan Ho, neuroradiologist, where they talk about congenital anomalies of the brain and skull, including chiari malformation.

– #MayoClinicNeuroChat about Congenital Anomalies of Brain and Skull http://mayocl.in/2qRkMqh

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Sounds like you really do need a good neurosurgeon.

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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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Hi @mekell13, I know this post is from March, but i was wondering what you ended up doing?

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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 had a hard time getting it diagnosed in my area so i now had a dr in Chicago that is about 6 hours from me that specialized in chairi malformation and said it is a chairi and is at my c2-c3. They are now ordering more MRI’s of my lumbar sacrial and thoraic areas. My symptons have got worse where i fall and do get hurt so im hoping it is done soon. Thank you for inquiring.

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Hi everyone, I was diagnosed 2 years ago with 1.5 cm herniation. Long story short, I am not a canidate for surgery because of prior stabelization of c1 and c2 for a condition called Os Odontieum. I am looking for ways and suggestions to help with pain control. I have been taking Norco for the last 2 years, but since I just found out that surgery is not an option, i can’t see myself using the norco for the remaining years. Please share your sucess on pain control.
.

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Hi Debi,
Welcome to Connect. I moved your message to this existing discussion about Chiari Malformation so that you can meet others talking about pain management. Please meet @nanniesue4 @luckygirl @maidmarion @dink75 @vbrunette and @david33.

Does the neurologist that you consulted specialize in chiari malformation? Since you’re not a candidate for surgery, what other pain control options have been suggested?

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He is not a specialist in Chiari, but has done decompression surgery, he is one of the best neurosurgeon in our area. I have been with him since 2009 and trust him. He is not quick to do surgeries, that is what I like about him. For pain control, I am now on 40mg of norco a day, but it does not help. I have an appointment with my pain specialist next Friday, but i am not hopeful he will be able to help. My regular doctor told me i was to complicated for him, lol. So I decided to change doctors. I have tried to research options for pain control, but have not been able to find anything.
Thank you for redponding.

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I have been diagnosed about 6 yrs ago. I had 2 decompression surgeries with no relief. Has anyone else experience these same issues

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Hi, i have a 5 mm herniation and have had decompression surgery. My dr only scheduled it after an interview that he discovered i could be expierencing nerve damage to my eyes. I do recommend surgery if you’re having issues. Vertigo, cordination, breathing, swallowing, vision issues. I may not be comfortable flying or able to drive on the interstate but i have mostly normal days now. I only take a muscle relaxer on thw bad days. Before surgery though, i was on valium and oxycodone for the pain. I couldnt work and now i work fulltime. I know that every cass is different but i feel like my life would be less than what it is if i had avoided surgery. If that makes sense.

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Am new here but not new to the world of Chiari. Was diagnosed in 88′ and had surgery in 89 with a shunt for my syrnix. Had a revision of the shunt in 91 and had 10 good years before “the bottom fell out again” for me. Returned to my nsg who diagnosed me with scoliosis, which often goes with Chiari and had two fusions to secure my neck. Lasted a few years then had a diagnosis of EDS along with another failed fusion. This time, am fused from the skull to T3 and although I have restrictions with movement ( Must turn body to turn neck), I have had NO Pain in my neck or upper thoracic region for 5 years. Manage to function well and have had no Occipital headaches since a C2 Occipital nerve root decompression, two years ago. Now, most neurosurgeons operate to decompress Chiari only if symptoms are severe and a syrnix is present, in my case a syrnix covered 80% of my spine and I had complete loss of feeling sensation on my entire left side, progressing to my right.
Never regret any surgeries I have had, and feel fortunate to have the quality of life I do have.

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@kjh2017, @giglgirlnm, and @shane656, welcome to Connect. We are glad to have three new members to this rare discussion and thank you all for sharing a bit about your story with the rest of the members of this group.

I hope @luckygirl will join my welcome and share her experience with decompression surgery with you. @giglgirlnm, would you mind sharing a bit about your experience with decompression surgery with @shane656? @kjh2017, it looks like you also may be able to share your experience with decompression surgery. Did it give your relief?

Liked by luckygirl

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