Chiari Malformation (update pg 2) | |
Only Me (OP) Strawberry Girl User ID: 24634605 United States 04/05/2013 07:55 AM Report Abusive Post Report Copyright Violation | Nobody? :'( Goodbye, halcyon days... There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory mentioned, which states that this has already happened. |
Anonymous Coward User ID: 36181685 United States 04/06/2013 06:17 PM Report Abusive Post Report Copyright Violation | [link to www.ninds.nih.gov] Quoting: linkChiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation. CMs may develop when the bony space is smaller than normal, causing the cerebellum and brain stem to be pushed downward into the foramen magnum and into the upper spinal canal. The resulting pressure on the cerebellum and brain stem may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)— the clear liquid that surrounds and cushions the brain and spinal cord—to and from the brain. |
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TheBiss User ID: 26101948 United States 04/06/2013 06:21 PM Report Abusive Post Report Copyright Violation | Midichlorian count [link to www.grainmill.coop] - Bulk foods, long term storage solutions [link to www.CatawbaCoops.com] - Unique A-Frame chicken coop plans |
Only Me (OP) Strawberry Girl User ID: 34792354 United States 04/06/2013 06:22 PM Report Abusive Post Report Copyright Violation | I'm not doing very well actually. Most people who have it show no symptoms or very few vague symptoms. I can think back over the years and think of some things that fit. It usually starts showing up when someone has some sort of facial or head trauma. I had sinus surgery a few months ago so that must be what started it. I've been stumbling around in a fog, severe headaches, passing out....it's really a crappy crappy thing to have. Only one way to fix it too. Fucking brain surgery. Goodbye, halcyon days... There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory mentioned, which states that this has already happened. |
Only Me (OP) Strawberry Girl User ID: 34792354 United States 04/06/2013 06:23 PM Report Abusive Post Report Copyright Violation | And Lmao at me being off balance. I am a little off :-p Goodbye, halcyon days... There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory mentioned, which states that this has already happened. |
Only Me (OP) Strawberry Girl User ID: 34792354 United States 04/06/2013 06:25 PM Report Abusive Post Report Copyright Violation | I'm a Jedi? Is that because my brain is too big for my skull? ****giggle**** Goodbye, halcyon days... There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory mentioned, which states that this has already happened. |
Anonymous Coward User ID: 28167778 United States 04/06/2013 06:28 PM Report Abusive Post Report Copyright Violation | I know a person who has it. They had it since birth, or the parents were aware of it right away. Lots of balance and turning issues, maybe it is different if you have it very early on. Good luck to you and get someone who has dealt with it frequently to help you decide what to do. |
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MissionInvisible User ID: 27358843 United States 04/06/2013 06:31 PM Report Abusive Post Report Copyright Violation | A ballerina with balance issues. Pffft!!! Quoting: Only Me I'm not doing very well actually. Most people who have it show no symptoms or very few vague symptoms. I can think back over the years and think of some things that fit. It usually starts showing up when someone has some sort of facial or head trauma. I had sinus surgery a few months ago so that must be what started it. I've been stumbling around in a fog, severe headaches, passing out....it's really a crappy crappy thing to have. Only one way to fix it too. Fucking brain surgery. I am pretty familiar with it actually. I went through a long phase with my neurosurgeon who we both thought I had it but after many scans/visit it was determined was not all chiari related... Have you ever heard of Ehlers-Danlos Syndrome. I have EDS and at one time had some very serious chiari related issues...I have had a couple of spine surgeries, but never had the Chiari surgery performed fixing some other issues seemed to help, there are a few groups on FB I could direct you to as well if you were interested. |
Only Me (OP) Strawberry Girl User ID: 34792354 United States 04/06/2013 06:32 PM Report Abusive Post Report Copyright Violation | I knew there would be glpers aware of this rarity! I have type 1 and I think it's less severe than the kind that is present from birth. As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled. This is scary. Goodbye, halcyon days... There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory mentioned, which states that this has already happened. |
Only Me (OP) Strawberry Girl User ID: 34792354 United States 04/06/2013 06:34 PM Report Abusive Post Report Copyright Violation | I am pretty familiar with it actually. I went through a long phase with my neurosurgeon who we both thought I had it but after many scans/visit it was determined was not all chiari related... Have you ever heard of Ehlers-Danlos Syndrome. I have EDS and at one time had some very serious chiari related issues...I have had a couple of spine surgeries, but never had the Chiari surgery performed fixing some other issues seemed to help, there are a few groups on FB I could direct you to as well if you were interested. I have heard of EDS but I don't know much about it. I guess my neurologist can tell me more. Blegh - gotta suck to.have that Goodbye, halcyon days... There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory mentioned, which states that this has already happened. |
Anonymous Coward User ID: 18150467 United States 04/06/2013 06:35 PM Report Abusive Post Report Copyright Violation | I knew there would be glpers aware of this rarity! Quoting: Only Me I have type 1 and I think it's less severe than the kind that is present from birth. As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled. This is scary. That sounds extreme. There are neurosurgeons who have more experience with it than that. My friend had to go to Boston, and the biggest concern they had was the possibility of a "revision" surgery, nothing like you are describing. She had Chiari I Malformation. |
MissionInvisible User ID: 27358843 United States 04/06/2013 06:37 PM Report Abusive Post Report Copyright Violation | I knew there would be glpers aware of this rarity! Quoting: Only Me I have type 1 and I think it's less severe than the kind that is present from birth. As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled. This is scary. Definitely get some second opinions. I saw doctor after doctor with my issues. Chiari is sometimes seen with scolisis and tethered cord syndrome. If you have tethered cord syndrome, the tethered cord release can help with pulling down on your neck...or if you have syringomyelia along with the chiari they can do some things to take the pressure off. I am not trying to scare you by listing off all these things, its just sometimes symptoms can mimic each other. |
Anonymous Coward User ID: 18150467 United States 04/06/2013 06:39 PM Report Abusive Post Report Copyright Violation | I knew there would be glpers aware of this rarity! Quoting: Only Me I have type 1 and I think it's less severe than the kind that is present from birth. As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled. This is scary. Definitely get some second opinions. I saw doctor after doctor with my issues. Chiari is sometimes seen with scolisis and tethered cord syndrome. If you have tethered cord syndrome, the tethered cord release can help with pulling down on your neck...or if you have syringomyelia along with the chiari they can do some things to take the pressure off. I am not trying to scare you by listing off all these things, its just sometimes symptoms can mimic each other. My friend's daughter had the syringomyelia (cyst in the spine) but it was caused by the Chiari. The surgery resolved that as well. A good neurologist would rule out tethered cord on MRI. |
Only Me (OP) Strawberry Girl User ID: 34792354 United States 04/06/2013 06:39 PM Report Abusive Post Report Copyright Violation | I knew there would be glpers aware of this rarity! Quoting: Only Me I have type 1 and I think it's less severe than the kind that is present from birth. As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled. This is scary. That sounds extreme. There are neurosurgeons who have more experience with it than that. My friend had to go to Boston, and the biggest concern they had was the possibility of a "revision" surgery, nothing like you are describing. She had Chiari I Malformation. Yeah? Maybe I can find a good neurosurgeon who can help me avoid the major issues. I think the thing about chiari is that it's different for everyone who has it. Some have no problem and others have major problems with it. I only just found out about it - hopefully it will turn out ok like your friend's daughter .. Goodbye, halcyon days... There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory mentioned, which states that this has already happened. |
MissionInvisible User ID: 27358843 United States 04/06/2013 06:41 PM Report Abusive Post Report Copyright Violation | I knew there would be glpers aware of this rarity! Quoting: Only Me I have type 1 and I think it's less severe than the kind that is present from birth. As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled. This is scary. Definitely get some second opinions. I saw doctor after doctor with my issues. Chiari is sometimes seen with scolisis and tethered cord syndrome. If you have tethered cord syndrome, the tethered cord release can help with pulling down on your neck...or if you have syringomyelia along with the chiari they can do some things to take the pressure off. I am not trying to scare you by listing off all these things, its just sometimes symptoms can mimic each other. My friend's daughter had the syringomyelia (cyst in the spine) but it was caused by the Chiari. The surgery resolved that as well. A good neurologist would rule out tethered cord on MRI. bleh scan after scan after scan. Its good to see all the various angles though! |
Only Me (OP) Strawberry Girl User ID: 34792354 United States 04/06/2013 06:42 PM Report Abusive Post Report Copyright Violation | I knew there would be glpers aware of this rarity! Quoting: Only Me I have type 1 and I think it's less severe than the kind that is present from birth. As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled. This is scary. Definitely get some second opinions. I saw doctor after doctor with my issues. Chiari is sometimes seen with scolisis and tethered cord syndrome. If you have tethered cord syndrome, the tethered cord release can help with pulling down on your neck...or if you have syringomyelia along with the chiari they can do some things to take the pressure off. I am not trying to scare you by listing off all these things, its just sometimes symptoms can mimic each other. My cord isn't tethered and I don't think I have syringomyelia. My csf spaces are crowded though. It's funny how the symptoms are so vague and could mean just about anything. I've run the laboratory test gamut recently, and they even did an ekg. It's been crazy Goodbye, halcyon days... There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory mentioned, which states that this has already happened. |
abeliever Members User ID: 17868616 United States 04/06/2013 06:42 PM Report Abusive Post Report Copyright Violation | One out of three people have it. Tell tale sign that you are one of the three people who have a chiari malformation of the brain is to look in the mirror to see if your uvula is crooked. One out of 10 of those have to have surgery to allow spinal fluid to flow around the brain. It is not a big deal. Don't worry even if you need the surgery. It's ok. |
Only Me (OP) Strawberry Girl User ID: 34792354 United States 04/06/2013 06:43 PM Report Abusive Post Report Copyright Violation | I knew there would be glpers aware of this rarity! Quoting: Only Me I have type 1 and I think it's less severe than the kind that is present from birth. As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled. This is scary. Definitely get some second opinions. I saw doctor after doctor with my issues. Chiari is sometimes seen with scolisis and tethered cord syndrome. If you have tethered cord syndrome, the tethered cord release can help with pulling down on your neck...or if you have syringomyelia along with the chiari they can do some things to take the pressure off. I am not trying to scare you by listing off all these things, its just sometimes symptoms can mimic each other. My friend's daughter had the syringomyelia (cyst in the spine) but it was caused by the Chiari. The surgery resolved that as well. A good neurologist would rule out tethered cord on MRI. bleh scan after scan after scan. Its good to see all the various angles though! Does the brain MRI show tethered cord or is that a separate scan? Goodbye, halcyon days... There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory mentioned, which states that this has already happened. |
Anonymous Coward User ID: 18150467 United States 04/06/2013 06:44 PM Report Abusive Post Report Copyright Violation | I knew there would be glpers aware of this rarity! Quoting: Only Me I have type 1 and I think it's less severe than the kind that is present from birth. As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled. This is scary. Definitely get some second opinions. I saw doctor after doctor with my issues. Chiari is sometimes seen with scolisis and tethered cord syndrome. If you have tethered cord syndrome, the tethered cord release can help with pulling down on your neck...or if you have syringomyelia along with the chiari they can do some things to take the pressure off. I am not trying to scare you by listing off all these things, its just sometimes symptoms can mimic each other. My friend's daughter had the syringomyelia (cyst in the spine) but it was caused by the Chiari. The surgery resolved that as well. A good neurologist would rule out tethered cord on MRI. bleh scan after scan after scan. Its good to see all the various angles though! Actually it was ONE scan that caught all of it. I was there, and it wasn't nearly as frightening as you are making it out to be. The OP just needs an opinion from a neurologist with experience with this specific condition. |
Anonymous Coward User ID: 2525436 Canada 04/06/2013 06:44 PM Report Abusive Post Report Copyright Violation | All my prayers to you Only Me. I had a brain anerysm and I know first hand how frightening brain surgery can be. I was extremely lucky they could operate via the blood vessel in my leg. The surgery went well and now its been almost seven years. Try not to worry, I know its hard though. |
Only Me (OP) Strawberry Girl User ID: 34792354 United States 04/06/2013 06:44 PM Report Abusive Post Report Copyright Violation | One out of three people have it. Quoting: abeliever Tell tale sign that you are one of the three people who have a chiari malformation of the brain is to look in the mirror to see if your uvula is crooked. One out of 10 of those have to have surgery to allow spinal fluid to flow around the brain. It is not a big deal. Don't worry even if you need the surgery. It's ok. One out of three? Our neuropathologist told me it was rare in adults. Goodbye, halcyon days... There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory mentioned, which states that this has already happened. |
Only Me (OP) Strawberry Girl User ID: 34792354 United States 04/06/2013 06:47 PM Report Abusive Post Report Copyright Violation | All my prayers to you Only Me. I had a brain anerysm and I know first hand how frightening brain surgery can be. I was Quoting: Anonymous Coward 2525436 extremely lucky they could operate via the blood vessel in my leg. The surgery went well and now its been almost seven years. Try not to worry, I know its hard though. Thanks. Glad you're doing better. As for the person saying it's no big deal, like I said before, for most it isn't a big deal and for others it can be physically devastating. I just need to be evaluated further. I think it's the fainting and constant brain fog that makes me so scared. Still, hearing people say it's no big deal kinda makes me feel less weary of it :-) Goodbye, halcyon days... There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory mentioned, which states that this has already happened. |
MissionInvisible User ID: 27358843 United States 04/06/2013 06:48 PM Report Abusive Post Report Copyright Violation | I knew there would be glpers aware of this rarity! Quoting: Only Me I have type 1 and I think it's less severe than the kind that is present from birth. As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled. This is scary. Definitely get some second opinions. I saw doctor after doctor with my issues. Chiari is sometimes seen with scolisis and tethered cord syndrome. If you have tethered cord syndrome, the tethered cord release can help with pulling down on your neck...or if you have syringomyelia along with the chiari they can do some things to take the pressure off. I am not trying to scare you by listing off all these things, its just sometimes symptoms can mimic each other. My cord isn't tethered and I don't think I have syringomyelia. My csf spaces are crowded though. It's funny how the symptoms are so vague and could mean just about anything. I've run the laboratory test gamut recently, and they even did an ekg. It's been crazy Yea when it gets really severe it can affect so many different parts of the body...symptoms are definitely across the board, the EKG could have had to do with the way your brain and heart were communicating? maybe? Not sure, I had to have a few of them to track my heart patterns. When the swelling on the spinal cord gets really bad it can cause issues in areas of the body you did not even have issues with! I was having all kinds of balance, studdering, vertigo, you name it (much of it was EDS related, but their symptoms definitely overlap). I hope you can find some answers and nothing too invasive has to happen. |
Anonymous Coward User ID: 18150467 United States 04/06/2013 06:49 PM Report Abusive Post Report Copyright Violation | One out of three people have it. Quoting: abeliever Tell tale sign that you are one of the three people who have a chiari malformation of the brain is to look in the mirror to see if your uvula is crooked. One out of 10 of those have to have surgery to allow spinal fluid to flow around the brain. It is not a big deal. Don't worry even if you need the surgery. It's ok. One out of three? Our neuropathologist told me it was rare in adults. Op - this may be helpful: Chiari support group - [link to www.chiarisupport.org] |
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Only Me (OP) Strawberry Girl User ID: 34792354 United States 04/06/2013 06:51 PM Report Abusive Post Report Copyright Violation | Thanks guys -I love all of you <3 Last Edited by Only Me on 04/06/2013 06:51 PM Goodbye, halcyon days... There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory mentioned, which states that this has already happened. |
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Only Me (OP) Strawberry Girl User ID: 34792354 United States 04/06/2013 06:52 PM Report Abusive Post Report Copyright Violation | What's that? And yes to the Epsom salts with baking soda and lavender. I've been doing that! Goodbye, halcyon days... There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory mentioned, which states that this has already happened. |