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Chiari 2 decompression in 1998, these symptoms feel similar, can this come back?

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Old 03-18-2010, 09:10 PM   #1
sephiro499
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Help Chiari 2 decompression in 1998, these symptoms feel similar, can this come back?

I was eighteen when I had the surgery in 1998. Details are sparse since I don't remember much but I know it was the chiari malformation type 2 and I remember the DR saying something about removing part of a vertebra.

Back then I remember having tingingling in hands and feet along with headaches and this sensation that I was going to fall along with unexplained pain in my face.

Today I have all of these problems along with not being able to think when not laying flat. Now I know using the word think is not descriptive so let me try and give you some examples. I don't feel like i'm experiencing life the same. I don't watch movies or play video games because they are just too hard to follow. If i watch a movie I get lost in what is going on. If I go to the grocery store I have a heck of a time picking out things. Like I went to find a spice but they have like 50 spices all with similar lables. I gave up because I couldn't find it.

And the pain in my face is too distratcting. I have a great trigger point book from amazon that explains referred pain but I have it on both sides. which I think makes it less likely it is a muscular thing.

I donot' want to move my head. I start to get lost in what I'm doing. Looking down hurts, so I'll normally scan the document into my computer and edit it since I can just keep my head straight. When I go under the desk or something I feel like this head rush. Inititally I thought it was sinus congestions but after seeing two ENTs they say I'm fine.

A long time ago I did have orthostatic hypotension but I remember what that felt like. It was the initial woosh feelign when you first stand up. This just stays with me until I lay down for a certain amount of time.

I also have pain in the back of my neck along with being slighly off balance. And it feels like pressure in my head, from the top of my neck and my eyebrows, temples and cheeks.

I have to be careful to only do one thing at a time. I tried to take the yogurt lid off while walking down the steps and slid down the bottom steps. I get this buzzing feelign in my hands and feet, moreso in my feet. It also feels like someone strapped weights to my legs.

Now if I lay down, and I have to lay down on my side inititally, 3/4 off these problems go away. It takes about a half hour. If I lay in my bed with my laptop on its side and me on my side I can actually think! I can actually enjoy a game or a video or something.

This all strikes me as very odd. I thought maybe it could be a muscular thing but I am not sure that explains the not feeling like i'm as a part of reality as I should be.

My memory is fuzzy from what lead up to the events of my initial decompression. My main questions is can this even come back. No one told me it could and I figured once the hole is bigger that is the end of it.
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Old 03-24-2010, 06:29 AM   #2
abbydabby
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Originally Posted by sephiro499 View Post
I was eighteen when I had the surgery in 1998. Details are sparse since I don't remember much but I know it was the chiari malformation type 2 and I remember the DR saying something about removing part of a vertebra.

Back then I remember having tingingling in hands and feet along with headaches and this sensation that I was going to fall along with unexplained pain in my face.

Today I have all of these problems along with not being able to think when not laying flat. Now I know using the word think is not descriptive so let me try and give you some examples. I don't feel like i'm experiencing life the same. I don't watch movies or play video games because they are just too hard to follow. If i watch a movie I get lost in what is going on. If I go to the grocery store I have a heck of a time picking out things. Like I went to find a spice but they have like 50 spices all with similar lables. I gave up because I couldn't find it.

And the pain in my face is too distratcting. I have a great trigger point book from amazon that explains referred pain but I have it on both sides. which I think makes it less likely it is a muscular thing.

I donot' want to move my head. I start to get lost in what I'm doing. Looking down hurts, so I'll normally scan the document into my computer and edit it since I can just keep my head straight. When I go under the desk or something I feel like this head rush. Inititally I thought it was sinus congestions but after seeing two ENTs they say I'm fine.

A long time ago I did have orthostatic hypotension but I remember what that felt like. It was the initial woosh feelign when you first stand up. This just stays with me until I lay down for a certain amount of time.

I also have pain in the back of my neck along with being slighly off balance. And it feels like pressure in my head, from the top of my neck and my eyebrows, temples and cheeks.

I have to be careful to only do one thing at a time. I tried to take the yogurt lid off while walking down the steps and slid down the bottom steps. I get this buzzing feelign in my hands and feet, moreso in my feet. It also feels like someone strapped weights to my legs.

Now if I lay down, and I have to lay down on my side inititally, 3/4 off these problems go away. It takes about a half hour. If I lay in my bed with my laptop on its side and me on my side I can actually think! I can actually enjoy a game or a video or something.

This all strikes me as very odd. I thought maybe it could be a muscular thing but I am not sure that explains the not feeling like i'm as a part of reality as I should be.

My memory is fuzzy from what lead up to the events of my initial decompression. My main questions is can this even come back. No one told me it could and I figured once the hole is bigger that is the end of it.
I had my surgery in late Nov. 2009...developed a leak and had to have it done all over again right away. Last night I experienced severe pain in my head and neck...everything was fine up until now, except for the usual posst surgery healing aches and pains...I'm wondering the same thing...can it come back? I have the orthoscopic blood pressure thing now too.
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Old 03-24-2010, 02:01 PM   #3
janeanne
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Quote:
Originally Posted by abbydabby View Post
I had my surgery in late Nov. 2009...developed a leak and had to have it done all over again right away. Last night I experienced severe pain in my head and neck...everything was fine up until now, except for the usual posst surgery healing aches and pains...I'm wondering the same thing...can it come back? I have the orthoscopic blood pressure thing now too.
Hello, my name is Jane, and I had the Chiari Surg last Oct. I felt like I was given a second chance on life. I didn't need a cain to walk. And after a while the headaches went away. I still have problems swallowing. And now I have the pain in the back of my head where they did the surg. I was wondering if this is normal, or if I should see my doc. I feel like I am going backwords again. thanks...
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Old 11-26-2010, 06:52 PM   #4
abbydabby
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Originally Posted by janeanne View Post
Hello, my name is Jane, and I had the Chiari Surg last Oct. I felt like I was given a second chance on life. I didn't need a cain to walk. And after a while the headaches went away. I still have problems swallowing. And now I have the pain in the back of my head where they did the surg. I was wondering if this is normal, or if I should see my doc. I feel like I am going backwords again. thanks...
I had two surgeries for my Chiari in Nov and Dec of 2009. I never really did feel like I thought I should after all this...NOW I am unbalanced, have pain and pressure at the base of my skull and severe headaches...Back to the neurosurgeon again in a couple of weeks...Think I'll go to Duke this time. Debbie
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Old 12-05-2010, 01:20 PM   #5
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Quote:
Originally Posted by abbydabby View Post
I had two surgeries for my Chiari in Nov and Dec of 2009. I never really did feel like I thought I should after all this...NOW I am unbalanced, have pain and pressure at the base of my skull and severe headaches...Back to the neurosurgeon again in a couple of weeks...Think I'll go to Duke this time. Debbie
had surgery in 09,, Aug,, developed spinal menigitis, spinal fluid leaking out of my neck,, revision surgery two weeks later, wish I had never had this barbaric surgery done, but I was having problems with my arms,, legs,, hands,, everything,, when surgery didnt clear any of it up,, all I got was, well we tried,,, IF YOU dont have symptoms,, and the Chiari is mentioned as a incidental finding, do not go running out to get put undder the knife, were talking brain surgery here folks, dont ask for trouble
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Old 01-02-2011, 08:04 PM   #6
pom4life
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Default Can Chiari Come back.

Yes, i had the chiari decompression surgery back in june of 2006, when i was 13. a chiari malformation can grow back. i would get your symptoms checked out with your neurosurgeon as soon as possible. Hope all goes well for you.
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Old 01-12-2011, 08:23 AM   #7
abbydabby
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Quote:
Originally Posted by sephiro499 View Post
I was eighteen when I had the surgery in 1998. Details are sparse since I don't remember much but I know it was the chiari malformation type 2 and I remember the DR saying something about removing part of a vertebra.

Back then I remember having tingingling in hands and feet along with headaches and this sensation that I was going to fall along with unexplained pain in my face.

Today I have all of these problems along with not being able to think when not laying flat. Now I know using the word think is not descriptive so let me try and give you some examples. I don't feel like i'm experiencing life the same. I don't watch movies or play video games because they are just too hard to follow. If i watch a movie I get lost in what is going on. If I go to the grocery store I have a heck of a time picking out things. Like I went to find a spice but they have like 50 spices all with similar lables. I gave up because I couldn't find it.

And the pain in my face is too distratcting. I have a great trigger point book from amazon that explains referred pain but I have it on both sides. which I think makes it less likely it is a muscular thing.

I donot' want to move my head. I start to get lost in what I'm doing. Looking down hurts, so I'll normally scan the document into my computer and edit it since I can just keep my head straight. When I go under the desk or something I feel like this head rush. Inititally I thought it was sinus congestions but after seeing two ENTs they say I'm fine.

A long time ago I did have orthostatic hypotension but I remember what that felt like. It was the initial woosh feelign when you first stand up. This just stays with me until I lay down for a certain amount of time.

I also have pain in the back of my neck along with being slighly off balance. And it feels like pressure in my head, from the top of my neck and my eyebrows, temples and cheeks.

I have to be careful to only do one thing at a time. I tried to take the yogurt lid off while walking down the steps and slid down the bottom steps. I get this buzzing feelign in my hands and feet, moreso in my feet. It also feels like someone strapped weights to my legs.

Now if I lay down, and I have to lay down on my side inititally, 3/4 off these problems go away. It takes about a half hour. If I lay in my bed with my laptop on its side and me on my side I can actually think! I can actually enjoy a game or a video or something.

This all strikes me as very odd. I thought maybe it could be a muscular thing but I am not sure that explains the not feeling like i'm as a part of reality as I should be.

My memory is fuzzy from what lead up to the events of my initial decompression. My main questions is can this even come back. No one told me it could and I figured once the hole is bigger that is the end of it.
Does your face pain feel like it could be a dental problem and then radiates upward through your face? I had L sided pain like that before my Chiari surgery and now, 1 year later with an 11 mm to a 17.88 mm herniation, I have the same pain in the right side of my face. Both times the dentists and endodontists ruled out any tooth issues.
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Old 01-28-2011, 06:28 PM   #8
itsy
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I'm new to this board so I hope my reply posts correctly.

Yes, things can come back and you can require more surgery (if the symptoms override the risks of brain surgery).

For what it's worth, here's my story:

I had a posterior fossa decompression in '90 at 19yrs old for my CM I that was causing progressive neural issues as well as syringomyelia (sp?) from a syst in the upper lumbar region of my spine. I healed well (being a relatively healthy young adult helps!) and went on to get 2 college degrees, get married, and have 2 children.

About '04 I started to notice different symptoms reappearing. Not anything surgery worthy at first but gradually they worsened and combined with a auto crash in '05, I wound up back in the search for a doctor that had enough Chiari experience to tell me what could be done. By '08 I had foud the TCI in NY and they looked at my herniation and symptoms. It turns out I had indeed reherniated and required surgery. They also found that I had Occult Tethered Cord Syndrome, and I also had my spinal cord untethered.

Long story short, I needed a 2nd CM surgery because my spine was tethered and reherniated my cerebral tonsils. Now hopefully without the pull my brain will stay put. So far 2 years out it seems to be holding up.


I hope this helps and you and the others who have posted are able to find some relief.
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