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-   -   New to this.... (https://www.neurotalk.org/arnold-chiari-malformation-and-syringomyelia/158395-new-to-this.html)

Chiarionmymind 10-02-2011 09:22 AM

New to this....
 
Hi Everyone,
I was recently diagnosed with Chiari 1 a few weeks ago. I've been symptomatic for a while now, and Ill spare you the details.
So far, I've gotten two different opinions. One from a neurosurgeon, and a second from a neurologist. I went to the neurologist, because I wanted an opinion from someone who didn't have a vested interest in doing surgery, and whose training wasn't so centered in surgery based resolutions.
To my dismay, he immediately referred me to a neurosurgeon who is well versed in Chiari decompression surgery. He even pulled some strings to get me an immediate appointment.
Im hoping this doctor will tell me something different (like I don't need the surgery). But at the same time, I am preparing myself by reading as much as I can about Chiari, decompression surgery, and subsequent recovery, so I can make a knowledgable decision, and play an active role in the process.
What are your experiences with surgery and recovery? I'd like to hear from you, even your thoughts if you are still weighing out whether or not to have it done at all.
Thanks in advance.

MAETIGGER 12-31-2011 03:48 AM

I have been dealing with my symptoms various ways for the past 5-6 yrs.I have a 10mm herniation & was advised to be very conservative consider surgury as a last resort if symptoms become so disabling there is nothing to loose by trying it.Because it is not a cure.It comes with its own risks,side effects,and may not stop your symptoms,or may do so only temporaily. Once I got the just of that I figured medicine,massage thearpy, injections in the neck do the same thing bring some short term relief with very miniml to no side effects. So that is the route I have chosen for now.Yet I st here tying with a nasty occipital headache,and chronic arm pain flared up today.I can just tell you my choice & why.Now as far as the surgury goes there are alot of sucess stories and temporary sucess stories, a chiari isnt a tumor and it doesnt really have a predicable course. It can sit like a silent volcanoe your whole life, erupt now & then, or become like Mt St Helens and then there is no longer a choice and surgury must be done,there is a site called ConquerChiari with alot of useful information

EKKM0817 01-05-2012 01:04 PM

I understand
 
I had surgery in August 2010 for Chiari Malformation. My headaches I was having are completely gone, but I have had other problems since then. I have to get injections in the back of my head and neck for pain and am trying medications for vertigo, nausea and dizziness. Are they related to the Chiari? Maybe not, I'm not sure. I do know the surgery got rid of my headaches that were taking me out of my everyday activities. I would do it again even though I have other challenges now. :):)

razzle51 01-06-2012 10:16 AM

Injections in the neck are a big NO NO for someone with chiari .. you better talk with yor dr..

ginnie 01-06-2012 12:10 PM

Hello and welcome
 
I just wanted to say welcome to Neuro talk. If you have been diagosed with Chiari,, I would go for another opinion and not take more injections unless you are positive it is the right protocal. I hope a good solution can be found for you. I also had heard that the injections arn't necessarly for this disorder. I have not looked at the hard research yet, but you can google it for a little more information. My best wishes for you. ginnie

EKKM0817 01-12-2012 02:05 PM

Quote:

Originally Posted by ginnie (Post 838411)
I just wanted to say welcome to Neuro talk. If you have been diagosed with Chiari,, I would go for another opinion and not take more injections unless you are positive it is the right protocal. I hope a good solution can be found for you. I also had heard that the injections arn't necessarly for this disorder. I have not looked at the hard research yet, but you can google it for a little more information. My best wishes for you. ginnie

Do you mean the injections aren't good for the Chiari or the pains? The Chiari was removed from the surgery and is till gone according to the MRI's. The Neuro surgeon referred me to the Neurologist, who after a year of trying different things suggested these injections as a last resort for the pain. He is well aware of my Chiari though. Did I make a mistake?

ginnie 01-12-2012 03:03 PM

Hello, I did more research too
 
I did alot more research. the injections are right when it is a last resort. I had to figure out what the research said. Sometimes not every article is clear. On this past Sat. I went on line for about an hour. I am so sorry you had to endure this condition at all. I did know it was serious, but not to the degree I now know about. Your neurosurgeon is right on the money in what he suggested. I guess what I origionally looked up was injections before surgery, without the gambit of all the tests and protocals. I may be a little slow about finding out about conditions, but I do try to get educated as much as possible. Please let me know how you are doing. I am glad you found a physician, that is able to really know about Chairi malformation. I also learned there were three different kinds of the condition. I have a box on my table here, full of conditions that I try to look up to the best of my ability. sorry I didn't do the full amount of research. I needed to read more than just one article, which I did do. Let me know how it goes. I do care about you.ginnie

EKKM0817 01-12-2012 04:24 PM

Quote:

Originally Posted by ginnie (Post 840575)
I did alot more research. the injections are right when it is a last resort. I had to figure out what the research said. Sometimes not every article is clear. On this past Sat. I went on line for about an hour. I am so sorry you had to endure this condition at all. I did know it was serious, but not to the degree I now know about. Your neurosurgeon is right on the money in what he suggested. I guess what I origionally looked up was injections before surgery, without the gambit of all the tests and protocals. I may be a little slow about finding out about conditions, but I do try to get educated as much as possible. Please let me know how you are doing. I am glad you found a physician, that is able to really know about Chairi malformation. I also learned there were three different kinds of the condition. I have a box on my table here, full of conditions that I try to look up to the best of my ability. sorry I didn't do the full amount of research. I needed to read more than just one article, which I did do. Let me know how it goes. I do care about you.ginnie

Thank you so much for all of you information. I try to research as well, but I am not very good at it or don't do it the right way. I was just so frustrated! The surgery fixed everything for a few months then out of nowhere these new things came up. It was taking me away from my two little boys and after a year I said yes to the injections. I hate taking medicine ane use it only if I have to. I was a little nervouse that I had made a mistake. I really appreciate you taking the time to help me. It is always good to know that people care and are good.

gmbbmom 01-28-2012 03:04 PM

@Chiarionmymind- I'm so sorry you're going through this.
If your symptoms are bearable please consider other treatments before surgery. ( That's just my opinion)
Try massage therapy ( not the chiropractor though), heat and cold packs on your neck or any area where you're having head, neck, shoulder pain. I also use something called Biofreeze. It's a gel that you rub on your neck, and it gets really cold. It's wonderful! I also recommend all natural pills, such as Curamin, which work as an anti inflammatory and a pain pill, but it's all natural. Also, push yourself to walk daily. Any doctor who tells you to stop all form of exercise.. FIRE HIM! Exercise will greatly help with the pain, you can trust me on this one! Good luck!


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