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BARBGEO's Photo BARBGEO Posts: 784
6/30/13 7:13 P

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I don' t know much about Chiari...and I forget much of what people tell me (BAD BARB!), but honest.
I found my headaches to be GREATLY improved by being very near the ocean. Which may sound very strange, but migraine sufferers also say that the lower and fewer changes from the barometric pressure makes the difference. Because the change was SO drastic, we actually moved. I live just a couple of blocks off the harbor, and can usually smell the salty air... Here is another 'tip'...
I found a simple 12 hr nasal spray (yes, it lasts 12 hrs). I use that most of all when I am getting a headache--it is basically salt mix and a bit of glycerin, pretty safe. IT HELPS SO MUCH!!! I don't remember WHY, I just know it helps me. I don't know if any of that will help..

It is horrible that you are having to cope with this at 25. I feel lousy that I lost years -- and I am over twice that! I hope you can find some relief. There are some GREAT publications about dealing with the grief involved in a life that has changed dramatically.

All the best,
Barb G


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HANOEMZ's Photo HANOEMZ Posts: 33
6/29/13 3:15 P

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Thanks for the reply my doctor have put me on to dif migraines pills and diamox to slow the production off sf put the pain killers only work for alittle while then i guess my body gets use to them maybe.But on a happy note i finally got my nuro app for next mon hopeful he can help i use hate them thought off living on pain pills for the rest of my live, Im only 25 its bearly began.

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TWINSFITBY40's Photo TWINSFITBY40 SparkPoints: (34,002)
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6/29/13 12:50 A

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Hello HANOEMZ, welcome to the team. I too had surgery in march of 2009 for chiari malformation 1. My herniation was 13mm. I, also still have migraines along with other health issues. Barbgeo is correct that there are several team members with chiari. If you have any questions feel free to post and I am sure you will get your answer. Not getting too much out of my doctors as far as pain relief but they are still working with me to make the best of it all... Have a blessed day...Maria emoticon emoticon

"Treat people as if they were what they ought to be and you help them to become what they are capable of being. "Johann Wolfgang von Goethe


-MARIA

LEADER - HEAD, BRAIN OR SPINE SURGERY SPARKTEAM


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BARBGEO's Photo BARBGEO Posts: 784
6/25/13 5:18 P

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Hey there!
I don't have Chari, but there are several here who do... Don't give up... and you can send some of them private messages too... Just look on here and make a note to them. Sometimes some of our members are not on every day, since our energy lags some...
Glad you found us!!!
Welcome!!!

All the best,
Barb G


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HANOEMZ's Photo HANOEMZ Posts: 33
6/24/13 6:33 P

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hi all its so great (in a way) to find other people out there with chiari. after four years of constant headaches and migraines and so many other symptoms that for awhile i just thought where all in my head head cause they where just so random i have been diagnosed with chari type 1 with a 7mm herniation. In a way im glad to find out what is really wrong with me i was told it was idiopathic intercranial hypertension and was put though 5 very painful lps (taking severel failed attemps everytime) to reduce fluid build up which never worked and just gave me low pressure headaches that would last for atleast a week.
Id really like to know what people do for pain relief nothing the doctor are giving me works.


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MUMMY22BOYS's Photo MUMMY22BOYS SparkPoints: (0)
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5/26/13 1:01 A

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I had surgery in August 2012. Having symptoms return and not to thrilled. Also had a very large syrinx and dr couldn't believe I was still walking. Go back to surgeon in November for MRIs unless things get worse. I hate that we have to deal with this and the fact that we can hide most of illness behind a fake smile so often get called hypochondriacs or made felt like we are making things up. So glad to see some others in here just hate the circumstances as to why.

Ashley

Southeast Texas


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BARBGEO's Photo BARBGEO Posts: 784
3/11/13 9:38 A

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OMGosh guys, thank you. I am so glad to see more going on here...you have no idea! There are so many different ways our brains can go through trauma--accident is not the only way... and to see so much info being shared is vital to me. THANK YOU ALL!!!! YOU ROCK!

All the best,
Barb G


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KGWINDER's Photo KGWINDER Posts: 1,600
3/10/13 11:31 A

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The new little guy is half shepherd, possible Belgium rather than German; the rest of the litter appeared full GSD, but my guy was the runt and doesn't. Time and a DNA test will tell.

I'm working on the staff for a local Shamrock Run...however pets aren't a part of it...that would be fun! Ps just read about chiari and learned something new the brain has tonsils!

K Winder


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LOULEW28 SparkPoints: (0)
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3/10/13 9:51 A

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I only pray that my family never has to go through what I do with the everyday stuff.
What kind of puppy do you have now? Animals are such a wonderful distraction from all the unhappy stuff. They keep me busy and usually laughing.
My husband is a owner operator and was fixing his trailer lights in a parking lot. He saw a car pull up, a young girl and old man got out, took out a table, two chairs and a sign. Neil kept working and when he looked up again he saw they had put out a sign that said pies. He said it is very common down south for families to bring items into town to sell so he went over to see what kind of pies they were selling. He asked the little girl and she looked up at him with a big smile and said "Sir, I don't have any pies but I do have Puppies." While she promptly placed one in his arms.
So my husband brought home another puppy from Tennessee in February. No idea what this puppy is although he is the goofiest, cutest thing I have ever seen but such a mishmash it will be fun to see him grow. So I have my shep/lab mix and we have Rocket Sprocket Tennessee Pie that keep me busy now and hopefully for many years to come. I can't wait until the weather is a little better and the gravel roads a little less muddy so we can go on some long walks for exercise.
My daughter and I have signed up for a 5k run/walk on Mothers Day this year that benefits a local animal shelter. You run with your dog or one of the shelter dogs. My daughter is going to run with my puppy and I will walk with her dog and Rocket so we need to start training.
Something fun to look forward to and keep me motivated.
Hope you all are having a great day,
Amy

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KGWINDER's Photo KGWINDER Posts: 1,600
3/9/13 5:10 A

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Get it. My family is sometimes the worst of all. Because I look ok on the outside every thing must be ok...but there are mornings that I drive myself crazy just trying to get started...keys, coat, glasses, to do list, turning off the stove, remembering my cell phone (charged)...honestly it has never gotten back to being normal.

Thank you for the friend add and sweet comment about my shep/lab...our loyal Lou we lost in May but I now have a new pup...born Sept 16. One very busy, yet happy part of life currently.

Glad we're here for you.

K Winder


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LOULEW28 SparkPoints: (0)
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3/8/13 1:59 P

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Thank you, it's not very hard to do that so I hope you don't mind but I added you too.
Support is wonderful and I am glad that I found someone who can understand since even my family has trouble sometimes.


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KGWINDER's Photo KGWINDER Posts: 1,600
3/8/13 1:41 P

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To add her as a friend:
1) to to left of her comment where her screen name is there is a tab for her sparkpag
Click on it
2) on the upper right of her sparkpage are three parallel bars...the very top one is for adding her as a friend
Click on it
3) Jump up and down. You reached out for support and found someone tailor made for understanding your situation.
Best to both of you...

K Winder


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LOULEW28 SparkPoints: (0)
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3/8/13 11:02 A

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I would love to add you as a friend, if I only knew how. I will try to figure that part out. I was very fortunate that my first surgery went well and until a year ago I was feeling great. In December of 2011 I started having pain in my face, teeth and jaw on the left side. Then numbness in my right side so my general practitioner sent me for an MRI right away due to my history. That led straight to the neurosurgeon who compared my past MRI and it was pretty obvious that all the bone removed from the skull and C1,C2 had grown back. Then he told me I am the 1 in about 1500 chiari patients where the trigeminal nerve is also compromised so that is where the facial pain is coming from. As soon as the spinal flow is severely compromised they will do surgery again. I am not worried about the surgery since I had such a wonderful outcome last time but I do know that every pound overweight decreases your chance of full recovery. So it is in my best interests to get this off.
Yes living with chiari is weird since so many of the symptoms can't be seen by the naked eye. People get "tired" of hearing that you hurt, they just want you to get over it or quit complaining.
They don't understand that at least for me I am not scared of heights I get vertigo that I can't control and it is not a mind over matter situation it is a physical response my body has to spatial differences at higher levels. Escalators that are moving and open stairs are a huge obstacle and no I am not to lazy to take the stairs I just can't keep my balance on them.
I am thankful that I do have a condition that there is help for, that I can lead a very normal life and do things with my family. I just need to learn to take better care of myself so that I can be with them as long as possible to the fullest extent.
Please tell me more about your journey and how you are doing. I don't get a chance to talk to many other chiari patients so I am very glad to have meant you.
Amy

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LOULEW28 SparkPoints: (0)
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3/8/13 10:39 A

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I am happy to say that according to recent blood work I am a very healthy "fat" person. My fasting blood sugar number was 95. I would like it lower since both parents are type 2 diabetics but I am happy with that. My cholesterol is very good so for right now I am feeling very good about those numbers.
It is the neurosugeon who is making an issue of the weight. He literally called me fat 5 times the last appointment I had with him. He made it very clear indeed that at my current weight he does not think I would have a very good recovery. That is why the weight loss is so important. I really wish I could find another surgeon but have been told he is the only one in Iowa who does this surgery and when I called my original surgeon in WI I was told he no longer does Chiari patients and Mayo said that they won't take me unless they can do something for me that the surgeon here can't and they don't believe they can so I am stuck with him or nothing.
Right now I am opting for nothing. It's not even because he called me fat, it's because he doesn't listen when you talk to him. I really need a doctor who listens to me so that if something is feeling strange after the surgery they will listen when I tell them. I don't think this surgeon would. It seems like he thinks he has all the answers and tells you what you should feel, symptoms you should have ect.
So far the diet is helping and God has his plan for me and my malformed brain so I am just taking things as they come and I know it will all work out in the end.
I am so looking forward to the farmers markets starting and all the local fresh produce.
Amy

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TWINSFITBY40's Photo TWINSFITBY40 SparkPoints: (34,002)
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3/8/13 10:30 A

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Hello LOULEW28, My name is Maria and I also had decompression surgery 4 years ago this St. Patrick's Day. I totally understand your frustration and I also did not know that there could be a possibility of a second surgery. That blew me away... Anyhow, I'd like to lend you my support throughout your weight loss journey as I too know how lonely it can be when many do not understand what one is going through and the limitations we face, even after surgery. I have added you as a friend and I hope you can do the same for me. Good luck with your new goals and I am here if you need it.. God bless you and bring you peace today.... emoticon

"Treat people as if they were what they ought to be and you help them to become what they are capable of being. "Johann Wolfgang von Goethe


-MARIA

LEADER - HEAD, BRAIN OR SPINE SURGERY SPARKTEAM


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KGWINDER's Photo KGWINDER Posts: 1,600
3/8/13 8:44 A

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So lonely that I'm completely unfamiliar with what you are going through. I noticed when I had my brain surgery that everyone understood cancer..but not the stuff that goes with brain problems...lack of books, support groups, walks to raise funds, and people that know the right words because if they don't understand it they rather stay silent. That does make it lonely.

I'm so sorry that you are facing a second surgery and more so that you feel this wall in front of you to get more weight off before the surgery. May I encourage you to put the emphasis on healthy eating rather than weight loss? With the one even if the pounds don't come off, you will know you help your body's healing power improve...the other you will feel negative energy right before a challenging event.

Be kind to yourself and know even if we don't specifically understand your path that we do understand the frustration that follows a major illness...you are not alone, you will be strong, and wishes for a Spring full of delightful vegetable eating!

K Winder


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LOULEW28 SparkPoints: (0)
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3/7/13 11:59 A

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Hi,
I am a chiari patient who went through the decompression surgery in 1994. I have recently been having problems again and the MRI shows that all the bone that was removed in the original surgery has grown back. Another surgery is in my future but at this point the spinal fluid is still flowing at a decent rate so the surgeon is recommending putting off surgery for as long as possible.
I didn't know that a second surgery was even a thought but I guess it is. I do realize at my current weight that my surgery and recovery would be severely compromised compared to my first surgery when I weighed around 120 lbs. So I am doing my best to get some weight off before surgery has to be done.
On August 27th 2012 I started on a low carb diet that cut out all sugars and artificial sweeteners to try to get the inflammation in my body under control. I will say it has helped tremendously with the pain management. I have went from 239 lbs to 205.5 lbs but have a lot more to go. I seem to have hit the ultimate plateau which has been going on since the first part of November so I decided to get more involved on the Sparkpeople website to get going again.
Please let me know if any of you are on your second go round with surgery and what diet and excersizes have helped you along the way.
Hope to hear from you, chiari can be a lonely diagnosis,
Amy

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