Hello Everyone. I’m “Kris”. I just found this site and am new here. I just wanted to take a moment to say “Hello” to everyone and introduce myself. I have Chairi1 but do not know how much it is a contributor to my overall health even though I do have most of the standard symptoms and diagnosis similar to everyone else… And like a lot of folks here I am sharing in the battle to have it recognized, properly evaluated and acknowledged. I would be nice to have some validation and to be taken seriously. Right now what I needed most was just to share some common ground with others who are enduring the same experiences and traveling along all in the same boat. So, stop by sometime if you feel like it, I look forward to meeting you and hope that I can positively contribute to the group. Thank You for giving me a chance and for taking the time to stop by and read my greeting! 
Until then.
Hi Kris I’m Helen my 11 year old son has chiari type 1 I only knw the basics too
Hello, Hope all is well with you today! I hope you get all that you need from this site. Having Chiari can get very lonely at times, having doctors not understanding you and family too. It is nice to have people that understand what yo are going through
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Hi Chris,
I’m Kalie and I had a Chiari 2 malformation which was decompressed in 2004. I needed a shunt and have found to be shunt resistant. I now have hydrocephalus which causes all the same symptoms. I am basically homebound right now and pretty miserable. Glad you joined the group. Keep posting.
My name is Mel, short for Melissa.......I have Chiari 1 and had decompression surgery 11/2012. It took years
to finally figure things out, and find the problem. Anyway, I just recently submitted my medical records to The Chiari
Institute in Wisconsin for more testing, seems I've had a prolapse and need further surgery. So nervous, but very eager to
further investigate what else may be going on. Prayers to you Kris, it really is so helpful to have a place to find others that really understand how we feel. Mel
Welcome Kris,
I was just decompressed 8 weeks ago. I JUST turned the corner the last couple days and am SO excited! I’m praying it continues! My surgery went smoothly, no complications, back to work at 7 weeks as an RN and weaning off some long acting pain meds! Good luck, you are NOT alone!!
helen smith said:
Hi Kris I'm Helen my 11 year old son has chiari type 1 I only knw the basics too
Hi Helen
My boy has it too - please tell me what behaviour issues your son has - or is he fine? - I don't even know what is normal anymore - I cant figure out what is behaviour issues or the teens years (turning 13 tomorrow) or the Chiara??
He is very irritating, to get him to do anything is a struggle - always have to ask twice sometimes 3 times - everything is a hassle.
Thank you to everyone who replied! Seems like most of folks on here who are replying have had the surgery. And soon after diagnosis. I feel like I’ve been kept under a rock. I was diagnosed in 2005 and have had worsening symptoms for the last 10 years. I’m in a wheelchair part time now. They keep telling me the chairi has nothing to do with my symptoms and won’t do anything beyond just now repeating a t-1 MRI after 5 years and I can’t even get them to give me the results other then to say there has been no significant change. They know I had dialation from hydrocephalus sometime between 2005&2010 and that I sustained head trauma. I understand this is often overlooked and misdiagnosed but it seems like many people end up on the right track long before now. Has anyone else been struggling with this for as long as I have or longer or is the healthcare system that I am in just exceptionally poor? I finally got an appointment with a civilian provider but I’ve no idea if they are going to take me seriously or not or if I’m just going to keep deteriorating in a slow decline with no answeres as to why. Has anyone had good fortune with a provider in PA?
Hi Kris Thank you for responding to my post. It certainly helps to know there are so many caring members on this site. I am in such a beginning point, so far as information, but I don't plan to have surgery because of my age. I am hoping I will get some kind of confirmation from the neurologist tomorrow that the pains will continue as they are and not progress to extended time segments. I have been blessed with good health until now and I've already enjoyed more years than God's word promises each one of us, so I really don't want to come across complaining. It does sound like you have been suffering with symptoms for a long time, without a lot of satisfaction. I will be praying for some comfort for you.
CiCi,
Thank you for your reply. It did not at all seem to me like you were complaining. No ones struggles here are any less valid then anyone elses. We are all in the same boat. I apologize if my moment of frustration came across badly. I most certainly do not wish to alienate people with negativity. I’m in the VA health care system and if you have seen any of the news then you know it’s not always the best organization on the planet in some departments or aspects. There are a whole lot of good people but the ones who aren’t sure do make it tough. I don’t know why I keep getting surprised by it but I still do and It sure seemed at the moment like Some of us vets are trapped in a time warp in an organization that hasn’t caught up with the times. I do appreciate you bringing to my attention that I did not come across in a positive or encouraging way. Sometimes we need those behaviors brought to our attention so we can work on them. I thank you for the prayers and return them to you as well. I believe God knows our struggles and that it is known that we will continuously fail, but I think that might be the point. It’s the trying and striving and working at things that is expected of us, not us achieving perfection. I have accepted that this is my lot in life for a longtime now and I have done my best to adapt and do thank god for the littlest of blessings but it is hard and I don’t always understand and I loose focus. So I thank you for the wisdom of your years and for your kindness and I do hope you will keep us apprised of your journey as it is equally as important as my own. Hugs! Kris
In my belief system, God gives his toughest battles to create his strongest soldiers. This life is but a blink in what is left to come. I think we will all be surprised by what we thought was important at the time. This is likely only a glimps and I can’t even begin to imagine where our priorities will lie in the next chapter. Thank you for your reply.
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Hi Kris,
I was diagnosised almost 2 years ago but was questioned about 7 years ago after I passed out at work. They first thought it might be connected to the head trauma I had previously or from donating blood. (never passed out before or after from donating) I have many of the standard symptoms that have been "conected/linked" to other diagnosises. I was often told my symptomswere not due to Chiari but no one could tell me why I had these symptons.
The NS I currently see is my third but he is very knowledgeable about Chiari. I go back to see him May 11th to review my data (headche) I beleive this data will determine whether he feels sugery is needed.
Good Luck,
Crazy grandma
Hi, Kris I'm new too, I was diagnosised in Feb I'm having decompression in Oct.I know its hard but i've found alot of great people with info on this site and other support groups on face book. The bes I can say is read and ask questions alot of them. Wish you the best and sending hugs I know this is a hard stuggel
Hi, Kris, we haven’t seen you here on the boards lately. I was wondering how you are doing with your Chiari? I hope your Summer has been relaxing.
Hugs,
Laurie
Hi Kris, your post was in April, but we are in Sept now..how are you..I am very new..and waiting for my surgery..I am struggling daily..but I think we have to think positive..at least we know what is wrong with us..we haven't got any disease we just have mechanical condition...that can't be cured...so surgery is the only way ..but chin up we are not the only one..
Hi Katiem I am really glad to read your post even though it was in April, how are you doing now..are you still keeping OK,, and still on medication?
Katie said:
Welcome Kris,
I was just decompressed 8 weeks ago. I JUST turned the corner the last couple days and am SO excited! I'm praying it continues! My surgery went smoothly, no complications, back to work at 7 weeks as an RN and weaning off some long acting pain meds! Good luck, you are NOT alone!!
Hi Dance Mom, I am glad reading your post I wish your surgery will be successful, please let us know how you are getting on..I am waiting to have my second opinion with the other neuro surgeon for decompression I have chiari 1..I also glad to find this website
Dance mom said:
Hi, Kris I'm new too, I was diagnosised in Feb I'm having decompression in Oct.I know its hard but i've found alot of great people with info on this site and other support groups on face book. The bes I can say is read and ask questions alot of them. Wish you the best and sending hugs I know this is a hard stuggel
Hi Kris
Welcome to the group, you came to the right place. We are all here to support and answer questions ;)
mandi from LA
Hi Kris,
I am new too. I have recently been diagnosed after suffering for eight years. I am having surgery in two days, Monday, November 16th. I am nervous but very hopeful that I will pull through with flying colors. I will post how I am doing and know you will get support here. I wish I knew my diagnoses a long time ago, because this site is a wealth of information. Good luck on your journey.
Hi Kris, I'm almost 4 weeks from my decompression its been a long road. I wish you the best and hope for a smooth recovery. Keep up on your meds, and always ask question of whats going on. I had some good nurses and a few bad. If poss while your in the hospital always have someone with you to make sure you get what you need, and ask those questions that you cant. My first few days were a daze. P.s. When you get home dont over do it , I did. I also became that )crazy lady at stores hugging pillows trying to find one to get comfy. Im still looking. also ice,ice ice. meds :)