Aa
Just wanted to introduce myself
My name is Heather and I have been reading this forum for the past week. I was recently told that I have a mild case of Chiari Malformation about a year ago after suffering from many different things for years. I was toldb when I was younger that it was pretty much all in my head for years and they medicated me for things like pain, depression, anxiety, bipolar disorder and other things.
Things started getting bad around the time I turned 20 (I am now 21) and have gotten ten times worse in the last month and a half. It has gotten so bad that I can't really seem to leave the house. I have missed out on family dinners and parties, lost a majority of my friends because they think that I am make excuses when asked to hang out and I have not been on a real date with my boyfriend in months.
I fear that I can no longer control my body and that I am missing everything that I would like to do.
I can barely drive and can no longer ride in a car. I am almost literaly stuck at home and if I do go out the only things I can think of are "when will I get home" or "is there a place near by that I can lay down". As you can tell I dont have fun when I go out. I just suck it up to be there for the people that matter most to me.
Everyone says that it will be ok, things will get better, or that they are sorry I feel bad. I must say that even though they are trying to be nice I tend to get a little annoyed because they talk to me like I have a cold or the flu and that I will wake up tomorrow and everything will be fine. No one I know has ever experienced this. They don't really no what I am going through and I felt alone until I found this forum.
I am in so much pain in my head, neck and lower back. Sometimes it spreads to my legs and then I get that horrible pins and needles thing in my hands and feet. Once in a while my whole arm will go numb. My gag reflex is constant and I feel like someone is choking me unless I lay down. The car make me sick.
I live in a small town named Guthrie and it takes me atleast 20-30 minutes in a car to get to any good medical help. So it's really hard for me to even get down to see my doctors.
I really would like to talk to all of you and make some really good friendships with the people that really know what I am going through.
Sorry this was a little long. I'm just really scared and confused about a lot of things.
Hope to talk to you soon,
Heather
Things started getting bad around the time I turned 20 (I am now 21) and have gotten ten times worse in the last month and a half. It has gotten so bad that I can't really seem to leave the house. I have missed out on family dinners and parties, lost a majority of my friends because they think that I am make excuses when asked to hang out and I have not been on a real date with my boyfriend in months.
I fear that I can no longer control my body and that I am missing everything that I would like to do.
I can barely drive and can no longer ride in a car. I am almost literaly stuck at home and if I do go out the only things I can think of are "when will I get home" or "is there a place near by that I can lay down". As you can tell I dont have fun when I go out. I just suck it up to be there for the people that matter most to me.
Everyone says that it will be ok, things will get better, or that they are sorry I feel bad. I must say that even though they are trying to be nice I tend to get a little annoyed because they talk to me like I have a cold or the flu and that I will wake up tomorrow and everything will be fine. No one I know has ever experienced this. They don't really no what I am going through and I felt alone until I found this forum.
I am in so much pain in my head, neck and lower back. Sometimes it spreads to my legs and then I get that horrible pins and needles thing in my hands and feet. Once in a while my whole arm will go numb. My gag reflex is constant and I feel like someone is choking me unless I lay down. The car make me sick.
I live in a small town named Guthrie and it takes me atleast 20-30 minutes in a car to get to any good medical help. So it's really hard for me to even get down to see my doctors.
I really would like to talk to all of you and make some really good friendships with the people that really know what I am going through.
Sorry this was a little long. I'm just really scared and confused about a lot of things.
Hope to talk to you soon,
Heather
Hi Heather! I'm so sorry to hear all that you are going through. You have really had a rough time haven't you. The medical professionals tend to blame us when they can't figure something out. In my experience, they will perform one test and if it is negative they just sort of give up if they don't find anything. I think that it is even more common in young women.
Your friends and family may be frightened by what is happening to you. I am not excusing them, it's a possibility though. They are actually pretty scared----and to top it off they really don't have a clue. They sort of dismiss us. I finally got angry with a loved one was giving me similar treatment. I told her "and you don't have any idea how this feels, not even one clue". I was really angry and had had enough.
Here is the bottom line though. They need to support you and be there for you. Let them know what you need so they can help. I know it's hard.
well I have said enough.
Welcome to the forum. You will find amazing support here as we as education to help with all of this.
(((Hugs)))
Your friends and family may be frightened by what is happening to you. I am not excusing them, it's a possibility though. They are actually pretty scared----and to top it off they really don't have a clue. They sort of dismiss us. I finally got angry with a loved one was giving me similar treatment. I told her "and you don't have any idea how this feels, not even one clue". I was really angry and had had enough.
Here is the bottom line though. They need to support you and be there for you. Let them know what you need so they can help. I know it's hard.
well I have said enough.
Welcome to the forum. You will find amazing support here as we as education to help with all of this.
(((Hugs)))
I usually fall asleep during the MRI. I have had so many, it's not a big deal...but I am not claustrophobic...I have heard they can sedate you for it. The best thing you can do is take control of your health, do a ton of research. I come here and to another site almost every day. I don't always post, but I read what others are going through.
It will help to have a journal of symptoms you feel...it's hard to remember them and what they felt like. Also, bring someone with you to your NS appointment. It will be overwhelming so having someone else there will help. Also, get a 2nd opinion, preferably with a specialist.
It will help to have a journal of symptoms you feel...it's hard to remember them and what they felt like. Also, bring someone with you to your NS appointment. It will be overwhelming so having someone else there will help. Also, get a 2nd opinion, preferably with a specialist.
Hi Heather and Sallie. Welcome to the Chiari (pronounced Key-are-e) community.
I would suggest that you both take time to visit the health pages located at the top right of the page.
Heather I can identify with your concerns, I have learned to take each day as I find it. Deal with things as they arise. You have come to a good place for support and advice :)
Ray
I would suggest that you both take time to visit the health pages located at the top right of the page.
Heather I can identify with your concerns, I have learned to take each day as I find it. Deal with things as they arise. You have come to a good place for support and advice :)
Ray
Hello and welcome!
I completely understand how you are feeling. I feel like my whole life is on hold. I am in pain constantly and it is so hard to live a normal life. I can't stand riding in a car either so I rarely go anywhere. The pain consumes me, but day by day I get through and hope that in my future there will be some relief. I don't have much of a support system at home and this is a very nice place to turn to. It is so comforting to be able to talk with others who know what you are going through. Please ask any questions you have and let us know how your appointment goes. I wish you the best!
I completely understand how you are feeling. I feel like my whole life is on hold. I am in pain constantly and it is so hard to live a normal life. I can't stand riding in a car either so I rarely go anywhere. The pain consumes me, but day by day I get through and hope that in my future there will be some relief. I don't have much of a support system at home and this is a very nice place to turn to. It is so comforting to be able to talk with others who know what you are going through. Please ask any questions you have and let us know how your appointment goes. I wish you the best!
Thank you Redkim! I understand that things like MRI's CT's and bloodwork. Which makes me even more nervous because I am Claustrophic and I have Trypanophobia.
I AM TERRIFIED!
I AM TERRIFIED!
Well I dont know too much about it myself. I was told a year or so ago that I had it, but my symptoms have just gotten bad enough that they are controlling my life. I have an appointment with a neurosurgeon this coming Friday so I am hoping to learn more. That is also the reason I joined this forum.
I am just getting tired of being passed off on other doctors and getting run arounds, but I think I'm finally getting somewhere with it.
I would be glad to message you with the answers I get Friday. I'm just a little nervous of everything going on.
I am just getting tired of being passed off on other doctors and getting run arounds, but I think I'm finally getting somewhere with it.
I would be glad to message you with the answers I get Friday. I'm just a little nervous of everything going on.
Welcome! You will get so much help and support here.
I don't want you to think your life is over, hopefully with treatment you will be able to resume some normal activities. I had Chiari surgery Jan 2009 and while I am not cured, and I still have weeks or days where I am too tired to do much. I do work fulltime, go out, figure skate. I too have moments where I am out that I need to rest, and will find anyplace to just sit down.
The road to getting help will be a long one, but you're not alone on your journey. Please come here as often as you need. The first thing to do it find yourself a Chiari expert in your area, Razzle can help with that. If you post a thread topic, with your area and that you need a specialiast Razzle will send you a list. Plus, some other people might be able to tell you if they're in your area and who they went to (good or bad).
There are some books you can buy online also, Amazon has them.
I suggest getting some blood work done (esp. Vit D and B12).
I don't want you to think your life is over, hopefully with treatment you will be able to resume some normal activities. I had Chiari surgery Jan 2009 and while I am not cured, and I still have weeks or days where I am too tired to do much. I do work fulltime, go out, figure skate. I too have moments where I am out that I need to rest, and will find anyplace to just sit down.
The road to getting help will be a long one, but you're not alone on your journey. Please come here as often as you need. The first thing to do it find yourself a Chiari expert in your area, Razzle can help with that. If you post a thread topic, with your area and that you need a specialiast Razzle will send you a list. Plus, some other people might be able to tell you if they're in your area and who they went to (good or bad).
There are some books you can buy online also, Amazon has them.
I suggest getting some blood work done (esp. Vit D and B12).
Hey, I don't have this condition, but if you don't mind I would like to know more about it? I suffer from some things myself but I don't know if they are similar or anything. I have never heard of your condition before. But I am a really understanding person and always want to try and understand people the best I can, I would like to know what it means to have Chiari Malformation. We live in seperate countries but I am still happy to lend some ears :)
COMMUNITY LEADER
HI and welcome to the Chiari forum.
I am happy to have u join us, so sorry for the reason u had to seek us out.....but, u will deff find others that totally understand here.
Looking back I now know chiari was the reason for me missing out on so much too.....
U deff need to locate a chiari specialist...and u may need to travel to get to one .
No worries on how long ur post is...lol....when u need to vent this is the best place to do it.
If u have ne questions just tac them on here.....
Glad to meet u : )
"selma"
I am happy to have u join us, so sorry for the reason u had to seek us out.....but, u will deff find others that totally understand here.
Looking back I now know chiari was the reason for me missing out on so much too.....
U deff need to locate a chiari specialist...and u may need to travel to get to one .
No worries on how long ur post is...lol....when u need to vent this is the best place to do it.
If u have ne questions just tac them on here.....
Glad to meet u : )
"selma"
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