support

[Sue6213]

I have had Chiari Malformation now since 2002. My doctor final after years was able to at least find out in 2006 what is really was and who to go to for help with it. Doctors in my area are scarce. I have had several MRI's and head and neck pain almost everyday. In the past 5 years I have many of the other symptoms of Chiari, like memory loss and not being able to think of the words I want to say and the numbness in my hands and feet. as well as many more things that I hate to deal with. I have to this day did not find a doctor that I trust or believe or that seems to know Chiari. My days are filled with unknowns. But the thing that has gotten me the most in it is that I have no support from anyone. I am a single, divorced Mother of 5 and 62 years old. I have a brother and a sister both older then me and it seems that my Chiari is more then they can handle. I feel very lost and alone in this and just not sure where to turn next. Is it a regular thing for anyone else that people back away with help and support on this. I held in most of what was bothering me or hurting all the time I am with them so they don't get bugged by it. I cant keep acting like everything is fine when its not.  Any advice from any one would be a big help to me. I feel if I have to pursue the surgery I should have some support. If not I feel why bother. Thank you for your time.

[Sue6213]

I am not really sure when it started for me but my first symptom was the horrible head and neck pain that had me down and out and endlessly going back and forth to my Doctor for it and the why. That was back in 2002 when the pain began and I was working a night shift job that seemed to make things worse. Finally with many more times to my doctor and with the pain never letting up with anything he ordered for me he seemed to take a better interest and followed up with another doctor who had a little better knowledge of Chiari. In 2006 my doctor called me at home after yet another Appointment with him in pain and said he knew what the problem was. He said after three MRI'S and talking to this other doctor it was clear what the problem was. That doctor was not a Chiari specialist or anything like that he just knew more then my Doctor did. From there I was sent to another doctor and that day I had my oldest daughter with me. But that doctor had me get another MRI as well and said yes it seemed to be Chiari but to not worry about it or anything of it and go on with life as I knew it. There fore my daughter being with me feels the same and pretty much excused it all as no big deal. At that time is was just the pain and as bad as it was I decided to bear with it as best I can and move on . So much more has come about since then as well as the same horrible pain and I have no reason to think other wise that its not caused by the Chiari with the knowledge I now have of it. My memory is not what it was. I tried to find a job I could do to get back in some sense of normal and was unable to learn what I had to do in the quick span I was told. I have the numbness and tingleness in my hands and feet and legs and often times I have blurred vision. IN the past year or so I have been unsteady in walking as well. and I fell twice with no real reason why. Not hurt and OK after but it was strange that I fell. I have only recently told my kids of the later symptoms. The thought all this time it was only the head and neck pain. But they still seem unsure and unsupportive.  I am planning on trying to get to my doctor soon and see if in my area there may be a new doctor that is up to date with Chiari and can help. since my last time to a doctor at all about it back in 2007 anyone that would be a good choice is a distance away and I would need help with getting there. I knew that my family was not up to that choice so I just let it go. But with the new things that are going on I know I better get to someone. But thanks for you help as well.

[selmaS]

  Hi and welcome to the Chiari forum.

U said u have Chiari since 2002? Do u mean that ur Chiari is acquired or is that when u were officially DX'd?

I ask bcuz Chiari is often found to be congenital and many of us are just not aware that we have it until we r DX'd...and go yrs with symptoms that are not considered part of the Chiari DX until we learn more on how Chiari affects us.

As the others have mentioned u r not alone ....there are many here that will offer u support tho it is emotional and educational.....we can not be with u to help with the things a family could.

For ur family, remember Chiari is not well known or understood even in the medical community....so, for family and friends not to understand is normal, but I know it hurts they just do not support us and never mind what the issues are,....just be there, no questions if they understand...and one way to get that is to take just one with u to a well informed Chiari specialist....that and patience.

((hugs))

[Sue6213]

Thank you so much. Your kind words mean  a lot. I find it hard to understand how Family can be so cold. I have spent so many hours and time pretending that I was happy and feeling good when I was with them . I guess I just thought they could understand. I find myself not wanting to be with them at all if I have to watch my p's and Q's so they don't get upset with me. My depression is getting the best of me with this and I just needed and new and different outlet. The support you give me makes a world of difference. I just wish my family could get that as well.
Thank you again.

[Sue6213]

Thank you so much for your kind words and help. I really appreciate it. I have found in the years of going through this that I am not alone in it. I was in a Support Group for some time in my area. It was good to get better knowledge about Chiari and know what I am feeling and going through others know as well. I have a great deal of depression with it and on top of that with my Family and friends and there lack of compassion and help. In the Group it seemed all I was taking home with me were the stories of all who were there and the great support they all seemed to have. In time that bothered me a lot so I stopped going. I am still in touch and still get updates from them all on Chiari but I just want to get something in check so bad and felt the depression was getting worse. And as I stated I still have had no luck finding a worthwhile Doctor that can really understand what I am dealing with. This is my first time reaching out to something like this and Online. I was feeling I needed I new outlet in it all. So Thank you very much. I have distance myself from my family because it hurts so much for me to pretend I am fine and so now they all feel I don't care about them. Its a bad place to be and I am struggling with what to do. Thank you for responding back to me.

[desertstorm2009]

Well said Hvn... You are definitely not alone although it may feel like it. I have learned you find out who loves you when you're sick. For me, I weeded out some people in my life that I should have years ago. I figure the ones left are worth keeping, and when it comes down to it there may only be one or two you can really count on and if that's the case it's ok. Some people truly have I one.... And they are fine.One of our members just went through the surgery with no one but her pastor and us here, she is ok. Pray and be strong, it's hard on everyone but you can do it! We are here for you... :-) Lisa

[hevnw8s]

I am sorry to hear about your struggles and feeling alone. You have definately come to the right place for support. This disease is relentless at times and when you hurt, having support is important.

I understand how difficult it can be but you are not alone. Dig deep for your strength and we will try and help you along the way.

Welcome.