New to thread
 

:cool:Hello, Just found this site and have found the posts educational. I was diagnosed with Chiari in Oct. 2009. I was at work and lost function of both arms for several minutes. I went to my primary care Dr thinking it was the Kleppel Feil Syndrom in my neck causing the problem. I was lucky I was sent for an MRI and they discovered the Chiari and a syrinx that runs from C5 to T1. I have to share this because I find this part humorous, I don't think the Dr really knew how to handle the situation. I complained of weakness in my arms and a strange sensation in my head (like in a fog) blurred vision and memory loss. She told me (after knowing I had the Chiari) to calm down find Jesus and go home and read a book. She also told me that everyone dies and not to worry. I really had to push to get her to send me to a specialist and asked her to send me to more than 1 so I could get a second oppinion. She did not want to step on toes so she made me one appt. and I went to see that NS. I saw this NS and he wanted to perform surgery but he had only done 1. I have seen a neurologist he also recomended I get the surgery done. I tried to make appt's myself and ended up in a pain manegment clinic . I really don't have pain I just wanted help. Any way it's been 4 1/2 months I have headaches now and I am still trying to find the right Dr. I have an appt next week with another NS and I'll see how many decompressions he has done. I called on Monday to my PC Dr to get an appt to see another NS ( the best in my area I think) and havn't heard a word yet. I am not complaining, there are alot of people on this post that are suffering alot more than I am. I think I needed to vent some frustration. This condition really sucks!! (excuse my language) I am having a bad week with symptoms have to get ready to go to work and my house is a mess! Oh by the way I am a 47 year old mother of 12 year old twins. One plays competetive softball and one plays drums and electric guitar. I work at a wonderful vet hospital as a tech. I was really enjoying my life (still trying to but it's tough sometimes) until Chiari started to kick my butt. I hope the best for all of you out there, it won't get the best of me without a fight!! Cathy

You must find a chiari expert . That is no1 . Not a neurologist a neurosurgeon. Where do you live so we may help you. Roz

okc
 

I live in Oklahoma city area. I have an appmnt with an OU nerosurgeon next week and am trying to get in with another in the Mercy group. Any help with a good surgeon would help alot. The surgeon that my primary care sent me to is all about doing the surgery but like I said he has only done one. My KFS is not helping the situation, 4 of the vertebre in my neck are fused, arthritic,bulging and are compressing on my spine. C2 and C3 are fused and C5 and C6 are also fused. Just having a hard time trying to find someone that specializes in one problem or both. Cathy

forgot
 

Oh I forgot, (thats funny isn't it) the surgeon is the one who sent me to the nuerologist to make sure it was the Chiari causing the symptoms and not the KFS. It is the CM and he told me as of yet I have no permanent damage to the neves after running several tests. I truely would appreciate if you know of any good docs around here or Dallas it's about a 3 1/2 hour drive. Thanks Cathy

finding the right doc...
 

Have you looked up Dr Oro at the Chiari Care Center in Aurora CO? Don't know if that is near you but you can contact that clinic and ask for a second opinion by phone consult, I believe. I was diagnosed in 2003 with a 10 mm herniation, had decompression with laminectomy of c1 and a dural patch to allow the csf to flow. Chiari 1 is not a condition that most drs have any experience with. My family doc is wonderful and he has been in practice for 35+ yrs ( in a large city) and told me that I was only the 2nd chiari he had ever treated in practice. Hard to believe but true for most docs i believe. Do not worry about stepping on toes or appearing to be a "head case" (lol, cause we all really are anyway). This is your body, your health, your life and future and you deserve all your questions answered and the most experienced drs available. Good luck and God Bless.

Dr. Mapstone is top chiari dr. In OK

Hi Cathy and welcome to NT!

I'm so glad that other members have been able to help you with your number one priority: finding competent medical care. Like you, my doctor told me to accept what had happened, go home and suck it up.

I used to think that most doctors were smart people. Since my injury, I've been shocked to learn that many only entered the medical profession after they were either rejected by village idiot school or discovered that the Spanish Inquisition was over and the market for sadistic, unfeeling torturers had pretty much dried up. lol

When it comes to doctors, don't be afraid to put on your heaviest shoes and crunch a few toes to find the good ones.

Anyway, I admire your "can do" spirit. Anybody who can survive life with a teenage drummer, can survive anything.

Cheers

thanks
 

Thanks to everyone on the thoughts and info. I will ask about Dr. Mapstone when I go see a Dr. Martin at OU next week. The other Dr. in Colorado I did look him up and I used to live near where he is located. I feel when I have my surgery that I would recover better at home. I would miss my kids (bickering with each other) my husband and my dog way to much to be gone for any length of time. My advice to all of you is to keep laughing (even when it makes your head hurt) because if you don't, you will cry and that makes my head hurt worse. My kids joke with me and call me brain damaged, the people at my work laugh when I ask questions like " how much did this dog weigh" and they reply "I don't know you weighed him". I am fortunate I live and work with a great group of people that know when I am having a good day or a bad day and work with me not against me. I have never posted on any kind of chat before but when I found this site I felt compelled. Thanks for being here even though I am sorry for the reason why. Gotta go to softball practice in a while, my house is still a mess and it's raining. I am gona try to have a wonderfull day. Cathy

The things kids say!!!
 

Its funny what my kids l say about this "BRAIN THINGY" I have.
My girls love to show people my scar and watch the varying degrees of shock and awe from their friends and their parents. LOL... We find joy where we can, Right??? When explaining the surgery, I told my kids that my brain was waayy too big for my skull and the dr. had to make room. LOL!!!
My 1st grader went to school and told her class and teachers and by the time it spread round the school and back to me I was having a lobotomy. LOL But seriously, I want to encourage everyone here to look at yourselves not as "brain damaged" but as "BRAIN BLESSED". It is scary and uncertain but the great news is that you have all the tools right at your fingertips to find a great dr (or team of drs) to treat you. Do your homework and patiently research your condition:
Start a journal of your daily symptoms, what helps and what makes them worse. For instance, when I was diagnosed, I was working out pretty heavily with alot of weight training. (And explosive headaches that were like lightning strikes). Squats were a definite no-no for me. I have learned a valuable lesson through this period of my life. I have learned to really listen to what my body is telling me and to slow my life down. Im not saying that I act like a retiree and sit in the rocking chair all day but I have learned to say "NO". My kids don't exactly like that but I am doing a good job if they aren't happy all the time, Right??

good day
 

Hi everyone, I had a good day at work today my head only hurt a little, that is until they all made me laugh so hard it hurt alot. The kids did the dishes, fed the dogs and my husband made me coffee this morning. Even the clients at work were all pleasent today and no emergencies! Does life get any better than this? I hope ya'll had as great of a day as I had. And yes I said ya"ll. I have lived on Oklahoma to long. Cathy:)