chairi

[cidsmith1]

I have had neck pain and left arm pain for about three years.  It has gotten bad in the last 1.5 years.  I also have very bad headaches.  I have been told I have degenerative disc disease but the pain I am having isn't what I should be experiencing (so the doc says) I have done some research and looking at my scans and comparing them to Chairi patients scans on the web and I think I have it.  I told my doc and he just blew me off saying "you shouldn't have it".  Well I also shouldn't have this awful neck pain.  I am extremely active and always on the go but with this pain I haven't been able to do much of anything most days.  Some days I can't even finish a whole day of work.  What do I do if this is something I think I have? How do you talk to the right people?

[toolmaker]

A lot of drs are not familiar with chiari.Research online suggests that it usually takes about 5-6 yrs to get a diagnosis, unless you can find a neurosurgeon that  specializes in treatment.

[chadry]

My daughter was diagnosed with Chiari and her neurologist blew it off like it was nothing. I found a good doctor that deals with Chiari and got ourselves informed about this condition. She was having dizzy spells and headaches and tremors she feels insede her body that we can not see. In every other way she appears to be OK so that is why it took so long to get the MRI of her brain. There are alot of doctors that just do not understand everything there is to this condition. It is treatable with surgery where they actually make room for the desending part of the brain. There are so many people that have this condition but are not aware of it because it poses no symptoms for them and they actually find it when looking for something else. Do a search for the Chiari 1 Malformation and find out more maybe from the Chiari Institute. There is a great website ASAP dot org. It has so much on there about Chiari. There is also a website called conquring chiari(spelling). They have info there also. I know with my daughter she is permitted to live a normal life you just have to be very careful of high impact sports or anything that may cause trauma to your neck. My daughter is a canidate for the surgery but we are waiting for new insurance for her to get a second opinion. There are many degrees of this condition. It is a condition you are born with. Does anyone you are related to you  have this condition. We are now begining to feel that my husband may also have this condition and his other children because of the tremors and headcahes they all experience. His whole family has these same problems. It may be genetic and hereditary. Talk to family members about anything they may be experiencing. You can call different doctors and find out if they have experience in this area. Try all your major hospitals to find a doctor. I know I took my daughter to the chief of neurosury in a very big childrens hospital and he was quite familiar with this condition and has preformed hundreds of operations to fix it. It is fixable if it is not that bad. They also have to check to make sure all the fluids are flowing the right way.
Good luck and I hoped I helped a little. Please keep me informed of any developments about this.
Chadry
Check out that ASAP website. It is very helpful. You can ask if there is anyone in your area that knows of any docotrs you can see.