I have CM type 1, Now what?

[Kimbe1320]

I'm so frustrated.  I have had headaches in the back of my head (right side) for 20+ years.  Doctors always looked at me funny when I would say where they were.  5 years ago the heels of my feet went numb, I had tingling in my back and pain in my right shoulder and neck.  In Oct. 2009, I developed dizziness or off-balance feeling.  After lots of testing and Neurologists telling me that nothing is wrong, a ENT doctor ordered an MRI.  With the words Chiari Malformation type 1 measuring at 7mm, and still getting no help from Neurologists.  Finally my family doctor says the dizziness and headache is Chiari but not the other symptoms and that I need an antidepressant.  I am in pain and I feel so lost.  I'm reading about brain surgeries that don't help.  Does anyone have some direction for me, suggestions for meds?  A good Doctor for me to see?        

[zygy2]

Just so you have hope, my surgery really helped!  I think that the people that feel great don't need the posting board anymore and they go on with life and don't have to be in here telling their story.  I was doing amazing after surgery and did stop in a couple times to post my recovery and how well I was doing because It think it is important that we hear everyone.  Now I am back because my patch is not sealed and I have a new issue and am awaiting a second surgery but I strongly feel that once I am done with this surgery that I will once again be feeling great.  For me it took care of numbness in my arms and hands, nausea and crazy nasty headache, brown/grey outs, light headedness when standing up, and I am sure other things but this was what I really noticed it helped with.  I had no headaches for three months post op and my head felt FREE!  No pressure and no pain, other than surgery pain.  After a life of what I thought were migraines, I am not so sure now.  I also had the chiari cough headache, which is a really good indicator of chiari.  Good luck and the best thing you can do is find someone willing to listen and help.. you need a good NS that specializes in Chiari!

[selmaS]

Hi and welcome to the Chiari forum.

  We do have a list of drs here compiled by the members, it is not meant as a referral, but a place to start ur research-http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

Chiari is a life altering condition, is mis-dx'd for yrs many times...and too many drs do not have a clue how it affects us or what to do for us.

As for surgery not being a help, u have to know y surgery is done....surgery is done to slow progression, and restore CSF flow.....in doing so it may help some symptoms..with the right drs u should have a positive experience  overall....but, some of us our bodies may not respond to the surgery as we would like...and there is no way to know. And a good NS should not offer surgery unless the benefits out weight the risks.

Meds tend to not help too much...I did have surgery and am glad I did...I still have issues, but knew that was a possibility, but I am still way better than I was b4.

  Not having surgery can cause as much of a problem if not worse of an out come depending on how the condition is affecting u.....

Find a true chiari specialist...just a NS will not do...even tho they will offer to do the surgery...that is when u see the diff btwn experience and ego.

  Learn as much as u can about this condition and how it is affecting u.

  "selma"