Does this sound like chiari malformation and am I doing the right thing?

[Stanley100]

I have had extremely bad headaches all my life, and a few years ago I told my family dr about them. He sent me to have an mri and after the results came in he referred me to a neurologist. The neurologist explained the chiari malformation to me, but then told me that he didn't think the cm was causing my headaches. He put me on topamax and sent me on my way. I took topamax for a few years, but here lately I have been getting headaches again. I have also been getting very dizzy and have been having extreme weakness throughout the day. I have a horrible time sleeping every night. So I went back to my neurologist and he had me do another mri and blood work. I asked him about my chiari malformation and he said its still there and its always going to be there. I then asked him if there is any surgery to fix the cm and he asked why I was stuck on that and he still doesn't think that it is causing my problems. I didn't mention earlier in this post that I have had my thyroid thoroughly checked by an  endocrinologist and I have had my heart thoroughly checked by a cardiologist. I have had my pituitary gland and adrenaline glands checked and my testosterone levels as well. And I have had all kind of different blood work done. It all came back fine. So pretty much every part of my body has been checked thoroughly. The only thing left is the chiari malformation. Do the symptoms that I have been having sound like chiari malformation?  I had the dr refer me to a neurosurgeon in my area that has delt with chiari malformations before. An I doing the right thing?

[Elisaandbucky]

Hi and welcome. Both Lottida and Selma are correct about there not being a cure or a "fix" for chiari. The surgery is all about restoration of the flow of cerebral spinal fluid - if it is blocked. The cine-MRI will be the determining study for that. The key thing, as they both tell you, is to look on the information section here to find a list of true chiari specialists. This condition is not well studied or understood in the general neurology community. The real difficult thing is that you can go to someone who will "dismiss" you and say what you are feeling is all in your head. Which, by the way, it is! Your dizziness and difficulty sleeping in themselves are pretty debilitating. I am awake most nights myself. Be the kindest to yourself - listen to what your body is communicating to you. Be sure to record all your symptoms - just in case, when you do get an appointment with the real doctor, and you may be having a good day without much pain, you do not forget any of the important symptoms you have. Are you an athlete? I have been one all my life; however, chiari has forced me to alter my level and intensity of activity.  It's all about listening to your muscles and being mindful of how your symptoms affect your energy level.

Finally, be ok with traveling a bit for the best care (unless you live close to one of the good doctors). Keep all receipts of expenses you incur during your journey. Some things may be tax deductible. I really hope you have gotten some of your questions answered. Research all that you can. It isn't as scary when you get to understands the medical research. It is a real neurological disorder. Be strong and keep checking this forum. There are some really smart and knowledgeable people who come here regularly. And always know that you are never alone.

[selmaS]

  Hi and welcome to the Chiari forum.

As mentioned above not everyone with Chiari will be a surgical candidate and if a Dr says they can "fix" the problem with surgery,,,,run as far from them as possible as this is not fixable....only surgery is done to help restore CSF flow and help when there are other issues in addition to Chiari that restrict CSF flow...or cause compression of the spinal cord and brain stem.

Surgery also as mentioned b4 may not relieve all your symptoms....sometimes can cause more...so make sure ALL related conditions are ruled out.....

Educate yourself on them...and Chiari so you can recognize the right Dr for you....research them....as you do not want one familiar but well informed and experienced with Chiari and ALL related conditions.

[Lottida]

Hi I'm no expert but the headaches, dizziness, fatigue & insomnia can definitely be symptoms of Chiari.  However........not everyone with a Chiari will be a surgical candidate.  You will need to have MRIs of the entire spine to check for Syrinx & a CINE MRI to check for a CSF flow occlusion.  If any doctor tells you that the herniation of the Cerebellar tonsils is not long enough then that should be a BIG sign that your doctor is not educated in Chiari!!!!  Educate yourself as much as you can so that you will know if your NS is knowledgeable in the most recent Chiari info (read as many posts on this forum as you can to educate).   Also keep a daily log of your headaches & log your activity just prior to each headache to see if it may be triggers for you to avoid those activities.   Selma will be able to give you much more information on Chiari & related conditions.

Surgery does not always get rid of all symptoms (headaches, dizziness ect..).......I would suggest to find a Chiari specialist before you have surgery!!!  Chiari decompression is a MAJOR surgery that comes with the possibility of MAJOR complications.   For instance, I had to have 2 surgeries within 9 weeks of each other because I had a CSF leak of my durapatch (the dura surrounds the brain).  I feel great now & would do it all over again if I had to, however despite surgery I still have to make life style changes to manage the Chiari symptoms.  Good luck with your Chiari journey & wishing you the best!!  Keep us posted on your response from your NS & know that you will get lots of support on this forum.