Chiari help

[dimples0925]

Hi everyone!
So I'm hoping for some suggestions here. After years of different problems, and many dr's that never put much attention into finding anything, I finally had a dr that ordered a brain mri. The mri showed chiari 1 malformation with herniated tonsils at 6mm. I was referred to a neurologist, but in the meantime I did my research. From all that I am reading, all my symptoms over many years all point to chiari. Many symptoms did come on pretty sudden with new symptoms occuring quickly. From what I've read, I feel that due to my symptoms a syrinx is likely as well as the possibility of a tethered cord. I saw the neurologist today, sigh....He tells me chiari is nothing, people live with chiari and normal lives. My symptoms aren't chiari, I suffer from migraines he says(I only have occasional migraines but constant pain in back of head...I know what a migraine is, ugh!) and maybe fibromyalgia....and I'm stressed! Short from not feeling well due to all the symptoms, my life is better now than it has ever been! I don't feel stress is a factor at all. Anyways, he has put me on a bunch of medications and wants to see me back in two weeks. Never mentioned any further testing, lumbar mri, nothing. If meds could help, then great! But he basically shrugged his shoulders at me and wouldn't listen to what I had to say.

I wonder, do I wait it out and see if the meds help or do I find a different dr so I can have further testing and know my limits, etc. if it's chiari causing all of my symptoms? Anyone else on medications to alleviate symptoms?

Dr put me on topomax, flexiril and cymbalta as well as butalb-acetamin-caff when I start to feel a headache.

Any input or suggestions would be appreciated! Thanks in advance! So glad I found this forum :)

[fmimom]

Hi,
I'm still new on my journey here, so I can't really give you any advice on doctors.  Selma is so helpful with all of that, though!

I have had experience with some of the medications that your doctor put you on that I thought I would share with you.  I was on Cymbalta for over a year and it was horrible for me.  I know that it has been very helpful for some people, but I think they had Fibro. not Chiari.  For me, it made me so tired that I would fall asleep during the day, it also made my balance worse.  But, the worst part was when I would miss a dose or when I tried to go off of it.  I have never felt as awful as I did then!  I got such horrible vertigo that I couldn't even make it up and down the stairs and it messed with my moods so much!  Like I said, that was my experience, and everyone is different.  But, I would check this website to read about people's experiences with it: http://www.cymbaltawithdrawal.com/  before your body gets used to it.

I have also taken Flexeril and it was helpful with muscle spasms, but it made me so tired that I couldn't use it too often.  As for Topamax, I have heard great things about it and my son's NL actually takes it herself.  But, I have issues with tingling and numbness in my arms and hands, I assume due to my syrinx.  When I was on Topamax, it worsened that numbness and tingling to where it was unbearable, so watch for that.  Also, be aware that Topamax can make you feel kind of dopey.  My son took it for a little while and it was kind of like he had been replaced with a completely drugged out version of himself.  As I said before, it all depends on how your body reacts to it, because I didn't deal with the dopey feelings from it.

Best of luck with everything!  It's great that you found this website, it has been so helpful for me, especially all of the advice from Selma!

[selmaS]

  Hi and welcome to the Chiari forum.

There r many Drs that feel the same as ur NL, they do not get much info on chiari in med school and they do not get the new information from recent research that the Chiari specialists have done.....this is y we suggest u find a NS that is a true chiari specialist.

U may have to travel to get to one, but it is well worth it.

We do have a list of Drs here, but not all of the Drs r true chiari specialists but have successfully treated it.....do not use the list as a referral but a means to help u begin ur research.

Typically meds do not help with the pain.....

U will need to find out if u have a CSF obstruction via a CINE MRI....and then rule out related conditions.

Know that u r not alone : )