New here... and scared!

[JenOKane]

I just found out that I have Chiari 1 Malformation.  I am going to see Dr. Verna Porter of UCLA on Nov. 8th.  I've been doing a lot of research and I'm scared.  My cerebellum tonsils are 8mm, I know that's not huge but it is concerning to me.  I have extreme short and long term memory loss, major fatigue, slurred speach, mild headaches and more.  I'm only 32 and feel like this isn't the way I should have to live, but I don't know that I want to have the surgery... I've read so many horror stories.  And advice out there for me?  Thanks!  Jen

[amelia133]

Same boat as you! Found this website has helped more then anything! Still deciding on surgery too - it's good to know your not alone in all of this!

[linnielou232]

I know how scary this can be.  I remember back 3 year's ago and my doctor told me I had chairi I said "What"?  What is it?  I couldn't even spell or pronounce the word let a lone know what it was,  that is why research is important for you to do.  I also went to 3 different doctor's before finding the one I was comfortable with.  Some say right away have the surgery.  The doctor I went with said.  "Chairi surgery all depend's on how you are living your life".  he asked me if I could keep living life as I was and I was at the point I couldn't the pressure and pain was so bad.  We express it seem's like horror, but it's just flustration,  that is why we are here as chairian family.  It was hard for me to understand it and it is scary when you pop up article's on it and it explain's what is going on.  As for me my doctor told me it wouldn't get better and I was in good health at the time.  He stated if I waited 5 year's I might be as healthy as I was when I had surgery and that has a lot to do with your healing is your health.  Surgery isn't something you go into lightly it is a hard decision to make, but some of us don't have a choice, because it doesn't get better.  So only you know how and how much you can handle.  The problem I have is the life changing experience in having Chairi, not just having the surgery, as Selma say's having surgery is not a cure, but it does slow down the progression.  For me it relieved A LOT of pressure in my head.  My doctor explained it to me it is like putting air in your tire, you can only put so much air in and the pressure has to be reliefed.  I don't regret having surgery, it does help, but for those of us that have had it we just want the one's who is in the process in the decision that it is a long recovery.  I'm 1 yr post op and now dealing with a pain clinic because I have nerve damage due to having Chairi.  It is the issues we deal with that we share with you just so your more propared going in than we were.  I know this website was and still is a blessing for me and I also it help's you go in the right direction.  Good luck in your journey, just know you are not alone.  We are here for you.

[selmaS]

  Hi and welcome to the Chiari forum.

Make sure the NS u go to see is a true chiari specialist.....well experienced with this condition as well as related conditions.

The Dr should check u for related issues such as tethered cord,ehlers-danlos, sleep apnea, ICP, disk issues, syrinx......overcrowding, and an CSF obstruction.


  Not all with Chiari r surgical candidates, nor do we all need it....

  When it affects ur over all health and lifestyle then it is time to consider it.

  My surgery was in May '09 and I am much better...no horror story to report....more bad news is posted then good...and too many go to the first NS that offers surgery and expect a quick fix and want to be "normal" again.

Surgery is not a fix or a cure...and chiari is life altering...so we have to find our new "normal".

   Hope that helps : )

    "selma"
Keep in mind the length of the herniation the size we get in mm's is not as important as the width which we do not get the measurements for...

The width is more likely to obstruct CSF flow and this is where most issues stem from....as well as overcrowding and compression.

  Make sure u get blood labs done to check ur vitamin D, B12 levels as well as minerals magnesium and potassium.It is possible that energy levels and some numbness and tingling can be from low levels of both of these forms of nutrients.