Surgery for Chiari

[mls1015]

To those of you who has had the surgery to treat Chiari...

What was the reasons you had the surgery done?
How has it helped you? Or was it a fail?

Thanks!

[linnielou232]

I love all the positive resposes you received and here is another one.  I also had 3 surgeries, due to my body rejecting the stitches.  Somethng my NS has never seen.  I also say after being 16mths post op I would do this all over again.  It did help in the long run.  I don't get the pressure headaches.  I agree with  every one above.  I still have Chairi.  We alway's will.  I weighed the odd's after my NS asked me if I was living the life I wanted.  I had to answer no to that.  He stated Chairi will not go away and having surgery is not a fix so there is a lot to consider.  With my sisuation my NS told me last week he actually learned from my experience so I have to say I don't want to go through this journey again, but I'm thankful that my NS learned something and it can now help other's with Chiari.  I wish you the best in your decision.  We all know how hard it is to make it.  

[zygy2]

I agree, find the specialist and know that you have the BEST going into your head!!!  My main problem was constant Chiari cough headaches that lead to migraine type headaches all the time.  Not being able to laugh was horrible, I could not get laundry out of my own dryer because I could not bend down!  I can say that I am happy I did the surgery but I have had three surgeries, I continue to have some old problems and I got a bonus of some new ones due to complications and damage to my cerebellum.  I can laugh though and I have lots less of the massive headaches.  The new issues are more frequent but less painful, I still think it is better than it was.  I wish my balance issues would clear up because when I tip over in public I feel like people think I am drinking but I would rather tip over than not be able to laugh :)  I guess it all depends on what you can deal with.  

[cash242]

I am 11 mo post op and yes I would do it again but my greatest advice is to have a true chiari specialist..i didn't I had a great ns and he did a great job on surgery but when other symptoms came up he had no idea what to do if I did anything over I would go to a specialist I sm with dr oro now and he understand all of the post op issues and doesn't stop trying to figure it out. You may not have issues after but knowing that youhave that support is so important..good luck!

[mls1015]

Thanks for sharing!

[sunnyset]

I'm scheduled for surgery on 2/8/12. I don't have a lot of symptoms related to Chiari-- just headaches when I exercise, strain, laugh too hard, etc but they aren't too bad compared to other stories I've read on this forum. I also have syringomyelia which is why I'm having my surgery. My syrinx has doubled in size in the past 2 years and my surgery is pretty much just preventive. I don't want my syrinx to get bigger.. and risk losing function because of it.

[Sexybare]

I had surgery aug 2011 and YES i would also do it all over again. Its not a cure, merely to stop progression, or slow it at least. Some of my symptoms are not as bad as before, but dr keeps finding other issues related to my chiari that werent diagnosed before surgery. I didnt have alot of tests before my pfd. So it all depends on you and your symptoms wether you decide on the surgery? Its a decision you need to research and wieght the pros and cons. Remember once a chiarian, always one. So far there is no cure, yet im still praying for one. I wouldnt wish this upon anyone. I hope we help you on your journey.

[Rylanesmom]

I have not had surgery yet but I can not imagine continuing to live this way.  If surgery is the light at the end iPod my imperfect tunnel I will be going.  Nobody should have to function the way I currently do.  I know Jesus said this would not be easy and that I deserve health no more than anyone else yet my life has gotten so hard.

[ChiariWolf]

Hello, I did have surgery just over two years ago. Was it a failed attempt? I don't feel it was, but then the Dr said I'd be dead if we hadn't wen't through with it.

Aside from that though - pre-op my wife had counted 53 symptoms when I seen the list I'd asked her to please stop as I didn't want to know. What about now, well I've a couple of drop attacks in the last 2+ years but preop I'd have as many as 12 in a day. I was in the er with heart attck and stroke symptoms regularly.

Now, is life perfect? No. But then Chiari is not something that can be cured despite what some doctors will tell you. However, my case and others here on the list do show that the symptoms of Chiari can be greatly helped.

You didn't ask, but would I go through the surgery again? Knowing what I know now. Without a second thought I'd be on the table if we had to do it over again.

That does not necessarily mean 'every' person should go through with it though. Your personal symptoms will answer that.

CW

[selmaS]

  Hi...I had surgery and yes it helped me, so it was not a failed surgery...do I still have symptoms and issues yes I  do...but that is the nature of the beast chiari....

  The reason I had  my surgery was bcuz I had severe CSF obstruction that resulted in drop attacks and many other symptoms that were debilitating and affected my daily life for far too long.

   Is that what u were asking?