Surgery or no surgery?

[hizbeloved24]

I have a quick question for those who have had the surgery.  Is it worth it?  I am a single mom of a 10 month old who has headaches, head pain, visual symptoms,ringing ears, etc and has recently found out that I have a chiari malformation.  The neurosurgeon said that he recommended surgery and I told him that I would think about it.  I'm not sure what to do.  I read that it really is a 50/50 chance that surgery will fix things.  He told me that the surgery would be an "easy" surgery because he won't have to go into the "dura" (I think).  He said a couple of days hospital time and that's it.  I didn't know about the restrictions, etc.  I've got a call in to talk to him about the restrictions, etc.  Just wondering if it's really worth all the trouble?  

[linnielou232]

I know what a hard decision this is for you, but as Selma suggested see a true Chairi specialist.  As for having Chairi with surgery or not you will always have it.  I know I'm having a bad couple of days, but it was worth having the surgery.  Dealing with pain is an issue, but listening to your body is a big key.  You will know when surgery is for you.  Get a Cine MRI before hand which will help also.  Keep all your record and test so you can get a 2nd oppion.  I went to 3 NS before finding the right surgeon for me.  As I said before your heart will know.  Wish you the best in this journey, but just know your not alone.  We are all holding your hand and understand what you are going throught.
Linda :)

[selmaS]

  We have a list u can use to research the Drs that other members went to and liked, not all on the list r true chiari specialists, but have successfully treated it, the list is not meant as a referral.

U can use the search this community feature to find the thread or go to the Health Pages link to locate the thread as well.

I will bump the page up too : )

[Viva001]

Ditto to what Selma said.
I am 5 wk post op.  If I had any regret, it's that I wish i had this surgery years ago.  It was the possibility of permanent visual problems that really scared me, & they were gone within a few days of surgery.

I hope you find a Chiari specialist.

[hizbeloved24]

OK, thanks.  How do I find Chiari specialists in my area?  I've looked online but all I find are neurologist/neurosurgeons.

[selmaS]

  Hi and welcome to the Chiari forum.

The % of benefits changes with each individual, so the 50/50 chance may not be urs, u may have a 80/20.....so until u r seen by a true chiari specialist and get more testing done...it is possible u can do with out it for now....

The less invasive surgery where they do not open the dura, many times need to be redone and who wants 2 surgeries.....

I strongly suggest u talk to a true chiari specialist b4 u decide to go forward....

Did u have a CINE MRI?...Rule out a syrinx, sleep apnea, disk issues, ICP, POTS, ehlers-danlos?

If ur Dr did not discuss these, he is not a true chiari specialist and u will want one as these conditions can affect how u feel and heal post op if and when u go for this surgery.

I had the surgery, my dura was opened, and I am doing well....my surgery was 3 yrs ago.I did have more symptoms then what u have at this point, but again, u will need more testing to see just how ur chiari is affecting u.

This is a major surgery, and can not be considered easy....except on the Dr himself for having less to do for u.....

Please take time to research some drs and get a few opinions and more testing b4 u do nething.