Confused

I have just been diagnosed with Chiari Malformation. I have a 6mm herniation and it is causing no problems with my spinal cord fluid. I have met with the neuro surgeon and he said that I can have surgery or watch the symptoms. I do have terrible numbness and tingling in my arms,pressure and pain in my neck, back pain, headaches, fatigue. I am just confused and I don't know where to turn. I am not afraid of having the surgery but I guess I just don't know what to do. I am really just hoping to talk to someone who has been down this path. Any suggestions would be great. Thanks!

[selmaS]

Hi..u r in the right place to hear what other's r going thru....
where do u live...not all NS r chiari specialists...they all can do the surgery, but ur better off with an expert then someone who saw this a couple of times.....

most NS and such will say 6mm is mild....and the herniation is not the most important factor. CSF flow is, and u said u do not have a blockage.

were u checked for a syrinx...or tethered cord?

I am sure other's will post some info here as well...we have a few that have recently had surgery and a few that have surgery scheduled!!

I hope u continue to post here on our social threads, and just for the support!!

Good luck
Godspeed
"selma"

[sarah2690]

Thank you for your reply. Well I have been checked for syrinx and tethered cord and I have neither. The NS is a chiari specialist here in Dallas. He did say the surgery is up to me and he does recommend it. So, at this point I am just looking at all of my options. I guess since there is the possibility of it getting worse makes me think that I should do the surgery. But again I want to hear from other people who have been at this place.

I will continue to post here and read all I can. I am just so shocked at this point.

Thanks again :O)

Sarah

[selmaS]

Oh, well that's good . Did u add his name to our specialist list thread?
I would suggest looking at several drs.....if u r not sure.....

I remember when I first found out, shock is an understatment, but it explained soooooooo much as to what has been going on with me for years.

What symptoms r u experiencing?

"selma"

[Shane99]

6mm isn't a large herniation, but it is large enough to be considered Chiari 1 rather than Chiari "0". Generally Chiari "0" is less than 3-5mm. Not to scare you, but something to think about; herniations sometime grow quickly. If you dedide to put off or not have the operation, you should still have regular MRI's every 6 months or so.

You say you are having severe numbness and tingling, etc. These are often signs of a syrinx or tethered cord, but they don't have to be - the Chiari itself can still be the cause.

Keep in mind that there is no cure for Chiari, you just have to do what you can to combat the symptoms. Surgery isn't necessarily a guarantee of your symptoms going away, but (in my opinion) it is the best option.

I had the operation about 8 months ago and am glad I did. I'm still having some problems, but over-all, I feel better. Mine was just caught too late - I had a 20mm herniation and Syringomyelia when discovered and was rushed into surgery.  

[cross194]

my daughter has a tethered spine caused by a lipoma. she does have the syrinex but it is so smallthey are not concerned with that. thedoctor recommends surgery to take the lipoma out.  she also have chiari it is 13.1 mm.  Please type back what you think should I have the surgery or not
thanks
tabitha

[selmaS]

First b4  u consider surgery, look at the dr.....is he/she a chiari specialist?.......since ur daughter has tethered cord.it is most likly what needs attention first! After the surgery the herniation of the chiari may retract some.At this point should be a good time for surgery because if left too long parallasis could set in and damage could b perm!

Does she have symptoms as a result.....13.1 mm is big, but u also need to know if she has a CSF blockage.

I just got a dx today for TC, and am setting up an appoint in NY.

Please let us know if u need a chiari dr.

Good luck
Godspeed
"selma"