chairi malformation ever go away??

[debni]

Hi everyone

Post surgery 2009 and sometimes wish i never had it!!!  Had mri few weeks back there as my memory and speech were worrying me.  At times I forget everything   - like peoples names what i just said some say everyones like that but I was never like that apart from looking like an elephant lol I had a memory like one I never forgot anything!!  Also when I am having a conversation my mind goes blank and nothing comes out and other times I stutter its so embarassing !!  Anyway got a letter back to say that all was clear!!  So so frustrating when you know things arent right and there is dam all you can do!!  I feel like a totally different person I use to be life and soul loved carrying on laughing and joking.  And I cant do that anymore because I end up with a severe sore head from laughing!!!!  Today I cant move my neck my head feels like a tonne weightand keeps pushing forward and my back sore too!!  Is this it is this how life is always going to be??

[sherimom]

Hi
Sorry you are going through this! My son also had his decompression in 2009 and has had some symptoms return, some, like trying to find the right words, or memory problems have returned for him as well.

We have finally found a neurosurgeon who understands. On his MRI this month, it was completely clear MRI. The NS explained that scar tissue does NOT show up on the MRI, which is why all the other doctors he has seen say he's fine, or it's a migraine.  His symptoms seem to relate to that.

I've been trying to research it some, as the NS mentioned a study that showed when they shrink the tonsils it can lead to increased risk of scarring. It seems to be controversial with some doctors saying that the type of patch, whether they opened the dura, or whether or not they shrunk the tonsils, can lead to scarring over time.

We are in the wait and see right now, he was told he can't weight lift for the next three months at which point we have another appointment to review.

I don't know how health care works in Ireland - how easy or hard it is to access specialists when needed or to get care somewhere else. Someone else mentioned connecting with other chiari patients there, are there any support groups there that might have more info?

Good luck in your search......

[selmaS]

  There are a few, like here, hard to locate at times....u may want to talk to others in Ireland that also have chiari that can share who they see and how they get proper treatment.

I know some come to the states....and some apply to the clinical studies to participate ...I will see if I can locate the links for that...the search feature has a glitch right now...so as soon as I find it I will add it to this thread.

[debni]

True but what do I do there are no experts over here :(

[cn221]

having same issues. in so much pain an confusion

[selmaS]

  U could have related issues that would not show on a standard MRI so , just bcuz they said it was clear, does not mean there is not something going on.

And like u said, clear means in their opinion, and if they r not well informed, then they can not give an all clear, can they?

[debni]

Hi Selma

Sure I went for the MRI  few weeks back and it all came back clear.  So looks like I have to just accept life with this bloody awful chairi malformation.  I live in Northern Ireland and it seems no one has a clue about it!!  I will do my best to connect to you all as it helps :)

[selmaS]

  Hi welcome back. Sorry to hear u r having issues, No chiari never goes away, but the issues should subside more then urs have...sounds like what Mary impiled may be correct that something is either blocking CSF again like scar tissue, a bulging disk or something, or u have an additional issue , one of the related chiari conditions like a syrinx, EDS, or tethered cord.

[Marybz]

Do you have disc problems or spinal stenosis?  These can have similar symptoms like CM.  Anything that blocks flow of CSF and presses on nerves cause symptoms.