Does it go away if I ignore it, haha

[Autumn55]

Its so hard to accept that I have syringomyelia.  If doctors in the past have dismissed it, then why can't I?

Sure, I've been gradually getting worse since my first symptoms occurred about 6 years ago, but other than aches, pains and numbness and a few other symptoms I can do most everything I used to.  

But what will really happen if I ignore it?

If I accept it, I lose my job and many of the activities I used to enjoy.  And can I even get health insurance now?

[Samanthab259]

I know sometimes i feel so dumb! my kids will finish whatever im trying to say. Its hard when your trying to get on to them & they know how to finish it.

[Autumn55]

I do the word thing all the time!  I use the words *stuff* and *thingy* way too often.  And I'm always having trouble remembering if I said something or just thought it.  I repeat myself a lot and sometimes just keep things to myself for fear that I've already said it!  

[Samanthab259]

I often wondered the same things. I just always thought i was super clumsy! I search alot for my words forget what i have said & sometimes think that i have said it & really i just thought it. Now that i look back i really think it is the Chiari Alot of other people have said the same thing on this site. Somedays is worse than others. I use to fall alot before i had my decompression now they dont seem as often.

[Autumn55]

Falling down the stairs and not knowing why you fell.  This sounds very familiar.  

I'm constantly, falling, banging into walls, furniture, dropping things.  Sometimes I reach for something but I over/under reach, almost like I can't really tell where it is.  

Kinda reminds me of my mother when she started to develop early onset Alzheimer's.  I break so many dishes.  

My husband always asked what happened and I tell him I don't know.  He says sometimes he thinks I do it on purpose, haha, I just laugh it off.  What else can I do.

Is this possible symptoms or am I just clumsy?  I don't recall being like this as a child or teen.

[STL5]

I also have chiari and a syrinx.  It is something that I will have to live with for the rest of my life.  My symptoms were progressively getting worse and the DR said that they would most likely only get worse with time.  Waking up gasping for air scared me.  Falling down a flight of concrete steps and not knowing why I fell- I was just lying at the bottom with no memory of falling scared me.  My biggest fear after talking with the DR was did I want to live with permanent nerve damage.  (or how much nerve damage did I want to learn to live with).  Only you can decide what you can live with.  It all goes back to your quality of life.

[selmaS]

  Well, depending on how ur chiari and syrinx r affecting ur overall health...if ur symptoms r such that u can live with out the need for meds...and they r not increasing or changing....just keep a NL on record that will monitor u.....

Both the syrinx  and the chiari can remain the same for long periods or very abruptly change and grow with increased symptoms.

  Get a full check up to know just how ur chiari and syrinx r affecting u.....a syrinx can lead to perm paralysis as can chiari if left untreated . Many with a syrinx already have an indication of a CSF flow obstruction- hence the formation of the syrinx....the chiari PDF surgery can help the syrinx shrink , which can help avoid the possibility of perm nerve damage.

  Only a true chiari dr can tell u how much or little u can benefit from surgery.

     "selma"

[Lnileski]

I've thought the same thing myself. I figured if I kept telling myself I wasn't in pain & go about the day like nothing was wrong, maybe it would go away....so far has not worked in my favor :(

[Mazie1209]

"but what will really happen if I ignore it"..oh man, I say that alot!!  (i have chiari & syrinx)..i too, would love to know that!!
Mazie :o)

[selmaS]

  Oh deff...take it if u can.......

[Autumn55]

My last MRI was about a month ago.  My last one before that was 3 years ago.  I'm trying to get a hold of my one from 3 years ago, to bring to my NL at my next appointment to compare them.  I think that's a good idea, right?

[selmaS]

  That is a very good question indeed........

when was ur last MRI?.....do u know if ur syrinx grew??

    "selma"