Dont want surgery - what do I face?

[imkeko]

I have been suffering for 8 months, although I only got a diagnosis last week. My neurologist said, "your chiari won't get worse, your symptoms will."

I have been trying to look into this, and I have seen posts about people who's brains have herniated further, so I am wondering if she was wrong.

Can Chiari get worse? And by worse, does worse mean herniate further down?

When she said my symptoms would get worse, did she mean severity? Or did she mean, eventually I'd have a syrinx? (which I do not have now)

I have a herniation of 7-8mm and a long list of symptoms, most i have daily, some come and go, and a lot are severe, and she tells me my case is mild. I was very upset (although I didn't say so) that she said that to me, because it doesn't FEEL MILD to me. Now maybe on the scale of 'chiari 1 to chiari 4', then yes, but on the scale of  'I have a splinter to I have a chiari headache and my eyes are going to pop out, and this is day four'...no....

I don't want surgery, so I am looking for info about a syrinx. I want to know what the deal is with that. is it basically that eventually down the road I will have one if I don't have surgery?

I understand that people have Chiari their whole lives and never have symptoms, but I do....so does that mean that now that I am symptomatic that that means that there is damage being done to my spinal chord?

And also, WHAT HURTS? I asked her and she couldn't answer me. She said the brain has no feeling, so what is it? Is it the spinal chord that hurts? I know there is pressure in the brain...yep, check, that hurts a lot. BUT WHAT HURTS IN THE BACK? I am going to pain management and they are doing injections, but it's in the muscle (i haven't been there since my diagnosis, this may change) and now I feel like pain management is a lost cause...because massage never helped...you cant touch where it hurts. WHAT HURTS?

I also did physical therapy, from OCT to JAN, that didn't help either, anybody go after a diagnosis?? Did it do any good? I feel like the more I move it the dizzier I get, and the more it hurts, so I don't know if I want to go back, or if it'd help....everything kinda seems like a lost cause though.

I am taking 150mg topamax a day....anyone find that high? Neurologist says that it lowers the amount of CSF the body makes, and can lower the pressure in the head. *shrugs*

I feel like if only my neck would "pop" it would feel better, and thought about a chiropractor. Everyone in my family suggests it. I put it off til I got diagnosed with *something because I knew there was something wrong with my neck and I didn't want a chiropractor to hurt it. Now I don't know if it is such a good idea.....but I feel like it's "out" of place.

I keep seeing "NL".....what does NL stand for?

One last thing. Anyone know of any good NS or a great chiari specialist in NC or MA?

[selmaS]

  As I said not ALL Drs are aware of how Chiari affects us, so they will give u incorrect info as that is what was taught in med school....it is just recently that Chiari was found other then  during a post mortum.

Roller coasters r on the list to avoid, along with hair wash sinks at teh beauty parlor....there are quite a few things....

The main thing is to listen to ur own body,  if an activity affects u avoid it or make accommodations so u r not affected if possible.

A good sign they don't know is if the person making the appointment asks u to spell Chiari....
Good luck.

[imkeko]

I have a CINE MRI next month. I've been on topamax since dec.

You said: "Many of us were told not to do certain activities as they can cause symptoms to flare..see activities to avoid with chiari and syringomyelia in the Health Pages." ....Funny, I asked my neurologist if I should avoid anything. She said, Well it's not like you can't move your neck! I was like, yeah, I know that, I've been moving it all along, I mean like roller coasters or something like that! but she said there wasn't anything. I'll have to look into that.

I got a call a few minutes ago about the NS i got referred to on post. I fear that they won't have any clue what they will be dealing with. I don't know how many hoops I will have to jump through with TriCare to try to get to someone who can help me.

[selmaS]

  Hi and welcome to the Chiari forum.

Chiari can not get worse, as chiari is the malformation of ur skull....the herniation can grow longer, but that does not mean it will affect u...if it is long and thin it will not obstruct CSF flow, but with out getting longer it may widen and that can obstruct flow...and then symptoms will change and increase.

Many of us were told not to do certain activities as they can cause symptoms to flare..see activities to avoid with chiari and syringomyelia in the Health Pages.

U will need to have a CINE MRI to see if u have a CSF flow issue, it is the flow when disrupted that can cause a syrinx to form.

And a syrinx can form in all areas of ur spine not just the cervical spine so if u did not have a MRI of the thoracic and lumbar spine u could still have a  syrinx....

I really do not believe that people have Chiari their whole lives and never have symptoms...I think there may be some with long herniations that may not have symptoms but u can have low lying tonsils and not have Chiari...there is a bit of a difference.

If the PT u go to does not know Chiari and related conditions PT will not help so u r right on that one....and it can make u feel worse, just like going to a chiropractor can...manipulation of the neck and shoulders can trigger more symptoms to flare.

Chiari symptoms cycle and y so many of us may not get a diagnosis until we r older and so many Drs are not aware of the related conditions and symptoms to connect the dots to know u have had issues ur whole life...the more u learn about Chiari, I bet u learn how long it really has affected u....more then most think at first.

I was on TOPAMAX post op...not b4...and it does help, but u have to find the right dosage and it takes time to adjust to the med....how long are u on it?

Last u need a true Chiari specialist...see our list of Drs to use to research Drs...the list is NOT a referral and not all may be true Chiari specialists but they  did treat a member here, so we have this list to make it easier to start ur search.