Would you be ok with this treatment plan?

[2001ri]

Hi all...so I found out back at the beginning of April that I had a cm1 malformation after an MRI scan for headaches and dizziness ( and occasional blurred vision and assorted other things). After many more MRI's, appointments and tests, I have found out the following...

I have a 10 mm herniation but it is fat and rounded, which my doctor says is a great sign that my brain is not under intense pressure.
I have no syrinx throughout the whole spine, no tethered cord or anything else.
My cine MRI showed good anterior flow, diminished posterior flow.

So...with that being said...my NS said at my appointment on Tuesday that as long as I can handle the headaches and no new symptoms appear, that I NEVER have to come back and NEVER have to have another MRI. He says that if I was to develop syringomyelia, it would be here by now (I am 34) and it wouldn't really come this late in life.

I feel happy that there isn't surgery or anything in my future, but I feel a bit weird about never having any more follow up. Does that seem like the usual course of action (I mean, non-action :)

[zygy2]

Agree with Selma again :)  Tends to be a trend around here!!  Find a second opinion, sounds a bit odd to me!  What are the headaches?  I had crazy cough headaches that felt like someone was dropping a car on my head, I never could have stayed that way because every week was getting worse.  Changing the flow got rid of those pains!  (decreased other headaches too)  Sounds like there is blockage so it is weird... do you feel like you have bad things happening?  Did these headaches bring you to the Dr. to begin with?  It is very difficult to find people that really understand the latest news about Chiari..don't stop until you have enough information to make choices you are happy about! -zygy

[selmaS]

  Is this a Chiari specialist? U may want another opinion...I got a few..

Some NS's u can send copies of the MRI to them and they will review it for u for a nominal fee.

[2001ri]

Thanks, that all makes sense from everyone. It was just strange to think I never have to see a doctor again to check up on this, but of course if I feel terrible I will take the initiative myself,

One last thing...I just got my report in from my cine MRI, and it actually says that I have absent CSF flow posterierly at the foramen magnum... He didn't think that was anything to worry about. If he isn't worried then I won't worry, but it seems like absent flow wouldn't be a good thing!

[selmaS]

  Hi it is highly possible to have Chiari and not need surgery yet have symptoms....the symptoms could be from related issues, and it is not the NS that dx's that is the NL....unless u have a true Chiari specialist they have a NL that works with them and they will test u for those related issues.

  Some activities can cause a flare of symptoms and u can have a fall or be in a MVA and it can change everything.

SO u do not need to see a surgeon as right now u r not a surgical candidate....if u have new symptoms or have symptoms that disrupt ur lifestyle then push for answers to those with ur NL and a rheumatoid dr.....

  I would have a MRI in a yr to see if there r changes if how u feel persists and nothing else has been dx'd as a cause.

[bagheesmom]

I went to see a Chiari specialist this June and surgery is not reccommended for me (doubt I wouldhave have hada it anyway!)Since and when we asked about anual MRI's he told us they are not neccessary. I was told if I develope more symptoms I could have one. No restrictions, no further tests. I was a little suprised by that. But overall I wasnt as impressed with the Dr I saw as everyone else seems to be. I figure if things change I will just talk to the NL.

[Munchies2012]

They usually want to see u annually just to see how everything is. But they are always a phonecall and an appointment away if your situation changes.