chiari malformation

[Tinks]

Hi everyone,

want to thank you for your support recently, but the MRI came back negative for a neuroma but unfortunately I have chiari malformation of my brain that is causing the symptoms.

Either way I am terrified of what may happen.

Once again I want to thank you for all your kind words of support and send you all best wishes.

[ppearl214]

Hi Tinks,

Well, I can certainly relate.  When I was diagnosed with my AN, I was also diagnosed with Chiari Malformation 1.  There are many on the site over the years that also received this "double diagnosis" and there does not seem to be a correlation.

When I was diagnosed with CM1 years ago, we learned to monitor its progression via MRI to see if the slippage had any progression over time.  In that time, there were/are symptoms that crop up such as migraines and extremity weaknesses.

CM1 are rare (although modern medical technology does allow for better diagnosis) and there are not many doctors that speciaize in CM1.  Many neurologists note "oh, yes, I can help with that" but please do your homework for those that actually specialize in it.  The Mayo Clinic also provides terrific info:

http://www.mayoclinic.com/health/chiari-malformation/DS00839

It bears watching... absolutely... but know there are many, such as myself and many others that have come to these forums over the years, that also have CM1. 

Hang in there. Great news you do not have an AN...... and also that there are many that understand the CM1.

Phyl

[Tinks]

Hi Phyl and thank you for your reply.

I did read it yesterday but my head was in too much of a whirl with the news I had received to reply.

So good to talk to someone who has this too!

The neurologist apologised to me as he previously said all my symptoms were caused by stress but it was only when I saw him the last time and he said I had vascular tinnitus and a problem with my cross acoustic reflex that he sent me to the ENT who found the chiari. He said he cannot understand why he missed the chiari on the previous MRI so is going back to the other hospital to check it out and make sure that it hasn't made a rapid progression. He said he would let me know what he finds but recommends another Mri in 6 months and then yearly after that. He said he would only recommend surgery if I got symptoms such as slurred speech, choking and loss of limb function on daily basis as the complications of surgery are high.

Can I ask you Phyl what symptoms you get (if I am not prying too much of course!!). Do you have heart rate and BP issues with yours (I have autonomic dysfunction) and Ehlers danlos too so chiari will make a happy 3!!

Thanks again for your reply

[ppearl214]

Hi Tinks

Over the years, the only true issues I have had has been excrutiating migraines and extremity weakness.  My CM1 is deemed "mild" but we monitor, such as you have noted.  The tinnitus and such that I have is more attributed to my AN but as for my CM1..... we monitor to make sure the slippage has not enhanced. It's been shared with me the same as you.... we monitor.... make sure nothing is getting worse (ie: symptoms, the slippage, etc).  Sounds like we are in the same boat. My CM1 was diagnosed in 2005, so since then... I just go with the roll. 

Please let me know what the follow up appts/scans note.  We are, indeed, rare   How special are we?

Phyl

[daniel-ny]

@phyl
Had cyberknife 7 months ago for a AN and in the 6 months post treatment MRI Chiari 1 came to the picture, I just found out this new thing and I am in the freaking out phase. Some of the symptoms that were related to AN now I am being told are related with CM. thanks for your posts.