Chiari Malformation Community
Treatments ya'll found that helped
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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Treatments ya'll found that helped

I was informed today that I had a small protrusion of 6mm and I want to be proactive in my approach to treatment when I see the neurosurgeon next week.  I have tons of symptoms...everything from headaches which were diagnosed as migraines 20 years ago, vibrating sensation in my right arm accompanied by sharp pains.  Loss of coordination, dizziness, blurry vision, ya'll get the idea.
So what forms of treatments are out there? And what seems to be the most effective?

Thanks.  So very glad I found this forum.
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620923_tn?1402936350
Hi and welcome to the Chiari forum.

Well the only treatment is surgery, and surgery is only done if the benefits out weight  the risks.

U will want to know if u have a CSF blockage, and overcrowding as it can lead to the formation of a syrinx...u will also want to know if u have ne chiari related conditions.

Make sure the dr is a true chiari specialist and not just a NS that does a few chiari surgeries....and do not let the dr get u upset if he claims it is not the chiari that in its self can tell u  that u have the wrong dr if he claims chiari is asymptomatic...

Pain management is used to help, but it only helps u with the pain, it does not help u with the progression of symptoms or the condition.

Some meds can be helpful, but many can be short lived help...we r all diff so it is diff to say what helped me, may not help u.

We r also glad to have u join us, but not happy for the reasons that brought u.

"selma"
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1529185_tn?1291858699
Thks for the info.  I am seeing Dr. Kim here in Houston and I noticed that he was on the list of Chiari specialists.  So hopefully all will be well.

I was beginning to think I was totally losing it as my symptoms have progressed.  I can no longer drive due to them and they seem to be getting worse every day.  Something new goes wrong with no explanation from any Drs.  The neuro I saw today wouldn't even call it Chiari...just said it was a small protrusion.  Where does 6mm rank on the Chiari scale?

Like I said at the start I am so glad that I found ya'll.  
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620923_tn?1402936350
Hi...well that scale u r looking for is sooooooo out dated it really is not the right way to measure if u have chiari or if it is symptomatic.

A newer term is chiari 0 where u do not have a herniation at all...but u have a CSF blockage.

Chiari is the malformation of  the skull which causes the tonsils to herniate....depending on the width of the tonsils can cause the CSF flow to be obstructed....once u have an obstruction, the formation of a syrinx is possible.

Old school measurements 5mm's is considered chiari....I had 4mm on one side and 6mm on the other and am 18 months post op....the tonsils can be diff sizes.....and u can be more affected on one side more so than the other.

I hope that helps some.


"selma"
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1529185_tn?1291858699
Thanks so much.  I'm just trying to figure out where I'm at in all of this.  It would help if everyone was on the same page Dr wise.

I are you satisfied with the results of the surgery?

I appreciate you taking the time to answer my questions.

"maryelainey"
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620923_tn?1402936350
No worries....yes, that is the problem u can go to several NS's and get several very diff opinions....this is y we say go to a NS that is a true chiari specialist...that is one that treats chiari and chiari related conditions only and daily...not just a few cases a yr...this makes a big difference....even if u have to travel to get to one of these drs IMHO feel it is worth it.

Yes, I am very satisfied with my surgery...u can click on my name(blue hyperlink) to get to my profile page to see my journal on my surgery experience...I also have a few pics on  that page from the surgery too.

"selma"
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