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Arachnoid Cyst with Chiari Malformation

If you would, please humor me. How many here who have been dx with Chiari Malformation also have an Arachnoid Cyst?

Just my own curiosity.

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20874427 tn?1587995857
Yes i have a Arachnoid Cyst and Chiari 1 and i am in so much pain i can't even shower by myself :(
Helpful - 0
Hi Debmol62, I am so sorry to hear you are in such pain.....did you find a Dr well experienced with your conditions? Have you tried CBD oils?
Have you had decompression surgery for your Chiari?
I’m sorry to hear that you are going through this Debmol62.  I am empathetic to your struggle. Dealing with medical professionals and getting them to understand how and or why the two effect and affect us seems an impossible battle at times.
I have tried CBD as SelmaS suggested. It does help with seizures and thus seizure type headaches from the Arachnoid side of things. I’m not one to push anything on anyone. For your sake though I will tell you that I’d never in my life had anything near complete pain relief until a couple years ago. My system does not metabolize most medicines thus even pain meds are useless unless given through an IV. A little over 2 years ago now my son talked me into trying medical cannabis. For me and used in reason it does make a world of difference. My pressures go all over because of the hydro, AC and Chiari but this really does help calm the pain. It is not at all what I expected. I can easily function perhaps better some days which I didn’t expect. It isn’t perfect but for me it is the best treatment thus far.
Strange as it sounds the NS who did my last revision told me to use a strong coffee like Starbucks with 2-3 extra shots of espresso. He said to drink it asap after noticing pressure building. I don’t understand it because the caffeine makes your body produce more CSF? But that is why he is the doctor and I’m not. The mega dose of caffeine does often take the edge off if the pressure is feeling too much. And I frankly hate coffee always have. Lol!

ChiariWolf wishing you a happy day
ChiariWolf, thank youfor sharing your experience with this condition and what is working for you....we are all different and need to see what is best for us.....but I am glad to hear you are getting some relief with the CBD.

Also glad to see you posting...I miss you <3
Avatar universal
:-\ Yes, I got the lets wait and see what happens answer. The cyst is protruding outside of the skull, in the skull has grown substantially as well. Looking around for a second opinion right now.
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1059090 tn?1254466801
imsorry i never noticed the question,

but yes i had pain in the back, it was like having a knife stabbed in that area, and nothing relieved it,

i have just had another MRI and it had showed another cyst forming in T5, its small, but already flattening my cord, i have severe pain in my chest, back and left arm, i cant get rid of the pain, i use any drug i can get my hands on, but a hot shower seems to help at times, very painfull, everytime i went to hospital, they were checking my heart because of the type of pain, im now having B/P problems and spiking heart rates,

how has it been? did you get any results
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Avatar universal
I was diagnosed with chiari malformation, about 2 years ago. I also have an arachnoid cyst.
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Avatar universal
Your cyst compressing your thoracic area...did you have pain in that area?  Just wondering how they found it.  I have had 6 MRI's in the past year, but over the last few months have developed pain in my mid thoracic area, almost unbearable at times.  I know my MRI's were of the brain and C-spine and would not have imaged down that far.  Just interested in your story and especially if this cyst caused you pain.
(I have a 8mm chiari malformation with "some blockage" of spinal fluid)  Thanks!
Helpful - 0
1059090 tn?1254466801
hi i have, i had a 4.1cm one compressing my spinal cord, in in thoeriacs region T7 T8 T9.(sorry my spelling)its very rare to get there,   i had it removed nearly two yrs ago,

im getting more MRIs and hopefully i havent got another one, also i read the chiari can cause cysts, (spinal ones and brain), i hope this helps

where is your cyst if you have one?
Helpful - 0
620923 tn?1452915648
CW...I know in the past 2 yrs....there have been a few...I have not had a dx of ne cyst in  or of the brain.

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539750 tn?1226521677
I have a pineal cyst.
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1063386 tn?1287878569
My mobile version of this won't let me vote.   But no. I haven't.  But than again I am barely dx with chiari.  Who knows what else will unveil it self down the road.    
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999891 tn?1407276076
I was DX with a Neurenteric Cyst witch is a congenital Intradural cyst and from what I can gather is similar to an Arachnoid Cyst.
On my MRI report this Cyst is described as "A variant of Split Notochord Syndrome"

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