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 Posted: Sat Mar 21, 2015 6:39 pm
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Update (4/13/15): I recently created a FB and Forum archive for other Arachnoid Cyst sufferers... If any of you could take the time to "like" the FB page at Arachnoid Cyst Awareness, I would really appreciate it! Thank you 4laugh
Also, I currently have a few threads on Gaia, recruiting artists to help make Art for Arachnoid Cyst Awareness
Thank you everyone for your well wishes, thoughts, and prayers heart
_
Asking that you please include those suffering from Arachnoid Cysts, please pray for them.
Everyday my FB alerts are full of those suffering, myself included from these brain lesions.
Even if it is a brief prayer on behalf of the community that suffers from them... It is a community largely dismissed by the medical community, and many of us are left without answers or options. Some doctors even refrain from telling patients about these cysts that show up on scans because old school textbooks say that cysts are "incidental" and "asymptomatic" (without symptoms). It's simply not true...
Many these sufferers are children, mothers, and others like myself that are just left without answers, guidance, or help. I have seen two neurologists, a neurosurgeon, a private doctor, as well as a PA and am still without a paddle.
Thank you for your time and thoughts, brothers and sisters in Christ heart
Stories From Arachnoid Cyst Victims
While Jackson girl, 15, awaits brain surgery to remove cyst, her family endures financial struggles
Ethan Strong, Inspiration Behind Pediatric Arachnoid Cyst Foundation
In The Media
Dr. Hrayr Shahinian of the Skull Base Institute on the The Doctors for an Arachnoid Cyst
https://www.youtube.com/watch?v=Y4uoQsGmyBk
Dr. Hrayr Shahinian's Arachnoid Cyst episode of The Doctors
https://www.youtube.com/watch?v=Y4uoQsGmyBk
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Posted: Sun Mar 22, 2015 4:27 am
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Posted: Sun Mar 22, 2015 4:46 am
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Meili Kyumee Youichi Random: Ehh.. is that why you have that username? Do you have any complication? Do you need any surgery? "Most arachnoid cysts are asymptomatic, and do not require treatment. Where complications are present, leaving arachnoid cysts untreated, may cause permanent severe neurological damage due to the progressive expansion of the cyst(s) or hemorrhage (bleeding). However, with treatment most individuals with symptomatic arachnoid cysts do well." Keep you on prayer sis heart
Pain, mostly, since I was hit by a drunk driver in an accident last year. Headaches, nausea, dizziness, confusion, temperature regulation, memory issues, and emotional issues. Some days I can't get out of bed because of joint/mobility issues... It prevented me from finishing through nursing school last fall sad
Have had done all sorts of blood panels, scans, and ultrasounds. The only thing that needed to be ruled out was an UTI that is anti-biotic resistant strain of e.coli... It's been recurring for the past year and I can't seem to completely eradicate it. My WBC is also very low.
A lot of doctors deny that these cysts cause problems, but there are a lot of research to show they do... Many of the individuals on the forums that have gotten surgery, the cysts come back within the same year. Sometimes even bigger than before and/or with complications like infection (especially if a shunt is involved). Fenestration seems to be the biggest surgical option... But sometimes not always possible because the "arachnoid" membrane of the cyst gets wrapped around nerves that make it very risky... Permanent brain damage is also a possible risk. However, if the cyst stays and/or gets bigger - there is also the risk it will continue to injure the part of the pain it is putting pressure on... Mine happens to be deteriorating my cerebellum (posterior fossa).
"The cerebellum coordinates voluntary movements such as posture, balance, coordination, and speech, resulting in smooth, balanced muscular activity." There is even some research publications that show the cerebellum plays a role in mental and hormonal health.
http://en.wikipedia.org/wiki/Cerebellar_cognitive_affective_syndrome
http://scicurious.scientopia.org/2011/02/21/the-cerebellum-and-premenstrual-dysphoric-disorder/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1089778/
http://www.ncbi.nlm.nih.gov/pubmed/12134911
All of the doctors I have seen do say it is a decent-sized cyst (3cm in dimensions) and has mass-effect on my cerebellum... But refuse to go any further than that. That being said, the state I live in the US isn't known for the best healthcare... I would have to go to neighboring states to see a decent neurosurgeon that can actually explain to me what is going on. Most doctors don't seem to know what it even is or how to approach it. |
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Posted: Sun Mar 22, 2015 5:30 am
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Meili Kyumee Youichi Do you have urinary tract infection (UTI) because of the cyst? Keeping you in prayer. Proverbs 17:22 ESV
A joyful heart is good medicine, but a crushed spirit dries up the bones.
Arachnoia Ohhh, no! Haha. That would be a wonder whee It just needed to be ruled out... I've had it since last year. With treatment, I seem to get it to go away for a few weeks, then it comes back. I've always had issues with my urinary tract/kidneys... History of kidney stone and lithotripsy. The only anti-biotic that works against the strain of e.coli I have is Macrobid... I don't want to go on another round because that medication makes you feel worse than the symptoms. I seriously can't keep food down when I take it. If my body doesn't start fighting this thing off, next step will be another round of antibiotics and/or hospitalization to prevent sepsis. Bleck sweatdrop But thank you so much for your prayers, thoughts, and well-wishes heart I mostly wrote this on behalf of the Arachnoid Cyst community... I am on a forum where I have grown close to those suffering from symptomatic cysts. It's terrible what some people have to go through. Especially the babies and kids... It's heart-breaking. sad |
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Posted: Sun Mar 22, 2015 8:09 am
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Posted: Sun Mar 22, 2015 6:05 pm
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Posted: Sun Mar 22, 2015 6:06 pm
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Posted: Mon Mar 23, 2015 9:41 am
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Posted: Tue Mar 24, 2015 4:39 pm
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Posted: Tue Mar 24, 2015 5:57 pm
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Posted: Wed Mar 25, 2015 5:03 pm
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Posted: Thu Mar 26, 2015 12:33 am
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Meili Kyumee Youichi Random: Ehh.. is that why you have that username?
Oops, forgot to answer this!! Yes, that is why I chose this username biggrin
Quote: arachno-, arachn-, combining forms meaning 'arachnoid membrane' or 'spider': arachnoidal, arachnoidism -noia a combining form appearing in loanwords from Greek, where it meant “thought”: |
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Posted: Sun Mar 29, 2015 6:01 am
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Arachnoia Meili Kyumee Youichi Random: Ehh.. is that why you have that username? Oops, forgot to answer this!! Yes, that is why I chose this username biggrin Quote: arachno-, arachn-, combining forms meaning 'arachnoid membrane' or 'spider': arachnoidal, arachnoidism -noia a combining form appearing in loanwords from Greek, where it meant “thought”:
Wow, you actually looked back and found a question you missed?! That's an awesome brain skill really!
Thank you for answering this. The first thing that came in my mind was "spider" when I saw your username. Glad to know the real meaning of it now. 4laugh |
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Posted: Sun Mar 29, 2015 6:49 am
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Meili Kyumee Youichi Arachnoia Meili Kyumee Youichi Random: Ehh.. is that why you have that username? Oops, forgot to answer this!! Yes, that is why I chose this username biggrin Quote: arachno-, arachn-, combining forms meaning 'arachnoid membrane' or 'spider': arachnoidal, arachnoidism -noia a combining form appearing in loanwords from Greek, where it meant “thought”: Wow, you actually looked back and found a question you missed?! That's an awesome brain skill really! Thank you for answering this. The first thing that came in my mind was "spider" when I saw your username. Glad to know the real meaning of it now. 4laugh
It was around the time of my initial diagnosis... Was sort of dumbfounded. This username just kind of made sense.
And no worries! I probably would have thought it was about spiders, too blaugh
Hope you are doing well, sister! heart |
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