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Over 100 others know "It's all in your head" Please join ArachnoidCyst.net so they can all "feel your pain"

There are other Miscellaneous things to know out there and other places and people to know. These are some links I have found by just being out there. If you would like to add anything including your story please e-mail.

I totally think that you should have these things surgically taken care of IMMEDIATELY. Some doctors like to wait to see if they magically go away and sometimes they do but if you have known longer than a year it's not going anywhere. Remember that "a symptom" is too late to heal once it becomes "symptomatic". This article backs me up on this.

Related
Pseudo tumor Cerbri which is condition related to our disease because it deal with CSF & a good book about PTC
Arachnoid cysts and Syringomyelia?
Tourettes and Arachnoid Cysts
Nerves
Radiculopathy
Chari Malformations (I think this disease is what we end up getting and our symptoms are similiar)

Help
www.ilusa.com

Blue Cross and Blue Shield will not cover you if you have been diagnosed with this disease. Once you have lost coverage you are considered having a pre-existing condition and have to prove that you have not been "symptomatic" for two years. They don't tell you that in the handbook.

They trace you through your SSN number.

Medical Marijuana
united medical care givers clinic 310-358-0212

Abortion. This is not a political debate. If you don't like what I have to say then start your own damn site or you are more than welcome to start taking phone calls from people freaking out, I'll be more than happy to LET YOU DO IT because I'm exhausted and tired of being screwed by the medical community too and when I read about these babies with shunts and brain surgery it makes me want to die because they haven't even lived and I know they will one day suffer with Syringomyelia too. It's not about YOU but the life and health of YOUR CHILD. If you want to have a child with an incurable degenerative disease then that's your right. OR it can simply die in your womb. I want you to consider other things such as the expenses of dealing with brain surgeries (emotional and monitarily), drugs, long term treatment, mental health issues as most people with this disease die at their own hands. Think about it long and hard because your baby might not have the life you want for it. Detection with a sonogram and this girl is OK (BS).

Otherwise I think you might want to do some further research than this:

If you are pregnant consider this because life is too short to live without a cure.

If you didn't like that perhaps you should read this taken from fetus.net an article by Tae-Hee Kwon, MD, Philippe Jeanty, MD, PhD. (medical professionals in case you were wondering)

Obstetrical management (of Arachnoid Cysts)

When the lesion strongly suggests an arachnoid cyst, the patient should be counseled on the rather benign prognosis of the lesion28. However, if the lesion is discovered before 24 weeks and when a more serious lesion (e.g. porencephaly or intracranial tumors) cannot be excluded, termination of pregnancy should be discussed with the parents because the prognosis is largely unknown. In the third trimester, when hydrocephalus is not pre­sent, there is no reason to modify the mode and time of delivery. In the presence of hydro­cephalus with normal skull dimensions, there is no evidence that a cesarean section could improve the outcome, and we believe that a vaginal delivery should be attempted17, 28.

If you want your kid then welcome to the Arachnoid Cyst family. Volunteers will be put to work but if you want to spew your negativity blog it out on ArachnoidCyst.net. It takes way more energy to be negative so think really hard about how you can contribute instead of turning me into your whipping post because you are frustrated with your treatment from the medical profession. I'm just a patient too and I was the one that started this site to help you. This is just advice. If you think you can do better I would be happy to add your e-mail to our list when we get new people that write to us, let you take phone calls, try and get funds raised and think of ways to get congress involved so the kids don't suffer the way SYMPTOMATIC people do (and one day you will have symptoms).

French Version

If you need to talk call 323-908-3923 (FROM 10 AM TO 10 PM PST... Please do not call me in the middle of the night unless it's a crisis as it upsets me greatly) or e-mail . Someone will get back with you. Please include your phone number as that is the fastest way to get back to you.