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How you brain works... IN ENGLISH!

We are not like other people...

The stages of Arachnoid Cysts.

How your diet can effect your quality of life and check out Sean's info .

DO OUR OWN RESEARCH!!!

Non-medical approaches to dealing with pain and pressure.

Let it all out in the AC forum at arachnoidcyst.net

Over 100 stories from real AC sufferers Submit your own story.

Confused... no kidding. Read this BEFORE you talk to your doctor.

It is really hard to find doctors that even know what an Arachnoid Cyst is. 

When you are full of despair and need someone just to listen and you want to hear I've got the ear. But I need HELP too to build this fledgling foundation and I NEED to help you navigate through this nightmare of having a brain tumor nobody wants to acknowledge. You won't get an answering machine on Sundays, it's me! Please be aware of the time difference and respect the hours since I have a 5 yr old. Right now where I live it is about: 11:04 am. So feel free to call!


Your donations will help support our cause. We are waiting for the last piece to finish up the complete non profit status but if you need a number then I have one!.

I never in my wildest dreams imagined that there would be so many people that needed help, needed a shoulder to cry on, someone to talk things through and someone to try to keep all the stories of people calling straight in their head like how many people have died, had strokes, have kids with "autism" or some other kinds of diseases when it's really just too much Intracrainl Pressure.

I'm trying my best to be a service to all of those in need and in greed. I've been used, abused and cared for. Some people are blessings, others are curses. Which one are you going to be? Tax my energy until there is nothing left of me or build me up so I help the others become somebody?

Someone asked me recently if we ever got better. We degeneratively get worse but your attitude is what makes you and if you hold my hand, have a sick sense of humor and just remember it's only life every once in a while and you can take it where you want then maybe you can learn to enjoy your own. You will never be who you thought you were but maybe you can learn to accept the person you are becoming. Be gentle with that person. Love, Catherine Clay

Here is a small list of amazing doctors that have saved people's lives.These are men I trust, except for Dr.s Bailes, Foody, Kern, and Van Beijnum I've met all of them. I do not know Dr. Jho and haven't met anyone that has had surgery with him, either so if you have please please please e-mail me. If you would like to recommend a doc please e-mail me.

If you want more information on these doctors please make a donation (it's taken me years to compile this list and these experts will shave years off your life). And folks, when you contact these people please try and be considerate so I don't get nasty grams from these people's offices. Ask first if they are willing to look into your problem, they will find out if they take your insurance (if you don't have it... beg, borrow or steal) and you will get the attention you deserve if you WRITE a letter and mail it to the office enclosing your :

1. An MRI with a Tesla rating over 1.5 (key) reports and scans, both spinal and brain
2. See an Endocrinologist to do a blood work up with HGH, Cortisol and hormones being a look at
3. See a Neuro-optomitrist and have a visual field test done.
4. See an Neuro-ENT and have an audiogram.
5. Consider seeing a neuropsychologist and having a MMPI done and seeking cognitive therapy as well because it's hard to want to live when your brain is telling you to die.
   

Some of these people are kind enough to give phone consultations, the ones that don't are noted.

West Coast Neurosurgeons

	Dr. William Caton III. 50 Alessandro Place, Suite #330, Pasadena 91105 (626) 793-8194 He and his associates have seen over 500 AC patients and have done approximately 100 surgeries.
	Dr. Michael L. Levy, PhD 8010 Frost Street, Suite 502 San Diego, Ca 92123 (858) 966-8574 mlevy@chsd.org Director of Pediatric Neurosugery (believes in fenestration and will see adults with Arachnoid Cysts)
Midwest
	Dr. Lawrence Foody 616-454-3465 414 Plymouth Ne Grand Rapids, Michigan 49505 Does Laser Removal.
	Dr R.Lee Kern The Neurological Group of Chattanooga. (423) 265-2233 * 1010 East 3rd St *Chattanooga, TN 37404 After 13 years one of us (after going to the Cleveland clinic) had to have her AC worked on again. They thought she had a tumor but it ended up being scar tissue from the last surgery. This man helped her out but the fenestration didn't take so... (thank you for loving our site :)
	John Joseph Guarnaschelli Neurosurgical Group 225 Abraham Flexner Way Ste 505 Louisville, KY 40202-1846 (502) 584-4121 Dr. Guarnaschelli is a hunk of a doctor. He's one of Dr. Caton's comrades and I saw him when I was 19 after my first brain surgery when both my sister and my mom were doing chemo and he asked if I wanted to remove some of the fluid left behind from the aspiration I had JUST had to which I went out to my car and cried and put away the inevidable because I couldn't put my fmaily through that again when everyone else was suffering. He operated on Wendell Cherry, the head of Humana before his passing. He's probably the best neurosurgeon if you are in the midwest as I am positive if need be he can consult Dr. Caton if you were to ask.
Europe
	J Van Beijnum Department of Neurosurgery, University Medical Center, Utrecht, The Netherlands I'm not pushing laser doctors but they are cleaner and have fewer incidents of nastiness and a likelyhood of a one shot surgery. Someone that took the time to write an article for Pub Med might be wroth a look.
East Coast
	We respectfully request that Dr Bailes' email & faculty office contact information be removed from your website. While we are grateful that his former patients have recommended him as an expert, Dr Bailes can't provide telephone consultations. We also have HIPAA issues with email confidentiality. New patients would need to be referred for surgical evaluation by their current physician. The referring physician can schedule an appointment by calling 1-304-598-4800. Some patients may encounter insurance issues such as being out of network. Thank you for your assistance in this matter. We applaud your efforts to provide patient education and peer support for this diagnosis. Becky Kessler Administrative Secretary Dept of Neurosurgery (304)293-1736 Is Dr. Bailes' worth the trouble? Do a google on him... I only know of one patient he has operated on and that patient didn't know what was done to him only that his Arachnoid Cyst was operated on. He only wants to communicate with you via your doctor and won't talk to you on the phone and only if you live 7 states away from California.
	I found this website in the UK which has some help. The Charity is the only organisation in the UK providing educational material about Syringomyelia. It funds research work and provides a national helpline and support network which includes qualified support counsellors and Syringomyelia Specialist Nurses for sufferers and their carers. A national branch network putting sufferers in touch with each other is expanding across the United Kingdom. The Ann Conroy Trust sees the dissemination of knowledge about these conditions amongst health professionals as one of their principle aims. The following Consultant Neurosurgeons are affiliated to the charity. They practice in different parts of the United Kingdom and they all have an interest in the treatment of Syringomyelia and associated conditions. Mr R D E Battersby FRCS Royal Hallamshire Hospital Sheffield S10 2JF Mr Richard Selway FRCS Kings College Hospital Denmark Hill London SE5 9RS Mr Munchi S Choksey FRCS, Doctor of Medicine (Cantab) Walsgrave Hospital Coventry CV2 2DX Mr Richard Cowie MB ChB, FRCS Ed, FRES Ed (SN) Greater Manchester Neurosciences Centre Salford Royal Hospitals Mr Graham Flint FRCS Queen Elizabeth Hospital Birmingham B15 2TH Mr Richard Ashpole FRCS Queens Medical Centre Nottingham NG7 2UH Mr Carl Hardwidge (BM) FRCS Hurstwood Park Neurological Centre Haywards Heath RM17 7SP Mr Patrick Statham FRCS Western General Hospital Edinburgh EH4 2XU Mr Sid Marks FRCP (Lond), FRCP (Glasg) FRCS Eng The James Cook University Hospital Middlesborough TS4 3BW Mr R A Johnston MD, FRCS (E), FRCS (G) Department of Neurosurgery Southern General Hospital Glasgow G51 4TF Mr Tim Pigott FRCS The Walton Centre for Neurology and Neurosurgery Liverpool L9 7LJ Mr Bruce Mathew FRCS Department of Neurosurgery Hull Royal Infirmary Hull HU3 2JZ Mr Bob Redfern FRCS Morriston Hospital Swansea SA6 **Mr Connor Mallucci FRCS** The Walton Centre for Neurology and Neurosurgery Liverpool L9 7LJ Professor J Van Dellen FRCS (Edin), PhD (Med) Charing Cross Hospital London W6 8RF Miss Jennifer Brown FRCS Southern General Hospital Glasgow G51 4TF ** highly recommended Consultant Neurosurgeons who would like to become affiliated to the charity should contact graham.flint@uhb.nhs.uk

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