When I was diagnosed with a rare brain disorder at the age of thirty-five, I was shocked. What was more shocking was that I was a mother of two small boys and I had just been told that I would need brain surgery.
The symptoms came on so sudden that I wasn't even sure there was anything physically wrong with me. I thought that I was stressed out, I was overly tired, and I needed a good rest. When the symptoms did not get better; but instead, got worse over time, I knew I had to see a doctor. I was having aching at the back of my head, and I would wake several times in the night to find my head completely numb as it laid on the pillow. I would physically have to lift my head off the pillow to allow the feeling to rush back in. I also began getting confused and disoriented. When I walked in my local grocery store I'd shopped in many times and couldn't find the dairy section, I knew I was much more than just tired.
After visiting a neurologist, he decided an MRI was in order. The MRI revealed a very large posterior fossa arachnoid cyst. This is a cyst, or a fluid-filled sac that sits on the back of the brain. Mine was compressing my brain stem and cerebellum; both of which are vital to life.
I was referred to a neurosurgeon who decided that with my symptoms, the best form of treatment would be do a fenestration of the cyst. This is a procedure that requires the doctor to use a wand and go inside the cyst to disengage the walls that had built up inside the cyst. These walls had grown over the years; allowing fluid to get inside the cyst, but not back out.
The surgery worked, but only for three months. I had quite a bit of relief from the pressure until gradually it built back up. With my condition, the only other option was to put a shunt in. A shunt helps keep the fluid draining. It siphons the fluid out, keeping it from building up inside.
I have had the shunt for almost four years now. One concern with shunts is that it can over drain. This brings on a set of problems of its own; such as brain sagging, and a Chiari Malformation - a condition that causes the brain to herniate into the spine. I now have both problems. My shunt over drained for several months leaving me with a space between my skull and the dura matter. My brain stem also sunk into the spinal column giving me a whole new array of symptoms.
I live day-to-day with brain trauma and many symptoms that go along with it. There is a surgery to help correct the Chiari, but getting up the nerve to go through yet another brain surgery is where I am today.
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Hi James Wife
While we cannot recommend specific doctors, surgeons, or centers, I suggest you look at medical universities nearby. Most of them have websites. Look for one with a large neurosurgical department with newer therapies available, such as gamma knife and that sort of thing. That tells you they are likely up to date on current research. If the center you talk does not have expertise in your husband's condition, they will probably be happy to refer you to a close large facility that does. Most educational centers do not want to bite off more than they can chew when it comes to a neurosurgical procedure, so will often tell you the best place in your area. Poor outcomes reflect on their programs, so they usually choose their patients carefully.
If we can help further, please write again, and good luck to you and your husband.
June 23, 2010 - 10:34amThis Comment
My daughter is going in for surgery this Friday for a Posteriar Fossa Arachnoid Cyst. I was happy to read your story and understabd a little more. Thanks!
May 4, 2010 - 3:33pmThis Comment
Hi Dia - Thanks for joining our site and providing so much information about your background. I can't even begin to imagine what it was like for you - especially at such a young age - to go through the experiences you've had. I do understand getting angry, and appreciate what you've done to help bring more information to others and help people advocate for themselves.
Congratulations on your first conference, what an accomplishment! Your group is welcome to use our "Health Events" service to list your conference and events.
https://www.empowher.com/events The link to use to post events is at the bottom left side of the page.
EmpowHER was founded for women like you, and others, who have had difficulty in getting the information they needed to manage health concerns and who want to support other women through sharing information, resources, ideas, stories and words of comfort. As your own journey continues, and as your group grows, I would encourage using our "Share" feature. I hear over and over from women how much it means to them to know they're not alone and that others are there for them. I'm looking forward to hearing more from you in the future and wish you all the best. Pat
March 5, 2010 - 5:16pmThis Comment
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September 19, 2013 - 3:51pmThis Comment
Hi, your story is a little bit like mine, though I ended up having over 20 surgeries because my posterior fossa arachnoid cyst caused me to have hydrocephalus. In 2003 I founded Arachnoid Cyst Awareness which is an organization solely for those suffering from arachnoid cysts and related conditions and their loved ones. We just launched an arachnoid cyst petition and a new arachnoid cyst network if you are interested in joining our community. I know our members would be interested in hearing your story. We also have an E-Magazine, and I would love to share your story via that. If you would like to check us out our website is here: http://arachnoidcystawareness.com
March 4, 2010 - 6:06pmThis Comment
Hi Anon - Thank you so much for writing and making us aware of your group. We've had several members write in with questions about arachnoid cysts and it looks like your organization could be very helpful and supportive. We would be very interested in hearing YOUR story and why you founded the organization. Can you give us a sense of how difficult it has been to find information and perhaps some suggestions on what others can do? Also, I hope Maria will be in touch with you. She has provided a lot of support and information to EmpowHER members and is committed to helping others and easing their journeys if possible.
March 4, 2010 - 6:51pmAgain, thanks for getting in touch and we look forward to hearing more from you.
Take good care,
Pat
This Comment
I am sorry to hear about your husband. It sounds terrible what he is having to go through. I don't blame him for not wanting to take certain medications because they make him feel strange...I deal with that all the time. Sometimes the negatives with certain medications outweigh the benefits. I have the same issues with medications...there are very few I can take.
I guess the best thing you can do for your husband is to just "be there" for him. What he can handle and is willing to handle will have to be up to him. But being there and being supportive can and does mean a lot. I hope that the time will fly for him to be able to get in and be seen. If the pain and symptoms get to be too much for him, maybe you can just encourage him to go to the ER.
Keep us updated on your husband's situation. I will be interested to hear what they decide to do for him. Good luck and my thoughts and prayers are with you both.
February 23, 2010 - 8:16amThis Comment
I will pray for you. You are a very strong person and now i am ready tof ace my husbands doctors head on and not let them turn him down. thank you.
February 21, 2010 - 12:10amThis Comment
Missy Anne,
Do you need help with any research or support for your husband? Has he been diagosed with this sort of cyst?
February 22, 2010 - 11:25amThis Comment
Yes my husband has an aracnoide cyst on his cerebellum. It measures 8x3.8x3.5 cm. I found a neuroseurgeon. His name is Camacho, Arturo, Md. He can not see my husband until 3/3/10. This was one of the only dr. that i could find to take our insurance and this was the soonest apt. I could get. My hubby ran out of pain meds today. Im waiting for him to say he needs to go tothe hospital to get more but he doesnt want to go becuase he says they drug him up it makes him feel worse than when he is at home becuase it doesnt take the pain away only makes him feel crappy from all the drugs they give him. Im sure some timetmr he will break down and go. I just dont see how the drs and hospitals say its not life threating but he is in so much pain with vomiting, constant headach from a 5 - 10, constant blurry vision. I spent alot of last night and this morning crying because i feel so bad for him.
February 22, 2010 - 11:15pmThis Comment