share: A rare brain condition called a posterior fossa arachnoid cyst has wreaked havoc on my life. I am learning to live, finding a new normal.
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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I am amazed to hear of your story Maria. While, reading your work, I thought that you may have received help writing this share. Either way, reading this share proves that you are clear and concise. As a HER WRITER, I am hoping to attack your nerves on an angle that none other might perceive. Of course, these stimulating words are meant to serve your own connection with nerves.
From my point of view, I have within my vocabulary ways to express my disappointment for your condition. Beyond my words, I have spirit and soul to lead you towards an ongoing admiration, concerning your outreach for health.
Please understand that my words reach you solely by way of Comment. Maria Richmond, my awareness to liken you on your health journey surely keeps me near.
Sincerely,
5-19-2009
For this date is by far my greatest name. And for any date other than 5-19-2009, the anonymity may have little consequence to you. Take part to my name Maria Richmond. I wish you health and positive energy.
May 19, 2009 - 12:15amThis Comment
Thank you for your comment. I appreciate feedback. No, my writing is solely mine. I am a freelance writer, and am also working on my autobiography that maps my journey with this rare brain condition. And it has been a journey.
I hope to have many more posts with Empowher, so keep reading.
Thanks again-
May 19, 2009 - 3:11amMaria:
Thank you for sharing your story. I hope the bravery you show in writing this helps other women too with this or similar conditions!
May 19, 2009 - 11:16amThank you...I hope it helps too.
October 5, 2009 - 8:42amMaria - Thanks for sharing your story, though it has me even more nervous. I was just diagnosed yesterday with a 4CM arachnoid cyst on the posterior fossa in addition to a 5MM Type I Chiari Malformation. I haven't visited the neurosurgeons yet, but in reviewing my scans with the radiologist, it sure looks like the Chiari could be caused by the cyst.
I'm anxious about what the potential course of treatment can / will be. Any additional words of wisdom would be appreciated.
October 17, 2009 - 9:26pmI am sorry to hear about your diagnosis. It is scary hearing these terms, especially when related to your brain. My cyst is about the size of a grapefruit and takes up a very large portion of the brain. I have been told by just about every doctor I have seen, world renowned neurosurgeons, neuro-radiologists, neurologists, radiologists, and neuro-anesthesiologists, that it is either "the" largest or close to the largest cyst they have seen in their years of practice. It is so large it has pushed my brain up and forward, while pushing the back of the brain; the brainstem and cerebellum, downward. It has destroyed my blood brain barrier, making it very difficult to take medications, and it has compromised my pituitary gland, my optic chiasm (where the optic nerves pass causing double vision a lot), as well as other neurological problems.
I really need to have the chiari surgery. My neurosurgeon at Duke will not do it for fear he will make my brain sagging worse. So in order to pursue it, I need to see someone at the Chiari Institute. Someone who performs these types of procedures a lot and may be more familiar with chiari along with brain sagging.
To me, the best advice I think I can give is educate yourself. I did a lot of research on arachnoid cysts, and chiaris when that developed. I also asked a lot of questions and kept notes. I kept notes on my symptoms too, writing down each new symptom so I could either learn about it, or ask questions about it during a doctor's visit. I paid very close attention to my body, learned about my body, and became able to recognize what certain symptoms were- what was causing them and what they meant. It helped me to not be so scared when certain things happened. The more I understood, the more able I was to handle them.
Another piece of advice is to see as many doctors as you need to, to feel good about any decision you will make. Doctors can have a way of intimidating you, making you feel like you are crazy, and trying to make all the decisions for you. Ask them questions at your appt. I would go in armed with written questions so that I could feel more educated when I left. They are usually pretty good at answering questions as long as you are prepared with them.
If you are having symptoms, do not let them tell you are not. Many doctors tried to tell me these cysts are normally asymptomatic and don't cause problems. I knew different because one day I felt fine, the next I was waking up in the middle of the night with my entire body paralyzed...numb head to toe. I was battling terrible sleep apnea...all of which was being caused by the brainstem and cerebellum being compressed, and many, many more symptoms. It took one doctor, Dr. Robert Spetzler at Barrow's Neurological Institute in Phoenix to see my MRI and tell me I was heading down a very wrong road if I didn't have surgery. Thank God for him. So make sure your doctor is not only familiar with arachnoid cysts, but has a lot of experience with them.
If I can be of any more help, let me know. Even if it is just for support; I know what you are going through. I wish you all the best and hope you get the treatment you need and deserve. Don't give up, and don't get discouraged. There is help out there and you WILL get through it!
All my best-
October 18, 2009 - 5:00amMaria
Maria, you are amazing to me. I take strength just from reading your posts. You are living -- and teaching -- what it is to be empowhered regarding your body, even when facing doctors who disagree and information that is daunting and a diagnosis that is scary. I hope to read much more of you as you continue your journey. Thank you so much for writing.
October 20, 2009 - 8:04amI 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 - 12:10amMissy 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 - 11:25amYes 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 - 11:15pm