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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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My 17 yr old had her cyst drained in May. I was wondering if they fill back up. She also had a decompression for her Chiari. She had her C1 removed.
August 31, 2015 - 11:24amThis Comment
I have a posterior arachnoid cyst and have had 3 brain surgeries and next surgery will be to shunt. if anyone needs a doctor in south carolina that WILL operate please see Dr. Sunil Patel at MUSC in Charleston SC.
May 17, 2015 - 7:35pmThis Comment
Hi,
I have been looking for an active forum on arachnoid cysts. I am currently 24 weeks pregnant and at my routine 20 weeks scan it was highlighted that my baby has a large posterior fossa arachnoid cyst that was taking up about a quarter of the baby's head. We were referred to St Mary's foetal medicine unit In Manchester and are going for an MRI scan on the baby this weds. So far we have been told that it is very likely our baby will be born with some form of disability, however they cannot give us any answers as to how severe this might be and in what ways she will be affected. We have been offered a termination but have decided to carry on with the pregnancy for now. I am hoping to hear from anyone in a similar situation as to what issues they faced following birth and what outcomes can be expected. I am so worried and finding the not knowing very difficult, I am unable to prepare as I do not know what to expect.
Thanks in advance
Faye
March 22, 2015 - 1:46pmThis Comment
Faye- I had a baby last April who was born with a massive arachnoid cyst, agenisis of the corpus callosum and hydrocephalus. I was told the same thing- no one could tell us if our child would be disabled or not. He's had two cyst fenestrations and is doing very well. He's slightly developmentally delayed but completely normal otherwise. We found out at 28 weeks and I had him at 36 weeks. He is such a joy!
March 29, 2015 - 7:35pmBest of luck to you and your little one! There is definitely room for hope!
This Comment
I am 31 weeks pregnant with my 3rd child, our only baby boy. He had a very large arachnoid cyst and complete agenesis of the corpus callosum. We will have ultrasounds throughout the pregnancy to watch for hydrocephalus. Praying that it doesn't develop, but it's great to hear that your child is doing so well. This had all been s very scary ride. Have you taken advantage of the early intervention system?
July 10, 2015 - 6:46amThis Comment
Yes. I highly recommend doing the same for your little guy! I don't know how it is in your state, but in ours a dx of ACC automatically qualifies a child for services. They started coming when he was two weeks old! He developed a dominant side very early on and they have been very helpful with that. He's 15 months and pulling to stand/cruising. :)
Have you met with a pediatric neurosurgeon yet? That was one of the more stressful elements for me- choosing a surgeon.
The last few weeks of his pregnancy definitely were the hardest for me. It was a crazy emotional time- the excitement that comes with knowing your little one will be here soon but also the apprehension in not knowing what will happen. Hang in there! There is a light at the end of the tunnel. Best wishes to you and your little one!!
July 10, 2015 - 9:29amThis Comment
I have a large 5.5x5.5x9.5 posterior fossa arachnoid cyst.and have all the symptoms and they don't want to operate. I'm 56 and my life sucks
February 21, 2015 - 11:44amlost and confused.Don't know what to do.
This Comment
Hello, my name is Denise, I am 48 yrs old. I was just diagnosed with a 4 cm arachnoid cyst back in September. The only symptoms I am having are dizzines, mild headches, and short term memory loss. I will be making a trip to Newark De. On January 21 to see a Neuro Surgeon. I strongly feel that I want this resolved because I do not want to sit around and wait for more debilitating symptoms.
November 14, 2014 - 7:56pmThis Comment
I am 28 and have a 6yr old daughter. I was diagnosed with a large posterior fossa arachnoid cyst at age 7. At that time the cyst was 5x5x2.5cm, and shunting was not an option as it would stop the csf flow, so over the years we have taken a wait and see approach. Well I have been trying to get drs to order an mri for years now since I have been having numbness and tingling in the extremities and severe pressure in my neck and head. Finally was able to get a dr to order an mri and before I even got the results I was told to make a appointment with a neurosurgeon. I have the apointment on Monday, but got my results from mri yesterday and I am in shock. I have been told that the smptoms were not from the cyst and it was all in my head. Well they were right, info I now have pending trip to neuro surgeon in 3 days is that the arachnoid cyst has grown to 6x6x7.2cm, I also have a 5x4.5x10mm pituitary cyst and a 4mm pineal cyst as well as. 12.3 mm kidney cyst. At this point I have resigned myself to the inevitable brain surgery but that thought is terrifying. Thankfully at this point thre is no chiarri malformation or syrinx, both of which my brother had. Now its just a at and see what the neurologist says and to see if there is even an option for shunting the cyst dueto size and where it sits. I'm totally scared but am looking forward to the possibility of some kind of relief
January 18, 2013 - 5:50pmThis Comment
Wow....if your story doesn't sound like mine....then I don't know whose does. : )
So sorry you have all this going on. I got the same runaround with doctors and trying to tell me it was all in my head. Have you seen my book, appropriately titled, "It's all in Your Head." If you haven't seen or read it, you may want to. You will probably recognize a lot of the story as your own.
I was made to believe the same thing. Got no where with docs and treatment and then finally had the fenestration. Then the shunt....4 months later, and then a different neurosurgeon following my shunt, let it over drain and I got the sagging (or slumping) brain and the Chiari Malformation.
Now, I didn't have more than one problem or type of cyst in my head in the beginning. And my cyst had grown to 8x8x something. It takes up over a 1/3 of my brain. And of course now, I have the Chiari and slumping brain. I too; however, do have problems with cysts on my kidneys, as well as ovarian cysts. I have been told that some people are just cyst producers. Maybe you and I are. Sounds like it.
Please keep us updated. Look up "It's all in Your Head" sometime if you haven't already. I'm sure you will be able to identify with quite a bit, and if not all now....after you have surgery, etc.
Please take care and continue to be an advocate for yourself. Don't ever let doctors convince you of something that you know is not right. See other doctors if you have to. The key is knowing your own body and being able to relay what's going on with it, to the doctors. The more in tune you are with it, and can articulate what's going on, to the doctors, the more they can help you.
Take care of yourself.
Maria
January 19, 2013 - 6:23pmThis Comment