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 started having these really bad headaches and i spoke to my Dr about it and of course he said it was all stress and wouldn't put a request in for a CT scan , he told me to go threw the ER, which i finally did so. They did the scan and it came back i havea 3.9 x2.3 on the right side . I AM very scared on what is going to be the next step. Every day when i wake up i feel off, it feels like someone is squeezing my head and the hand treamers are getting worse . please if u can i need advice
March 12, 2015 - 12:01pmThis Comment
Hi my name is George i was having bad.headache. and tired all the time and forgetting alot of times left arm going num.and other proublems to find out that i have a large posterior fossa arachnoid cyst.
September 24, 2012 - 10:37amThis Comment
I have a 16mm arachnoid cyst on my midline posterior fossa. And I am very ill .. i have severe balance problems/dizziness, head pressure, pressure all over my head, i have double vision, i get extremely exhausted, and i am confined to my bedroom. I am unable to go out or travel because I get such horrible head pressure and get dizzy and feel like I am sinking. Since my cyst is only 1.6cm or 16mm in size the surgeons will not operate. I wish someone would just take the cyst out. So I can understand your problem.
July 27, 2012 - 2:24pmThis Comment
Hi,
So sorry to hear about your problems and your symptoms. They sound an awful lot like how mine started. Have you heard of my book, "It's all in Your Head," Maria McCutchen? Here is a link to it on Amazon.com....
http://www.amazon.com/Its-Your-Head-Maria-McCutchen/dp/1613460716/ref=sr_1_1?s=books&ie=UTF8&qid=1340461645&sr=1-1&keywords=it%27s+all+in+your+head+maria+mccutchen
You may want to take a look, get one and read it. Could be a good source of info for you and what to do and not do. You will probably find some similarities in our conditions too. I have gotten a lot of positive feedback from it and here is what one mom wrote to me yesterday, as a matter of fact. Her son was diagnosed with a brain cyst, and here is what she said after reading my book:
"In May my six-year-old son was diagnosed with an Arachnoid Cyst in his brain. He had surgery just two weeks after it was discovered because it is abnormally large and he was symptomatic. He wasn't a great candidate for fenistration, so he had a shunt/valve placed instead. Needless-to-say it has been very hard to adjust to what has just happened to our family in the last few months.
I devoured your book as soon as I got it in the mail. Thank you for writing about your experience with your cyst. As a parent of a younger child dealing with this, it is so powerful to read of your experiences with symptoms, procedures, and adjusting the shunt to the right settings.
Having an account of your knowledge and experiences will surely help my husband and me be aware of what symptoms of pressure to watch for in our son.
Thank you, Thank you, Thank you. . . . and keep staying positive. You are amazingly strong to have suffered so much and come out of it with a strong belief in God and grace to live your life completely."
Anyways, you may find it helps you in some way. If nothing more than to know there is someone else out there that shares your pain and frustration.
Keep keeping the faitih. Keep searching, too, for that doctor who is going to help you. Someone I just met online got the name of my neurosurgeon, the one who operated, and sent him his records and films to get his opinion. That is what I did and wound up having 2 brain surgeries by him....one to fenestrate the cyst and one to put in a shunt. His name is Dr. Robert Spetzler at Barrow's in Phoenix.....should you want to research him.
Anyways, keep me informed and keep keeping the faith. You will get the treatment and care you need and deserve. It may take some effort on your part to find the right doctor, but do not give up. Your brain, your body and your health depend on it.
Talk to you soon -
Maria
July 27, 2012 - 2:51pmThis Comment
Dear Maria,
thank you so much for taking time to reply to me. I will surely go to Amazon and get your book.
My story is that I am 31 years of age. I have been bound to my bedroom for 10 years now (since age 21). I was punched on the back of my head with a chain at the age of 12. I was knocked out cold and hit the cement on the way down when I got knocked out by some bully from behind while I wasn't looking. Anyway, I got up and was fine. I led a normal life. Until around the age of 20 or 21.
That is when the symptoms slowly started. First it started with dizziness and disequilibrium. For example, if I was in the car and the car would be moving and then it would stop, I would feel like I was still moving. This is a very scary feeling. This dizziness led to anxiety (something no-one in my family has). Then I saw a psychiatrist. He said this is physical. I went to a cardiologist (I also started having rapid heart beats).. and he said go see a psychiatrist.
I went doctor to doctor. The condition got so bad in July of 2002 that I had to quit college. I was only 21 years old. I started suffering from head pressure, vision problems, anxiety and severe balance issues to the point I stopped functioning like a normal human being anymore. Luckily I was a computer programmer and a very good one at that so I was able to work out of my bedroom to earn a living.
Nevertheless, I lived in California (still do). Went to Standford, went to UCLA, even met Dr Hrayr Shahinian at the Cedar Senai Medical Center (twice around 2006). At this time I was 25 years old and all they had found was a 4mm pineal gland cyst.
I went to all kinds of chiropractors, nuerologists, nuerosurgeons, eye doctors, heart doctors, chinese medicine doctors, even cranial doctors. One cranial doctor stuck balloons in my nose and inflated them down my throat pressing up against the sphenoid bone and told me that he was going to change the shape of my cranium. This was called NCR (founded by Dr. Dean Howell). I spent thousands and maybe over 100,000 usd on these doctors. I paid a dentist about 50,000 usd to re-align my bite completely. I spent every dollar I made on the doctors. I even saw multiple psychiatrists.
I even went to the famous Amen clinic in New Port beach and lived the for 2 months before they said they could not help me.
Then in Feb of 2012 I went to a local Oncologist who was offering Hyperbaric oxygen therapy. He said it would help me. After only 1 session I had a horrible reaction and suffered a form of barotrauma. I demanded an MRI immediately he refused (the doctor who gave the barotrauma). I went to a local nuerologist and he refused the MRI also saying I was basically a quack (not in those words of course).
I went to my psychiatrist and told him they wont give me the MRI. He himself, does not know why I am so dizzy and why I have such horrible head pressure so he ordered the MRI which revealed the 1.6mm arachnoid cyst on the midline posterior fossa.
Even my psychiatrist thinks this is the cause of my symptoms as this could easily be pressing up against cranial nerves. But since then I have contact a nuerologist (the same one who thought I was crazy) and he actually threatened me on the phone. No joke. I told him how he should have ordered the MRI in March. But instead of owning up he threatened me and told me I was a liar.
Then I have now contacted Dr Hrayr Shahinian (he is the only doctor I respect). And my life is in his hands now. He is the best Nuerosurgeon I know of. And right now he talked to me on the phone as I can not travel. He is 3 hours away.
I told him my situation since the last time I saw him I have a new discovery (the arachnoid cyst). He said that I have 2 cysts.
1. Pineal Gland cyst around 4mm.
2. Arachnoid cyst on midline posterior fossa 16mm.
He asked me what all I had done since my last conversation with him in 2006. I told him I saw famous ENT surgeon Dr Robert Jackler at Standford. I went to UCLA, I went to other ENT's locally including Dr Ian Purcell in Oceancide CA who is a famous doctor too. I told him how no psychiatrist can help me as I have already gone to the famous psychiatric cline (AMEN CLINIC). Dr Hrayr is doing a thorough examination of my situation as he knows my case for many years.
He has since ordered an MRA. I had that done last week. He is going to go over the results of that and give me his final answer in 3 weeks or so. He also prescribed something called diamox (250mg twice daily). I have not really started it yet.
I got the results for the MRA already from the radiology dept. And it shows that everything is fine. I have good pulsating flow and they do see the 1.6cm cyst. But the radiologist has written that everything is awesome. Nothing wrong. And here I am so sick. I am 5'11" 170 lbs. There should be nothing wrong with me. My brother is a former airborne ranger. He can run 5 miles in under 30 minutes. My dads brothers were high ranking officers in the military. My grandfather was shot in Italy as he fought the Nazi in WWII. My dad is a BULL and a very hard working business man. No one has mental illness, vertigo, head pressure, headache, vision problems in my family. I don't know of anyone. And before I became ill I was pretty healthy and athletic.
Now I feel very sad because in my heart I believe the arachnoid cyst in the midline posterior fossa is responsible for my symptoms as it is sitting right next to the brain stem, the cerebellum, and important cranial nerves. Yes the size may not be malignant. But the location is very malignant. Thus I think this justifies surgical intervention.
As for the diamox, I took 1 pill yesterday and it made me sicker. I am still recovering. But I will wait 2 days or so and try taking it again as I want to be 100% sure that it is not working because it is very important that I give it a chance. But if it makes me sick again, I will not take it.
Meanwhile I am on 2.5-3.00 mg of ativan daily (lorazepam) and I take 1200mg of Gabapentin and 50mg of Zoloft.
Other than that, my future is in the hands of Dr. Shahinian. I hope he will understand how my life is just being wasted away.
I know this is an open forum. I don't care I want people to know how much I have suffered.
I prayed and prayed. God is my witness I am a LION in my heart I know it and I wont ever quit. But 10 years of torture. Even after being on all these medications I am still sick and unable to function. As I type this pressure is building in my head. It's hard to even read sometimes.
I pray that if this is God's will then I will carry this to the grave without ever complaining to him. It is very hard to understand why after seeing so many doctors (probably over 100) that noone has really been able to help. This has scarred my soul. My family is also suffering because of this. I have to have them do things for me as I can not leave my house or drive a car. I am right now, having a hard time even sitting in the car and traveling a couple of miles because I get such horrible head pressure and dizziness when I am stimulated.
I have been very ill in the last 6 months. 2 years ago I had an MRI which did not show the arachnoid cyst. Now there is one in my head. And the last 6 months I have been sicker than ever. It makes sense logically that the arachnoid cyst is responsible for all of this. I hope some surgeon reads this too. And offers to help. Otherwise I don't see a future for myself.
July 27, 2012 - 5:52pmThis Comment
Hi,
Thank you for writing. I am so sorry for all you have been through and live with. What a nightmare! I can relate in so many ways. And yes, I do think you ought to get my book...."It's all in Your Head," Maria McCutchen. You will be able to relate to some of what I write, and believe me.....there is a lot more that I went through that I didn't write about. No need to write about every little thing....but I did....I went through a lot, starting with trying to find a doctor to listen to me, believe me, and treat me.
To me....just a layman living with a brain cyst and more....but it does sound like your cyst is responsible. The dizziness is a very common problem with brain cysts, and I too suffered with balance problems and just feeling off balance. Very similar to what you describe. My quality of life was quickly fading and I was becoming housebound....unable to drive etc. Couldn't think clear, couldn't concentrate, remember. It was awful. Normal everyday functions were getting very difficult, including driving, grocery shopping, everything! I essentially became housebound too. What I discovered was that when I would lay down, the brain stem was getting squished. More pressure on it. Squished to the point where I would get numbness in all my extremities from pressure on the brain stem. I started sleeping more - upright....on lots of pillows. I organzied them so they were a gradual incline behind me. Not just a "stack" of pillows, and this seemed to help to get the pressure off the brain stem. Maybe you can try it. Not sure that it will off relief for "you" or maybe a little relief. But worth a shot.
Anyways, don't give up. You can think about contacting my surgeon in Phoenix....Dr. Robert Spetzler. He's a world renowned surgeon and for about $100.00, I sent him a copy of my MRI and he reviewed it. He determined I needed brain surgery, especially due to the fact that my cyst had developed walls inside of it, known as a multi-septated cyst. These walls, like a honeycomb, get CSF trapped behind them and the fluid is then unable to get back out. The cyst then grows and puts pressure on vital organs.
Anyways, if you want to look into Dr. Spetzler, that's something to consider. I was going downhill quickly and thought I was on my way out of the world when I was told about him. Also, look into my book, "It's all in Your Head." You may find similarities, give you ideas of what to do with and for yourself, or just get a sense of not beling alone with this terrible medical condition.
Please keep me updated. I hate to hear of others going through similar things I went through because I know how debilitating it is. But please....try to keep your chin up and don't give up. I had to keep pushing and pursuing help. No one would listen or believe me.....only my family and myself, and I kept trying to find answers.
Please keep me informed. If you do decide to contact Dr. Spetzler, let me know what you find out. If you need me to send you his number and address....I will.
God bless and take care. You are in my prayers.
Maria
July 28, 2012 - 6:28amThis Comment
Hi I have a arachnoid cyst. I get pretty dizzy from it. It is on the back of my head. I can't even think straight. The doctors told me to be very careful cause if I hit my head really hard I'll die. I'm only fifteen why do I have a bad life so far.
March 9, 2015 - 8:33amThis Comment
Hi my name is Jess, I'm 19 years old, and I live in Australia. I had a scan done on my head recently for an injury to my face, and they incidentally found a cyst on the left side of my posterior fossa, 1.2cm, they think its an epidermoid cyst. I've noticed that this forum is about arachnoid cysts but I don't know where else to go on the internet to talk about this..there is hardly anything on the internet about brain cysts? And I'm sure the two kinds of cysts are similar, seeing as the symptoms seem to be the same. Over time I've developed trailing vision, headaches at the back of my head, I've now got a stutter when i talk, I have alot of trouble walking normally, and I have trouble looping sentences together; I can't even think straight anymore...I've read all the comments on here by the way...The hospitals aren't helping me either. They are supposed to contact me for my mri and they haven't and have lost my referal or something. They're pretty hopeless! I'm starting to agree they don't seem to take brain cysts seriously...Also there is a nurse strike on at the moment that might be causing the bad service...All I know is I'm scared, I want help, and I don't seem to be getting any. I'm here on the internet, on this website tonight, because I don't want to just sit here not doing anything about it. One thing I would really like is to at least know everything I can about what's going on in my brain. I want to know more about brain cysts and brain surgery. I'm also writing here to vent, and to try to connect with other people who are going through the same thing...but I mostly really need help with finding information. This is the first forum I have found. Can anybody help me? Perhaps refer me to a good website? Thank you, and thank you for reading.
-Jess
December 7, 2011 - 5:14amPS. I hope yous are all going okay. I feel your pain, I really do.
This Comment
Hi Jess,
I sure am sorry for what you are going through. I can identify with quite a bit that you are saying. There isn't a whole lot out there on brain cysts. When I was diagnosed in '04, I couldn't find anything. I started this forum months and months ago, on brain cysts. I got on here, Empowher and decided that I wanted people to be able to connect about brain cysts.
I also wrote my story...my memoir about what I went through with my brain cyst, called "It's all in Your Head." I got the same type treatment with my condition, as it sounds like that you are. I was made to feel like a hypochondriac, I was a stressed out mom and woman, all kinds of things. Meanwhile, my cyst grew and grew and is now at least a 1/3 the size of my brain. It takes up the entire back part of my brain and wraps around to the right. I lived with a lot of neurological symptoms that they ignored. I finally found a doctor, Dr. Robert Spetzler in Phoenix, AZ who understood these cysts and operated. He fenestrated my cyst (knocked down all the walls that had built up inside) where the fluid gets behind them and can't get out. Brain cysts are notorious for building walls. You may want to ask if your cyst has walls, or is multi-septated. That's the term.
I wound up having to have a shunt put in, and the doctor who followed (or didn't follow) my shunt, allowed it to overdrain to the point where I wound up with my brain sagging and a chiari malformation....where the brainstem herniates into the spine. Lots of issues. I still live with all these conditions.
I don't know what I would do in your situation, being you aren't from the US. If you can come here to see someone...I would highly recommend Dr. Spetzler, or one of his colleagues at Barrow's Neurological Center in Phoenix. They are very caring, understanding of the brain and cysts, and knowledgeable.
Feel free to contact me, and look into my book if you get the chance, "It's all in Your Head," Maria McCutchen...on Amazon or through Barnes and Noble. Maybe it will help you...inspire you, or you find you can identify with my story.
Good luck to you. And don't give up. Keep searching for that doctor that understands brain cysts. Also....keep record of your symptoms. That was huge for me to show a pattern with symptoms, etc. Write them down or type them, but keep daily record of what's going on. It will show changes as well, to give doctors a better idea of what is happening.
Contact me anytime-
December 7, 2011 - 5:56amGood luck,
Maria
This Comment
Thank you for your time taken reading and replying to my message
I'm not sure if I can travel to America, but I'm sure I'll find help here if I look around...yeah it hasn't gone very well so far, but I'll use that good idea of yours and write down all my symptoms, hopefully gather some more of this information in regards to my options, and go looking for a doctor that will help me.
there's got to be one somewhere..i hope !
It's really bad news that you're suffering, but you are getting through it all at least. You must be a strong person.
And you know what, the knowledge of your ability to get through it all gives me a good feeling I might be able to get through it all, too :) I'm already inspired, I'd love to read your whole story, I'll look for your book on Amazon.
I'm glad you made this forum, it's really helpful and has made me feel like I'm not alone anymore.
I guess I'll keep posting on here about my progress :)
And if I need any information, I now have somewhere to look :)
Thank you.
I wish you luck with your situation, as well.
I hope everything goes okay for everyone on this site!
-Jess
December 7, 2011 - 8:16amThis Comment