KOK Edit: Your favorite copyeditor since 1984(SM)
KOK Edit: your favorite copyeditor since 1984(SM) KOK Edit: your favorite copyeditor since 1984(SM) Katharine O'Moore Klopf
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Monday, February 09, 2009

Colloid Cyst in the Brain

Things have taken a bit of a soap-opera-like turn in our family.*

Friday, Ed had just arrived to work an evening shift for his part-time job with a grocery-delivery service. (You'll recall that he had to take the job because the economy has messed with the pocketbooks of his potential clients enough that he's getting very few cabinetmaking gigs lately, meaning that we're barely affording our mortgage payments these days.) The truck that he was scheduled to drive that day was different from the ones that he usually drives for the company, so he went to the back of it, while it was being loaded with groceries that he was to take to customers, to check it out.

The mirrors positioned on the back end of the truck were apparently placed lower than what he is used to dealing with, so when he went to pull himself up into the back of the truck, his forehead slammed into one of the mirrors, putting a big gash in his head and knocking him to the ground. He bled profusely and had to go to the local hospital emergency room for stitches.

In the course of making sure that Ed had no internal injuries to his head, the hospital had him undergo computed tomography (CT) scans. The physicians found no internal injuries, so Ed was sent home, having already been stitched up.

The next day, we found a message on our home answering machine for Ed to call a specific nurse at the hospital for follow-up. We thought that she was just checking to see if he'd had any ominous symptoms (you know, dizziness, passing out, etc.) overnight, which is always a concern with any head injury. Ed called back, prepared to say that he was fine but was surprised to see that the blow to his forehead had caused him to have two black eyes. (That was caused by all the blood from his wound dispersing internally.)

The nurse told him that the radiologist, looking at the films from Ed's CT scans, had found a small colloid cyst in Ed's brain and that Ed should call the hospital's neurology department on Monday for an appointment.

We checked out colloid cyst online and found that it's a benign tumor that usually shows up at about the age Ed is—47—if it's going to show up. The part that has us frightened out of our wits is that what we've read seems to say that most of the time, neurologists do brain surgery to remove these cysts because they can grow and block the flow of cerebrospinal fluid, causing swelling and sometimes coma and death.

Ack!

People with these cysts sometimes have symptoms such as headaches, limb weakness, and loss of consciousness. Ed has had none of these. We've discussed the situation, and Ed says that he'd rather just go in for periodic scans and leave the cyst alone until it absolutely must be removed. I'm not happy about the prospect of brain surgery, because despite the many advances that there have been in the field over the years, messing around in the brain can be tricky and can unintentionally cause neurological damage. Plus, there's recuperation time. Both Ed and I are wondering how in hell we would afford for him not to be working while he recuperates from brain surgery. We'd lose our home for sure.

Of course, all of this worrying may be unwarranted; the neurologist might say that the cyst is very small and in a location where it's unlikely to cause problems, making brain surgery unnecessary. Ed's annual physical exam is Wednesday next week, and while he's there, he'll ask his primary care physician to provide him with a referral to a neurologist. Then we'll have to see how soon he can get an appointment with the neurologist.

All of this waiting and not knowing is paralyzing for Ed and for me.

If you've had any personal experience with colloid cysts or a member of your family has, please tell me about it, especially if you or your family member underwent brain surgery.


____________________
*Ed, my husband, gave me his permission to tell you about all of this.



Updated at 11:42 a.m., 2/10/09: Of course! Ed's physician's office calls and leaves a message saying that his 2/18 appointment (originally to be for his annual physical exam) will have to be rescheduled. I promptly get on the phone—because Ed is en route to a client's home where he'll be installing cabinetry—to reschedule the appointment for him. I ask if it's possible to get the required referral to a neurologist before the newly rescheduled 2/27 appointment. Lots of being put on hold while I wait, wait, wait. Finally, the woman gets back on the line and says no, Ed will have to wait until 2/27 to get the referral. I explain that Ed is walking around with a potential time bomb in his brain and that sooner would be best. She puts me on hold again. When she's back on the line once again, still acting as if she really doesn't give a damn, she still says no. More waiting without any information—just what we don't need.


45 comments:

Caryn Sobel said...

God, Katharine, when it rains, it pours...I know these are considered "minor," as if anything is minor in the brain, but I don't know much more else. I think Ed has a good approach to it; it's what I would do.
Let me see what I can find out...praying for your serenity already.

Katharine O'Moore-Klopf said...

Thanks so much, Caryn.

Meg said...

Wow. I'm glad they caught it so they can monitor it. It sounds like your approach is a good one.

And besides the cyst, that sounds like one nasty injury! Poor Ed!

Meg

peaceableimperatrix said...

Yikes! Big hugs to all of you.

Wait and see sounds like a good plan to me (with no experience of colloid cysts). I'm sorry the scheduler at the doctor's office was so unhelpful. That sure doesn't do any good for the situation.

Anonymous said...

I have a colloid cyst that I have been monitoring for several years with no problems. It all depends on the size, symptoms, and density on imaging studies. You might find these links helpful:

http://brain.hastypastry.net/forums/forumdisplay.php?f=120

http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed&cmd=Retrieve&list_uids=10470808

Katharine O'Moore-Klopf said...

Anonymous, you are a dear! Thanks so much for those links.

Sarah said...

I am so sorry...you guys have been through a LOT. Best wishes for a "harmless" cyst...

Funny about Money said...

How frightful! I'm sorry you're having to deal with this at a time that's quite difficult enough.

It may be best to avoid reading articles on the Web--I find googling suspected ailments is one of the best ways to terrify the bejayzus out of myself. Apparently these things are usually left alone unless they become symptomatic. If he isn't having any neurological issues, they'll probably just want to examine him once a year or so.

Hope it all works out...and you find a doctor whose front office staff is capable of treating patients like human beings.

Mary Beth said...

I better not type bad words on your blog. But I am thinking them on your behalf.

and I will be praying.

Katharine O'Moore-Klopf said...

Oh, go right ahead, Mary Beth. Some situations just beg for bad words. Or for #@*^+&!

Joyful Alternative said...

What a blessing that Ed was scheduled to drive a different truck and wound up having his head checked. From the advice you're getting, this cyst reminds me of an abdominal aortic aneurysm that must be checked yearly and if it stays under a certain size, it's fine, but if it's bigger than that size or grows bigger, you must get it taken care of.

Relax. Have the neurosurgeon evaluate it, and go from there.

And are you in some sort of an HMO that requires a referral from your family physician? If not, the hospital people you dealt with would probably make a better referral than your family doc; they know the neurosurgeons, who does what well, etc., and could run interference to get you an earlier appointment.

Katharine O'Moore-Klopf said...

Yep, we're part of an HMO. We're screwed.

Elizabeth said...

Katharine, I found your blog googling "colloid cyst." I was diagnosed with one on the same day as Ed...

My neurosurgeon recommends surgery and I'm inclined to believe him, especially since I do have symptoms, including increasingly excruciating headaches. Best of luck to you and Ed.

Katharine O'Moore-Klopf said...

Elizabeth, I hope that surgery resolves all of your symptoms and goes smoothly.

Jenni said...

Hi Katharine,
Like Ed my first and second Colloid cyst were found by mistake. First one was in 1990, I was 14 yo. At the time it was found the hospital that found it sent me to the Neuro department at Mayo Clinic. I had surgery on Dec 13th 1990 and all of the cyst was removed. 1999 another head CT showed another cyst in the same spot. 10 years later and we are monitoring the second one. If it grows like the first one I suspect that within the next 5 years I will be having my second brain surgery. Not a pleasant thought for my husband. I can understand your husband wanting to watch it, and you looking for information. If I were you I would google Colloid Cyst but stick to places that end with .edu, .gov. Remember to ask to see the scans that were done or are to be done.

Anonymous said...

My daughter is only 23 and she has a colloid cyst with numerous symptoms ranging from seizures, blurry vision, vomiting, etc. They have been monitoring it, but she really needs to have the surgery done. The thought of her dropping dead suddenly is less appealing than having surgery. God will see her through.

Anonymous said...

I had a colloid cyst removed at age 47 and have had very good results. I had the surgery done endoscopically and the recovery period was much reduced from normal open surgery. I was having symptoms of severe headaches, so not having treatment was not really an option.

Anonymous said...

My husband, who is 42, just found out he has a cyst on his brain. He had a cat scan done at the ER and they found it. He woke up one Saturday morning and half of his face was paralyzed, as if he had had a stroke. They diagnosed him with Bell's Palsey, which is supposed to be a temporary condition. I am really scared and am wondering if the Bell's Palsey is in any way connected with the brain cyst.

Katharine O'Moore-Klopf said...

April 21 Anon, I'm not a physician, but it's my understanding that Bell's palsy is not related to brain tumors. It's a temporary condition, possibly related to a virus, that can occur in anyone without warning. Usually, it goes away, but sometimes residual symptoms remain. See this page for more info, and get a consult with a neurologist and a surgeon.

Anonymous said...

Hi Katherine,

I came across your blog about Colloid Cysts whilst I was googling them. I developed double vision about 5 years ago, they were quick discover that I had Hydrocephalus which was caused by the Cyst. I had to have a shunt placed. They did not remove it. I just wanted to reassure you that I lead a full and active life and there is nothing I cannot do despite having a cyst. They will probably never remove it. I hope everything turns out ok for your husband.
Kind Regards,
S

Anonymous said...

Hello my name is Mark and I had a colliod cyst removed one year ago.I'm 53 now. I don't mean to scare you but mine showed up when I went to the doctor complaining of dizzyness and memory loss. Mine had to be removed with a complete craniotomy although I would'nt want to go through it again I guess I came out the other side o.k. My prayers go out to you and Ed.

CareyAnne said...

I recently had a colloid brain cyst removed at Borrow Neuro Hosp in Phoenix. This is absolutely the best place you can go. Mine was removed endoscopically. The only pain I felt afterwards was where the neck muscles were sore from my head being propped up. I am fully recovered- surgery was Jul 20. Back at work after two weeks.
Careyanneyager@gmail.com

Anonymous said...

My 11 year old daughter was diagnosed with a colloid cyst after having excrutiating headaches , loss of vision , speech imapirment and numbness of the left extremities the other day at school. We went for the mri today and are awaiting the results. What a horrible time this will be until we hear back from them....My heart goes out to you and your family

Katharine O'Moore-Klopf said...

A big thank-you to those who have commented recently. I am very happy to tell you that things turned out just fine for Ed:

http://editor-mom.blogspot.com/2009/03/brain-celebration.html

Anonymous of 9/2/09, I hope fervently that all turns out well for your daughter.

hannah said...

I had a colloid cyst of the 3rd ventricle removed in june this year i never had any symptoms previous to this untill 3 days before the surgery.
A week before i fell off my horse and fractured my foot which i thought was bad enough but nothing to what would follow the next week.
I woke as normal and started doing some chores but within a hour the headache i had was unbareable so i took some tablets and went back to bed about an hour later my sister came round and was knocking but i couldnt even get up to answer the door from the pain. I mananged to grab my phone and tell her i needed help so luckily she had a key to get in, as soon as she seen me she called for a ambulance who came and took me straight to hospital where i was examined and sent home with flu!!!!
The following day i woke and remembered nothing about the previous day which scared me but thought well they know best and have sent me home later that afternoon the pain started again and my husband took me back to hospital after waiting 5hours i was seen to be sent home again but to go back in the morning for a head scan if it continues which it did all night.
8am i went to the hospital again with my dad where again i waited 4hours to have the scan but it was done at last the doctor came in and told me i had a tumor in my brain and needed to go to a different hospital for emergency surgery. When arriveing i was rescaned with the neurosurgeon present and told i had a colloid cyst of the 3rd ventricle but it was causing a blockage in the fluid in the brain and my brain was swelling i was taken straight in theatre with my family being told i had between 1 - 6 hours to live without the operation.
I am very lucky it was finally found and am still recovering i have a ommaya tube now inserted into my brain in case it ever comes back again but am still recovering 4 months on my life has changed alot but i am just thankful im still here as im only 30 and have 2 daughters.

Katharine O'Moore-Klopf said...

Hannah, I am also very glad you're still around! Thank you for telling your story.

Anonymous said...

My brother had just turned 60 when one evening he had a terrible headache. It was so bad that he drove himself to the ER. The CT scan showed a colliod cyst blocking the ventricals in his brain. Unfortunately, he had been on a blood thinner for another problem he had been having. They could not do surgery until they thickened his blood because he would have bled out. By the next morning, he was in a coma. He remained in a coma until he passed away six months later. I don't know if you are aware, but there was an article in Reader's Digest this month (October issue, I think) about an 18 year old boy that got a football head injury. At the hospital, they did a CT scan and found a cyst. They did surgery on him and he's absolutely fine. He has a small scar on his forehead, but no damage otherwise. My point is, please seriously consider your options. I wish my brother had been able to have the surgery. He would probably still be with us. My thoughts & prayers are with you & your family!

Stacey said...

I had my colloid cyst removed in April 2006. I was diagnosed on a Thursday and 10 days later I was having brain surgery. I was 35 years old and pretty healthy. I had some headaches, but always attributed it to sinus problems. I had a couple of other neurological symptoms, but again, I didn't think anything about them. I was shocked at the idea of having surgery on my BRAIN! I was having a "craniotomy" which I thought was only a word you heard on "House" or "Grey's Anatomy!" But I did it...it's gone and I'm happy to know that it wasn't my time to go. My recovery went very smoothly and I'm not one year away from finishing my PhD in Autism Research! I figured if I could survive brain surgery I could survive going back to school! Best of luck to your husband!!!

Anonymous said...

Hi, not sure if this is still an active blog. I just stummbled across it and was amazed by the stories. I found out that I had a colloid cyst of the third ventrical in May of 1994 I have yet to have it removed. I didn't know there were so many people out there who had this. I am so glad that so many of you have sucessfully had your cyst removed do any of you have other cyst in your body? I have found that I have them on my kidneys and in my overies. J
and I have trouble with high bloodpressure and don't fit the normal profile courious if they are related.

Anonymous said...

I too had a Colloid cyst, as did my mother. Unfortunately, I had symptoms for ten to fifteen years before someone finally sent me for a CT scan. I was diagnosed for everything from nearsightedness and then farsightedness to migraines, to Anxiety/Depression and given numerous prescriptions, many of which made me ill anyway. Because of the lack of correct diagnoses, I became good at "controlling" the pain with dangerously high doses of Ibuprophen every 4 - 6 hours so that I could go to work and then make the 1.5 hour trek to the rink to skate with a synchronized skating team, especially since no one thought there was anything seriously wrong with me. I thought I was going nuts!!
I must have gone through over a half dozen changes in glasses prescriptions, each one stronger, over the course of around ten years. Still the headaches and vision problems persisted. NO ONE was listening to me!!

Finally, I was referred to a neurologist when every attempt to alleviate my headaches failed and I didn't give up this time. That was when I got my first CT scan. Even my neurologist couldn't believe what he saw since I "walked" into his office with what should have been making me pass out in pain or dead.

Unfortunately, I did not go to Boston for my emergency surgery and didn't have the best neurosurgeon handle my complicated case and subsequently wound up with a brain injury, which left me nearly paralyzed on my left side with no memory for a year and a half and with a seizure disorder.

Because of the length of time that I went mis-/undiagnosed, my hydrocephalus was so bad that I needed bilateral shunts and had close to a dozen surgeries over the course of the next 6 or 7 months.

Fortunately, my mother had a much better neurosurgeon and did not have the same outcome that I had. She also didn't have hydrocephalus as long as I did. She fared much better and only needed one surgery. I tend to think that my case was the exception rather than the rule. I hope I am right.

For anyone who has to go through this, MAKE SURE you go to a see a neurosurgeon who does this kind of surgery often. Get second opinions as to how the procedure will be done. Be informed. I, unfortunately, didn't have the luxury of time to do all of that.

sheila said...

Hi,

I was diagnosed with a colloid cyst 5 months ago. The doctors in IL keep blowing me off, saying there is nothing to worry about. Mine is small, 3mm. If anyone knows a good neuro-surgeon in IL, PLEASE let me know. I am up again at 3am because of an excrutiating headache.

Good luck to your husband, Ed.

Katharine O'Moore-Klopf said...

Sheila, the next time you have a headache like that, please go to the local emergency room. Tell the ER docs about your colloid cyst.

LadyB said...

My daughter has a history of severe migraines. After a terrible bout one night, she began vomiting and continued throughout the night. By early morning, she had a seizure and was brought to the hospital. She had an MRI and when they discovered the colloid cyst, transferred her to the trauma center in another town. They took another MRI with contrast and gave the diagnosis of Colloid Cyst. She is about to have it removed in a few days. They will do an endoscopic procedure to vacuum out the cyst. Hopefully all will go as planned. Thanks to all posting on this site. It was helpful to see those who had successful surgeries.

Anonymous said...

Hi, I was just diagnosed w/ a colloid cyst in the 3rd ventricle of my brain measuring 10mm by 8.64mm by 9mm. I'm not sure if that is big for a cyst on the brain or not. my dr. called me w/ the results and rushed me off the ph. She didn't show any concern, just said to follow up for another MRI in 6 months. I am freaked out!!!! I do not want to wait that long and chance somethin bad happening. I have a lot of symptoms such as tiredness, headaches, double vision, numbness in hands, legs and feet and I ache all over. This has been going on for a while now. I was recently diagnosed w/ Fibromyalgia but I am starting to think that maybe I was misdiagnosed. Can someone please give me some advice on what i should do? I opt for surgery over sudden death!!!! I have a 8 mo old son and I can't imagine not being here for him if something were to happen to me!!! 1 more question - Is the surgery same day surgery?

Anonymous said...

I'm sure technology has changed since 1995, but at that time, my mother was hospitalized with hydrocephalus due to a colloid cyst in the third ventrical. A shunt was inserted in her head to relieve the pressure from backed-up cerebral fluid, and then three months later, a neurosurgeon performed stereotactic aspiration of the cyst. We were told that it was not expected that the cyst would not reinflate during her lifetime. It did - in about two years. She is still alive 15 years later (age 78). She did not have to have open-skull surgery and took anti-convulsive medication for only six months. She has an annual MRI of her brain. While she has many other health concerns, they are not due to her brain cyst. I can tell from what I've read on this website that not everyone has the same experience, but I wanted to share this for those who might be afraid that the colloid cyst has to mean open-skull surgery. By the way, my mother's younger sister also had a colloid cyst, although not in the third ventricle. After having similar symptoms to those of my mother and her sister, as well as the possibility of having had a mini-stroke a few weeks ago at age 52, today I had my first MRI to see if I have a colloid cyst also. I found this website while researching to see what the stats are to show the likelihood of family members have such a cyst when found in another family member. Please share if you've seen those figures.

Anonymous said...

Katherine - My heart goes out to you. We found out May of '09 about the colloid cyst. Was told we had to go every 6 months for check up's. But one check up, it grew. So they said, every 3 months. Luckily, we just went last week for the 3 month, no growth. So back to the every 6 months. Bad thing in my situation..... When you 'google' what the colloid cyst in the brain is about - it usually occurs to people in their 50's - 60's. My son was 11 when we found out. He's 12 now. :o(

Anonymous said...

My son had surgery New years Eve 2009 and has recovered without any problems. I would go to Univ Pittsburgh Dr. Engh asap! God Bless

Anonymous said...

I am 33 years old with a two year old daughter and a four year old son. I have just been diagnosed with a colloid cyst in the third ventricle. I was having bad headaches that were affecting my vision. I saw my physician and he referred me to the opthamologist because my vision was bad (I had never worn glasses) and my headaches were due to my vision. The opthamologist found that I had no periphail vision and made some phone calls and I saw the neurologist the next morning and had the MRI the following day. I am set to see the neurosurgeon next week to discuss options. The neurologist gave me some antiswelling medicine which has reduced my headaches. They are still there, but not as bad. I am now wearing glasses, but cannot drive due to the vision loss from the sides.

Anonymous said...

I had a fairly large coloid cyst removed the Tuesday after Mother's Day.
I'm fortunate to work at a large Educational Medical Center, and to have a father who is an MD there as well. I went into the ER on Monday morning and had the cyst removed Tuesday evening.
As a result of both the surgery and the anesthesia, I have very few personal memories of the events leading up to and just after my surgery. That is the hardest thing for me. My memory is fine now, but I have lost about 1.5 weeks of time with a major life event in the middle!
If I've learned one thing from this, it's that a loving Family has no equal when the chips are down. I have no doubt I owe my life to my wife. Apparently, and it sounds like me, I was just going to try to sleep it off on Monday but she took charge and got me into the Hospital.
Never take Family for Granted!!

Anonymous said...

My husband underwent craniotomy for removal of colloid cyst nearly 1 year ago. It was done in the top hospital of the region done by top surgeons. But ended up with complications anyway. The diagnosis was made after being treated as depression for some time. He was a very intelligent and academic person (with a PhD), now he can not even make a simple decision like whether to wear a jacket in cold weather and is fully dependent on the family.Makes you believe, some times it is just fate.

Rasha said...

I am a single mom and my son 11 years old was diagnosed for colloid cysts one week ago. I feel as if someone shot me in the head not sure what to do or how to go.. i can see so many people in this world is suffering the same. Caryn how is your husband now?
Is all okay .. i am googling and try to read as much as i can to understand and help my son.. PLEASE HELP ME AND TELL ME ..

Katharine O'Moore-Klopf said...

Rasha, I am so sorry that you and your son are going through this.

In my husband's case, it turned out that his colloid cyst is not of any concern because it cannot grow.

Megadyne said...

Wow, that sounds like a nightmare. You will be in my prayers.

Anonymous said...

I was diagnoised with acolloid cyst in march 10 after server headaches n dizziness. It was 3mm, i was told neurosurgen to have yearly ct or mri scans. I got sick in dec n put in hospital, lost 7kg in less then 3wks n heaps of test done. Nothing. Headaches killing me My gp sent me for a ct on xmas eve, its doubled in size. Been back to neuro n neurosurgen again nothing. Now my headaches n dizziness r worse than ever n have bad hands n sharp pain in my arms. Being a single mum of 4, im frustrated that no 1 is listening to me n scared if something happens to me what r my kids going to do without me or if i can't look after them. If anyone has any suggestions please let me know!

Anonymous said...

my 16 teen yr. old daughter was diagnosed on may 5th with a colloid cyst, drs here in scranton did not know anything about this and sent us to geisinger in danvillve pa. are appt was not untill june 14th but the headaches were terrible and vommiting also started, i packed her suitcase we drove about 2hrs and arrived with no appt to there emergency room where i was in formed she needed to have the brain surgery done after about 41\2 hrs. it was done she had very little complications(short term memory loss, confusion, her left foot was turned a little and to say the least a little shaky on her feet. It has been 2 weeks and with the help of the steroids she is doing much better and thanks to Dr.Admir Kersenovitch at geisinger he was great he only did very minable shaving to her head. We were home in two days.

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