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Old 04-21-2002, 10:19 AM   #1
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Location: St. Louis, MO USA
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TheDoc HB User
Unhappy They found a brain cyst

I've had chronic headaches since I was a teenager. My family and doctor's regular response was "Take a couple of Tylenol" which never helped. I have since discovered that there is a history of migraines in my family, which is part of the problem.

However, recently I saw a neurologist because I had blackouts while driving (resulting in accidents) and I developed a tremor, primarily in my left side. As a preventative measure he put me on Dilantin, which seemed to alleviate the tremors, and I haven't had any more blackouts.

The neurologist also ordered an MRI, and discovered that I have a cyst in my brain which is causing the constant headaches. He also said that if it swells, it can cause the blackouts and passing out. Now he wants me to talk to a neurosurgeon and see what they recommend - either doing nothing but keep watch over it; surgery to remove it; or insert a shunt and thread it down my neck and into my stomach. He also put me on Depakote for the headaches.

Oh, and let's add the pinched nerve in my elbow, which may lead to surgery to relocate the nerve.

Frankly, the thought of surgery, especially brain surgery, scares the heck out of me. I don't know what to think at this point. What am I seeking here? I don't know - support, knowledge, help. Also, definitions: What is the difference between a brain cyst and a tumor? Or are the terms interchangeable?

Any advice is appreciated.

TheDoc

 
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Old 04-24-2002, 10:36 AM   #2
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buffy HB User
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Hi!
So Sorry to hear about your brain cyst--and sorry it took so long o be diagnosed. Quite honestly, doctors usually look for the easiest diagnoses first when confronted with someone young (I assume you are pretty young).
My son(at age 21) also had a brain cyst which caused him bad headaches for a long time. He had surgery for it almost 1-1/2 years ago. A cyst is like a balloon inside the ventricle of the brain. It's almost always benign, alost always completely contained, so it can be either punctured and the fluid inside (just cerebrospinal fluid)just flows into the ventricle, or it can be removed, or shunt can be placed in it to allow the fluid to drain. The surgery,while not fun, did solve the pressure problem.It depends on the location of the cyst as to how they'll go about treating it. You'll have a bunch of MRI's and blood tests prior to surgery, so that's a bummer, and you will have one heck of headache for some time after--bu I think the prognosis on this type of surgery is good. It could be whole lot worse---cysts are defnitely peferable to tumors.
Good Luck!
Buffy
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Old 04-24-2002, 12:55 PM   #3
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Thanks for the info and your kind words.

FWIW, I'm 36YO. Most of my doctors in the past would do nothing for the headaches - the most any of them did was put me on Wygesic (an HMO doc from about 10 years ago), which alleviated the pain, but never really investigated as to why I was having them. It wasn't until I developed the tremor and had the blackouts that my current doc (who I'm really not happy with at the moment) referred me to a neurologist, who now wants me to see a neurosurgeon for their opinion.

I can tolerate the Dilantin well, but the Depakote is giving me nausea. I'd much rather he put me on the occasional Wygesic or another painkiller, but I don't want to appear to be a "drug seeker." (I've mentioned this on the Headaches board as well).

As for my official diagnosis it is: Colloid cyst of the 3rd ventricle resulting in mild ventriculomegaly without evidence of trans ependymal migration of cerebral spinal fluid. Also says something about a 1cm mass associated with T1 shortening, and enlarged lateral ventricles. It's all Greek to me...8-)

I've made an appointment with a neurosurgeon, but the earliest they can get me in is May 20. Until then I live with the pain and worrying, unless I can find another who can get me in before then.

Thanks for bearing with me.

The Doc

 
Old 04-26-2002, 10:21 AM   #4
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buffy HB User
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Dear Doc,
You have been a patient and brave person to suffer from headaches for that long!!! It is frustrating to have to wait so long to see specialists, but My 20th isn't too far away. The kid of cyst you have is different from my sons. His was the size of an egg ( a medium sized one, but that's still big!) On his MRIs it showed up as a huge black 'hole' in the left side of what was normal brain tissue. depending on the location of the cyst it can be removed, but I am no doctor so I don't know where yours is (despite your very good description of it!)or whether removing it poses greater hzards than leaving it alone. You are taking anti-seizure medications (Dilantin and Depakote) so I am asuming you have seizures with this? I wish I knew more, but I am only familiar with my own son's situation--although while he was in the ICU after surgery, I learned a lot about the brain and te amazing surgeries that can be performed. I wish you the best of luck--again, it sounds like you are icredibly patient. I hope you can find a doctor who can help you!!
Buffy
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Old 11-02-2007, 03:24 PM   #5
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eugenea HB User
Question Re: They found a brain cyst

Hello,

I understand that I was reading messages 5 years old............
My daughter Eugenia looks that have a brain cyst, she is undertaking the second MIR to determine if exist.........., she has severe headaches since she was a teenager, now she is 38yold. I wander how Doc and Buffy are doing..........?

 
Old 11-02-2007, 03:27 PM   #6
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eugenea HB User
Unhappy Re: They found a brain cyst

Quote:
Originally Posted by TheDoc View Post
I've had chronic headaches since I was a teenager. My family and doctor's regular response was "Take a couple of Tylenol" which never helped. I have since discovered that there is a history of migraines in my family, which is part of the problem.

However, recently I saw a neurologist because I had blackouts while driving (resulting in accidents) and I developed a tremor, primarily in my left side. As a preventative measure he put me on Dilantin, which seemed to alleviate the tremors, and I haven't had any more blackouts.

The neurologist also ordered an MRI, and discovered that I have a cyst in my brain which is causing the constant headaches. He also said that if it swells, it can cause the blackouts and passing out. Now he wants me to talk to a neurosurgeon and see what they recommend - either doing nothing but keep watch over it; surgery to remove it; or insert a shunt and thread it down my neck and into my stomach. He also put me on Depakote for the headaches.

Oh, and let's add the pinched nerve in my elbow, which may lead to surgery to relocate the nerve.

Frankly, the thought of surgery, especially brain surgery, scares the heck out of me. I don't know what to think at this point. What am I seeking here? I don't know - support, knowledge, help. Also, definitions: What is the difference between a brain cyst and a tumor? Or are the terms interchangeable?

Any advice is appreciated.

TheDoc
Hello,

I understand that I was reading messages 5 years old............
My daughter Eugenia looks that have a brain cyst, she is undertaking the second MIR to determine if exist.........., she has severe headaches since she was a teenager, now she is 38yold. I wander how Doc and Buffy are doing..........?
Eugenea

 
Old 11-02-2007, 03:28 PM   #7
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Join Date: Nov 2007
Location: San Antonio, TX, USA
Posts: 3
eugenea HB User
Re: They found a brain cyst

Quote:
Originally Posted by buffy View Post
Hi!
So Sorry to hear about your brain cyst--and sorry it took so long o be diagnosed. Quite honestly, doctors usually look for the easiest diagnoses first when confronted with someone young (I assume you are pretty young).
My son(at age 21) also had a brain cyst which caused him bad headaches for a long time. He had surgery for it almost 1-1/2 years ago. A cyst is like a balloon inside the ventricle of the brain. It's almost always benign, alost always completely contained, so it can be either punctured and the fluid inside (just cerebrospinal fluid)just flows into the ventricle, or it can be removed, or shunt can be placed in it to allow the fluid to drain. The surgery,while not fun, did solve the pressure problem.It depends on the location of the cyst as to how they'll go about treating it. You'll have a bunch of MRI's and blood tests prior to surgery, so that's a bummer, and you will have one heck of headache for some time after--bu I think the prognosis on this type of surgery is good. It could be whole lot worse---cysts are defnitely peferable to tumors.
Good Luck!
Buffy
Hello,

I understand that I was reading messages 5 years old............
My daughter Eugenia looks that have a brain cyst, she is undertaking the second MIR to determine if exist.........., she has severe headaches since she was a teenager, now she is 38yold. I wander how Doc and Buffy are doing..........?
Eugenea

 
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