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arachnoid cyst on brain stem

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Unread 02-04-2010, 05:57 PM   #1
stranged
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Default arachnoid cyst on brain stem

Just found this site and im greatful for all the useful information.My story is this.For ten years I had migrains,dizzyness,walking gait problems and occasionally some speech problems. Saw my Dr. on several occasions with my list of systems always the same answer he thought it might be menstal. Finally got a mri and it showed a cyst on my brain stem at the time I was 37 after years of now realizing the learning disablies rages headaches we found the problem. After the diagnoises for the arachnoid cyst I went in 2 weeks later for a shunt. I have has numerous problems since. I have pain throbbing in the back of my head in the exact area of my shunt. Dr. put me on seizure meds which helps my pain. I still have all the symptoms I had before. I get MRI,s every year in see if it has grown of festered. Dr. says the tubing has calcified on fluid is not flowing like it should be. Since my operation my nero doctor has moved out of state and I am having problems finding a doctor with his knowledge on my cyst. I flew on a airplane once for vacation but realized after that when my head felt like it was going to explode I cant fly because of the pressure,I love to fly to Ca to see my Dr. that operated on me beacuse I have so many questions regarding what im up againist for the rest of my life. I hear that some people have in revisit the shunt my memory isnt that good but I dont ever remember him saying I would have to do this again. If anyone has this situation or any awswers on this I would appreciate it. My shunt has been in for 9 years now. Thanks for all you reading my story.Diana
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Unread 02-05-2010, 06:56 PM   #2
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Welcome to NT

There's lots of friendly people on here that have dealt with this same condition.

Here is a link to the brain forum:

http://neurotalk.psychcentral.com/forum92.html

9 years... ummm. You're very brave. I'm glad you found this site. You won't be alone here.
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Unread 02-05-2010, 07:52 PM   #3
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Hi Diana, and welcome to NT! We're so glad you found us!

This is such a great place with so many helpful, friendly, and caring people!
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Unread 02-05-2010, 09:42 PM   #4
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Default arachnoid cyst

Hi Diana. My name is Brian and I'm 40 from michigan. I had an arachnoid cyst fenesterated over 3 years ago and 3 months after the surgery it didn't help my hydro so I had a vp shunt installed and have had lots of pressure problems daily that can't be fixed. Adjusting the shunt don't work for me and my ventricles are still very enlarged. I often wonder how I will get through the rest of my life like this. If you need someone to talk to you can talk to me, I also know my neurosurgeon in tampa florida has been doing arachnoid cysts and shunts for over 22 years.
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Unread 02-07-2010, 07:26 AM   #5
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Hi Diana. My name is Brian and I'm 40 from michigan. I had an arachnoid cyst fenesterated over 3 years ago and 3 months after the surgery it didn't help my hydro so I had a vp shunt installed and have had lots of pressure problems daily that can't be fixed. Adjusting the shunt don't work for me and my ventricles are still very enlarged. I often wonder how I will get through the rest of my life like this. If you need someone to talk to you can talk to me, I also know my neurosurgeon in tampa florida has been doing arachnoid cysts and shunts for over 22 years.
Brian, Thanks for your help. It sounds like we have simular problems.I had my surgery 9 years ago have lived a productive live everyday alittle bit of a challange. For years ive been ignoring my problems but just recently im having trouble. I was put on meds 3 years ago for the severe pain I had in the back of my head where on my brain stem the cyst was found(enlarged ventricles) at christmas time I ran out of the meds and experienced nausia vomiting and extreme memory loss. Back on meds now but the feeling I have everday is how long I have before I have to do surgery or will it even help? The pressure in my head is great along with the nervios feeling I have. Somedays I want to fall asleep and never wake up because im so tired of the pressure. My balance moods and constant tiredness affects me everday. I'm sorry that you to feel the same, people dont understand how much this affects us. I look forward to hear from you again and hope that today is a good day for you! Diana
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Unread 02-07-2010, 12:08 PM   #6
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Welcome to NT

I hope you two find relief and some peace in some way.
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Unread 02-07-2010, 12:57 PM   #7
stranged
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[quote=bgus1969;618455]Hi Diana. My name is Brian and I'm 40 from michigan. I had an arachnoid cyst fenesterated over 3 years ago and 3 months after the surgery it didn't help my hydro so I had a vp shunt installed and have had lots of pressure problems daily that can't be fixed. Adjusting the shunt don't work for me and my ventricles are still very enlarged. I often wonder how I will get through the rest of my life like this. If you need someone to talk to you can talk to me, I also know my neurosurgeon in tampa florida has been doing arachnoid cysts and shunts for over 22 years.[/QUOTE Brian, Not sure I posted a response to you in the correct place(new here) I hope you received my message. Thanks for your post. Have a good day! Diana
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Unread 04-04-2010, 09:32 AM   #8
stranged
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Originally Posted by stranged View Post
Just found this site and im greatful for all the useful information.My story is this.For ten years I had migrains,dizzyness,walking gait problems and occasionally some speech problems. Saw my Dr. on several occasions with my list of systems always the same answer he thought it might be menstal. Finally got a mri and it showed a cyst on my brain stem at the time I was 37 after years of now realizing the learning disablies rages headaches we found the problem. After the diagnoises for the arachnoid cyst I went in 2 weeks later for a shunt. I have has numerous problems since. I have pain throbbing in the back of my head in the exact area of my shunt. Dr. put me on seizure meds which helps my pain. I still have all the symptoms I had before. I get MRI,s every year in see if it has grown of festered. Dr. says the tubing has calcified on fluid is not flowing like it should be. Since my operation my nero doctor has moved out of state and I am having problems finding a doctor with his knowledge on my cyst. I flew on a airplane once for vacation but realized after that when my head felt like it was going to explode I cant fly because of the pressure,I love to fly to Ca to see my Dr. that operated on me beacuse I have so many questions regarding what im up againist for the rest of my life. I hear that some people have in revisit the shunt my memory isnt that good but I dont ever remember him saying I would have to do this again. If anyone has this situation or any awswers on this I would appreciate it. My shunt has been in for 9 years now. Thanks for all you reading my story.Diana
Since my last post 2 months ago lots has happened. My CT scan showed no change which I guess is good but still cant figure out why all of a sudden since Feb im so dizzy and lightheaded and have migraines. I've seen my neurologist 2 times and we have changed meds which I'm not crazy about.I did locate the neurosurgeon who did the suboccipital craniotomy back in 2001. He does practice also here in Florida in Titusville so off I go next week with the million questions I have and have had for the last 10 years. All I knew is that back in 2001 I had no choice to get the surgery done, never once giving thought to problems down the road. This is obviously a life long battle that I will have to fight to the end. Diana
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Unread 04-17-2010, 07:23 PM   #9
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Since my last post 2 months ago lots has happened. My CT scan showed no change which I guess is good but still cant figure out why all of a sudden since Feb im so dizzy and lightheaded and have migraines. I've seen my neurologist 2 times and we have changed meds which I'm not crazy about.I did locate the neurosurgeon who did the suboccipital craniotomy back in 2001. He does practice also here in Florida in Titusville so off I go next week with the million questions I have and have had for the last 10 years. All I knew is that back in 2001 I had no choice to get the surgery done, never once giving thought to problems down the road. This is obviously a life long battle that I will have to fight to the end. Diana
Back from my Dr. Wed only to find out I will need another surgery. I'm at ease that he was the one who put the shunt in 9 years ago. I mentioned all the symptoms I was having and the one he was concerned about was the waking up with pressure in my head. Said that was a sign of stagnant fluid while lying down said I should be sleeping at a 30 degree angle so the fluid could drain sounds like a good nights rest to me! Also told me to go off the meds as they are not going to help. So I guess surgery is the answer so off I will go again. Says it wont be to bad but he's not the one on the operating table and the one that has to recover fast so I can go back to work so I can have health insurance. I hope that these posts can help I know they have helped me the past few months thank you all for your time and as my 19 year old son told me today. Yesterday is history Tomorrow is a mystery and Today is a gift that why they call it the Present.
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Unread 05-09-2012, 06:47 AM   #10
kelly2627
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Crazy i need surgey for my anthorid cyst should i

Hello my name is kelly and i have the cyst on my brain stem it is the size of a baseball and the surgon told me i need surgey i need to know if it the right thing i have constant pressure. Pain is so bad i scream i also have contsant black outs everyday. i use to be so fit now im always in pain i have a 5 year old son i cant play with and a husband who has to take care me. Please tell me should i have the surgrey or not i need help figureing this out i have to give him an anwser in 7 days.
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