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Vp shunt 3 years new to group

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Unread 12-27-2012, 11:26 AM   #1
Lizzyonline
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Default Vp shunt 3 years new to group

Hello, I have had a programable vp shunt for almost 3 years. I had severe hydrocephalus that went un-diagnosed for a very long time. It was caused by a low grade brain stem astrocytomoa. I was diagnosed with the tumor 22 years ago. I take keppra xr and vimpat for simple partial seizures. I feel very tired during the day and I tend to be moody and I lose my temper easily. I know those can be side effects of my meds. I have very bad headaches (daily) and pressure behind my eyes. I have trouble bending down and changing positions when I'm laying down. I have had my shunt setting changed many times. I also have neck pain and now I've been having soreness around my scalp where my shunt is. I'm 31 and I'm and active mom and wife. I have 2 young kids. I'm glad I found this group. I'm wondering if there are any other vp shunt people out there?!
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Unread 12-29-2012, 09:05 PM   #2
bgus1969
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Yeah I have one for 6 years now..
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Unread 12-30-2012, 11:02 PM   #3
Lizzyonline
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Originally Posted by bgus1969 View Post
Yeah I have one for 6 years now..
What is your life like post vp?
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Unread 01-13-2013, 03:35 PM   #4
Jenndra
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Default VP shunts 1 month ago not feeling any better

I had a Vp shunt place the month ago after the first 1 failed badly I am still in a lot of pain taking a lot of pain medication and I was wondering if anybody could tell me how long it takes for recovery. I've had enough and want to have the VP shunt taken out but it's eating away at my ear bones the high pressure on my head to my stay in... the doctor wants to pass me off to the pain clinic I feel like I'm just getting passed around and no 1 can tell me when I will start to feel better getting very frustrated...
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Unread 01-13-2013, 11:10 PM   #5
tshazel82
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wow im so happy, not for the fact that you guys are going though so much but that im not alone i have had my shunt put in july about 2 days after surg... my head pain was gone i felt great and it was a long time for me since i felt that way but then right after i have been having so much stomach pain some days it gets so bad i cant do anything but stay in bed an cry no pain meds help and now for the past 4 weeks my head pain is back i have to get a spinal tap twice a week the pressure gets as high as 41 and never anything under 35 i have sean every doc.. at UNM i just saw the medical director and all he can tell me is to deal with the pain and he does not understand why my brain is swelling there is nothing they can do about my IH or tumor but just try to live my rest of my life as could as i can 2 years is what they gave but how can i when im in so much pain but they the shunt is workig.. and im thinkig to my self how is the shunt working if i still have very high pressure sick every day in so much pain they have me on 3,000 mg of dimox which that alone makes me so sick and pain meds and if thats not bad i cant even keep water down.. and my shunt it self hurts.. they look at me like im being a baby and im not in this much pain im 30 years old to young kids an they tell me to deal with it.this is no type of life im not able to be the mom and wife that i want or need to be because im so sick every damn day what are you guys doing for the pain? im so tired if i could i would sleep all day are you guys tired as well? are you guys on dimox?
well i hope you guys nothing but health happiness
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Unread 01-18-2013, 11:53 AM   #6
willyben
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I knew I was Hydro Cephalic since diagnosis at age 9. All I was ever told through life was, don't hit your head. But I was told I would have to try harder to keep up with everyone else. I had a stress ulcer and lost 90% of my stomach during my original hospital stay. Most issues I have ever had came from the stomach issues, and those were all due to scar tissue issues. I was a study case when diagnosed as they did not yet know much or anything of "Onset Hydro Cephalic condition. It was said I must be like a miracle to have survived so long. I only had two brain surgeries at the age of 9. The shunt being put in during my second. Since, I have lived what I think may be an above average life. I won Music, Art, and Photography awards, became a three palmed Eagle Scout, went to college and eventually earned a degree, married a body builder young grandma at age 27 and became an instant PaPa. I went to the Philippines the summer after 9/11. And I have a small but world outreach ministry. We are all different as others have said. I was told of my life expectancy of 30 at age 33 while my wife was losing her battle with Cancer. Point is... I am soon turning 50 in February. No one knows the future. Live life to the fullest possible, considering our individual conditions. Cherish what we have now. And thank God for having each other for all this support. I have been seeking to find you for a long long time now. Thank you again for being here. I am definitely here also for you.
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Unread 02-07-2013, 10:51 PM   #7
Lizzyonline
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Quote:
Originally Posted by Jenndra View Post
I had a Vp shunt place the month ago after the first 1 failed badly I am still in a lot of pain taking a lot of pain medication and I was wondering if anybody could tell me how long it takes for recovery. I've had enough and want to have the VP shunt taken out but it's eating away at my ear bones the high pressure on my head to my stay in... the doctor wants to pass me off to the pain clinic I feel like I'm just getting passed around and no 1 can tell me when I will start to feel better getting very frustrated...

I know exactly how you feel. I have been passed around to so many doctors. My headaches have been so bad lately. I don't know what to do anymore. I can't take pain medicine because it interacts with my seizure medicine. The doctor wants me to try a new med (topamax) which is a preventative migraine medicine. It is supposed to have bad side effects. How has your pain been?
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Unread 02-07-2013, 10:54 PM   #8
Lizzyonline
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Quote:
Originally Posted by willyben View Post
I knew I was Hydro Cephalic since diagnosis at age 9. All I was ever told through life was, don't hit your head. But I was told I would have to try harder to keep up with everyone else. I had a stress ulcer and lost 90% of my stomach during my original hospital stay. Most issues I have ever had came from the stomach issues, and those were all due to scar tissue issues. I was a study case when diagnosed as they did not yet know much or anything of "Onset Hydro Cephalic condition. It was said I must be like a miracle to have survived so long. I only had two brain surgeries at the age of 9. The shunt being put in during my second. Since, I have lived what I think may be an above average life. I won Music, Art, and Photography awards, became a three palmed Eagle Scout, went to college and eventually earned a degree, married a body builder young grandma at age 27 and became an instant PaPa. I went to the Philippines the summer after 9/11. And I have a small but world outreach ministry. We are all different as others have said. I was told of my life expectancy of 30 at age 33 while my wife was losing her battle with Cancer. Point is... I am soon turning 50 in February. No one knows the future. Live life to the fullest possible, considering our individual conditions. Cherish what we have now. And thank God for having each other for all this support. I have been seeking to find you for a long long time now. Thank you again for being here. I am definitely here also for you.

Thank you for your reply. I'm still hanging on.
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Unread 02-07-2013, 10:59 PM   #9
Lizzyonline
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Quote:
Originally Posted by tshazel82 View Post
wow im so happy, not for the fact that you guys are going though so much but that im not alone i have had my shunt put in july about 2 days after surg... my head pain was gone i felt great and it was a long time for me since i felt that way but then right after i have been having so much stomach pain some days it gets so bad i cant do anything but stay in bed an cry no pain meds help and now for the past 4 weeks my head pain is back i have to get a spinal tap twice a week the pressure gets as high as 41 and never anything under 35 i have sean every doc.. at UNM i just saw the medical director and all he can tell me is to deal with the pain and he does not understand why my brain is swelling there is nothing they can do about my IH or tumor but just try to live my rest of my life as could as i can 2 years is what they gave but how can i when im in so much pain but they the shunt is workig.. and im thinkig to my self how is the shunt working if i still have very high pressure sick every day in so much pain they have me on 3,000 mg of dimox which that alone makes me so sick and pain meds and if thats not bad i cant even keep water down.. and my shunt it self hurts.. they look at me like im being a baby and im not in this much pain im 30 years old to young kids an they tell me to deal with it.this is no type of life im not able to be the mom and wife that i want or need to be because im so sick every damn day what are you guys doing for the pain? im so tired if i could i would sleep all day are you guys tired as well? are you guys on dimox?
well i hope you guys nothing but health happiness
I'm so sorry to hear you aren't doing well. I've been having terrible headaches everyday. My doctors don't really know what to do anymore. I've been passed around a lot. How are you doing? I'm sorry. I just this reply. I don't really know how this site works. Hope you are feeling better. Thanks for replying to me.
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Unread 03-06-2013, 06:25 PM   #10
jasontaub23
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I was one of the first people on the planet to have the procedure done.

Quote:
Originally Posted by Lizzyonline View Post
Hello, I have had a programable vp shunt for almost 3 years. I had severe hydrocephalus that went un-diagnosed for a very long time. It was caused by a low grade brain stem astrocytomoa. I was diagnosed with the tumor 22 years ago. I take keppra xr and vimpat for simple partial seizures. I feel very tired during the day and I tend to be moody and I lose my temper easily. I know those can be side effects of my meds. I have very bad headaches (daily) and pressure behind my eyes. I have trouble bending down and changing positions when I'm laying down. I have had my shunt setting changed many times. I also have neck pain and now I've been having soreness around my scalp where my shunt is. I'm 31 and I'm and active mom and wife. I have 2 young kids. I'm glad I found this group. I'm wondering if there are any other vp shunt people out there?!
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