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05-20-2009, 01:20 AM | #11 | ||
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Hello I am fastly approaching my two year ann. of my brain surgery for a rathke cleft cyst / vp shunt placement.....I am writing to see if i'm not alone. Sooooo glad to find others with symptoms and pains as I have. My head at the moment is very sore and swollen i mean like baseball size right beside my shunt.....I have had shunt series over a month ago and routine mri and cat's. I am beside myself!!! I am tired of complaining and having to call the dr. and drive an hour and a half one way to see my neurosurg. the pains in the stomach they tell me i'm just sensative and feeling the tube. The chest pains like stabbing pains are just pains from your body adjusting to the tube as well as the neck pain. I have been having headaches for as long as i can remember. I am about to turn 25 and i feel like i am 100. Has anyone else's head swollen and became very sore especially lifting your eyebrows? Is this normal or should i be concerned? Please help I'm at my wits end with this. Its nice to talk with people who understand and share stories......PLEASE HELP!!!!!
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"Thanks for this!" says: | jlane24 (03-04-2011) |
06-04-2009, 10:39 AM | #12 | ||
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I had a vp shunt placed in January of 09 and have had horrible abdominal pain since. I had an x-ray last week of my tummy and it seems the tubing is all the way in my pelvis. Its hard to tell whether it has broken off or just migrated. The pain is unbarable. Im having an exploratory surgery done June 17th and my neurosurgeon said he will most likely change the location of the tubing to the plural cavity..Does anyone know anything about this? Im worried I will have the same pain but near my lung. My memory is awful since surgery. I get embarassed because I forget what Im saying in the middle of a sentence or forget simple things. I hope this goes aay!1 I am thankful that I don't have a splitting headache for the first time in 16 years!!!!
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06-04-2009, 11:11 AM | #13 | ||
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08-21-2009, 10:19 AM | #14 | ||
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I two know how you feel I had a VP shunt placed in 2004 and have had all the same problems hurting shunt hurting pains in the stomach head ache for days even weeks seizures memory loss concentration problems. Its just something that we all have to deal with having this illness as well as many others illnesses it just something that we have to deal with. I have lost my privlage to drive, lost my job due to all of this on so many medications to control the seizure which make daily life so hard some days but with out them just come more seizures there are some days i just wish that they would take out this stupid shunt then i remember what life was like without it it was so much worse i could not even get out of bed now at least i can on most days with a limited head aches gets worse as time goes on so just hang in there it does get easier as you learn more
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08-21-2009, 05:13 PM | #15 | ||
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Thanks for writing....I am sorry you too are going threw all this as well. Hope you feel better and it gets better for you! Have a great weekend-
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08-24-2009, 02:29 AM | #16 | ||
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08-29-2009, 04:25 PM | #17 | ||
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08-30-2009, 03:23 PM | #18 | ||
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Hello there!
I am soo sorry to hear of ALL that you went through...yes having a shunt is REALLY something to get used to. When I first got mine in I too had ALL thoses abdominal symptoms-I had ALL kinds of tests...no one found ANYTHING wrong or out of place with me...So all I could do was to put up with it...Then after a while of NOt lifting anything to even a clothes basket...The pain went away...But anytime I would lift something or move something those pains would come back- After about 6 months of that & 6 months of COMPLETELY taking it easy-the abdominal pains ALL went away then the headaches started instead. Since then I have been getting such bad headaches with fevers & chills that it is COMPLETELY Unbareable and usually I end up in the ER. I have been hospitalized for them thinking that I too got meningetis-But it was all negative. Since it has now been over a year that I have had my 1st vpshunt put in- I am still VERY sick My fluids in my brain are fixed because of the shunt and all that is now better but, I just am not right. Day by day...I have NO idea if I will get those headaches & fevers again-when it comes its comes just out of the blue and hits me like a truck. then I'm down for usually 6 hours-Then I'm fine-Its quite strange. Within the last 4 days I have called and made that appointment for me to FINALLY get my cyst (of the third ventricle) taken out-My opperation will be Sept 22nd of this year-I am sooooooo scared I just cant handel it-Im scared that My symptoms will not get better and that maybe I will just get worse? I know I have the Best surgen operating on me at the Cleveland Clinic but STILL, I am just flippin out & so VERY scared that It will NOT all work out for me-Maybe its because I have been sick for soooo long? Anyways PLEASE PRAY FOR ME to make it let alone make it out perfectly so I would not then need a shunt put back into me. As for you-I am REALLY sorry for all the problems you have had, I too went blind because of all the pressure on my optic nerve-& thankGod it has came back! I think that you should try to get some disability help... I know, I NEVER wanted to go that way myself but what can you do when we feel the way we feel when it comes to this sickness? I think you will get better because these shunts just take alot of time to get used to and for our bodies to get used to. I still have to take vicodin and all that when I am in pain- But BELIEVE me, after a while you WILL NOT need to constantly be taking those pills.I worried about that too-Becoming a pill head and all- and ThankGod I eventually got off of them and now ONLY take when needed and when I think about it , its NOT very often at all. Maybe I find myself taking the pain pills like once every 3 weeks if that? When ever It get REALLY bad. I guess all i want to say about this is that you & your body WILL get used to all this it just takes some time. I promise Please let me know if you are feeling any better? thanks for writing have a beautiful day! Quote:
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10-11-2009, 06:53 PM | #19 | ||
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I know that it is horrible to title a thread "Thank God" when so many of us are suffering, but it is such a relief to know that I am not crazy. After living with Pseudotumor Cerebri for 3 years, getting to a point of it leveling out, and now having it come back for the past year+ with a vengeance I finally decided to pursue with a VP shunt. I can't tell you what relief I got in my head and for that I am thankful. I keep those of you who have not got that relief in my prayers. However, since I woke up post op, I have had a horrible sharp pain in my pelvis that does not subside. I called my neurosurgeon whose nurse told me that the small tube could not possibly cause me any pain. I needed to go to my primary care provider (PCP) or to the ER. So I did. My PCP ran test upon test and ruled out everything from ovarian cyst to appendicitis. I finally got my family to help me sit up and google this pain on my own. Here comes the "Thank God." Thank God I found you all who have been so brave and helpful to share what you are going through. I read your stories and felt so much peace among the pain. I read and found that I, like miche27bbd, feel like I traded one pain for another but at the same time I realized that this is a real pain and I am not making it up!!! I had to say thank you all for sharing your stories and for helping me believe in myself and trust my body and what it is telling me.
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09-06-2010, 12:10 PM | #20 | ||
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I read your story when googling pain in shunt.I quickly joined the site because I couldnt believe what I was reading.My story is almost identical to yours.I was 29 when I had my first shunt put in tho.
Prior to the last week of April I was on top of the world.I had finally made it in my career(hairstylist) was newlywed (2weeks) and so fulll of life. I was at work and dropped a mirror because my hand just let go of it when I was showing a customer her hair.The next day I had the day off work.My husband and I had plans to have dinner with friends and I was feeling horrible.My head felt like somone was drilling into it.My body ws jerking and having spasms.We went out to dinner anyway and I was just irritated and trying to keep my best face on.We went to the mall after and my hands and feet were pouring out water.I was disorientated and walked into glass door I coulnt figure out why. After that we went and got a coffee and the pain in my arms and legs was geting worse.My right leg was actually moving up and down.The next day we though somethings really wrong.I was so sick we thought maybe I was pregnant.Not that we would know what thats like but I just knew something was really wrong.We went to ER and well my life has neer been the same. I was told the shunt would make everything better and I would fully recover in no time.......Ya right. I was very determined and went back to work shaved head and all 3 weeeks after surgery.I only lasted a couple weeks and have been bouncing off and on disablilty ever since...Recently had to apply for SS. Since my surgery I have had a ton of medical problems.I still get horrible headaches daily.I have pain attacks in my arms and legs back and hip.They have diagnosed me with fibromyalgia and Hydrocephalus.At first they said I had pseudotumor cerebri.Now I get mixed and confusing reports from doctor they are all over the place . They say its fibromyalgia but that same pain is part of the reason we went to ER in the first place.I dont know what to do anymore.The doctors tell me they dont know what caused hydro or anything else.The doctors also say my case is so rare....After reading your post I guess its not so rare. Im really concerned right now thats what brought me here is that my neck near my tubing is killing me.I have tried pain medication and muscle relaxers ,ice and heat.Nothing is helkping...... Quote:
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