Originally Posted by jen623

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!!!!!

Originally Posted by Phnxsjen

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

Originally Posted by glittergirl

Hello everyone
I am new on here and sooooooooo Happy to of found this site. I have had a vpshunt put in on Aug of 2008. it has been about 6 months since I have had this shunt and dont get me wrong , my pressure problem is all gone BUT, I have had soooo many problems since surgery. It took me a long time to recover for I had sooo much pressure in my head that it was the most my Brain Surgen has EVER seen! NO wonder why I was REALLY sick for 4 years- I lost a little bit of my vision ( well its not the same) because of all the pressure on my optic nerve. It's only been 6 months almost 7 and I feel that I am FINALLY getting back to normal, EXCEPT of all the HORRIBLE odd pains I have been having since surgery. It started about 2 months after surgery...I started to get this HORRIBLE MOST HORRIBLE abdominal pain- I have been threw EVERY test MRI/Cat Scan- ETC. and NO ONE found any problem with me or my shunt. So ok...what do I do? It got sooo bad at times I could'nt even walk-everyone said it was NOT from my shunt blah blah blah...I found this site yesterday and read atleast 5 stories of people that has had the SAME abdominal pain and EVERYTHING just like me....OMG Thankyou I'm not crazy-LOL.
So time has gone by and I have had that belly pain happen atleast 6 different times to me and the longest that it lasted was from the 28th of December all the way to the 1st of February (this year) yeah, HORRIBLE then for 4 days I was great then out of the clear blue I felt like I was hit by a bus, and got this most HORRIBLE headache that I have EVER had- and believe me I have had CONSTANT headaches REALLY bad headaches for over 4 years straight! This one was almost the worst of them all! I ended up with some neck pain and a temp of 101. I went into the hospital about 3 days later-(cause you know how you hope it will just go away) well it didnt, it actually got worse I went back into the hospital cause the first time they just thought it was a bad sinus problem- (yeah, I DONT have or EVER had sinus problems)but whatever...and the second time they thought -well didnt know what to think-they called my brain surgen and the next day I was to go get a shunt tap- so I did . It was crystal clear!!! but, I got a phonecall at 8am the next morning saying that my shunt is infected and I needed to go in and talk with the Dr. > OMG I cried for 2 days for I am STILL recovering how can this be? My hair is just starting to grow out etc I thought I was out of the "infection period". ??? Anyways, I was in the hospital for 4 days they did test after test took all kinds of blood /catscan/MRI/ and so on....Here, NOTHING grew in my blood cultures or anything I stopped having a temp and just started to feel great..They said that my spinal fluid must have just had some bacteria on it from the skin or something? And I still had a bit of the neck pain with the headache but NOTHING like I had felt that week. I REALLY felt wonderful! So I got sent home on Valentines Day morning- I actually got cleaned up and went out for the whole day I felt so good! I even got engaged that night but anyways, a whole week went by and all was the best I have EVER felt since ,well, since I'd say I felt in 5 years...Then the beginning of this week I woke up and was like oh no...and the hardcore headache was back with the temp and neck pain! so I went into the hospital again the next day...Of course when it came to my temp it was normal(Thankgod) they took my blood and that was it! they said my blood was fine- my white blood cells a little up (just like before) nothing changed. so NO signs of infection or anything so they sent me home. It has been going on 5 maybe 6 days now and the headache are still here with body aches (Flu feeling) with no temp. I go into my Brain surgens office this Thursday-I am sure he's going to want to do another brain tap Ok...so, I dont understand? I thought I was going to feel better and FINALLY back to normal and live a great healthy life??? Why have I been having sooo many problems since this shunt has been put in me? This is NO WAY to live a life!!! I am sooo mad and sooooo frusterated that i dont know what to do! I am sooo scared to have to go threw "another" surgery and all that. I have read that ALOT of you have had more than one surgery- Why? wasnt this sapossed to make us all better? That is what I was told and there would be NO LIMITATIONS! Has ANY body else out there still having headaches? Is there anyone out there with a good story after getting your shunt? PLEASE write to me for I am soooo worried that my life will be like this forever- Will it? or is it just because my shunt is sooo new??? I cant take it and its REALLY taking a tool on my fiancee and the people around me but especially me...I am getting REALLY depressed- I am only 36 years old and am planning a wedding and a family someday soon but how can you plan anything when you never know how you'll be feeling? aHHH I REALLY NEED PRAYERS! ALL I WANT IS TO FEEL BETTER for longer than a couple of days...PLEASE write and tell me your stories even if they ar bad ones. I am glad to of found people who are going threw what I am and feel what I feel Please send me your stories-I Thankyou*

Originally Posted by DPD235

I was 29 yrs old when I was diagnosed with Chairi Malformation. I had the decompression surgery for this on July 9th 2008, to relieve chronic headaches, blurred vision, loss of hearing in left ear, and mild blackouts. Surgery was successful and I was recovering faster than expected, when on Aug. 30th 2008, I became extremely ill and was rushed back to the hospital with to diagnoses, (pseudo tumor cerebra, and spinal meningitis). None of my doctors could confirm either condition, and due to the large amount of CSF fluid building around my brain, my neurosurgeon placed a Lumbar shunt in my back to relieve the pressure. He stated he did not believe I had developed hydrocephalus due to my ventricles,(fluid chambers), not being enlarged. It took me a long time to recover from this surgery due to the increased pressure my brain put on my optic nerve, causing my eyes to be crossed so bad they did not expect them to return to normal and leaving me with extreme double vision. A few months later my normal vision was restored, but the lumbar shunt only drained while I was standing, making it impossible to sleep. This led to the removal of the lumbar shunt and insertion of a ventriculoperitoneal shunt on Oct.1st 2008. This seemed to be the answer, and was working fine except for the intense lower abdominal/pelvic pain. I woke up in the recovery room with this pain and was told it would go away in time. Well like many of yawls posts I’ve read, this is where I started to feel like I was crazy! About a hundred tests, CT scans, MRI scans, ER trips with multiple DR’s later, I was told by my neurosurgeon that he could no longer help me and I was going to have to live with the pain. This led my wife to find me a new neurosurgeon, and on Feb.4th 2009 I had a shunt revision to place the tubing in another location in my abdomen, with no improvement. This led to yet another shunt revision on March 4th 2009, this time changing it to a ventriculopleural shunt. It was amazing that as soon as I woke up from this surgery I had no more abdominal pain. Since then I have had off and on sharp stabbing pains in my right side chest cavity, and now I am having intense headaches/migraines behind my right eye, and what I believe is directly under the shunt pump in my head; also causing slight double vision when migraine is at its worst, and severe sleep ad mea! My Neurologist has only tried to treat these symptoms with sleep aids, and pain pills, which do not really help much, and time for my body to adjust to the shunt. I guess my question to you ‘all is what do I do now? Am I supposed to live on pain pills and sleep aids for the rest of my life? How much time does my body need, and if it is adjusting why are my symptoms getting worse? I am a Police Officer and am finding it extremely hard to do my job with these symptoms! I have not contacted my neurosurgeon since last shunt revision for fear of having to have another surgery, and possible losing my job! I would greatly appreciate any help or advice in this for I believe I’m at a standstill! Thanks in Advance!!

Originally Posted by DPD235

I was 29 yrs old when I was diagnosed with Chairi Malformation. I had the decompression surgery for this on July 9th 2008, to relieve chronic headaches, blurred vision, loss of hearing in left ear, and mild blackouts. Surgery was successful and I was recovering faster than expected, when on Aug. 30th 2008, I became extremely ill and was rushed back to the hospital with to diagnoses, (pseudo tumor cerebra, and spinal meningitis). None of my doctors could confirm either condition, and due to the large amount of CSF fluid building around my brain, my neurosurgeon placed a Lumbar shunt in my back to relieve the pressure. He stated he did not believe I had developed hydrocephalus due to my ventricles,(fluid chambers), not being enlarged. It took me a long time to recover from this surgery due to the increased pressure my brain put on my optic nerve, causing my eyes to be crossed so bad they did not expect them to return to normal and leaving me with extreme double vision. A few months later my normal vision was restored, but the lumbar shunt only drained while I was standing, making it impossible to sleep. This led to the removal of the lumbar shunt and insertion of a ventriculoperitoneal shunt on Oct.1st 2008. This seemed to be the answer, and was working fine except for the intense lower abdominal/pelvic pain. I woke up in the recovery room with this pain and was told it would go away in time. Well like many of yawls posts I’ve read, this is where I started to feel like I was crazy! About a hundred tests, CT scans, MRI scans, ER trips with multiple DR’s later, I was told by my neurosurgeon that he could no longer help me and I was going to have to live with the pain. This led my wife to find me a new neurosurgeon, and on Feb.4th 2009 I had a shunt revision to place the tubing in another location in my abdomen, with no improvement. This led to yet another shunt revision on March 4th 2009, this time changing it to a ventriculopleural shunt. It was amazing that as soon as I woke up from this surgery I had no more abdominal pain. Since then I have had off and on sharp stabbing pains in my right side chest cavity, and now I am having intense headaches/migraines behind my right eye, and what I believe is directly under the shunt pump in my head; also causing slight double vision when migraine is at its worst, and severe sleep ad mea! My Neurologist has only tried to treat these symptoms with sleep aids, and pain pills, which do not really help much, and time for my body to adjust to the shunt. I guess my question to you ‘all is what do I do now? Am I supposed to live on pain pills and sleep aids for the rest of my life? How much time does my body need, and if it is adjusting why are my symptoms getting worse? I am a Police Officer and am finding it extremely hard to do my job with these symptoms! I have not contacted my neurosurgeon since last shunt revision for fear of having to have another surgery, and possible losing my job! I would greatly appreciate any help or advice in this for I believe I’m at a standstill! Thanks in Advance!!

Originally Posted by DPD235

I was 29 yrs old when I was diagnosed with Chairi Malformation. I had the decompression surgery for this on July 9th 2008, to relieve chronic headaches, blurred vision, loss of hearing in left ear, and mild blackouts. Surgery was successful and I was recovering faster than expected, when on Aug. 30th 2008, I became extremely ill and was rushed back to the hospital with to diagnoses, (pseudo tumor cerebra, and spinal meningitis). None of my doctors could confirm either condition, and due to the large amount of CSF fluid building around my brain, my neurosurgeon placed a Lumbar shunt in my back to relieve the pressure. He stated he did not believe I had developed hydrocephalus due to my ventricles,(fluid chambers), not being enlarged. It took me a long time to recover from this surgery due to the increased pressure my brain put on my optic nerve, causing my eyes to be crossed so bad they did not expect them to return to normal and leaving me with extreme double vision. A few months later my normal vision was restored, but the lumbar shunt only drained while I was standing, making it impossible to sleep. This led to the removal of the lumbar shunt and insertion of a ventriculoperitoneal shunt on Oct.1st 2008. This seemed to be the answer, and was working fine except for the intense lower abdominal/pelvic pain. I woke up in the recovery room with this pain and was told it would go away in time. Well like many of yawls posts I’ve read, this is where I started to feel like I was crazy! About a hundred tests, CT scans, MRI scans, ER trips with multiple DR’s later, I was told by my neurosurgeon that he could no longer help me and I was going to have to live with the pain. This led my wife to find me a new neurosurgeon, and on Feb.4th 2009 I had a shunt revision to place the tubing in another location in my abdomen, with no improvement. This led to yet another shunt revision on March 4th 2009, this time changing it to a ventriculopleural shunt. It was amazing that as soon as I woke up from this surgery I had no more abdominal pain. Since then I have had off and on sharp stabbing pains in my right side chest cavity, and now I am having intense headaches/migraines behind my right eye, and what I believe is directly under the shunt pump in my head; also causing slight double vision when migraine is at its worst, and severe sleep ad mea! My Neurologist has only tried to treat these symptoms with sleep aids, and pain pills, which do not really help much, and time for my body to adjust to the shunt. I guess my question to you ‘all is what do I do now? Am I supposed to live on pain pills and sleep aids for the rest of my life? How much time does my body need, and if it is adjusting why are my symptoms getting worse? I am a Police Officer and am finding it extremely hard to do my job with these symptoms! I have not contacted my neurosurgeon since last shunt revision for fear of having to have another surgery, and possible losing my job! I would greatly appreciate any help or advice in this for I believe I’m at a standstill! Thanks in Advance!!