Thread: Vp shunt= sad
View Single Post
Old 05-16-2012, 01:30 PM
jacquelines *chi* jacquelines *chi* is offline
New Member
 
Join Date: May 2012
Posts: 1
10 yr Member
jacquelines *chi* jacquelines *chi* is offline
New Member
 
Join Date: May 2012
Posts: 1
10 yr Member
Wink WHAT DOESN'T KILL US (SHUNTING) will definitely make us stronger

I too had the same probs.. Psuedo tumor... Got my shunt.. Had probs with the first.. (line was kinked) Had another surg... Ended up with a shunt infection that almost killed me.. Had part of my abdominal muscle removed due to infection.. I also have a nice scar where the had to open me up to clean my organs out.. BEFORE my shunt I only had headaches.. Was told i would only be off work for 2 weeks for the operation.. I almost start laughing every time i think about the promises in the beginning by the neuro surgeon... (BTW You can fire your neuro surgeon.. and get another one. I have a wonderful one now) I have spent the last year trying to walk and talk normal.. I finally can speak normally.. I am currently going thru physical therapy to walk normally.. I did the pain pills for two years, and you know what??? I rather deal with the pain and have complete control of my mind.. I am TAKING my life back no matter what.. We have all been delt a really bad hand in life, by ending up with shunts.. But the headaches do get better.. I rather look at all the past surgeries, and pain i went thru as a "hurdle".. I LIVED thru hell, and i am still alive.. I spent to much of my life recovering, and i will learn to live life to the fullest regardless of my shunt.. I wish everyone the best, and i will keep you in my prayers.. The best advice i can give is teach yourself to fight the pain by doing something you love.. I have noticed, when i am in my flower garden i forget the pain.. When i am looking into my grandsons eyes, and enjoying his smile,, I have no pain.. Please everyone live life to the fullest..
Quote:
Originally Posted by DPD235 View Post
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!!
jacquelines *chi* is offline   Reply With QuoteReply With Quote