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:
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!!
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