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Old 03-07-2014, 09:03 PM #21
hootenbanger hootenbanger is offline
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Confused so cofused

Hi I had a vp shunt put in in August of 2010 due to psuedo tumor. I was diagnosed with it in April of that year when I went to get my eyes checked. They thought I had MS at first but the MRI was normal just extra fluid. When I had my first spinal tap done my brother said the neurologist's faces were like "why isn't this woman in a coma and how is she still functioning?" the pessure was so high it went over the pipette they use to measure opening pressure.

The funny thing is I had been living with the pressure for 6 years before I had anyone check it out and I wouldn't have had it checked except I lost half the vision in my left eye. 6 years prior I had a headache/migraine for 3 months and double vision at the same time. when the double vision went away I noticed the blind spot but I didn't have insurance so didn't get it checked. Other than that I really had no symptoms that were outstanding. Oh I would get dizzy or forget things but I thought it was side effects of my bipolar meds.
Any way since I had the shunt put in I have had a pain in my right side that comes and goes and feels either throbbin or stabbing and I am on topomax to keep from having headaches. I asked the neuro surgeon to shorten the tube thinking that that was the cause of the pain and he said the tube was like a piece of cooked spagetti so it couldn't be that and he wouldn't shorten the tube either. I had to have my gall bladder out because of stones (took the docs 2 years of me being in pain to figure that out all because I did not show the right response on my first ultrasound) The pain in my side is still there. I have balance problems worse than before the shunt and am very easily irratated and have whooshing in my ears from time to time. The neuro nurse said I had an inner ear infection and that my pc needed to see to it.

My biggest frustration besides the pain is that the neurosurgeon and neurologist think everything is fine. Before the surgery my white cell count was in normal range now it stays elevated the last time I went in it was 21 my doc asked if they put me in the hospital, I told him no they gave me 2 different antibiotics to take and sent me home to take them.

When they did an xray to see where the tube was they said it had looped and the tip was under my liver when I was told it should be down by my lower abdomen.( that is how long the tube is)

Can anyone help me figure this out I tell my doc's and they think because I don't present with their "symptom list" that nothing is wrong. My brother had leukemia when he was 8 so I know first hand that people don't go by the book the doc uses. What else can I do to convince them there is something not right I should be feeling better not worse I have even had times where I felt like my feet were glued to the ground and had to have help just to get to my front door after feeling ok and running errands.

Sorry this post is so long any advice would be greatly appreciated
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Old 03-07-2014, 10:08 PM #22
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Default so confused

forgot to add that I am on medicaid and so my chances of getting a second oppinion is slim to nil
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Old 03-11-2014, 04:28 PM #23
jroones jroones is offline
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Its the tube that's causing thie pain i had the same thing so i got va shunt put in. I'm having the same problems your having with my balance i sometimes walk like I'm drunk, ear noises, mood swings I'm just sick of it all. all i can say is don't give up keep on the neurosureon until u get help don't take no for answer. until something is done. last time i went in i strated crying I'm in so much pain i can't take it anymore. stay strong you made it this far don't give up. I go back in on fri the gabapetin is not helping i just hope something is done but I'm sure that won't happen.
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Old 03-11-2014, 07:39 PM #24
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Quote:
Originally Posted by jroones View Post
Its the tube that's causing thie pain i had the same thing so i got va shunt put in. I'm having the same problems your having with my balance i sometimes walk like I'm drunk, ear noises, mood swings I'm just sick of it all. all i can say is don't give up keep on the neurosureon until u get help don't take no for answer. until something is done. last time i went in i strated crying I'm in so much pain i can't take it anymore. stay strong you made it this far don't give up. I go back in on fri the gabapetin is not helping i just hope something is done but I'm sure that won't happen.
Thank you I see my neurologist in April. My balance gets so bad I had my doctor give me a four point cane I feel rediculous with it and don't use it as much as I should, but to almost fall over just standing still when people look at me when that happens I just tell them the floor moved on me LOL I will tell the neurologist again about the pain and suggest the va shunt see what he says. When I was first diagnosed my psychiatrist said "so it really is all in your head" and laughed. (he had a weird sense of humor). Now if I can just figure out why my white cell has stayed elevated since the shunt was put in that would be great. It has been elevated for so long now that I don't even run a temp anymore.
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Old 03-12-2014, 02:17 AM #25
jroones jroones is offline
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Your white count goes up when your body is trying to fight something off i wonder if its trying to fight off the shunt due to it being a object in your head. I'm not a doctor or anything close to it but i think the white count going up has something to do with the shunt. I have not got to the point that i need a cain yet who cares what other people thinkif you fall and get hurt or even bump your head where the shunt is. I know what its like too have people look at you like that i have tremors that get really bad at times that people will look at me and talk about me behind my back. That will never change all you in just walk away i hope things get better for you don't give up and keep fighting.
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