Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Hello all,
I had surgery 3 days ago and had my LP shunt tied off from my overshunting (this was something my NS and I discussed and agreed to try first, and if that didn't work, like if my IH came back, then I would go for the whole new shunt system)
I was wondering if anyone knew how long it takes for the body to get back to its normal CSF fluid level. I'm still having overshunting symptoms but not as severe.
I remember it can take a while for the brain to get used to new CSF levels. But I'm assuming there is a leak somewhere above the tied off section (just guessing). I really have no idea and am confused/scared. I see my NS for a follow up in 3 weeks. I know I could call him and leave a message, am I being overly concerned and should just wait until the follow up appointment? Thanks.
I had surgery 3 days ago and had my LP shunt tied off from my overshunting (this was something my NS and I discussed and agreed to try first, and if that didn't work, like if my IH came back, then I would go for the whole new shunt system)
I was wondering if anyone knew how long it takes for the body to get back to its normal CSF fluid level. I'm still having overshunting symptoms but not as severe.
I remember it can take a while for the brain to get used to new CSF levels. But I'm assuming there is a leak somewhere above the tied off section (just guessing). I really have no idea and am confused/scared. I see my NS for a follow up in 3 weeks. I know I could call him and leave a message, am I being overly concerned and should just wait until the follow up appointment? Thanks.
Mary
ah, can i ask you a question jazzy... (I have no idea if you will know the answer to this but just curious) do you know how low and high the settings are for a programable LP shunt, I can't find that info any where. I suppose I am getting pre-surgery nerves..sigh...but I do love to know everything I can before I do something...I think it has to deal with me wanting to feel fully commited, which is comforting to know that you are simialr in that way too.
again, hope you feel better soon, and take it easy :)
Mallory
Mary, I have always wondered why too. Esp. since overshunting is even more debiliting (I know, hard to believe anything could be worse then IIH.)
Mallory, The tightest the closing is 2.5, I don't know what the most open is, if it is zero or one. The new valve out is larger so easier to adjust if needed (the Dr. just puts a magnet which is in some kind of device against your back where your valve is, doesn't hurt at all, takes about 2 minutes). I do know that there is also a thinner shunt tubing (so it has more resistance) so the adjustment has more to play with/more of an option. Also, I want you to know that I had two years of no shunt problems and and my current problem is not the norm. My valve shunt is called a stratus II unitized, it is designed for LP shunts. There is a hard knobby part on my lower back, it doesn't hurt to touch it or even press on it.
You will do great and it will be so nice to feel better! I know it is hard not to worry/be scared, we will all be with you in some form or another. Blessings.
No symptoms of headaches just a direct pain where the shunt is. Should I opt for a revision? I had my shunt put in when I was 15 years old and they dont know what caused the hydrocephalus. Am now 24 and fighting fit. Gained 35 kilos of muscle mass. Don't wanna go under the knife again.
Would love to know what you guys think. These new programmable shunts seems cool :D
Yes, the tie can break and create a vacuum sucking your brain down into your spinal column. If your brain has already begun to descend or is herniated, this vacuum can jam the cerebellar tonsils into place obstructing CSF flow resulting in severe brainstem compression. You could also develop a syrinx and/or spinal fluid leak.
The majority of LP shunt patients develop cerebellar descent. This usually occurs over time and isn't noticed until symptoms are severe and a savvy radiologist or NS reads a flow study. Just be careful next few weeks. Dr. will make a decision about replacing or taking out the shunt. A tied off shunt left in place is just a problem waiting to happen.
That is what the get paid the big bucks for. Anytime anythign changes with me I call my NS office and ask them to tell the DR and give me a return call within 24 hours. He gets thousands of dollars an hour, they can take the extra work.