Psuedotumor cerebri pressure problems after shunt surgery

[brainhurts]

I have had two surgeries, one last year, another 3 weeks ago to place a lumbar shunt to drain spinal fluid that my body can't process normally. I have psuedotumor cerebri. Diamox does'nt work on me at all. The first shunt didn't work properly so they had to replace it. As soon as I came out of surgery I could tell it was working because my near blindness was restored and the pressure headaches were gone. But in their place was a very sharp and distinctly placed pain in the back of my neck, straight up the back of my head, around the crown of my skull, and around my eyes. If I move my head or eyes even slowly, I get a sharp pain in these areas, not an ache, a very sharp pain. The surgeon told me that my body was not use to the lower spinal fluid pressure and I would have to "pressurize". It has been 3 weeks, almost 4, and it is not better, sometimes it's worse. If I have to sneeze or cough, I have to make sure I'm hanging onto something, because the pain is so great I almost pass out. I'm worried that since the spinal fluid surrounds and protects the brain and eyes from bruising, am I doing damage to my brain? Will this condition go away? I am on medical leave at work because of this and I can not afford to be out much longer, but I can't imagine working in this condition. Pain meds don't work on me. The only way I can get the pain to subside is to lay on my side. But even this is not helping all the time now. The surgeon told me that the only other alternative I have is to take the shunt out and go blind!! I hope you can give me other suggestions. signed brainhurts

[CCF-Neuro-M.D.-PW]

Its not immediately clear what this new pain might be
It does seem temporally related to the shunt replacement though, so a cause related to this is suspicious

low pressure can also cause headache, which are usually worse on standing and better on lying, and with hydration and caffeine. The CSF pressure can be measured (either from the shunt or from a lumbar puncture) to see if the pressure is too low. Some shunts have a programmable valve (for example the MEDOS shunt) so the amount of shunting can be adjusted without another procedure

hopefully your surgeon is comfortable that the shunt is working properly. This can be evaluated by a shunt plain xray series and a CT or MRI scan of the head to confirm placement and ruleout hydrocephalus (expansion of the CSF spaces in a malfuncitoning shunt). You could also seek a second opinion. The Neurosurgery Department at the Cleveland Clinic could help you with this (Dr. Mark Luciano is our shunt expert)

Good luck

[queenbean]

I posted a few questions myself about PTC, hopefully you don't mind if I ask you a few.  How long have you been diagnosed with PTC?  I have not had a shut, but after a LP, my head would hurt tremendously if I sneezed and I found if I held my hand against my head, it really help to counter the pain.  Anyway, I guess if am fortunate that I am managing on Diamox, although the heat and humidity this summe appears to be taking its toll on me.

You Dr.'s comment about the shunt or going blind unfortunately was a very poor comment. I have to believe that Dr.'s for somewhat frustrates about the lack of research and knowledge of this condition.  The are no specific meds for it and no one seems to understand exactly what causes it.

I wish you the best.

[brainhurts]

I was diagnosed with PTC alittle over a year ago. I had gone almost completely blind and severe pressure headaches. I was in the hospital about two weeks before they determined what was wrong with me. I had a spinal tap and my vision returned for about 2 hours. So they placed a shunt from the base of my spine around to my intestinal area. The shunt worked for about 6 months, then I started having temporary vision problems and returning headaches. I stood it as long as I could, (I'm a single mother, work at Wal-Mart, with no insurance)but my vision started to get really bad again and I was having dizzy spells. So I went back to the surgeon and along with a check from the eye surgeon, they determined that the shunt had completely failed and needed to be replaced. I couldn't have a shunt placed from my skull down, because my ventricles are not large enough, so I had to have another lumbar shunt. Now my spinal pressure is very low and I'm having sharp pains. It seems that I've traded one evil for another. I'm glad you haven't had to have the shunt, it's no fun and I can feel it if I twist or bend too far over. I couldn't take the Diamox because it makes me very very sick.

[HUNNYPOOHS11]

HI,so sorry that all of this is happening to you,i cant believe that the doctors can't do any thing about this for you,all they can say is if you remove the shunt then you will go blind wow,thats so bad on there part i hope there not trying to scare you,how did you find out about your diagnosis,after they did the spinal fluis test?when your vision was going out did you see nothing but black? or was everything white? do you stll get the bad headaches too, they wasnted to put a shunt for my boyfriend too and he said no cause he was worried about the after effects,sounds like an infection is going on,how long has this pain been really bad are you running a temp? any feeling like throwing up or no?well you can email me at aol if you like my name is cris and im going to pray for you to get better so you can take care of your child,and go back to work but you need to worry about you right now i know its hard,especially being alone,well keep me posted on how your doing my screen name is the same at AOL okay god bless you and i hope you will get better soon,write back..

[Krackilackin84]

I was diagnosed with PTC in April 2004. I have been hospitalized 4 times since then and have had atleast 20 lumbar punctures . Finally my neurologist and opthomologist agree that I need the shunt surgery. This will be my first surgery so I'm kinda wondering what to expect when going into it. ANy suggestions or advice would be appreciated. You can contact me on AOL with the same name.

[suziq1106]

I had a LP shunt put in three years ago February.  I am starting to have severe headaches again that can only be relieved by putting my head down.  I haven't had to see a neurologist in over a year and a half.  Honestly, I am scared to death to go back down this road.  How often does a shunt fail??  Any clue on why this is happening?  I am seeing runners out of the corners of my eyes lately.  I know I need to go to the doctor, but I was reading today and thought I would post for once.

[Torifan123]

Needs some info...

I was diagnosed with PTC in Feb 05.  I am a 27 year old female.  I gained about 100 lbs in about a year.  It started out with dizziness and blindness in my right eye, and debilitating headaches.  I had already had a neurologist for history of migraines who sent me to an eye specialist.  She did the visual field tests and the pictures of my optic nerves and immediately sent me to the ER for a spinal tap.  It took 2 ER docs multiple attempts to finally get the tap which resulted in a high pressure (I don't know the exact number).  I was hospitalized for a week or so for pain control (which is difficult since I have fibromyalgia).  Following that I was told to lose weight and the PTC would resolve itself.  In the meantime (2 months later) I needed another spinal tap in which the Neurologist herself did because she wanted to see the pressure herself.  It was 380.  I ended up needing a blood patch because the hole in my spinal column didn't heal itself.  After that I gave in to surgery and decided to get the lumbar shunt on June 21.  For the most part the headaches went away but it took me a LONG time to get used to the pressure differences in my head.  When I sneezed, coughed, beard down to pass gas or have a bowel movement.  In fact the first time I had a BM the searing pain was shooting up my neck and head so bad I almost passed out and fell off the toilet.  And so the headaches came back... They did an MRI w and w/o contrast of my neck.  They did find a small disk bulge between C6-7 but that's not causing the headaches.  I kept telling them there's something wrong with the shunt (I know my own body).  So they finally did a test this past Friday Oct 07 similar to a spinal tap but they inject dye in you to see if it ends up in your abdomen, i.e. to see if it's shunting (working).  The Neurosurgeon did the test.  The past 2 times I've have a needle in my back I've been numbed with lidocane.  HE DIDN'T EVEN NUMB ME and he couldn't get the needle in.  I have 4-5 needle marks in my back below my shunt scar.  I almost jumped off the table and killed him but I was in too much pain.  ANYWAY...I have to get my replaced, and I’m back on 4000mg of Diamox/day plus Topamax and Fiorcet.  At one point they thought my shunt was overworking.  Am I a candidate for a MEDOS shunt?  How long is a shunt supposed to last?  When I was dx with PTC I weighted 265.  When I have surgery I weighed 222.  Now I weigh about 190.  Am I going to have to do this over and over again?  I never needed a shunt or had PTC before I gained all this weight.

Thanks in Advance!!  Torifan123

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