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...
Hi Everyone,
I have a vp shunt and since my last revision October 25th I've been struggling with headaches. I've been working with my neurologist to try to get them under some kind of control. I'm currently on Topamax 150mg morning and night and 150 mg of Amitryptiline at night. I've dealt with the side effects to get back to my job as a special education teacher, but I've missed SO much work.
I usually have pretty good luck with headaches in the summer, but I've had an awful summer. My neurosurgeon wants to do a 24 hour pressure monitoring. He said he would admit me to the hospital do a small incision on the opposite side of my head from my shunt and measure my spinal fluid in my brain for a full 24 hours to see if my shunt is working properly.
Has anyone had this done? How long is the recovery? How bad does this hurt? Are you awake for the implantation? Any info is welcome, I start school in 2 1/2 weeks and I was really hoping this year I could be a full teacher again....DAMN this disease!!!
Thanks for listening,
Nicole
I have a vp shunt and since my last revision October 25th I've been struggling with headaches. I've been working with my neurologist to try to get them under some kind of control. I'm currently on Topamax 150mg morning and night and 150 mg of Amitryptiline at night. I've dealt with the side effects to get back to my job as a special education teacher, but I've missed SO much work.
I usually have pretty good luck with headaches in the summer, but I've had an awful summer. My neurosurgeon wants to do a 24 hour pressure monitoring. He said he would admit me to the hospital do a small incision on the opposite side of my head from my shunt and measure my spinal fluid in my brain for a full 24 hours to see if my shunt is working properly.
Has anyone had this done? How long is the recovery? How bad does this hurt? Are you awake for the implantation? Any info is welcome, I start school in 2 1/2 weeks and I was really hoping this year I could be a full teacher again....DAMN this disease!!!
Thanks for listening,
Nicole
You are going through such a rocky patch. Your an incredibly strong woman that you are teaching in spite of it.
I've never had 24 hr. pressure monitoring done. I just wanted to make sure you have a reply of some sort. I've read a couple of posts on here that said it didn't hurt to have the tube in place, it went well, and afterwards they took it easy for a day or two.
On a similar note I just don't understand why in animal medicine we can implant a device that measures the changes in CSF over the course of a month, then it is read by computer at the end of the month and determine when the fluid fluctuates. The animal is not hospitalized and the device is left in and is read remotely by the computer. I don't get why they can't do this in human medicine and see what might be our triggers, what time of day is causing the spikes or with what activities, etc. grr.
I have not had this procedure, but a member of this group from years ago had something very similar. If I remember, before he decided to have a shunt, they monitored his spinal fluid for 3 days...for him the test results revealed whether or not a shunt would be effective for headache relief.
I remember he had a small question mark incision, but he did not complain of too much discomfort, or a long recovery time...and his monitoring lasted 3 days.
I think you will be ok, although I know it sure sounds like a very scary procedure,
Please let us know how it goes.
Best, LuLu
* If Cathy is reading, do you remember TJ's 3 day spinal fluid test prior to his shunt surgery?
I will just hope for the best!
sending you all happy healthy thoughts
Nicole
I've never had the procedure done before but I've seen ICP monitoring devices of all sorts placed, mainly for head trauma in surgery but often in the ICU when the patient is awake. Different reasoning for the monitor but same concept. Anyway, it's a small incision and the doctor should use a good amount of local anesthetic before the incision is made. The local is the worst part because it does unfortunately burn but when it is used generously you shouldn't feel the incision. You will feel the pressure sensation of them touching you and also the pressure of placing the device but you should not feel any sharp pain.
Also, you can ask if they will allow you to get versed and/or fentanyl for the procedure. The versed will help you relax and forget about the procedure and fentanyl is a narcotic to help ease any pain you may feel. Of course, they may not want to give you any medication that may affect your ICP but both are very short acting agents so it can't hurt to ask at your appointment.
Hope that helps,
D
I'm now waiting to hear back from my neurosurgeon who made it sound like I was just going to call him up and give him the "OK" to get this all up and running. Meanwhile when I called today the secretary and nurse made me feel like I was a crazy person. I mean how do you explain that you are voluntary asking to come in to the hospital to have a hole drilled in your head and measure your spinal fluid for 24 hours. The response I got was "ok I'll let him know". Ya I have nothing else going on so I thought I'd give this a whirl!! I want to reach through the phone and be like I feel like my eyes are going to pop out, give him the message real soon please!!! Sorry little rant there!
Hope you are all feeling well
Nicole
I'm offering this info cautiously because I know not all NS's think this way. Yours probably thinks differently.
I'm not a candidate for shunt surgery. The reasons the NS gave me were 1) I do not have paps, and 2) I have chronic migraines in addition to IH. In this particular neurosurgeon's experience, people with chronic migraines get a shunt and they usually get relief from their IH headaches, but it's replaced by escalating other headaches. Now he's very cautious about placing shunts in anyone who has a chronic pain syndrome. He doesn't want to swap one headache for another which might be even worse. Instead he recommends medical management (drugs) as long as possible.
If the consequences of my IH were more severe, say paps, he might decide the risk of increased pain is worth it for me. But at this point it isn't.
I think I have turned into a person with chronic migraines with IH, but it wasn't until after my shunt revisions that I became this way. I presented with only high pressure headaches that would feel better after a lumbar puncture. My neurologist tried treating me with meds for over a year before he referred me to a neurosurgeon, because he was unable to control the pressure with meds alone. After getting my vp shunt was placed I felt amazing. I was off all meds, and had no headaches until a ventricle collapsed 6 months later and I had to have 2 revisions 5 days apart. Since then my headaches have not been in control. I now have "migraines" and my life is a mess. The shunt went from being the best thing that ever happened to me, to me being a mess with a shunt.