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, I'm sorry, a RN who has IH told me that after a LP it can last up to 12 hours before your fluid starts to come back (hers comes back to its original level after 1 hour). TJ informed me that that it can last for weeks or longer for people...I apologize, I did not mean to misinform people.
Anyway TJ asked what I meant when I said too many LP's can be a concern. On another site I go to for people with PTC, a couple of people have posted that after having to many LP's (I don't know how many is too many) they have a rare condition called acquired Chiari Malformation (The way I understand it, is that your brain stem starts to drop into your foramen magnum: the outlet for your cranium), another person posted she got radiculopathy from the needle going through her nerve and causing perm. damage (ouch, not a good Dr. who did that one), and one other person told me she got arachanoiditis(sp?) somekind of inflammation of the spine meninges(?). My NS told me he was most worried about infections and that is why he put in a resevior with my LP shunt.
Rigght now I have sciatica from the needle brushing against my nerve-I felt it right away in my leg as the Dr. was doing it (not a good Dr. either) and I am waiting to have an epidural.
Don't mean to freak people out, but I think it is good to stand up for ourselves and know these things and question Dr's.
:) Jazzy
Jazzy
Anyway TJ asked what I meant when I said too many LP's can be a concern. On another site I go to for people with PTC, a couple of people have posted that after having to many LP's (I don't know how many is too many) they have a rare condition called acquired Chiari Malformation (The way I understand it, is that your brain stem starts to drop into your foramen magnum: the outlet for your cranium), another person posted she got radiculopathy from the needle going through her nerve and causing perm. damage (ouch, not a good Dr. who did that one), and one other person told me she got arachanoiditis(sp?) somekind of inflammation of the spine meninges(?). My NS told me he was most worried about infections and that is why he put in a resevior with my LP shunt.
Rigght now I have sciatica from the needle brushing against my nerve-I felt it right away in my leg as the Dr. was doing it (not a good Dr. either) and I am waiting to have an epidural.
Don't mean to freak people out, but I think it is good to stand up for ourselves and know these things and question Dr's.
:) Jazzy
Jazzy
That is what is so frustrating with this illness. It's different for everyone. In theory our body makes more than 3 times the CSF it holds every day so other than a little leaking out the needle hole it replenishes what they take out rather quickly. Why I sometimes get 2,3 or 4 weeks of reduced HA after a LP makes no sense. I have talked with others that are like me and others who get no benefit what so ever. IIH is a neural hydrodynamic disorder that either effects the rate CSF is made or the rate it is absorbed so my guess is that one of those two or both must somehow change how fast the pressure builds back up and that must be different in all of us. Idiopathic strikes again.
As for too many LPs causing an acquired Chiari, I have not heard that before but it makes sense. I would think it would have to be a lot of LPs followed by a lot of LP headachesouch. One of my biggest fears about getting a shunt is ending up with a Chiari.
I have had 2 of 5 LPs where they hit something that caused electric shocks run down my leg. My next LP will be done under Fluoroscopy. And Ill talk to the NS about the reservoir idea. I like the sound of that.
TJ
IHRF Ambassador
That is so interesting about our CSF. There really is so much to the body that we still just don't know.
My NS was so mad since I had my last LP under fluoroscopy and the Dr. that did it still hit my nerve (ohh lucky me...or maybe not so lucky me). Sorry you had that happen to, it really is awful pain.
Yes, I like having the reservoir (even though you can see this bump that sticks out from my back...but I don't care), though he said if I do need any more LP's a NS has to do it and not just any Dr.
I also asked him how the reservoir doesn't leak when a needle is put into it and he drew a picture of how the needle is placed and the material of the reservoir closes up on itself as soon as the needle is taken out.
Jazzy
I have seen what the reservoir looks like but you are the fist person I know that actually has one. I forgot, are you the one that has the programmable shunt that can no longer be adjusted or is that someone else? Can you feel the shunt too? or just the reservoir?
TJ
Its a great thing Jazzy that they put the resovoire in to help prevent it, but its often missed in the first place.
after my complications, I was sent for a second opinion, and he is who found the Chiari, looking back, he found it was there before the shunt was placed and it made it worse over time.
Before a shunt they should always do a CINE MRI to check CSF flow and make sure there are no obstructions.
The Slit ventricles make VP shunts risky and they don't like putting them in if there is not vision risks is how he explained it and I am no longer a candidate for LP at all.
I can't feel my LP shunt at all, or see any part of it. The resevoir feels like a hard knot, but it doesn't hurt at all when I touch it (I don't have a programmable shunt).
Hi Charlotte,
I'm so sorry you went through all of that. It is good to remind people to make sure they are tested for chiari first, if their Dr doesn't do it. How are you doing now?
Fortunatly, the hospital (and all the NS's associated with the hospital) I went to always checks for chiari malformation before any shunt replacement, so I was tested. My NS showed me how small my ventricles were and how tricky it would be to do a VP. He also told me he only does VP's (for PTC pt's) if the LP shunt doesn't work, after revisions, and if there is a threat to a person's vision.
Hope you are well.
Fortunately Chiari symptoms are virtually identical to really bad PTC symptoms, so its life as usual.
Unfortunately alot of the research being done to connect Chiari and PTC was still being done and studies were completed two years after my shunt was put in.
I am actually shuntless right now and on just Topamax, which is about to be upped again to 200mgs twice daily on Wednesday, unfortunately that actually affects the vision and it does not touch the headaches any better than the other meds have. I have never been medically managed, but my neurologist is fighting for me, so its a better battle than before.
sorry I didn't get back to you yesterday, not feeling so good. I'm glad you have a great neuro Dr. I have seen people post about PTC and chiari before (that's how I learned about it) but I don't know what their tx. plans are. I don't have chiari but know how awful PTC mahas made me feel and you are in my thoughts. Jazzy
I am seeking a 3rd opinion.
My Neurologist wants me to have a VP shunt in and they are concidering having the Chiari decompressed, we will have to see though, because decompression in itself may help the PTC too, or shunting may help the Chiari, I was told having both really requires treating both.
Thanks for educating me. I'm sure there are people here who have chiari malformation. At one time I thought I was going to have a VP shunt and I talked with some people who have had them and they were happy with the results. Good luck and keep us posted about how you are doing. Jazzy