Chiari and VP Shunts

[heatherandrea]

Hi everyone.
I was diagnosed in 2003 with acm1 and I had the decompression srgery the same year. Since then I was diagnosed with ptc in 06 and I had my first vp shunt placed in 07. This past Aug of 2011 I had to have a 2nd shunt placed in my left ventricle so now I have 2 in my head, and thanks to a car accident neither one is working. All together ive had a total of 8 brain surgeries, my question is, allot of my chiari symptoms are back in full force, but my ns seem to think its the ptc and not chiari. Most days im not even able to get ot of bed from the pain, dizziness, etc, plus thanks to the ptc im going blind. I dont know where to turn at this point, and im sooo confused and scared. Does anyone have any suggestions on how to get my ns to listen to me about the chiari? My herniation was all the way down to my c3, bt he refuses to believe that it could be chiari and that Im cured since I had the decompression surgery. Hes not sure what to do with the shunts since they are not working properly and have caused both the left and right ventricles to collapse around the tubing, that he doesnt think he could safely remove the tubing and replace it without causing a brain bleed. I dont know where to turn at this point. Any suggestions would be greatly appreciated

[myrose372]

I've been under the care of a neurologist for more than 10 yrs for symptoms related to chairi malformation and syrinx (T6-T11). I've spent countless hours researching my options. I haven't read many success stories and was under the impression that decompression surgery may relieve some symptoms but once the nerve damage is done - it's done. I would love to hear from those who had successful surgeries!

I agree w/ an earlier post, all of this is so frustrating! So much conflicting information that it's difficult to know what's the right thing to do.

My Neuro told me today that she knew I was being honest about my symptoms and I'm too young to be going through this. She is referring me to the best NS she knows that is experienced w/ syrinx... BUT this is only a consult because surgeons will not mess w/ syrinx unless there is no other option.  I'm scared to have surgery w/o improvement and I'm scared not to have surgery and end up w/ irreversible paralysis.

Sorry for rambling! It's even more frustrating to see how many others are going through the same thing and there is no clear answers!

God bless and good night

[heatherandrea]

My current dr said I was shunt dependant so I got a 2nd opinion and he agreed, but he wants to put in an LP shunt. Wouldnt that cause my chiari to worsen? Seriously, how much hardware can one person handle to keep fluid off my brain?

[soccero]

i had tow shunts for awhile but they both failed so they took them out idk i would say u need to find a new dr.
molly

[selmaS]

  Many times when a shunt malfunctions a new one may be placed and the old one left where it is, so yes it is not uncommon for this to happen.

U may want to check into other Drs at this point, like Molly suggested her Dr may be able to help u......and travel is worth it then dealing with a Dr who really has no clue what else to do for u,

[heatherandrea]

I live in Fla, and my ns has some experience with acm, but cause the shunts arent working right he continues to do spinal taps to lower the pressure, but I thought that could make the chiari worse by pulling the tonsils down further. Im allergic to diamox and topamax, but they have me on keppra for my seizures, 2000mg 2x daily,  Is it common for someone to have 2 shunts implanted? I had never heard of this before

[soccero]

i have chiari and hydrocephalous and a great dr for the shunt issues is dr rigamonti at john hopkins in baltimore i dnt no where u live but he is well worth the travel!!
molly

[selmaS]

  Hi and welcome to the Chiari forum.

Sounds like ur NS is not a true Chiari specialist, other wise they would know how to help u. R u on meds at all for the PTC? Diamox, or TOPAMAX?

We have a list of the members Drs here for u to use to research Drs, it is not meant as a referral , just a means to help u with ur research.....

U may have to travel to get to one of the Drs, but it will be well worth it.

Excess CSF can cause the cerebral tonsils to herniate even post op if it is backed up...and yes the symptoms will feel the same as chiari , but it may be the PTC causing the issue....u may also have some scar tissue that formed as well....when was ur last MRI?