VP SHUNT- HYDRO QUESTIONS

[northernstarmn]

I have noticed that, when it is hot and humid outside i suffer headaches muscle pains over all drained. I have also noticed that being on a drive over 20 minutes- i feel like my neck is loose (like a bobble head)  then suffer some pretty hard headaches and neck pains, then the next few days i am wiped out-headaches etc..it takes me roughly a week from recovering from the ride- not only does this happen then but also if i do a lot of walking i get the same issues i also get pains along the shunt cathader in the skull and its more painful on the upper portion of the shunt.
does anyone else have these problems? I should mention I also have chiari and have had decompression surgery which is why i now have a shunt (complication).

ive also noticed that when the temperature goes into the 70's iam cold,(never had that problem before) and now wondering what the winter will do to me.

the other day i hit my head on a door frame and notice that bubble part of the shunt was depressed a bit and took about 8 minutes for it to pop back up, and part of the bubble feels harder then the other parts and wondering why?

not exactly sure who i should be seeing, my NS who installed the shunt made it clear he doesnt want to see me unless it fails or it resets ( with one of the many MRI's)...My neurologist doesnt seem to know much at all about a shunt OR chiari, and my primary doc knows nothings as well.......currently looking for a NL in MN if anyone can reccomend one it would be great!

still trying to learn this new life of mine
thanks

[Kristynicole]

Which type of Chiari do you have? I have type 3. It really ***** these past few years but lately I have been alright. At least I think I have. Anyway, I have the VP shunt because of Hydrocephalus and complex hydrocephalus with posterier fossa cyst. I have had lots of headaches as a child. I'm going on 34 on May 1st. My last shunt replacement surgery (knock on wood) was when I was 16! I was born hard of hearing and I also lost ALL the rest of my hearing at the age of 16 as well because I also had a surgery then to remove a cyst from the stem of my brain stem so that caused me to lose ALL the rest of my hearing so about a year later, I had surgery to get a Cochlear Implant and I have had that for about 18 years now. It has been working really well for me. I am hearing lots of things with it. I do not hear what people say to me specifically so I cannot talk on the phone or anything like that. I can read ur lips though very well though and I do understand when someone is talking so if I hear someone talking or something like that, I'll look up and try to find out who or what it is (sometimes I don't always know who or what it is right away without looking at the person...I can just hear sounds all over so I can hear music too and all that...I just can't pick out exactly what it is. I have (on occasion...just because my parents or a family member or someone was with me before singing with me telling me what it was) detected the song Footloose on the radio because of the beat. I was watching Dancing with the Stars with my Aunt Brenda one night and Blake Shelton sang it one night so my aunt told me what it was so I was listening along with the beat so a few weeks ago, a friend and I were in car and I detected same song. I said "That sounds like Footloose" and she said "You are right." I have also detected the Betty and Al song from along time ago because I remember the beat from when I heard along time ago. My Grandparents names are Betty and Al so we used to listen to that by Paul Simon and my cousin, Karen and I once made a dance one night so I detected that so it is rare but I can detect music by the beat once in a while. My parents or family and friends will let me know if I have it right or wrong as I practice that. My doctors say that it is great practice and maybe one day, I will eventually...just maybe be able to talk on phone once again! We never know. Anyway, I also have Klippel Feil with malformation, Wildervanck Syndrome, Syringomyelia, recurring helicobacter pylori stenosis, Duane's Syndrome, myelomeningocele, Dandy Walker, facial palsy in August of 95 due to a surgery but it went away,

[Dr. A. Srivastava]

Hello, Thank you for your question. If you have continuous symptoms like that, possible causes may be shunt is either under-draining or over-draining. Your doctor can assess this with a lumbar puncture and measures the fluid pressure. He/She may make some adjustment of the shunt to allow it to drain more and can monitor if the symptoms improves. Another possibility could be shunt is over-draining, that may lead to low CSF pressure that can also lead to headache. This may improve when the person lies down and gets worse when the person sits or stands. Other possibility could be any circulatory disorder related to heart condition or blood vessel disorder. As you are suffering from continuous symptoms, please arrange an appointment with a neurologist right away who will evaluate the further underlying disorders here that may be the main reasons of her headaches and can suggest her appropriate treatment. Hope this information proves helpful to you.

[Dr. A. Srivastava]

Hello, Thank you for your question. If you have continuous symptoms like that, possible causes may be shunt is either under-draining or over-draining. Your doctor can assess this with a lumbar puncture and measures the fluid pressure. He/She may make some adjustment of the shunt to allow it to drain more and can monitor if the symptoms improves. Another possibility could be shunt is over-draining, that may lead to low CSF pressure that can also lead to headache. This may improve when the person lies down and gets worse when the person sits or stands. Other possibility could be any circulatory disorder related to heart condition or blood vessel disorder. As you are suffering from continuous symptoms, please arrange an appointment with a neurologist right away who will evaluate the further underlying disorders here that may be the main reasons of her headaches and can suggest her appropriate treatment. Hope this information proves helpful to you.

[Dr. A. Srivastava]

Hello, Thank you for your question. If you have continuous symptoms like that, possible causes may be shunt is either under-draining or over-draining. Your doctor can assess this with a lumbar puncture and measures the fluid pressure. He/She may make some adjustment of the shunt to allow it to drain more and can monitor if the symptoms improves. Another possibility could be shunt is over-draining, that may lead to low CSF pressure that can also lead to headache. This may improve when the person lies down and gets worse when the person sits or stands. Other possibility could be any circulatory disorder related to heart condition or blood vessel disorder. As you are suffering from continuous symptoms, please arrange an appointment with a neurologist right away who will evaluate the further underlying disorders here that may be the main reasons of her headaches and can suggest her appropriate treatment. Hope this information proves helpful to you.