No one can help

I have extreme pressure in my head, the neurologists can't get any spinal fluid from a lumbar puncture, but won't go any further in testing. Been to 4 different hospitals in the last couple of months.

[redkim]

If you have Chiari and lumbar puncture can make the herniation worse...so I have read.  If you have Chiari you will need to see a specialist.

[selmaS]

Hi...I must agree with Kim....if u have chiari and have a CSF blockage they will not get fluid...plus if they drew it too fast it can pull the herniation down further corking the blockage.Were u dx'd with chiari?

U deff need a dr that will do testing....not knowing where u r from, or if ur insurance requires a referral....try ur PCP.....he/she may agree since there is no fluid obtained from the LP, that a MRI may be in order.

Good Luck and do keep us posted.

"selma"

[laratterman]

WOW!  I am cringing!  I do hope you are seeing a Chiari Doc if you have Chiari... and that you have already been decompressed if they are doing LPs.  

Selma and RedKim are 100% correct... according to Dr. Di at the Cleveland Clinic!  I don't mean to scare you, but caution you and give you the best information, as we have all received it from our docs.

If you have Chiari AND don't have a Chiari doc, AND if you have NOT been decompressed... do not allow any further LPs until you get a Chiari doc and have been decompressed.  In most cases, after decompression, (and they will dbl check this with MRI) most people are safe to have the LPs.  However, Selma is right, you would be putting a vacuum to things otherwise and could seriously increase your herniation otherwise.

If your pcp or NL doesn't know much about Chiari (and they may think they do, when truly they don't) they will continue to order testing such as this for you.  Do yourself the biggest favor that most of us have done... be your own best health care advocate... do your homework... and DON'T be afraid to stand up to these docs with the information you arm yourself with!  We, as Chiari patients, seem to be the only ones really educating the PCPs and NLs... along with a lot of NSs too!  A Chiari (specialist) doc is a MUST for all of us!

Blessings to you!!!!

Lori

[jpurple]

Ditto to the other posts.
When they saw chiari on my mri they sent me to the ER, this is years ago.  The ER doc said he would not tap me d/t the tonsils would close over the spinal cord and i would be paralyzed.  My neuro (who i had just met) came in and said that would not happen and tapped me.  Took a long time, difficult to get much fluid at all and I signed the 2 consents for procedure while i was vomiting into a bedpan.  I should not have let them touch me but i was in so much pain and so vulnerable and had no idea what chiari was.  Thank God i was not hurt by the procedure, I don't think anyway
My point to this story is make sure you see a chiari specialist.

[lu7997]

Some one can help. I promise u that.   Start with ur gp and be your own advocate.  (I am a nurse and I always thought that my doctors and nurses would fight for me the way I dis for my patients. But I learned quickly tht is bot the case).  Tell your doc u want an MRI and don't take no for an answer.   That will give u a good start.  If chiari is found find a speacialist.  No ordinary NS or NL will work. They just do not seem to know enough to care for chiari properly.



There is help out there. It just has to be searched for. Think of it like a treasure hunt.    X marks the spot. : ). Good luck and don't give up

[Debbie912]

Thank you so much for all your comments and help. I am proceeding to find the chiari doctor I need and appreciate you taking the time to respond to my question.

I will post another note after I am seen next week.

Thanks again :)

[selmaS]

Good luck !!!

"selma"