Chiari Malformation Community
No one can help
About This Community:

This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

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.
Related Discussions
7 Comments Post a Comment
Blank
539750 tn?1226525277
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.
Blank
620923 tn?1452919248
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"
Blank
1069888 tn?1421940341
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
Blank
Avatar f tn
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.
Blank
1063386 tn?1287882169
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
Blank
Avatar n tn
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 :)
Blank
620923 tn?1452919248
Good luck !!!

"selma"
Blank
Post a Comment
To
Recent Activity
4760166 tn?1398360913
Blank
The_beat_goes_on commented on This is the song that...
15 hrs ago
4760166 tn?1398360913
Blank
Avatar universal
Blank
skrowe is ...looking for answers. Comment
Jun 23
Top Neurology Answerers
620923 tn?1452919248
Blank
Allentown, PA
Avatar universal
Blank
1306714 tn?1327260680
Blank
muskegon, MI
7530528 tn?1428275172
Blank
TX
Avatar universal
Blank
992677 tn?1337358095
Blank
Chiari Malformation Community Resources