Elevated Intercranial Pressure indicates issues and chiari?

[turk911]

I am back! Have been in the hospital with my 9 year old daughter since Thurs. trying to treat a what we thought was a migraine that came on Oct. 31.  After no success with otc medication, negative sinus CT scan, i went to the ER with her.  Torrodol did not work, so they admitted her.  We went through 3 rounds of DHE treatment (I think that is what it is called) when that didn't help, they switched to Depacon and today they did a spinal tap to check the pressure of in her head.  The result of the spinal tap at opening was 28 (maybe 21, but I think it was 28).  Either way, normal is about 15 I understand.  Anyway, I am wondering if this can be related to Chiari.  Last spring on an MRI for headaches a mild Chiair was observed, but further study at UofM determined it was not significant.  However, I wonder if it is not playing a role somehow.  She is having a MRI tomorrow, but I am wondering if anyone has any info regarding this, is there a connection.  The Dr. says she is presenting with symptoms that are not supportive of chiari or a migraine...but, the pain in her head will not go away. On a scale of 1-5 her pain was 3.5 and now is a 2-2.5.  Any thoughts or similar experiences? what is the significance of the spinal tap? They becan another med to treat the increased pressure...in addition to the depacon, and her preventative migraine med.  For some reason I cannot remember the size of her chiari, but it was not 0, it was measured and recorded and noted as insignificant.  Well, I look forward to hearing from anyone who may have any input.  Thanks very much!

[turk911]

ps tonsils measure 7 mm last time in May...

[selmaS]

Hi...welcome back...sorry u did not get help for ur DH.....or have a clue...chiari is chiari regardless of the size of the herniation...many NS will agree that it may have an affect if it is at least at 5 mm's in herniation...but we know it can be smaller and  those with larger herniations may have little to no symptoms....it depends on CSF obstruction and overcrowding.

Ur DD sounds like she may have Inter cranial hypertension also known as peusdotumor cerebri.....

Once u get ur DD to a true chiari dr u will see a difference.....

IMPO no chiari is insignificant.

"selma"

[turk911]

I am so worried about my DD.  They sent her home with a worse headache than ever due to a spinal tap and her constant headache she already had.  Now I am reading online and it seems they should have done an MRI first b/c the chiari can cause complications for spinal taps due to pressure and an increased risk of forcing the chiari into the spinal column.  They never did an MRI at all and we have to wait to schedule one.  The one at the hospital did not have capacity to view the CSF flow.  She has had them done before, but they did not reveal any crowding.  Could it have changed quickly since our last MRI in June?  I am reading about the increased pressure and am worried. They sent her home with medication, but no answers.  After 5 days in the hospital there is no relief or answer.  I am so worried about her.  Any suggestions ...I have taken her to UofM to be evaluated by someone who specializes in chiari and was told it was not responsible for her headache b/c there was no crowding and now this.  My poor girl, i took her there to get well and feel so defeated.  I do not really know what to do.  If you have any suggestions that may help me, please let me know...thanks.

[n40066]

i'm so very sorry to hear about your sweet baby!  it's so very hard to watch one we love suffer, but it's always much worse when they are small..  that said, i'm going to jump right into it.  who is the dr you took her to?  how do you know he is a chiari specialist?  did you research him?  I'm not asking to be mean, but many times drs will "claim" to be specialist and have, in reality, very little experience with chiari.  everything that your are saying your daughter is feeling sounds very much like it is chiari related to me....but i am not a dr. only a fellow sufferer, who for 8 yrs was misdx!  if she has a blockage of csf, it can cause her symptoms....it's not just the over crowding that does it.  like selma said, there is also the possibility of ih.  what state do you live in?  we have a list of chiari specialist here on the forum that our members have used and liked....see if there is one near you that takes your insurance.  get 2nd and 3rd and 4th  opinions.  keep going until you find both the dr and the dx the you feel in your gut and heart is in the best interest for your child.  
and as always, you have friends here.  sorry i'm late on board, but here if you need me!
elizabeth

[selmaS]

Hi...I am not sure who Uof M is...what drs ur DD is seeing....u need to get true chiari drs to her  or her to them....as Lizzy mentioned above it makes all the difference and we mean nothing by it but we have no idea what this hospital is noted for, but it may not be chiari and chiari related conditions.

U r right that a LP is not a goo d idea for someone with chiari....but sometimes it does need to be done, but the dr performing it must know how to do so  slowly as not to pull on the tonsils.

And yes, the herniation can grow rapidly...they can also grow slowly...only a MRI can tell for sure...and it needs to be done on the same type machine with the same slices so it can be compared.....otherwise the herniation can apear to have shrunk or grown when in fact it hadn't.

DO some research and find a chiari dr near u

"selma"

[burdzmom]

hey! poor baby....you and your daughter. I cant imagine what i would do being in this situation with one of my little girls. God pray i never see that day
have to agree with selma on this one - chiari is chiari no matter what. they affect people at different sizes all the time.
to give you an idea on movement of the tonsils, i had an MRI in June 2009 and my herniation was 5mm. It went undiagnosed and treated as "Migraines"
fast forward to February 2010 and i fell to the ground, stroke like symptoms and hospitalized at a trauma center for 17 days! my chiari was 11mm. from 5mm to 11mm is eight months......it can happen. some people dont have that issue. i unfortunately did.
i dont want to alarm you, but the progression can be quick and more damage could be done.
I am so sorry they sent you home with a daughter in pain and no real answers! thats terrible. i think i would of set up camp in the lobby and called the nightly news. seriously, your daughters care cannot continue to be brushed off and overlooked.
hope you get some answers.
Are you near a Childrens Hospital or trauma Center?

jil

[turk911]

Hello all!  I have a local neurologist who is just a neuro here. He treats her for migraines.  Dr. Muraszko at UofM saw us last year, ordered a MRI with cine and told us she was not symptomatic due to chiari and have her treated for migraines "see you in 3 years" to follow up.  So, my local neuro has been her dr.  When all this began a week ago, i thought she had a migraine and took her to the E.R. She was treated by the local neuro group here, not chiari specialists. Our local neuro is it.  I have contacted U of M to make another appointment.  We had our MRI CSF study yesterday and the result is abnormal flow, but the chiari itself has not changed and measures the same.  This neuro office does not have a copy of the report from the other CSF study b/c UofM failed to forward that. I tried to get it to them today to compare, but have failed. Therefore, it cannot be compared just yet to see if it was like this in June. It seems if it were, Dr. Muraszko would have said as much.  However, she indicated nothing of the sort and told me to bring her up in 3 years for another look.  I know when we went in June her head was nothign like it has been these last two , three weeks.  This is much worse.  How can the flow be altered, but the Chiari itself is the same in measurement etc.  That seems odd. I will go to the ped tomorrow and get a copy of this and take it to the neuro.to compare.  Typically i keep all this stuff, i have no idea why I don't have it. I guess i was so relieved at the good news last july, i failed to handle due process and get my own records...shame on me! anyway, does this seem odd to anyone?
I hope to know something soon, and that she feels better soon.  Thank you for all of your suggestions...i thought i had put this to rest, and now it seems I haven't.  

[lu7997]

Aaa poor thing.  I have a "mild chiari" by deffinition too but a lot of symptoms.  My pressure on spinal tap was 35.  I am still not sure the connection but
y NS seems to think there is.   Do u have a chiari speacialist for her?  If not I would find one.  I know how miserable I am I can only imagine for her.  Good luck and hope ahe finds so
e relief.

[selmaS]

Hi...I know I said this b4 and most likely to u already, but size of the herniation does not matter, it is the overcrowding that can cause blockage as well as the shape of the tonsil.....

Plus, it is possible that ur DD is having a CSF issue...where she is either over or under producing....

Inter-cranial hypertension is something that some chiarians develop...and may explain it.

And from what I was to understand chiari should be checked at 6 month intervals unless there r no new symptoms...then once a yr....I really think u need new drs.....

I am sure u r frustrated to no end.....but hang in there.....

"selma"

[n40066]

quite honestly, i don't even think it matters a whole lot what the old report states!  the current one shows an abnormal flow.  end of subject!  the child has a blockage and something needs to be done to help her!  she needs to be seen by a specialist!!!  where is u of m?  if you can tell us where you are, someone on here may know of a specialist near you that they have been to and had a good experience with.  that's not to say that you and your daughter would like them, but it would be a place to start!  with chiari, things, meaning symptoms, can progress very slowly over years...then without warning, can suddenly go haywire and totally out of control!  that's what happened to me.  for 39 years i had no symptoms.  i was in an accident and injured my back and for some reason, instead of getting better, i just kept getting worse until i wound up on disability.  then,  7 years later the chiari symptoms took over my life completely.  8 1/2 years later i was dx with chiari.  so as you can see, there is no rhyme or reason to this condition and no two of us are exactly alike, yet we all have some basic similarities.  but with a blockage noted, it is vital that your daughter get attention from a specialist as soon as possible to prevent further complications or perm. nerve damage.
we're all here to help in any way we can....
elizabeth

[turk911]

You are right! I know. I picked up the old report and transported it myself since nobody can fax properly it seems, and i picked up the new report too.  The MRI  noted round tonsils in june did not note any crowding and there was 'decreased pulsatile' on the posterior of the foarmen magnum, but CSF flow was still present.  On the most recent report indicated inferiorly rounded tonsils than measure 8.0mm and a reduced flow anteriorly and no flow identified dorsall;y overlying the cerebellar tonsils.  My neuro guy basically told me to go back to U of M to see our neurosurgeon and determine if she is a surgical canidate.  I feel like he sorta brushed us off with little thought. In fact through all this I never saw him at the hospital and since discharge have only interfaced with his nurse.  I have no idea what to expect at our appointment this week.  Does anyone have any thoughts on this?  Does this indicate a blockage or a CSF production issue? Could the Lumbar puncture have any impact on this?  The report mentions nothing about crowding or the like at all.  I am totally getting a new neruo guy. I read the report, i know what it says, i wanted his professional insight and I got nothing!  So, Tues we are going to U of M to see a Dr. Mar, I have no experience with this person, last time I saw Dr. Muraszko, but she is in demand and tough to get into.  Well, thanks everyone for your insight.  I know you are not Drs, but you are certainly more useful to me than he was!  Do medications help with blockage like this?  She was on topomax until our appt in sept when our neuro said to ween her off of it, which is what I was doing when this wicked headache blew up.  Well, thank you in advance for your help.

[n40066]

where is u of m?  we keep asking but you have yet to address this question or if you have, i missed it!  lol!

yes, your daughter has a csf blockage according to what you have stated above.  yes, if a lp is done too quickly, it can cause the tonsils to herniate further down.  you are right to not waste any more time or money on your current nl.  he knows nothing about chiari!  you really need to get your baby to a chiari specialist...i cannot stress this enough!  i hope this dr you are going to soon is knowledgable with chiari and can refer you to a specialist in this field!  we look forward to hearing how you make out!
elizabeth

[turk911]

so sorry elizabeth, you are right, I have not answered the question. University of Michigan is where I will take her.  I believe they handle a lot of chiari patients and see a lot of them, I do not know if they are considered specialists in this field, but on their descriptions of interest, chiari is listed as a large focus. it is not like the chiari institute or anything like that, but I have more confidence in them.  I live in Toledo Ohio.  I see there are many specialists in Cleveland, so I also have that alternative.  I think I will receive good information on Tuesday.  I have no idea what to expect at this appointment, I wish I had some idea of what they may suggest so I can prepare myself.  I hope for a medication response and not surgical, but my neuro has had virtually no input or guidance for me.  In fact, he didnt' even know that his partner changed her medication in the hospital!  I wonder as a result of the MRI if they are even suitable for her now...with the blockage, should she still be taking medication that decreases the amount of csf produced?  NO kidding, this guy and his group has dropped the ball.  I will be finding a new neuro for sure!  I just wish I had some answers, I feel like I keep waiting for them, and they never come and I feel that he could have assisted more. I appreciate your suggestions, thank so much!

[n40066]

thank you!  i was wondering if it was maryland and you were close by me!  lol! well, getting rid of that dr is certainly a move in the right direction and you are doing everything in your power that you can as a mother!  you are researching, asking questions of people who have been where you are and traveling the same roads, you are checking out the drs you are going to see and you are NOT rushing your child under the knife!  BRAVO FOR YOU!!!!!  so many people just get scared of the unknown and rush right in without properly researching and once you make the step into the OR, it cannot be undone.  so what i suggest, is continue on the path you are and even if you fall in love with this dr and trust him completely, do go and get a 2nd and maybe even a 3rd opinion before you make your final call.  i would not stop your daughters meds as i feel they may help her more than hurt her, but please remember that i am NOT a dr!  and go with what they tell you to do!  this is only my humble opinion, but i do not feel that meds to reduce the production of csf will hurt her in any way, only help, until you decide which direction to go.  i do know that the only way to get rid of a blockage is surgical, as i said before.  i know that's hard to hear and certainly not what you want to hear, but it is the truth as i know it to be.  if i am wrong, i am sure the other members will chime in.  or if they know of other alternatives that i am not up on, they will inform you!  please....keep us posted on your progress.  i....we...really do care!
elizabeth

[turk911]

I am not going to stop the meds, I just question it is all.  This MRI report is odd. It does not say there is a blockage, or that the tonsils are blocking anything, it simply discusses the flow and there is no flow overlying the cerebellar tonsils...they are abnormally low.  I may be grasping here, but she had had a spinal tap done 48 hours before this MRI and has been suffering a terrible spinal headache, indicating that the opening was still leaking. Could this MRI diagnostic be skewed due to the tap...however, the tap indicated elevated pressure, and maybe that is why...I think I will begin a new strand and see what type of feedback I get.  I wish I lived in Maryland, I hope you are well. I was reading of your concerns on another board and hope you are soon well! Thanks for all of your input, I appreciate all your insight and support and encouragement!

[sleepypea]

I can tell you this. On my cine MRI it stated I had no flow in the 4th ventricle. I was so scared, but once I met with the NS he smiled and said it sounds like there's no flow but that isn't at all the case. The way the cine works is with your pulse and when the slice is taken during the MRI if it isn't during the pulsation of your heart pushing the csf flow through there then it wont show up on that slice. Its complicated but when he explained it then it made so much sense. If there isn't a blockage then there probably is flow, but again that's just the way i would interpret it. Obviously a NS is going to be able to view her scans and tell you for sure if there is flow or not :)
Good Luck!!! Try not to worry and just be as positive as you can until you get in to see the NS.