Advice needed on CSF study...

[turk911]

Starting a new thread, hoping for input from other who have 'been there and done that'...ok, my daughter had a spinal tap, it revealed elevated pressure of 28.  The dr. didn't know if this was due to her Chiari 1 or cerebri pseudo tumor (something to that effect).  But the pressure was elevated.  Then, 48 hours later she had an MRI flow study done.  The MRI report stated that there is reduced flow anteriorly at the medulla oblongata and no flow identified dorsally overlying the cerebellar tonsils, abnormal CSF flow study and tonsils are abnormally low.  The report makes no mention of a blockage, but there is no flow...could the spinal tap skew the result?  She was suffering terribly bad from a spinal headache, indicating that the puncture had not healed, maybe it was leaking and that is why there was no flow...however, the lumbar opening pressure was still high indicating a blockage.  We are seeing a NS at Univ. of Michigan  (who works closley with a group of 3 and they have lots of Chiari patients, I do not know if they qualify as a specialist in this field though) on Tues. I was just wondering if you would have any insight, suggestions...I have no idea what to expect and our NL has passed me off to NS and has offered no insight himself.  Is medication ever successful to get the flow moving in there? or is it always surgery...I am grasping to get this together in my head and am all over the place. Incidentally, she was put on Topoman and Diamox, and now, finally 4 days later, she is getting over the spinal HA, but still aches...thanks everyone for your support.  I feel blessed to have found this site and return here when I need answers seeing as though my NL has dropped the ball.  Shannon

[soccero]

dr ellenbogen in Seattle I think.  He is a pediatric chiari specialist and he reveiws films for free. Goodluck.  And ur daughter seems to have what she needs themost a great advocate! Keep it up! Dnt ever quit!!! U will sucseed!
Molly

[selmaS]

Hi...well first look at drs  where u feel u may be able to go to if u like them if u can not get one in ur area to listen to them.

Next, be sure they work with ur insurance.....b4 u get ur hopes up.....do all that b4 u send ur info off....if u know where I am going with this....

I sent my info along with forms to TCI, but intended to be a patient, so I did not have to pay nething....they will not set up an appointment if they do not feel chiari or a related condition is the issue.
Dr Heffez in WI will review MRI's and Dr Oro in CO will also review them....

I am familiar with Dr Oro, but that brings me to the next issue....u have to find a pediatric chiari dr...Dr Oro does not see children....

Dr Frim in Chicago has a very good rep and see kids....

I am so glad she is getting a reprieve....

I hope what I posted did not confuse u more
"selma"

[turk911]

I appreciate your suggestions and have already decided I will do these tasks.  Are you familiar with specific Drs. from others' posts on this board that do distant consults?  I have had a chance to roll this around in my head for a while and I just feel like I need to complete this cycle for her. This HA episode has been the worst ever and it seems that there must be an explanation.  If she has elevated pressure and her optic nerve is normal, it must relate to something other than hypertension...I have no idea, but simply feel that I have gone through all this, I will have to finish it. It seems that she is finally getting some relief.  Today its only a 1 on a scale of 1-5...but that varies from day to day it seems.

It simply doesn't make sense the elevated pressure and the HA, if its not related to elevated pressure (pseudo tumor) then it must be due to something else, but I keep hearing asymptomatic...perhaps the drs I have seen are missing something.  I was telling my husband I was going to consult with another dr. simply to have this confirmed by another source.
  
Thanks so much I appreciate your valuable comments!

[selmaS]

Shannon this rings true to all of us and is one of the reasons we say take someone in with u...this being ur child is like u r the patient and it is diff to think clearly in the visit...take along someone that can keep on point to ask the questions.

Make copies of the MRI's and send out to other chiari drs for an opinion.....some do it for free while others for a nominal fee, but u will at least get some other opinions from chiari drs....and send both for comparison...this way u send a list of typed questions....no way to get lulled.

Go easy on urself...the white coat can intimidate and they can make our questions sound unfounded and we tend not to ask all we feel we wanted to....

Re group...list ur questions , make copies and send them off to see what u can find out.

I also want to let u know, during a flare up of symptoms a chiari HA can last long like what u r saying...a typical chiari HA can be from a cough and not last long, but as it cycles  and u r in a flare one can last for a few weeks, I pray her flare is  about up and she can have some relief.

Hang in there
"selma"

[turk911]

Well, the spinal headache has lifted.  Our visit at the University of Michigan was...o.k.  I took a copy of the recent MRI and the Dr. basically said that her headache is not from Chiari typically those headaches are short lived and are caused by laughing, coughing, sneezing, etc. Not a long term headache like this.  He felt that chiari surgery would not relieve this type of headache.  Oddly, he did not make reference to the MRI at all.  He simply said, chiari patients have surgery as a last resort and when all else fails to improve life.  He showed no concern over the CSF flow or anything at all. When I asked him, he said, there was some flow on the other side and that many people have none. While I didn't notice it at the time, he did not assess it for any significant change compared to the last one.  In fact, he seemed to wonder why we were there at all.  When I explained all we had been through to figure out this headache, he suggested a neuro opthamologist to further rule out pseudo tumor.  When we discussed the spinal tap, he questioned the validity of the opening pressure of 28 because she was not put under general anethetetic, which in his opinion is the only way to get an accurate reading...she was sedated, which the report indicated, but apparently not totally out.  Our NL here never questioned such a thing.  Nobody has.  He looked in her eye to see the optic nerve and did not note anything to indicate long term inter cranial pressure, but suggested we see a neuro opthamologist to rule it out completely.  Its good news that they don't want to do surgery, but at the same time we have no answers. Her poor little head still aches, as it has since Halloween night!  I have no reason to doubt this doctor, but I am mad that I didn't ask him to compare these MRI scans and better explain the flow study and what it meant.  For some reason when I get in there, I get lulled by their speel and its only later that when it all settles in that I wonder about things.  All in all, it seemed that he had no idea why we were there because they clearly feel its not related to chiari.  I guess I wonder if this rings true with anyone else's experience and what you may suggest, if anything. THanks, shannon

[selmaS]

Hi...I  know u r at ur wits end...I am so sorry the Nl is not explaining what is going on..it is possible that the NL does not know enuff about chiari to be giving u info...and y he is not filling u in....but most NL  DX and send u off to a NS when they feel that is ur best option....

The NS will determine if surgery will restore flow  or if  meds will be the way to go...the NL does not make this decision.

Since she is on meds, it may be that they r not working to control the CSF and y u r on ur way to the NS.

If she indeed has a spinal HA from a leak, what were u told for her to do to help relieve it?

I was always told- lie flat....drink plenty of water and some caffeinated bevs as they can help.....it should help it seal itself in approx 4 to 5 days after that they would try a bloodpatch to seal the leak....

Do have her rest...and hang in there : )

"selma"