Pseudomeningocele??

[jensma]

My 5 yr old is 2 days shy of her ONE year post op anniversary and it was just brought to my attention that the "knots" in the back of her head (appeared 6mos post op) are NOT NORMAL as the nurse practitioner had told me......anyone know anything about pseudomeningocele? i have looked it up but still am not sure! should we seek a second opinion? i was told that she no longer has Chiari as well from the  same nurse practitioner, which my husband and I have tried for figure out for a couple of months now how she no longer has it......
HELP PLEASE!!!!!!!

thanks
jessica

[jensma]

She isnt taking any type of meds right now.  she takes is miralax & growth hormone meds but as of right now she isnt on GHT bc of a change in meds.  The NS office said to take her to PCP, I did that yesterday and the PCP didnt feel anything he told me that i was feeling where her bones had close (the sutures)- he does want to send her for neurologist appt to make sure she isnt having absent seizures-i do not feel that is what is going on!

Took her back today to PCP bc last night washing her hair i could feel the are back! Had my family member come in and she could see it sticking out!!!!!!! I am VERY UPSET & do not KNOW what i should do....my mind is driving me insane! part of me says go and take her to the "big" ER and dont leave till she has MRI and then part of me says no that i am just over reacting bc she hasnt seen NS dr since march and the yr anniversary just past.......

[selmaS]

  She should deff be seen...something is not right...even if it  is her meds...what is she on right now?

  It is good that the syrinx is shrinking...most will with the surgery.....


Keep us posted on what the Dr says : )

    "selma"

[jensma]

Thanks for your input!!!! It helped me feel better about my GUT! I really am glad that I found this site!

Thanks
Jessica

[jensma]

I do know that her syrnix HAS shrunk ALOT ! At her 3month(in Dec.) ck up he decided that she didnt need to come back for a YEAR!  Then we ended up there for the "knot" in march and he told us that it looked great almost completely gone! From there he said she didnt need to come back till March 2012!

We went on a lil mini vacation this weekend to celebrate her 1 yr post op, we went to Dollywood in Pigeon Forge TN. While we were there Jenna has a few headaches, a nose bleed, and COULD NOT get the word hotel out....she LOVES going and staying in a hotel and has used this word a million time but it just would not come out for her. She tried numerous times, with me telling to try again each time and finally my husband said it for her and she said yes mommy hotel. She was very frustrated that she could not get that word to come out...that was not the first that happen either!  Also while we were gone she told me "mommy my brain feels like my injection  needles are going through it".....do you know how bad i felt for her!!!!???

i am going to email our NS and tell them about all the headaches, the very weird blinking that she is doing, how the pseudomeningocele has changed and that her brain has felt like it has needles in it and if they do not at least want to check her out I am taking her somewhere else!!!!! Any suggestion on where to take her?

THANKS SOOO MUCH!
Jessica

[zygy2]

Hello hello-  So sorry to hear your daughter is having such a difficult time!  It is had enough to be an adult dealing with all of this, I can't imagine being a child or the mom!  After my 1st surgery (decompression, open dura and removal of the back of c1) I thought something was wrong but they kept telling me everything was done, dr. did a great job... and so on... I finally went to another NS, first thing he did was order an MRI and he found the leak (pseudomengecele).  It did cause symptoms to be about the same as before surgery.  I had felt great for a few months and then crappy again, in addition I also had headaches that were positional, caused by movement and that was new.  You really need the updated MRI though to see what is happening.  In my case you could not feel the pseudo and he said that was a bit weird but it was clearly there on the MRI.  If you are not getting the help you need than you have to keep searching for someone that listens.  It is a very frustrating condition!  Best of luck to you and your daughter!

[selmaS]

  Well that fact she is post op I have no idea, but I know I got hand cramps when I would write....I thought I had carpal tunnel it was so bad....so I would not discount the cramping, but the daydreaming could be fatigue......those of us with chiari just can not do a "typical" day that everyone else does...we do tire more.

  Her syrinx was very large, do u know if it shrank post op? Has she had her 1  yr post op MRI yet?.....what did the 6 month MRI show?

  Was ur DD checked for ehlers-danlos?, Tethered cord?Sleep apnea?

  I know for me, and I am a heck of a lot older that ur precious little one, but I tire easy, and I still get HA's that can be random...but she is just 1 yr post op...I did feel stronger at 2 yrs post op than I did at 1 yr.....it just may be too much.....

JMHO

  "selma"

[jensma]

We were totally floored by being told she no longer has Chiari....still cant wrap my head around it! I do not understand it at all! I thought decompression was a band aid for Chiari!!!  

Also we were told  that the knots do not hurt or cause pain!!!!! She has complained about her head hurting but there are times like clean up that she suddenly develops a headache so we really do not know what to believe! I can tell the difference SOMETIMES! Jenna is a very good actor! ha ha

Jenna also had a syrinx that went  cervical -lumbar from what i understand and seen of the MRI (&can remember) it was a pretty large syrinx .  There are many days when it seems that she so tired and worn out. Most of the time she is not one to complain unless it gets her out of chores! She sometimes tell me about the headaches or the hand/leg cramps that she will get.

  I honestly feel terrible because I just went with what they said!!!  BUT they are the drs and I thought that they knew what they were doing! Her teacher sent home a note yesterday with homework that she didnt finish in the class  which was simple coloring! The note said Jenna seemed to not be able to focus enough in class to finish her work! Jenna had told me numerous times that her hand cramp when coloring - today i spoke with the teacher on the phone and she said it seemed as Jenna would be daydreaming.

I am sorry if i am rambling but I honestly thought everything was going ok with her now I jsut dont know!!! She is my EVERYTHING!

[selmaS]

  Hi and welcome to the Chiari forum,.

  We do have a few members that have had this develop post op as well, it is a collection of CSF fluid which can cause pain and symptoms similar to those  most have pre op.

  I really do not understand how u can be told ur child no longer has chiari, she may no longer have a herniation or a CSF obstruction, but she still has chiari, that is my opinion from all I have read on this...there is no cure just treatments to help slow progression and restore CSF flow.....

  I would deff get another opinion and be sure it is from a true chiari specialist.

  Has ur DD complained about the knots or other issues since surgery?

   How does ur DD feel?

     "selma"