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Chiari Malformation Community
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Avatar universal

9yo daughter presenting w/ symptoms

Hi all - my 9yo daughter has 10mm/11mm chiari, first decomp's Oct 2010, repairative surgery (removal of scar tissue in spinal cord) 11/2014, for the last 8 or 9 days has been experiencing vertigo, temp control issues, arm and leg pain on right side only.  We've discussed w/ our neurosurgeon's nurse practitioner (her daughter has chiari as well, so she's very much familiar w/ this).  We are not sure if what she has is caused because a severe cold she had 2 weeks ago (my sons both had it, and she caught it), or if she is, for first time since 2010, experiencing chiari symptoms.  

We've been, as per doctor's orders, giving her tylenol then advil every 3-4 hours for the last 2 days.  It's actually been 5 days but she was vomiting as well until 2 days ago.  She seemed better yesterday, but today she was again w/ vertigo and wasn't getting off the couch for anything, when she did (to get a kleenex that my son had moved to the table), she was very unsteady on her feet and nearly fell into the kitchen chair.  But for themost part this afternoon she was doing really well.  After she took her Advil dose this evening her head began to hurt again, and the hot/cold temp issues again.  She pretty much fell asleep after that, an hour earlier than normal.  

Some people in the forums here have discussed what meds they take...  others have discussed homeopathic route.  I"d so appreciate to hear back from some of you how you handle treating your symptom flare-ups?  One woman (jiggler23? i believe that was her name) was discussing oils she uses that help immensely.  Can anyone give me any info on whether they take B6, B12, Magnesium, or use oils?  Or do you mostly rely on Rx's.  Am sure that everyone's different, and symptoms all differ such that we all have to find what works best for us... just wondering bec we've never had to deal w/ symptoms before and now going on 9 days of this, we are exhausted and hoping for solutions...  Doc's office says she can start Topamax (no, from what i'm reading, that drug is worse than the symptoms!)...  we have valium for her here, but haven't given it to her bec i'm afraid it will only mask her dizzy symptoms?  How do you all take care ofy your symptoms (sorry, tried to make ths short! :)  THANK YOU for any input!!  
4 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi, I am glad you posted a new thread as some of these issues may be related to Chiari but not be Chiari directly....

Was a syrinx ruled out. tethered cord? ICP, POTS, Ehlers-Danlos, CCI ?

Many of the related conditions also have the same symptoms so it is difficult to know which symptom is from which condition....

When it comes to herbs and natural remedies....still talk with her Drs to know if any might pose an issue for her....as they can interact with other meds she may be on.

Since your DD had a recent surgery and is still having issues, have they done a post op MRI to make sure there is not a CSF leak?

Or an issue with the surgery site itself.....what type of dura patch did she have?
Avatar universal
Thanks Selma!  she's had a few full spinal MRIs w/ and w/o contrast, and she only presents w/ chiari and syrinx, nothing more.  No meds, she's prior to this last few days unsymptomatic (one of the lucky ones).  We were confused bec our sons had flu, and she did have a fever a week ago, but that was gone by the following day.  I am wondering (as are the neurosurgeon and NP) if her chiari site became inflamed from the flu/illness (looks like severe cold, that's it - runny nose, headache - but ONLY on the boys, Kaite only had fever and nothing else, then she came down w/ vertigo and arm pain, vomiting with dizziness.  We do have MRI scheduled for follow-up to post-op, thats on the 26th of Feb.  She seems much better again today, but still w/ vertigo and occasional arm pain. Nurse Practitioner (NP)'s daughter had the same thing (and she's also chiari kid), and doc said take the tylenol & advil intermittently, so we've been on that for 3 days (6 days really, but first 3 she vomited up all meds).  NP also says if chiarians get flu, symptoms are much worse, last longer, at least in her daughter's case...  so we are thinking it was flu they had, not cold...  Now one son is home w/ sore throat and very productive cough, keeping the two apart is no picnic :)  but at least she's laughing again today and seems to be feeling better.  BUT thank you...  I'm still v interested in how others approach their treatment...  with the full understanding that we take direction first from our docs, and yes, i'm very well versed in meds, i'm a bioeng - jnot that that has helped me w/ this malady, this chiari stymies...  
620923 tn?1452915648
COMMUNITY LEADER

  Yes it could be the flu or a virus of some sort and it will affect those with Chiari differently....my NS suggested those with Chiari get the flu shot.....I am leary of them for myself as I do not get the flu often and someone I know that gets the shot all the time gets hit with the flu a couple times in the season....strange....plus this yrs strain of the flu was not one covered by the shots given....

I hope your Katie gets to feeling better soon <3
9432311 tn?1432825085
A day has passed since your last comment and I hope today your daughter is feeling better. I also take Tylenol and Advil intermittently as per my PCP's recommendation. It does help for the headache; however, neck pain is still an issue. I also am skeptical about the value of a flu shot. Every year that I did get one in the past, the flu shortly followed. I quit getting them a couple of years ago and haven't had flu symptoms. I just hope I am doing the right thing.

Definitely consult with you doctor before doing this, but I have taken 800 mg ibuprofen twice on days of a lot of pain. I have a prescription, but I think taking 3 200mg Advil is equivalent. I do know that you cannot do this dosage more than twice a day. I hope you can get some rest yourself. Taking care of one sick child is challenging - but it sounds like you are caring for all of yours. If at all possible, get enough rest so you also do not get sick. Feel better, all of you.
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