Post decompression - 4 years

[mama_03]

My daughter had a migraine last night.  Her meds didn't help.  I went to rub the back of her neck and the side of where she had her surgery was swollen and squishy.  As soon as I touched it she screamed and said it felt like her head exploded.  Went to ER and they did a CT scan.  They did compare it to her last scan and everything looked normal.  The ER dr. could feel it and as soon as she touched it the same thing happened.  Do you think this is scar tissue built up and causing the pain?  Getting her an appt. to a new neurologist due to her age.  Her pediatric won't see her due to age now.   She had her decompression in 2010.  This is something new that has never happened before.

[Elisaandbucky]

I think the most difficult thing for you is to see/hear your daughter's pain and not know what you can do to soothe her. Wasn't it so much easier when our babies were still in the womb? There was a sense of control in that for me.

I will pray for your daughter's comfort and for your patience to get through the weekend so Monday will come. I hope you can get some answers at this visit.

[mama_03]

Yes, she had a dura patch and also it hung lower than what the MRI showed.  They ended up shaving off C1-C3 if I remember right.  She does get wetness in the one ear.  Her neuro was informed of this a couple of years ago but he didn't think it was anything.  I've always thought it could possibly be a slow leak.  I will get ahold of the neuro surgeon Monday.  Thanks for the advice.  Have a great weekend.

[selmaS]

  Hi and welcome to the Chiari forum.

If it was not 4 yrs ago, I would think it was a CSF leak....and it could still be one....I wonder if she had a slow leak all this time...has she had any symptoms up until this happened?

Also, when she had her decompression did she have a dura patch placed?If so, what kind did she have......

You need to call the NS that did her surgery to take a look at her....call them asap.

Keep us posted on what you find out.