arnold chiari post op what to expect?

[tammy1996]

My 15 year old daughter had surgery on March 2 2012.  She is having headaches almost daily. She describes them as a bad pressure in her head.  Sometimes with dizziness.  When we saw the NeuroSurgeon he said it is just part of the healing.  I am not so sure.  I have been trying to see a neurologist at U of M but it is a process.  I would like some answers now.  If anyone has had this surgery I would appreciate any information about your post opp recovery and symptoms.

[selmaS]

  Hi and welcome to the Chiari forum.

Thanks for sharing part of ur chiari surgical journey with us.....

and I do hope u continue to post ur progress with us...many of us use the journal to record updates as we progress so we can look back and see just all we may have forgotten and so the info is there for other members to read.

Hope u r doing well.

[falgunkanani]

i had a decompression surgery on jun 21, 2012...after which i was discharged in 3-4 days...since them i m resting at home for about a month...slight headaches  are still there and sometimes nerves around neck pains...but doc said that since muscles and tissues were cut around to remove C1 spine and now they are growing..this pain will be there for few months....falgun

[selmaS]

  HI and welcome to the Chiari forum.

  Not all Dr's like to think that their patient has a leak as it may be a reflection on them...or that is how they see it...but, it can also be that the patient is rejecting the patch for what ever reason, (could be the patient has EDS) and that can account for infection or a leak.

If the first NS was not a true chiari specialist they may not recognize what is going on,.

Ask ur DD if she feels the same as b4  surgery or worse...if the issue is if she is upright of if is it upright and laying down....

  Leaks r worse when u change position like from laying to sitting.

     Push for the Drs to see her and check her temp to see if she is running one.

  Keep us posted

[AnnieDear]

I had my decompression on March 16, so I'm 3 weeks post-op. I felt a bit better after about 2 weeks, but yesterday and today have been very difficult. My head just hurts. And I've been getting dizzy and nauseous again. My NS also said that I am doing well and that he would help me try to manage the symptoms but that it would probably be a good 4 months before I really started feeling "good." and that it would be a roller coaster ride there with lots of ups and downs. My NS is Dr. Trombly at Univ. of Miami.

I hope that your daughter gets some relief. I was told to use lots of ice packs and it does help me, as does using a recliner and not lying flat or putting too much pressure on the back of my head. My thoughts and prayers are with you guys.

AnnMarie

[hannahsmama]

my daughter is 8years old she had surgery on feb. 21st.  she was fine for about 2 weeks then she had horrible headaches, a bulge at the incision sight and vomiting.  we were back in the er twice and they started her on steroids.  she is currently still having headaches and low grade fevers.  the ns said he would go back in and re patch and clean it up.  his partner disagreed and said if she were his patient he would wait bc sometime these  things heal on their own.  we obviously don't want to do surgery but, we don't want to prolong it if it is the only thing that will work.  
i hope your daughter gets some relief soon.  

[Sexybare]

Hi, i want to tell you that i have recurring chiari. I was only good for 2 weeks post op. Then the pressure ha came back. My ns at u of m told me i was fine too. He said im sorry your in so much pain we can see you, if you want but your healing lol. Ya right. I sought out a second opinion from a true chiari specialist and 8 mo post op find out my tonsils are still blocking my flow. Not totally, just mostly. My prssure ha came back after 2 weeks along with all my pre op symptoms plus more post op.

[irislita]

Hey i can only tell u that the first 2-3months post op were kind of hell.i got dizzy and was so in pain.healing is a crazy thing.how are the ha of ur daughter???it could be nerve damage