Avatar universal

post chiari type 1 surgery

I had my surgery dec 2008 and was without headaches for two months after surgery.  I discontinued pain meds after two weeks after surgery.  Headaches returned in Feb 09 from pressure from bending over as before surgery.  I may have pushed myself too hard as my father had broken his hip and needed constant lifting.  Now it's almost a year later and headaches are continuing usually later in the afternoon early evening.  If I lay down flat the HD usually will go away after a few minutes. My neurosurgeon said it has nothing to do with chiari as he fixed that problem.  This confuses me as the symptoms are the same as prior to surgery.  please help.  Diane Hamilton
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992677 tn?1537668903
Hello Diane,

I'm no expert, far from it. The first question that pops into my head is
"What is this NS basing this opinion on? Have there been new MRIs
done to verify his hypothesis? Or is this just a case of 'I'm so good
that I can fix this unfixable defect within all Chiari patients.' "

The Wolf
Helpful - 0
1041839 tn?1278681846
Well I'm DEFINATELY not an expert.... but like wolf I'm wondering about this doc
Is he a chiari specialist.... because there is no cure for CM and for him to say he fixed that problem concerns me. Maybe its not related to CM but if it feels like it did before..... As my daddy says, "If it walks like a duck and quacks like a duck.... then its probably a Duck!"
Helpful - 0
Avatar universal

Hi Diane,

Has your NS or PCP tried you on Topamax?  Researchers at the Chicago Institute of Neurosurgery and Neuroresearch found it very useful in the particular type of headache that chiarians have, they are different from migraines, cluster headaches, etc.  Even those who have been decompressed can be helped.  I still get headaches as well but they are much improved by Topamax.   If you haven't already tried it it may be worth asking about. I hope you feel better soon!

Helpful - 0
1071283 tn?1256289486
hi,sound like you have been having the same symptoms as myself i had surgery in dec 06 and after havin back treatment coz i thought thats why my head was hurting due to tension and tiredness im now thinking its due to CM it seems to be worse after workin a nightshift..i hope to get an appointment with a head specialist soon to discuss the best option as it stops me doing alot of things one of which is going out and having fun as once it starts the pain just builds untill im sick...do u have this??
Helpful - 0
620923 tn?1452915648
HI and welcome to the Chiari forum.

I have to agree with several posters in that ......how can the NS know for sure if he didn't do an MRI to see what is going on.....chiari can re-herniate....and u can also develope othe related conditions like syringomyelia or Pusedotumor cerebri.

Please see a chiari specialist and get a complete check up.

Helpful - 0
Avatar universal
I had the Decompression Surgery in June of 2011.....I was headache free for months, then thought I was going crazy when the headaches returned.  The surgeon said everythin was done correctly and sent me to one of the Neurologists in his practice.  This man put me on Topamax and that was the worst months of my life.....the headaches seemed to get a little better, but I ended up with 11 of the side effects of Topamax.  I finally "weened" myself off of it, which you have to do or you will get worse, and changed doctors.  Now, here I am, over 2 years later, and I still have awful headaches.  Just got a new MRI and the doctor told me this morning that she wants me to see the surgeon again to see what he says because the "tonsils" are 1 mm longer that before.  I am just so tired of it all.
Helpful - 0
620923 tn?1452915648

  Hi and welcome to the Chiari forum.

I can understand and relate to ur frustrations.....

May I ask, what type of decompression u had....was the dura opened? Did ur Drs rule out ALL related conditions?

It is possible to have ICP post op as a new development or something that was underlying...which can cause the tonsils to continue to herniate.

Have u had  a CINE MRI to see if u have a CSF obstruction?

  Hang in there.
Helpful - 0
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620923 tn?1452915648
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