Decompression surgery

[Tiana1987]

So I had the decompression surgery 2 years ago and I don't think it helped. So I have a few questions
1: are there other surgeries besides the decompression?
2: I get seizures do any of you?
3: what are good websites about chiari?
4: for those of you who have symptoms what ones do you experience most besides the head ache and neck pain?
5: how do you tell your neurologist about you're pain? My pain can become so bad that I actually pray for a seizure or to pass out. When I tell my neurologist about the pain she gives me a new migraine medication. If the last 5 didn't work I don't think any will she will not accept the fact that it's not always migraines. I actually looked her in the eye with tears streaming down my face saying I give up. I just give up and walked out. I need a new neurologist i know but how do you get them to understand the amount of pain you are in?

[selmaS]

  Hi and welcome to the Chiari forum.

There r some issues and conditions that can occur post op....have u had a MRI post op? Some develop ICP , some epilepsy, seizures,  cerebral ptosis....

We all have a diff experience, although similar.

I would get a MRI, check for EDS and cervical instability, ptosis...and see what is found....u deff have a post op issue that is not been addressed.

[Viva001]

I think I was a little Too accepting, lol.  Not that I was well, but I was lucky playing Russian roulette for a long time.  Not sure how & why acupuncture worked, for years, but it delayed the inevitable.

[linnielou232]

I am just 2 yrs post op also and I still experience Chairi sypmtoms. When over doing it I experience the vertigo, HA's but not pressure Ha's, stress will bring this on also.  Have your tried Keppra.  They have me on this and it seems to help and it helps with seizures also.  I take it for Fibro.  So sorry to hear your having all these issues, but I just accept it and try to do what I can do.  
Linda :)

[Viva001]

I had a laminectomy first, 12 yr ago, because that was "obvious", & then this yr I was Dx'd w/Chiari malformation (decompressed lasr wk).  Im trying not to think about what my life might have been like if I just had 1 surgery, cleaning up the deformity.  They know more now, much more.

Many people here have more than 1 surgery.

Can you go back to the NS to look at your radiographs w/new eyes?  Or get new ones?   My NS said that 50% of the time there is compression in the neck as well as in the skull.

[irislita]

Hi tiana.i really undeestand u.its sometimes really frustrating.
Let me ask u is ur ns a specialist?what kind of surgery was performed exactelly.decompression...with dura opening?and laminectomy?
Have u been checked for any craniocervical issues as they can be causing almost all the symptoms too.i had surgery by a non specialist...and now found out i have craniocervical instability which might be even worse after decompression.i am having still chiari 0...and just now found a specialist who is running all the tests that have to be done.