Can pregabalin help Chiari type 2 headache?

[Nannynet]

My daughter was diagnosed with type 2 Chiari Malformation 3 years ago. She’s terrified of surgery so needs a good strong pain relief. She’s on amptripyline but needs something else. She’s in so much pain.

[selmaS]

Hi and welcome to the Chiari forum.

May I ask how old your daughter is, and why it was just DX 3 years ago? If she has type two, this should have been seen at birth.
Pregabalin is a generic of Lyrica and the possible side effects are similar to what she is dealing with as symptoms of Chiari so, I personally do not see how it could be effective.

Does she have a true Chiari specialist, and has she had other related conditions ruled out?

[Nannynet]

She’s 21yrs if she and has a pseudo meningocele and other related conditions since birth. She’s had a specialist since birth. She’s tried so much pain relief. Her surgeon has said maybe consider surgery now, she is terrified, she has 2 young children.

[selmaS]

Ok...so they were aware of her condition, just did not DX the Chiari at birth?

I would strongly suggest getting a true Chiari specialist and seeing that ALL related conditions are ruled out, and she's ahead of the game in that she is aware of a few issues she has already.

Surgery can help reduce pressure, but it may not take away all the symptoms...there is no cure.....so having the right Dr is key!

If she does in fact have surgery she will need a lot of help post op.....and it will be more then a few weeks worth....as there is no lifting of anything over 5 lbs....little ones don't understand this....so, she is understandably concerned for how things will be post op.
I did not have the same issues she is facing, but was not DX'd  until age 48, surgery at 49 and it took several years post op to see and know all the benefits I gained from having the surgery.Everyone is different as to how they respond to the surgery, as i depends on what else they have in addition to the Chiari.

Best results come from the Best Drs.

[Nannynet]

Thank you so much for replying to me. I feel better myself having foundthis forum. My daughter won’t join anything like this but I do pass every bit of information I receive onto her. I believe we have a good n/s she’s been with him since the age of 6. I myself would like a second opinion but wouldn’t know where to start!! We live in London and she attends kings college hospital. I will try to find information. Thank you once again.

[selmaS]

The UK has a list from The Ann Conroy Trust that has names of Drs that specialize in Chiari.....they may be able to help.