Chiari vs pregnancy

[Kfelbz]

Hello, I am new to this form and haven't seen anything recently addressing this topic.
I am 28 years old and had decompression surgery for my chiari/syrinx almost 2 years ago by an amazing surgeon in Dr Mark Iantosca in Hershey, PA.
My main sx are headaches and 'concussion like' symptoms that are decently controlled by meds.
My question is that i am newly married and both my OBGYN and PCP have told me that there are no safe medications for me to be on for my HAs while trying to get/being pregnant.
I have been on HA meds for over 3 years and have tried going off pre and post op with no luck, always returning HAs and pretty severe.
Has  anyone dealt with anything like this before? I can't find anything on it anywhere, obviously! Just wondering if anyone has been through a successful pregnancy without symptoms either due to some med or alternative methods (massage, accupuncture, etc.)

[selmaS]

  No worries Katie....there is a nurse that works with Dr Oro a Chiari specialist...this nurse has published articles on Chiari and pregnancy u may want to google her name and see if she has a way to help with HA's while pregnant,....her name is Diane Mueller....but do include Chiari and pregnancy with her name to get the info condensed.

I was on TOPAMAX and did not have that issue.....just the 2 week adjustment time, after that I was fine.

We r all different...so what works for one may not work for someone else.

Keep me posted what u find out.

[Kfelbz]

Hi Selma,
Thanks for your response. I had the HAs leading up to surgery, and that is originally how my Chiari was found, so I don't believe that they are a result of the surgery.
I have tried numerous meds, but am currently on Cymbalta and that has been the best with helping with HAs and with the least side effects. I tried Topomax and it gave me pretty severe depression.
I will be trying to cut down my dosage (which is only 60mg as is) because I will obviously need to be off of it to get pregnant, but I still have HAs even on the 60mg.
I will see my neurosurgeon and an MRI in early August as my yearly post op F/U. Before then I will now look into your suggestions and question my doctor, but I do believe that it is the same type of HAs that I was having prior to surgery.
Thanks,
Katie

[selmaS]

  Hi....I saw u went to Hershey Medical for ur decompression surgery...with the HA's post op have ur Drs looked to see y u need meds and what is going on if it could be something related? Many develop ICP or POTS post op and some have EDS and can have Cerviocranial instability which can cause HA's post op...so sometimes it is a matter of treating the related condition to help with the symptoms u continue to have.....

What meds  are u on ...TOPAMAX?....

Have u had a MRI recently to see if there is something causing the HA's?