In April I had a pituitary tumor removed after being told that was the cause of all my symptoms, needless to say the only improvement has been my vision. My 6 month post op MRI showed Chiari (5mm), which was somewhat a relief and somewhat just another knock down because I'm pregnant.
My OB doesn't seem too sure what to do, obviously pushing is an issue due to the pressure in my head and the increase of the headache that hasn't gone away in 3 years? My choices are vacuum delivery or c-section, I'm thinking c-section. Does anybody have any advice?
My neurologist is scheduling me for an EEG since testing is limited while I'm pregnant. My neurosurgeon wants to see me after I have the baby to do an MRI with contrast and whatever other testing they need to do.
I'm also unsure of how to make people get it. All these issues.. headache/neck/shoulder pain, unable to concentrate/the fog that I'm in, the exhaustion, etc.. we were told they were because of the pituitary tumor and now that's not the case. Nobody seems to understand why I still hurt or what chiari even is. Lifting things amplifies my headache pain, yet the response from someone was "it's just because I'm focusing on it now" when in reality it's because I know what to look for now that I have a valid diagnosis.
I just wish people understood and I don't know how to explain it so they do. I just feel alone.
If you go to www.conquerchiari.org you will find lots of info on how to explain Chiari so that people will understand what you are going through. There is also info to share with your physicians who may not know much about Chiari. You will find that seems to be the case with most medical professionals unfortunately :( I cannot give any advice on delivery. I've never heard of a vacuum delivery. Is that more dangerous for you or the baby than a C-section? Is this your first baby?
I've known several other people with Chiari who also have pituitary problems/tumors. Some professionals do say they are related.
I'm glad you found us here and I hope we can be helpful :)
It's my second baby. C-Section is more dangerous for me as far as complications, but a vacuum is more dangerous for the baby as far as complications go. They said basically they would induce me, give me a serious epidural so I do zero pushing, let my body do the work, and when the baby gets down far enough use the vacuum to pull it out the rest of the way.
That's interesting to hear that you've heard of some people who have had pituitary tumors, I'll have to look into connections. I feel kind of left out in the cold to figure things out because my neurologist is shamefully uneducated on Chiari and my neurosurgeon who has dealt with Chiari has basically said it's pointless for me to drive 2 hours to see him because I'm pregnant so they can't do anything for me right now. The neurologist's PA told me that it couldn't be Chiari since the radiologist report didn't actually say Chiari in black and white, only said the tonsil was out 5mm.. and that my symptoms aren't seen in Chiari Type 1!! It was EXTREMELY frustrating, needless to say when she talked to the neurologist he said it is Chiari, hopefully followed by having her do some serious reading on the condition.