Pregnancy and Chiari 1 Malformation

[irish_gypsy85]

I am 27 almost 28 and I have Chiari 1 Malformation. I am also pregnant. This is my second pregnancy. With the first one I did not know I had Chiari. So i had a very rough pregnancy. I was sick the whole time, I couldnt eat, and I was leaking amniotic fluid. (sorry I can t spell.) They had to induce my labor and it was awful. But I had a healthy baby boy. I had my son naturaly and after he was born I got worse. Now that I am pregnant again I am haveing a lot of issues and my family is not being very support of, well atleast my mother and stepdad. My husband understands and is very sympathetic. Thank goodness for him.
             I have been searching for books on Chiari and pregnancy but I am having a hard time finding any. If anyone knows the names of some good books or even websites I would really apreciate it. I could use all the help I can get. And any medications to help with the symptoms would really be aprecated as well. I'm only about 10 weeks right now but it seems like everything is getting worse already. Please Help!!!!!

[selmaS]

  Hi I am so sorry that ur Drs said all that to u , it appears they really do not know how Chiari can affect  us.

B4 u try to get to a Dr, contact one and tell them what is going on and see if they will consult with ur Drs, that may get u the care u need, and u will not have to go newhere....

It is worth a shot,....good luck and do keep us posted <3

[irish_gypsy85]

they all just told me that there is nothing they can do and that they have no advice for me. that my symptoms are not from the chiari and that i pretty much get to suffer through my pregnancy and that it is perfectly safe to have the baby naturally and that there is no risk of it affecting the chiari.so i am looking into seeing one of the doctors on the list you all provided. there are a few in north Carolina and in Pennsylvanian. the only thing i have to worry about is travel and if my insurance will cover it. if i do go i will have to go on my own. my husband cant take off work because it is our only source of income. he wants to be there but i told him no. and i dont have any family that could go with me nor friends. so i will be on my own.

thank you all for your support and help. i just wish my doctors would get their stuff together to give me some medication to at least give me some release of these symptoms. the only thing that is helping is the zofran and at least i can eat but i cant ride in a vehicle or anything like that. i cant drive. its just making my life very hard to get help and to enjoy being pregnant and spending time with my family. i hope i can get in to see a doctor that will actually help me.

[selmaS]

  I am so sorry u r getting the "royal Chiari run around"...this happens when the Dr u see is not well informed or experienced with Chiari.

U should have been told that a C-section is suggested so u do not push, as it can cause and or trigger more symptoms....

They will want to monitor u during delivery....there are things they can take precautions for and I agree there is noting they can do for ur Chiari until  u have the baby, but they should inform u how to do that safely !!

There is a nurse that wrote articles on this topic Diane Mueller....if u google her name and pregnant with Chiari  u will find info.

[Sexybare]

I am so sorry. There's a program called mercymedicalairlift and they flew me to my appts. Find a chiari specialist out of town, make an appt, then look up mercymedicalairlift online and they will help u get there. U need a true specialist. U shouldn't have to suffer, especially thro ur pregnancy. I wish I could help u more. Hang in there sweetie....hugs,,,,Dana

[irish_gypsy85]

i am now about 16 weeks pregnant and i keep haveing more and more issues. my obg sent me to a neurologist and he said he can only help me with my migrains if my obgs are willing to try meds. he then sent me to a neurosurgen and he told me it would be fine to have the baby naturaly, and that none of my symptoms are from the chiari. but none of them did tests or anything. they just took the list of my symptoms and said that there is nothing they could do so we asked for a nother opinion, that neurosurgen didnt even see me. he said that there is nothing that they can do until i have the baby. they cant even do a mri.

i dont understand why all the doctors say there is nothing that can be done that none of my symptoms are from the chiari when the first neurologist i saw that actually found the chiari said it was. and all the doctors i have talked to online say the same thing. i dont know what to do and my obg docs. dont know what to do or what to give me for my problems. we cant travel out of state at least not very far. i am unable to drive. my symptoms have gotten so bad that i cant hardly go anywhere. it makes me so sick just to get up and walk around the house. i really need some help!!!

[selmaS]

  So glad ur OBGYN is offering to help u too,.....and I hope u continue to post on how u r doing...just know we r always here : )

All the best <3