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 and welcome to the Chiari forum.

Sorry I am not sure we have anyone currently on the boards that went to the CIB...... I would strongly suggest you educate yourself on Chiari and ALL related conditions so when you meet with a Dr you will know if they may be the right one for your son.

Please keep us posted on your progress on locating a Dr and your son's health and treatment.

[selmaS]

  Sending prayers ur way...<3

[irish_gypsy85]

thank you. im at home now and i hope the little one waits at least a few more months. im only 22 weeks and it was really scary. so i am going to do what the docs. say and hope for the best.

[selmaS]

  Hi,,,,I have not heard that Chiari could do this, but I really  do not know for sure....

I pray all goes well and please keep us posted.

Wishing u a safe delivery <3

[irish_gypsy85]

ok i had a major scare this weekend. i woke up Friday with really bad back pain so i went to my obg and she checked my cervix and i was 4cm. dilated. so she sent me straight to the er. they maged me and checked it again in an hour and i had dilated 2 more cm. but no contractions. but they thought i was going into labor. so they admitted me. they kept an eye on me all night and checked my cervix again saturday morning and it had closed back up, but it had thinned. i never had any contractions or anything like that. so they sent me home on strict bed rest.

i just wanted to know if this has happened to anyone else. if this is a symptom of the Chiari.

[irish_gypsy85]

Thank you all. I have been having a lot of issues lately and I have not been able to get on here in a while. I will try to get in contact with some of the other doctors in other states and see if they can at least talk to my doctors here before I have to go anywhere. Oh, we found out on the 15th of May that it is a boy. My husband is very happy. I just hope that he doesn't try to come to early and I end up having to give birth naturaly. My other son was born a month early because I was leaking fluid. They enduced my labor. So I hope even if he has to be born early that they can do a C-Section.
Thank you again for all your help and kind words.

[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

[irish_gypsy85]

thank you all for all of your kind words, concerns and help. i went to see my obg doc today and they are going to do more research on chiari, so they know what they are dealing with and they are sending me to a neurologist at UVA hospital to see what they can do to help me. they gave me some nausea, pain and motion sickness pills to kind of help me right now. i go back to my obg next tuesday for my 12 week apt. i hope that they actually help me and not just shrug it off as me trying to get pain meds. i dont like to take pain meds unless i have to, they make me sick to my stomach. so maybe they will actually start listening to me now.
                                 we were planning on moving out of state anyway, this just means we have to keep my illness in mind and move somewhere we can afford and that we like. thank you all again. im so glad i found this forum and website. it has helped not only me but my family and my obg doc. thank you again.

[Poohishhhhh]

Hi...it will be so kind of you to tell me anything about institute chiari Barcelona.My 6 years boy has this condition and I am soon planning to go there.

[selmaS]

  Hi....I wish I had some solution for u...the only thing I can suggest is look into the non profits that will fly u to a Dr visit....they help get people to surgery or check ups when they can not afford it....so worth looking into.

Have u looked at the Drs on the list we have?

[irislita]

Reading ur post just makes me sad and angry.i live in spain....and i must say that things are way easier.it seems health is not a right,but a business....i wish i could be more of a help...but i dont know health system,addresses and stuff of the states.hugs

[irish_gypsy85]

thank you. yes he is doing what he can. he is the only one that is working and has no choice but to work. he cant take off work all the time to take me to the doc or we lose money that we need to pay our bills and we have two kids here. my 7 year old is a big help. he behaves better than the 12 year old. sending his daughter to live with his parents is killing him, but if he's
going to be depressed the whole time she is gone i can't live like that.
                Oh and going to any of the emergency rooms around here wont do me any good. they will just send me home. its just how virginia is ran. its been taken over by the government and unless you are rich and can buy off everyone or you are hispanic than you are screwed. thats why i have been wanting to move out of state for a long time but we cant afford it. this year we can only afford to move to a local place, maybe next year or even the year after we will be able to move out of state. this year we have to buy a lot of baby stuff.
                          i think i may have found a neurologist in west va but i wont get to see them as often because they are 4 and a half hours away. and like i said i dont feel safe to drive long distances. and all of our family lives 2 to 4 hours away. and they work all the time or cant drive. the closest relative we have is his sister and she cant drive. our only friend that could and would help passed away last summer from cancer that could have been caught and gotten rid of if the docs at UVA hospitle would have done their jobs. so i dont trust docs there or around here. sorry i'm rambleing again. i just have no one to talk to any more but my family and they dont understand.

[irislita]

Please go to.emergency and catch a cab.it makes me sooo angry to hear that none of ur drs is helping u and that ur stepdaughter is acting that way and even touching u.i wish there was anything i can do for u.please go and sit somewhere were you cant be ignored.u need help and this is all not right....what is ur partner doing?is he helpful?this is too much for u.keep us updated.i send u loads of love

[irish_gypsy85]

the only docs that will help me are out of state and we dont have the money for me to go that far. the only option i have is to hope my obgyn docs will listen to me and read the info i have that i looked up online about it. i just hope that someone will listen to me. im am in pain, i cant eat, i cant sleep, i have tried everything i can and everything that the docs told me to do. im running out of options and its causeing me to have to send my stepdaughter away to her grandparents because i cant handle the stress. she has mayjor issues going all the way back to 2006 when her biological mother died, rangeing from beating on me to abuseing animals and lieing and not doing her work at school. she has caused a lot of stress in our lives and we just cant have it anymore.
                           yesterday she pushed me because i caught her in a lie and was going to tell her father. i almost fell down. i cant be around that not right now so we have no other choice but to send her out there. we have  tried everything under the sun to get her help and to help her and nothing is working. its just too much stress on me and her father. after all this happened i started having a massive headache, really bad cramps, and really bad back pain. i dont know what to do. i go see my obgyn today at 10am. i just dont know what im going to do or if i can handle this if i have to deal with it for the rest of the pregnancy. i wont be able to drive, to move or to do anything. it hurts really bad.

[selmaS]

  There are Chiari Drs in Maryland and North Carolina.....I know it is someplace u will have to travel to, but many of us have to travel to get the right care....

Well do look at our list of Drs and use it to research Drs....I am sure u will find a Dr to help u.

[irish_gypsy85]

thanks. i just found out that all my chiari doctors feel they can no longer help me. so now i have to try to find someone who can help me. my obg doc told me to call my family doc or my chiari doc. so i am pretty much screwed. my family doc moved out of town and there arent many neurologists that specialize in chiari in the state of Virginia. and my obg thinks that a natural birth is fine and that i can do things like i normaly do. i dont understand how doctors can be like that. so until i find a family doc, a neurologist doc and possibly a obg doc that will actually listen to what i have going on with me then im screwed.

[selmaS]

  Have u talked to ur OBGYN about these issues and ur Chiari DX?

He/she should be able to tell u what is safe for u to do while pregnant...I know u said u called a Dr and no calls back....but keep calling every hour on the hour, the squeaky wheel gets the grease....

Was ur first born a natural birth? Or a C -section? The chiari specialists do suggest a C- section so u do not have to strain, as that can cause ur symptoms to flare...

AS this pregnancy develops it adds pressure to all areas of ur body as u retain fluids etc....so ur symptoms may flare.

pace urself slower and save energy up for long days u know are coming....listen to ur body and stop when it indicates pain, or ne of ur symptoms act up....

I know it is  a lot and can be very over whelming, but u can do this...one day at a time...and keep after ur Drs to let them know what is going on.

At one point I had vertigo for 2 weeks...so it can last for a while and then just stop...symptoms with Chiari cycle, so look to what u did b4 a symptom flares so u may know what ur triggers are.

[irish_gypsy85]

ok i had really bad motion sickness before i got pregnant because of the chiari. now that im pregnant its way worse. it used to only be when i was in a car, on any type of boat, or some amusement park rides. but now i cant walk through the house with out getting so dizzy that i almost pass out, and the nausea wont go away. i called my doctors and they arnt calling me back. please help me. i have tried small, frequent meals,  ginger ale, Vitamin B6,  Unisom, and Sea Bands. none of them are working. it wasnt this bad when i was pregnant with my son. but i didnt know i chiari and i didnt have many symptoms, just headachs,and motion sickness. but after my son was born i had all kinds of issues and still do. now everything is getting worse.  i need help, please!!!

[selmaS]

  No worries : )

If u have ne more questions let us know.

[irish_gypsy85]

Thanks. Its really nice that there are a lot of other people out there who know what I'm going threw.