I just found out that I am 6 weeks pregnant. I have yet to have any other testing done regarding my malformation, but my neurosurgeon indicated that surgery was in the near future. My symptoms have gotten pretty extreme lately, especially the dizziness and feeling faint. The pressure in my head is very very painful, and of course all I can take is tylenol. Has anyone else been pregnant before or after their surgery, and what was it like? Will I be a high risk pregnancy? I was pregnant last year but miscarried after 10 weeks. I am greatly concerned about this pregnancy.
Hi LC,
How was your pregnancy's with your other two children? There are other medications you can take while pregnant. You need to have your Obgyn and your NS start a team approach to ensure you and your baby gets the best possible care. Does your NS know you are pregnant yet? We have many women that have had perfectly normal pregnancies and healthy babies. CM does make it more difficult but not impossible. Please don't worry. That will just give you a headache and make you feel bad. I miscarried 6 years ago at 5 months pregnant but have also had a successful pregnancy. You just have to be monitored closely. How is your BP & HR? Do you have any problems with Intracranial Pressure? When you contact your NS ask him how many CM patients he has treated that are pregnant. Please remember we are here for you. There are incredible people on this forum. You won't be alone sweetie. I know you are worried and scared but we understand and will be here for you.
Tracy Z.
I had both my kids before I found out about my Chiari/Syringomyelia. I have two healthy kids now 11 and 7. But my pregnancies were difficult. I had to have emergency c-sections for both because my blood pressure was extremely high. Just know that you need to take it easy and rest as much as possible. Try to find ways to keep your stress levels down and try not to gain too much weight. I only gained 25 pounds with my second child and I felt so much better but I still needed an emergency c-section because my body just couldn't regulate my blood pressure properly. Maybe your neuro and direct you to a group of women in your area that have Chiari and have gone through pregnancy too. Try to keep positive and I find watching funny movies helps a lot. I'll keep you in my thoughts.
Guido
I had three children not realizing I had Chiari. I did well other then I had cardiac arrhythmias, light headed & fainting. I think you will be alright. You will experience some changes in your hormones that’s part of it but just stay close to your doctors and continue the Tylenol which is all I was allowed to take during my headaches and stuff but again not realizing i had chiari throughout my pregnancies. I did just fine, ate healthy and more frequently.
Prayers for you!!!
Hey LC,
First of all, congratulations.
I had two boys not knowing I had Chiari. Fell a few time, fainted in hot showers, and had pretty hard deliveries (but arent they all). I remember my headaches went completly away. After my second son I did get vertigo for about a month. I wasnt diagnosed till thispast Nov. I didnt know any better and we all came through it, and worth a lifetime of joy!
Good luck Lucky!
I have three kids (16, 13 and 9). My first two were before decompression surgery. My serious symptoms did not start until about 6 months after my first son was born. After my first pregnancy, I read a lot about epidurals triggering Chiari symptoms so you might want to ask about that, too. By my 2nd pregnancy I was having a lot of symptoms (quick onset headaches with movement/sneezing/coughing, dizzy, wooshing in ears, etc.) While pregnant with my 2nd, every single symptom disappeared. (Now if they could just bottle whatever caused that relief and make it into a pill!). Third child was after surgery. With all three, the main concern was that I not push too much during delivery. I also met with a genetics counselor, had level 3 ultrasounds and met with perinatalogost.
Congrats! Now take a deep breath! I had my son before I was diagnosed and my daughter just this March. I have not had surgery and am managing my symptoms. I just tried to stay as healthy as possible and got light exercise when I could to help keep the weight lower and stress off my body. One of the best things for my Chiari has been physical therapy, which would be perfect for you during pregnancy. I would have heat, they would stretch me to help my neck and upper back, I did light exercises and then massage. It helped keep my headaches to a minimum! My neurosurgeon made me deliver via c-section under general anesthetic he was afraid that a spinal could disrupt the flow of c-fluid. Everything went great! Best of luck with everything.
I was prescribed Zoloft for my headaches and it worked great. With my second I did the zoloft again and kept having to up the dose. I was diagnosed and had surgery almost a year ago. They are things to manage it during pregnancy
How did your surgery work out for you?
Hi! I had my pregnancy knowing I had chiari but knowing nothing about it. I have a history of stroke (had a small one as a child) and before my pregnancy the chiari headaches started, I told my OB of my history and the straining headaches so we opted for a c-section. I had a difficult pregnancy but my headaches other than the straining ones disappeared completely. No migraines for 9 months!! It was a small consolation to my 3 abruptions… One each trimester the little monkey kept trying to redecorate or something, but I digress… Please tell your NS ASAP about your pregnancy. I’m sure you will have to wait until after and be very careful in the meantime depending on your symptoms. I wish you all the best and congrats!!
My daughter was diagnosed with CM 4 nmonths before giving birth to her 3rd baby. However the Neurologist did not pick up on the diagnosis, nor did the GP delivering the bady and the natural birth went forward. With the predelivery MRI there was no syrinx present. A few months (5) after delivery she went to a neurosurgeon who told her for the first time she had CM and ordered a follow-up MRI. In this one was a syrinx. Her symptoms had progressed substantially. Now here we are almost 4 yrs since her child was born. she has had 3 surgeries. Two decompressions about a year apart and a thrid operation to patch a significant CSF leak from the 2nd surgery. that was two yrs. ago. Her symptoms continued to progress and a recent MRI shows a new cyst in the area of the medulla oblongata and 4th ventricle. At this point she is still in pain, suffers nausea and has gone numb in her legs, arms, abdomen and chest area with some numbness in her face as well. She has suffered two falls on stairs.Her GP told me that had he know (he didn't read the report) about the CM prior to her latest delivery he would have recommnended a c section to avoid the csf pressure increase due to labour. We don't know for sure that the labour pressure caused the syrinx, but you can bet that is what we believe. I recommend caution, find a dr. who understands the risk of delivery with CM and pray. Hank
Congratulations! Pregnancy can be exciting and terrifying, even if you don't have a rare disease. I have been part of the birthing community for years and when I was diagnosed with Chiari, having kids was the first thing I questioned.
The best thing you can do is take a childbirth education class and keep up a dialogue with your OBGYN and Neurologist/Neurosurgeon. (For natural childbirth I lean toward Lamaze/Passion for Birth, Birthing As Nature Intended, or Hypnobirthing/Mongan Method.) Figure out what kind of birth YOU want and then find a doctor who supports you best. A vaginal delivery IS possible. I asked this question to an OBGYN who us doulas have worked closely with. His response was:
"The short answer to your question is that, yes, most MFM (maternal fetal medicine "perinatologists") will recommend a cesarean to avoid intracranial pressures during 2nd stage and hopeful avoidance of increasing any brain herniation. That said, there are a number of non-ACM conditions where this is the goal, and sometimes you can find an MFM who works with an OB/GYN that will allow a "low-pressure" vaginal delivery. This usually includes an "assisted" 2nd stage, meaning letting the uterus doing most of the work (getting the baby's head really really close to crowning all by itself, without pushing), and then using either a vacuum or forceps for the final push. I've done this with certain cardiac and spinal-cord injury patients with great success."
A low pressure second stage is also known as "laboring down." It means you don't start pushing just because you reach 10cm. I won't go over all the details as they're available via a simple Google search, but it is a great way to avoid a valsalva headache/pressure problems during labor. Epidurals are usually not safe for women with Chiari. Unless you're having general anesthetic (being put completely under, which is incredibly rare) a spinal injection is required for a cesarean birth. You can't avoid an epidural by having a cesarean. And an epidural is NOT the only form of pain relief there is for a vaginal labor. There are plenty of pharmacological and alternative pain management techniques to choose from. Some hospitals are experimenting with nitrous oxide ("gas & air") which has been available in Europe for ages. Again, it's up to you to research these either on your own or in the setting of a childbirth education class. A doula can be a tremendous help as well - she's on call to answer questions, allay fears, and support your family. Depending on where you live, you may even find a doula who has attended out of the ordinary births. And yes, we support mums who choose medicated or surgical births. :)
One more thing and I'll stop, I swear. :) This is useful for pregnancy or any other doctor's appointment. If they are talking about a procedure or medication you're not sure about, ask these questions (I bring a printed copy with me to every appointment!):
B - Benefits - what are the benefits of this medication/procedure?
R - Risks - what are the risks?
A - Alternatives - are there any less invasive alternatives?
I - Intuition - what does your gut say about this?
N - Nothing - what happens if we wait an hour? A day? A week? More?
B.R.A.I.N. :)
Let me know if you've got any other questions!
Katrina W.
I have a CM1 and have had 5 children, vaginally! I just had mine decompressed 5 weeks ago. As long as your OB and NS work together to create a good plan for both pregnancy and delivery all should go well. My kids were all on the small side and I did not push long at all with any of them. The two real issues are prolonged pushing and pain control during pregnancy for headaches since so many of the meds we tend to take are not to be taken in pregnancy. You can do this, with the help of the right medical staff. I knew I had a chiari, I also knew I wanted a lot of kids. So I took the risk, 5 times! But with a good plan and awareness of the risks you will do great! Good luck!!
Trinity