Chiari Online Support Group

Chiari & Pregnancy... confused as to what to do?


#1

Hello, I know most of you will not have had a choice or maybe not even known about chiari before being pregnant. But I just wondered, if you were in a situation where you could choose to opt for surgery before or after having children, what would you recommend? Is there a chance of reoccurence following surgery if you become pregnant following decompression?

I’m feeling really confused. I have symptoms of chiari, and the vision/brain fog/memory loss/concentration are my biggest concerns, although i have pressure headaches, they aren’t debilitating at the moment. I just don’t know what to do, if my csf flow is normal would you delay surgery? If its restricted or blocked completely, is that a requirement for surgery asap?

I don’t want any worsening in my symptoms but i also don’t want unnecessary surgery, any opinions or experiences would be greatly appreciated!

Thank you, Amy xxx


#2

I was diagnoses and had surgery after having two children. If I had had the choice or could go back, I would have the surgery before children. For many reasons.

1 Having an unwell parent affects children in a negative way.

          I was not always a rational, kind, and present parent.  With Chiari, my ability to monitor my own emotions was impaired.  When children are small, us parents are called on to assist them in monitoring their own emotions.  Had to do that at the best of times
  1. Post-surgery or prior if your condition deteriorates, it becomes more difficult to arrange care not only for you but also for the children, the house, meals, shopping, the dogs, the plants…

  2. More difficult to take the time to recover with the demands of parenting, running a house, and the pressure to get back to work.

  3. Financially is more challenging with dependants. Who’s to say you will even keep your job as brain fog and fatigue worsen.

  4. It is challenging to repeatedly say that mommy is too tired

  5. Delayed surgery is not always a great choice. You will have to do what you have to do. I would have had it sooner and then perhaps I would not have had the side effect of cognitive processing impairments.

Choices! Good luck in finding the information you need and the time to wrap your brain around it.


#3

Thank you very much for your advice. I already have an 18 month old daughter and wanted to hear other peoples thoughts - thats great thank you xxx


#4

I still have my cm and I have a son. I will say that the doctors who found my cm said I was lucky bc the strain of childbirth can decrease csf flow, so if yours is already narrow, natural childbirth can be dangerous. They said I could have had a stroke, so that’s a scary thought! I’ve lived ten years without surgery, mostly bc I also have Ehlers-Danlos and cranio-cervical instability and the surgical decompression will only make that worse, which will likely lead to many other surgeries. I’m trying to hold it until I can’t anymore!

Holding out has lead me to many, many migraines/Chiari headaches, days in hard neck braces, etc. I haven’t been able to work more than part time. My son has special needs, so I also couldn’t possibly be in hospital for multiple surgeries. That basically took away my choice, to be honest. You never know what your child is going to need, or your spouse, your parents…

I would recommend having it before children, and I did not lol. Good luck!
-Sarah


#5

Thank you for your experience and advice Sarah. I have a neurosurgery appt but its not until this April. I haven’t had my cine mri results yet, but have a 15mm herniation and i am symptomatic, but i’m guessing they aren’t worried if my appt isn’t until April. I just genuinely i am confused, as when i read on this site, I have so many of the symptoms that you all have but they don’t stop me from working or living at the moment; the brain fog/vision/memory are just incredibly frustrating, the other symptoms i can deal with. I’m worried if i have surgery now, it is unnecessary, serious surgery that has its own risks and complications, but in equal measure I don’t want to be silly in delaying surgery if all of these symptoms will worsen with time. We were planning on our second baby but all those plans are on hold atm. Thank you for your advice, Amy xxxx


#6

I’m confused. Lol go figure. :joy:
You mentioned csf flow being normal but then said you have 15 mm herniation? Is that right?
They have you scheduled for surgery but not till April?
Also surgery is not a cure, may or may not help depending on you and if you have other conditions. Have you been checked for any other sister conditions?


#7

Sorry, i wasn’t clear - no i have a 15mm herniation and have had a scan to assess csf flow but don’t have results yet but have been sent a neurosurgery appt for april. Ive seen a neurologist but haven’t seen a neurosurgeon yet. The neurologist suggested surgery and referred me to the neurosurgeon. I just joined this group for some guidance really, as i honestly don’t know what is best to do; i don’t want unecessary surgery, but as everyone does, want to do whatever is best for my long term health xxx