I was diagnosed with ACM type 1 when I was pregnant with my daughter 6 years ago. I was able to get through that pregnancy along with my second one with many, many complications but thankfully ending in successful deliveries (c-sections) and healthy babies :) Over the last few years I have developed other health issues and in doing so the Chiari actually grew and I needed the decompression surgery which I had done in June 2012. My doctors have told me no more children due to the Chiari and the other health issues which I am working on fixing but I was just curious if the decompression surgery was already done why would this be a factor in having more children? Did anyone else receive this instruction from their M.D.? Any input would be greatly appreciated. Thank you.
As of now I have Chiari type 1, EDS, POTS, IST and some other issues.... I was told as of now to do anything in my power not to get pregnant as it may causes further herniation of the brain and my heart is very unstable...I have a daughter who is almost 3 .. but previous to having her I had no symptoms of any of my diagnosis.. A year later my live turned upside-down... but anyways I expressed my concern to my neuro and electrophysiologist and they said as of now it would not be in my best interest to get pregnant...so I went further to ask my neurosurgeon who told me that he can only speak about Chiari and said we will have to see how things go after surgery (which I plan on having something in this year - I am already approved for the surgery)... but then he said I would need to see about the EDS, POTS, and IST.... Either way IF I got the 4 OK's from an OBGYN, neurosuergon, electrophys., and rhematologist.. I would be considered a very high risk pregnancy... I am almost 27 and would love to have 2 more kids.. it is very depressing.. but in the words of my doctor "I was blessed to have a beautiful healthy girl.. be patient and see how everything progresses"...
I received the same sort of news....my heart is weak and I just had back surgery and now I'm being checked for cancer so getting pregnant now is def. not in the cards for me and I'm 29. When I was 24 I was told NOT to get pregnant again but I did anyway because I always wanted at least 2 kids and I made it through that one although the day I gave birth my family was told I probably wouldn't make it through the day. The chances of making it through another pregnancy is slim to none for me but there is just something about being told that you CANNOT have another one at such a young age that is just heartbreaking. Did they tell you that there is a link between your Chiari and your heart issues? My neurologist has done studies on this and said there is a direct correlation and that's why she pushed so hard for me to get the decompression done. Did you have a blockage with your Chiari? I had a flow study done and it showed I did so I was at a high risk of stroke so that's why the c-sections were done. I can't believe how similar our stories are. I would love to hear more about yours if you're open to sharing. If not, I totally understand - it's hard to share sometimes. Brings up some hard feelings. If you're not up to it that's perfectly fine. I wish you all the best of luck too. I'm glad that you have a healthy little girl :)
As JC mentioned there are several related conditions many of us have, EDS has several types, and one does affect the heart....so, if u have had such a difficult pregnancy last time I would think ur Drs are right.
Surgery for Chiari is not the only issue they r concerned with, and surgery is not a cure, just a means to restore CSF flow and slow progression.
Listen to the Drs and enjoy the 2 u have, I was never able to have more, I was blessed with one...and I know can look back and see it was for the best that was all I had....as I am not sure I could have functioned.
I am a lot like u in if someone says I can not do something I like to prove I can....but in this case, it is better to be here for the ones u have then try and prove nething. JMHO
I thought I would be doing better than I am actually. It's been 11 months as of May 15th so almost a full year and a lot of my symptoms are back so that is very disheartening. But like you said the surgery isn't a cure so I suppose I shouldn't have expected them to just go away.
By back isn't healing as well as I would have liked either so I think with that as an added stressor it's just taking me a little longer to see the bigger picture. I know you are right and I should just be happy with the two I have an not be so concerned with having another and for the most part I am. I just have that little notion in the bottom of my heart that says "one more...." But I am truly blessed with my two, so I know I need to be here for them and that is what I need to concentrate on.
Yes, this May it will be 4 yrs since I had surgery....and I am hoping to get news of being a grandmother as my DD is married 3 yrs this Oct....
At the one yr point I still had many issues, and I did have them dissipate over the next 2 yrs....so do not resign to continue to have some of the issues u may have now, that may too go in time...as my NS told me it can take up to 2 yrs or more for the nerves to heal completely.....
My concern for u is the concern the Drs have for u and I am not trying to tell u what to do,....but I pray u can find the joy in what u have and not upset in what u do not <3
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