Recently when we asked for feedback and experiences from moms who had battled Schwannomas - we noticed we also received comments from moms who had the condition of Schwannomatosis (This is a condition that pre-disposes a person to Multiple Schwannomas, sometimes clustered in a single limb, or sometimes throughout multiple nerve pathways in the body).
We send our sincerest thanks to the mom's who shared a bit of their stories in hopes of helping others. Wishing you all a strong and pain free day!
Neil
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Here are the comments we received from mom's with Schwannomatosis:
First response: I actually found my first Schwannoma due to a pregnancy. It was discovered during an ultrasound. I ended up miscarrying and they sent me for an MRI. Long story short, after surgery, and biopsy I discovered it was a Schwannoma. This began a discovery of several more, another one removed in my foot. I was diagnosed five years ago with Schwannomatosis . I have had two successful pregnancies since then. My first pregnancy I didn’t have any problems, but my second one I did. My son was a large baby and I think he put pressure on the one in my pelvic area. I couldn’t sit for long periods of times, and had trouble getting up. It would cause numbness in my legs. It was only the last two months of pregnancy, but it was hard. I still managed to work and work out, just had to move through the pain. I just had my son two months ago, and have my annual MRI to check the growth of the one in my pelvic area. My doctor said the type of Schwannomas I have though, pregnancy hasn’t been known to cause any major changes in the growth. Again, not a lot of research, but if made me feel better. Like the other women said I do worry that I passed these along to my boys. After my first son I really didn’t want another because of this fear. I realized how much I wanted a family though and I couldn’t let the disease get the best of me. In the future I would like to get testing done and have my boys tested, but for now just making them aware and being conscious of any pains they have. I mean I didn’t discover mine until I was 30.
Second Response: I have Schwannomatosis & was scared that I would develop other tumors due to pregnancy hormones. I have, so far, only had two Schwannomas. One in my left calf muscle removed Feb. 2012 & one on the bottom/ middle of my right foot which was removed in Dec. 2016.
So far I have not shown any signs of other tumors, and hope that remains the case.
I am fearful that I will pass Schwannomatosis to my child and future children, but I do not want a disease to fill my life.
When I got pregnant I had been off of any pain medicine for 9 months. I’m not sure I would have tried for biological children if I couldn’t have my tumors removed. My pain was very severe and I couldn’t imagine dealing with the pain without medication.
I am fearful that I will pass Schwannomatosis to my child and future children, but I do not want a disease to fill my life.
When I got pregnant I had been off of any pain medicine for 9 months. I’m not sure I would have tried for biological children if I couldn’t have my tumors removed. My pain was very severe and I couldn’t imagine dealing with the pain without medication.
Also. I didn’t state this. I had my daughter July 2018. No tumors at that time just previous, ones that had been removed.
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