Moms With Schwannomatosis Tell Their Stories

Hello!  And welcome to a short blog-article on the subject of moms with Schwannomatosis!

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.

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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Moms Who Have Had Schwannomas Share Their Stories

Good morning everyone!  Today I am pleased to bring you our newest blog-article compilation.  This one is an article featuring experiences and stories from moms who have had Schwannomas.  In most cases, when we have created blogs on particular topics, the topics in question have come from questions that we get asked all the time.  Most recently, a good number of women have chimed in wanting to hear from other women about their experiences having had Schwannomas and being moms.  Some of the women interested currently have known Schwannomas and are wanting to know how other moms have handled pregnancy in addition to the Schwannoma issues.  Recently, on the SS and SF Facebook page we asked for moms to tell us some of their stories, and below are some experiences and responses from mothers who were kind enough to share them.  Thank you so much to the moms who have shared their stories!  We hope this article brings some much needed help and perspective to new moms to be who are also battling Schwannomas! - Stay strong, Neil

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Response #1:

Hey, guys! I am so happy I found you! I was experiencing back pain for 3 years now. I thought it was sciatica. I got pregnant and the pain stopped. 6 weeks after the baby was
born, my pain was back. I did an MRI and found out that I have a Schwannoma (L1-L2) and I
need surgery. What to do? I was breastfeeding and I was afraid.  I talked to several doctors here,
in Romania, and decided to postpone the surgery until the baby is 6 months old.  Meanwhile, to
cope with the pain, I took ibuprofen (200mg) once a day. My baby is going to be 6 months old in a
week and I am thinking that I should get the surgery.  I am very afraid that's why I'm so happy I found you. I hope to find the strength I need here, with other Schwannoma survivors, even though.  I am from another country. Thank you!

Response #2

 I was diagnosed in 2011 when I was 18 with one in my pelvic area...had it removed about four months after as it was causing me a lot of pain down my right leg and foot...had my first child in 2014 and had no problems and again in 2018 had my second and no problems at all.

Response #3

 I am a Mom and was diagnosed with a large sciatic nerve root Schwannoma
in 2002. I began experiencing pain in 1998. Saw several doctors and surgeons, had several
MRIs of my lumbar spine. The MRIs showed some mild bulged disks, but ultimately diagnosed with sciatica and piriformis syndrome. In 2000 I became pregnant with my son. As he began to grow, the pain became more intense and I was unable to take anything stronger that regular
strength Tylenol. In my 3rd trimester my OB/GYN approved an epidural type procedure that
would direct pain relief directly to the piriformis muscle and would not affect the baby. It didn't do much so I had to bear the pain. I remember taking lots of baths to relive the pain and I could lie
down in certain positions that helped. A few months after my son was born, I was back in the
doctor’s office and by now they thought I was drug seeking! Very frustrating! Finally in early 2002
I was referred to a chronic pain specialist and he suggested an MRI of my pelvis, finally!! So get a
call less than a week later and of course they tell me its a mass in my pelvis and I am now
freaking out thinking I have cancer, ugh! In May 2002 I was referred to a neurosurgeon and had
the surgery. It was successful and the tumor was benign. What a relief! Since the surgery I have
experienced numbness in my buttock down to my knee and its never improved after all of these
years. The nerve damage doesn't really affect my daily life, but I didn't realize it would be life long.

Response #4

I was diagnosed with an acoustic neuroma and multiple sclerosis on
the same day 5 years ago. I went on to have brain surgery to remove the neuroma. I was left with
a bit of temporary facial paralysis and a loss of hearing in my left ear. We got pregnant about 3
years later and have a healthy 8 month old baby. Being pregnant was the best I’ve felt since high
school. I was always scared about how pregnancy would affect my health, but my body flourished
during those 9 months. The postpartum period proved to be a little more difficult but I’m finally
leveling out again about 8 months later. I too worried about passing a genetic risk onto my child
but he is a robust 24 pound 8 month old and is seemingly very healthy. The vertigo that I
experienced after surgery has reoccurred in the postpartum period. I am thankful that I decided to
have a mother despite my previous reservations.

Response #5

 I had an intradural extramedually thoracic Schwannoma removed in 2013 and have
since had two children in 2017 and 2018. Made aware I would be unable to have an epidural
(wasn’t in my optimal birth plan anyway) due to cord compression and would need to be put
under general anesthetic if necessary but I labored fine with both children. Prior to pregnancy I
experienced regular nerve pain but both pregnancies seemed to alleviate all of those problems.

Response #6

I have Schwannoma’s and had during my pregnancy. Once I felt the life growing
inside me that’s all I focused on.  I had a son, perfect in every way.  I had a C-section that caused me a little hospital time. I was able to have my son sleep on my chest everyday thanks to a friend you would bring him in and stay with me to help change diapers, etc.  Because of all the meds I was not able to breastfeed.  It was mind over matter.  I was so at peace with them coming to the hospital everyday I put the pain aside to enjoy every moment.  It’s amazing how a baby can change your life for the better!!

Response #7

After birth of my daughter Nov 2012, I began having much right leg pain, heaviness, and numbness. Being military at the time it was a priority that I get back into physical shape by 6 months. My time limit passed and the pain became unbearable by the fall 2013. In June 2014 during incidental finding I had a pelvic 4cm plum on the right femoral/sciatic nerve. After finding a neurosurgeon to even see me, I found out I was pregnant with my third child at same time. So I was monitored for growth of the Schwannoma and went through the pregnancy without any medication. Pregnancy went perfect, no complications, Natural childbirth.  Tumor was surgically removed June 19, 2015. Unfortunately for me, my Schwannoma returned in 2016, same location and is currently 6 cm.

Response #8

I have a spinal Schwanoma that was discovered two months after the birth of
my daughter. I went on to have Cyber knife Radiation. Two years later with no tumor growth I had
a little boy. This pregnancy was very uncomfortable and I ended up need physical therapy for my
neck pain. I still have numbness and loss of feeling in my left arm. But both of my children are
happy &  healthy.

Response #9

I did and I'm raising 2 sons, one severely autistic.

Response #10

I’ve not had any more children (mostly by choice); however, my grandma went on
to have my dad after having what we think was a Schwannoma removed from her pelvic area. 
Also so many women have pelvic cysts, polycystic ovaries, etc., removed and still go on to have
successful births.

Response #11

 I have a 16year old and a 4 year old. I was not diagnosed until 2017. I. was told based on size of my trigeminal Schwannoma it was likely that it developed 10-15 years.  So my oldest was between 1-6. Only symptom I had was migraines and until 2017 was considered hereditary. No other issues pregnancy related known

Response #12

I have multiple Schwannomas. I had 2 miscarriages and 2 deliveries at term. I
was not diagnosed with Schannomas until almost 4 years after having my 2nd child. However I
have imaging that shows Schwannomas on the Iliopsoas muscle dating back to when I had my
second child. My sister who has passed away also had 3 successful pregnancies.

Response #13

My pain appeared months after my first pregnancy, and a year later while
rehabbing my suspected “herniated disc” I became pregnant with my second child. My pain
progressed tenfold during that pregnancy. I had an MRI 6 week’s post-partum and got my L5
nerve root Schwannoma diagnosis. I found that my nerve pain quickly accelerated after childbirth.
Not sure if it was related to delivery, hormones, stress, etc. After a grueling year of trying to
manage a toddler and newborn while living with chronic pain, I had my Schwannoma removed at
Mayo 3 months ago. My decision to have surgery was due in large part to my desire to have
another baby, as I know my body couldn’t have handled it in that state. At this moment my nerve
pain is nearly undetectable. I find myself terrified of having another pregnancy as I feel it may
jeopardize my progress. I would love to see any research that discusses pregnancy/hormones
and Schwannomas.

Response #14

Had my Schwannoma from my neck removed when my kids were 10 and 8. Doctor said by the size of it, I had it for about 15 years. Had good pregnancies with 1 miscarriage in between the 2. Although; never went into labor, and had C-sections for both. Have paralysis in my left vocal cord from the removal and I hate sounding so gruff for the past 20 years.  Still miss my old voice.