schwannoma & pregnancy

[maryballard]

Hi,

I've recently been diagnosed with a 1.7 cm schwannoma on my 7th nerve (facial nerve). i'm currently in a watch and wait pattern, with a follow up MRI scheduled in the fall.

I have some symptoms -- primarily facial twitching, weakness and pain, some off and on  balance and hearing issues.  the severity of the symptoms fluctuates,  but overall it hasn't been too difficult to live with them so far.

my primary concern at the moment is that my husband and i have been planning our first child sin the next year, and i have no idea if the changes that occur in the body during pregnancy would cause the schwannoma to change or grow faster. If so, that might prompt me to seek treatment sooner rather than wait, since treatment during pregnancy would probably not be an option.

does anyone have any experience with this? 

Thanks!
Mary

[jenifyer]

Hello,

I have just had surgery to remove my recurrent AN on May 5th.  i had my orignial surgery in June of 2000.  i think it was 1 cm, to be honest i don't remember.  I have since had 3 pregnancies....2 kids. i had my first baby about 2 years after my first surgery i had my second baby in november, that makes him 6 months, and found out i had my tumor had recurred in jan.  it was 2.5 cm.  it had grown a lot in a period of 5 years.  The first thing my new doctor asked me was have i had children?  There may be some theory that these tumors may grow more quickly with all the pregnancy hormones. He said that it isn't enough evidence to prevent me from having more children.  i don't mean to make you nervous, only aware.  you may want to treat your tumor first, or have a baby first.  please feel free to email me if you have questions...
jennifer

[eballen]

I was diagnosed with a 2.2cm AN in February. I had a baby last Oct.  I have no hearing loss or balance issues, but all thorugh my pregnancy I had facial twitches and numbness.  I thought it was a pregnancy thing.  Symptoms continued after pregnancy, and that's when I decided to go see what was going on.  I was nursing my baby and symptoms kept up. Once I quit nursing, symptons slowed in regularity, but I still have them.  I'm scheduled for surgery next Friday.  It's such a huge decision, plus knowing I have a 3.5 yr old and a 7 mo old made decision very tough.  I just thought I'd reply since it struck me that several of us have "pregnancy" and the AN in common.  My feeling was that hormone changes in me during pregnancy and nursing (body still active with baby hormones) caused my symptoms to be "worse" or more noticiable.  I'm sure there is no proof.. but my dr suggested that the pregnancy hormones caused a slightly enlarged pituitary and therefore my nerves/brainstem were getting pinched between tumor and pituitary.  Who knows.  I wish you the best in your decision.

[jenifyer]

It is nice to know there are a few of us out there.  i have found that communicating with others in the same boat helps a lot as far as dealing with this situation. 
jennifer

[maryballard]

thanks so much for the feedback! it is good to hear from women who have made it through pregnancy ok with tumors.  I can deal with worse symptoms, unless they are associated with an increase in the overall severity of the situation. unfortunately there's no real way to predict the future.

it's a tough choice. i don't want to take any unecessary risks, but i'd like to hold off treatment for as long as possible.  i don't want to let this inerfere with our plans to start a family, but then again going into surgery with a small child is an extremely tough situation to be facing.

Good luck on Friday with your surgery!

[Russ]

Hi Mary
  If you are not yet pregnant, I would have treatment first as there is evidence hormonal changes during pregnancy have a tendency to hasten tumor growth.
  Best wishes for the best choice!   -Russ

[steph]

I was happy to see this topic because it has been on my mind quite a bit lately. I had my little girl in august of 2003, I had bad headaches during my pregnancy and never before so I just thought it was related to the pregnancy. when my daughter was 9months old they found I had a 3.5cm tumor. I also was told the hormones could have possibly caused the tumor to grow more rapidly but no one knows for sure. Now I am approaching my year aniversary and considering if I should  have another child. My dr. said not to consider getting pregnant for two years to give my body time to heal. I don't want my daughter to be an only child but I also can't imagine going thru this year all over again. Tough choices. This is a great forum to discuss this.

[jenifyer]

Steph-

Did you have surgery?  I had my first baby 1 1/2 years after my first surgery.  I am convinced that hormones from pregnancy cause rapid growth of these tumors.  I found out my tumor had recurred after my second baby was born.  It was 2.5 cm which is more than twice the size of the first one i had. it grew to that size in less than 5 years.  i don't think it would have stopped me from having my second baby, but maybe the timing would be different.  i also think i would have watched it more closely than i did. i had my second surgery 4 1/2 weeks ago and when i look at my baby it is all worth it.  I don't think i am going to have a third however.

[steph]

Hi Jenifyer, I did have surgery in august 04. long surgery, 18hrs and a much longer recovery. I have hearing loss and had facial paralysis but my facial nerve has begun to work(yeah!!). I am finally beginning to feel like myself again.
I can't tell you how torn I am. I really want to have another baby but I don't want to run the risk of something happening to me or going thru this year all over again. How are you doing after your second surgery? with two kids, that can not be easy. I will see my dr. in september and talk more at length about this but of course getting a straight answer about something not official "proven" is very difficult. How old are your kids?

[Angela]

Yikes.  I was into the 2nd trimester with my 2nd child when I noticed symptoms, but was told it was pregnancy too.  I wasn't diagnosed with the 4cm tumor until baby was 4 months old.  Did the tumor grow more and faster during pregnancy?  Probably.  Would I have had another baby knowing that I had a tumor?  Probably not.  After tumor surgery?  Definitely not!  But that's just me.  The dr's suspect that I had the tumor before my 1st pregnancy, 12 years prior.
Pray on the decision and do what's right for you.  Good luck--

[jenifyer]

hi steph-

my first surgery was very difficult.  they tried to save my hearing but unfortunately it didn't work.  the dr had to leave a small piece of tumor, thinking that if the blood supply was cut off it would be ok.  i also had grade 4 facial paralysis.  needless to say i was devastated when i found out my tumor had recurred.  Initially we thoght about radiation but in the end determined that surgery would be best.  I am in a new city and have a terrific new doctor.  He was able to save my facial nerve which was a miracle!  I went in thinking I might have to have a hypoglossal nerve graft.  I actually have movement in my eyebrow that i haven't had in 5 years!  The pressure from the 'unknown'  tumor may have been inhibiting facial function.  This time i am already having facial movement only weeks after surgery.
It was very difficult right after surgery.  My mother came to stay for a month and an aunt stayed for two weeks as well.  I am feeling really good and am gettin back to normal.  If you do want another child just make sure to check thngs out first.  i wanted kids so much i don't think i would have let this stop me, only postpone things a while.

jennifer

[allyw31]

Hi

I had my frist son when I was 21, and I did not find out I had AN (1.8cm) until I was 23, But I do now know that I have had AN since my teens. Anyway I found out that I was having another baby in July 03 now 25,  I asked my doctor about the growing faster etc.., he said that it had not been proven that the AN would grow faster during pregnancy, and that they give me another MRI after my 2nd son was born (Guinea pig was the word they used I think ), Well In June 04  2 mths after 2nd son was born had my MRI, Then had been no change since my last scan which was 20mths before.  Hope that is of some help.

Alison

[Snowball]

Just thought I'd add my two cents.  Lost my hearing during my first pregnancy, but due to a family history of hearing loss at young ages, doctor wasn't too concerned.  Experienced more symptoms with my second pregnancy, but as others have said, I thought it was just "side-effects" of pregnancy.  Thirteen days after the birth of my third child, I suffered a seizure, which led to the AN diagnosis along with hydrocephaly.  Spent the next 10 weeks in three different hospitals, had my children being passed from relative to relative - and the baby didn't even know me when I got out of the hospital.  If I had known about the AN I'm sure I would have had it treated before getting pregnant, but I probably still would have had all three kids.  Good luck.

[AngelaRupp]

I had two children, ages 5 and 15 months when I was diagnosed.  My surgeon also said it was possible that the tumor could have had a more rapid growth during my pregnancies.  I was also told that the hormones in "the pill" may also cause more rapid growth.  I had my tumor removed by surgery in Feb., 2003.  I was trying to convince my husband to have a vasectomy. He was being a huge baby about it, but thought if I could go through brain surgery, he could get through the procedure. About four months after my surgery, while calling around to find a good Urologist for him, I found out I was already pregnant with baby # 3. ( He got off the hook!)  I was so scared that my body couldn't handle a pregnancy while I was recovering from surgery.  But, I made it through with absolutely no complications.  The coolist thing was that I had my baby girl on my birthday, nearly a year after my surgery. What a reward after all I'd been through!  I've had MRI's since, and no re-growth.  If your symtoms aren't too bothersome now, I wouldn't rule out having a baby before treatment.  I'm sure my tumor was around during my first two pregnancies, I just didn't know about it yet.  Best of luck with your decision. Unfortunately we don't have a crystal ball to find all the answers.  Feel free to contact me if you need someone to chat with. 

[russ]

Hi Alison!
  Seems it might be a good idea if your Dr. read some of the research out there. You are very fortunate!
  Congratulations to your Son for his 1st Birthday!!
  Russ

Hi

I had my frist son when I was 21, and I did not find out I had AN (1.8cm) until I was 23, But I do now know that I have had AN since my teens. Anyway I found out that I was having another baby in July 03 now 25,  I asked my doctor about the growing faster etc.., he said that it had not been proven that the AN would grow faster during pregnancy, and that they give me another MRI after my 2nd son was born (Guinea pig was the word they used I think ), Well In June 04  2 mths after 2nd son was born had my MRI, Then had been no change since my last scan which was 20mths before.  Hope that is of some help.

Alison