pregnancy and tumor

[djhorn73]

I had a couple of questions about AN.
1) my ob doctor won't give us the go ahead to try again for a baby (we have lost 4) until we find out how the tumor will be affected during pregnancy
2) should i get a second opinion? Does anyone know any doctors in Ohio (northern Ohio)

THANK YOU!
Julie

[shoegirl]

Hi! Julie,

Interesting topic.  I am pretty new to AN - just found out about a month ago.  How big is your AN?  Are you seeing a doctor for it and what is their opinion?  Do you have symptoms?  I have read some posts on this board regarding pregnancy and how it may make your tumor grow faster.  I do not know if this is  medically proven or a theory?  I am sure you could find the post if you do a search.  I had my AN 3 years ago and it was missed on an MRI.  It has grown alot since then - faster than the average yearly rate. I also was pregnant twice during those three years and nursed.  I don't know if the theory is that the your hormones make it grow faster during pregnancy?

I am sure some of the women who participated in the other post will respond.  I'll be interested to read what they say.  I too would like to know how it is affected.

If you haven't already seen someone regarding your AN - I would do that and perhaps there is a perinatal specialist (think that is what they are called?) who could answer your questions as well?  If you don't have a doctor for your AN - UPMC in Pittsburgh is very good.

Good Luck! I wish you all the best! Suzanne
 

[Kathleen_Mc]

Julie: Is it that the tumor needs to be treated now that your doctor feels you shouldn't try for a baby at this time? What is the size of your tumor and symptoms? Have you seen a specialist about it and gotten thier opinion re: having children at this time?
I believe it is just a theory that the hormones involved in pregnancy and/or breast feeding increase the growth rate of a.n.'s, I have never read an actual article about this but that's not to say there isn't one.
I wasn't aware of my tumor regrowth when I went through my pregnancy with my oldest, the m.r.i. I had prior to having him in fact showed tumor regrowth but I was told it was showing scar tissue (doctor lied to me), I had my son and then an m.r.i. and this one showed growth from the one I had pre-pregnancy, this was when I saw my neurosurgeon, he advised me that the tumor was very small and confined to the auditory canal and that I should go ahead and have more children, if I wished, and just have the tumor monitored yearly, I have since had a second child and waited until she was three until I had the tumor removed. As far as I can recall the tumor did grow through each pregnancy and associated period of breast feeding but a very small amount, no greater than the average a.n. grows during the same time span of someone not pregnant etc.
I think your advise should come from your surgeon/radiologist but I do not see any reasoning for not having a child if treatment is not necessary at this time.
This all being said if I had been told prior to becoming pregnant with my first that I had a tumor regrowth I would have had it treated prior to having my children and the anger I feel towards the doctor who chose to tell me that the m.r.i. showed "scar tissue" only when she had a report in front of her that said "a.n. regrowth" will likely never go away.....my reasoning is that I would have preferred to take the surgical risk of stroke etc. without there having been the wellfare of children in the mix. I took a big chance with thier wellfare by having this surgery I just had to have the regrowth removed.
Kathleen

[djhorn73]

My tumor is only 3mm (I think... maybe it was 5mm) I forget now. I found out about it in February of this year. My OB doctor says until he hears documented proof that you can have a baby and the tumor not be effected by it, then he doesn't want us to try yet. (We have already lost 4 babies... so I think he feels adding another negative into a touchie situation already is not a good idea) My AN specialist says "Don't stop your everyday life, if you want to have a baby go for it". So I am torn on what to do! He also told me that headaces, facial tingle, and other symptoms have nothing to do with AN. He said the only symptoms are dizzness, ringing in the ear, and partical loss of hearing. So I am not sure what to think. I do think I am going to search a different opinion. But I have no idea where to go! I need a GREAT doctor in Ohio? Does anyone know of a doctor in Ohio to go to for a second opinion??

[jenifyer]

Hi Julie,

I can only give you my experience.... I have 2 kids now and really would like a 3rd, but i am not sure.  I had my 1st AN removed in 2000.  There must have been tiny pieces of the tumor left because after i had my 2nd child last november i discovered it had regrown to almost double the original size.  The first question my doctor asked me was if i had children?  There is some theory that the hormones of pregnancy can affect the AN but he basically said there is no real definitive answer yet.  There is  a long post on this topic that if you search maybe you can find.  anyway...my sister-in-law is an OB/GYN and she said that when people are pregnant, their body is in a state where she sees a lot of things enlarge or grow....moles, tumors, some cancers etc.  She has discouraged me from having any other children.  This is a tough decision for you.  I wish you good luck.
jennifer

[djhorn73]

Thank you for your information.... I think with the information from all of you, I will hold off until I get the tumor removed.

Also, would anyone know of any good doctors in Ohio that I could go to for my AN?

[shoegirl]

Hi,

I am from Pittsburgh originally - not sure where you are in Ohio?  Have you considered UPMC in Pittsburgh?  They have a wonderful program and perhaps it wouldn't be too far from you?

I am out West and was actually considering going there while visiting my family over Thanksgiving.  Also, I have heard John Hopkins is good too.  But I would definitely consider UPMC.  Unfortunately, I do not have a doctor's name at UPMC to refer you to - but I am sure they have information on their website.

If you are open to travel - there are many other options depending on your desired treatment. If you read through the posts on this board you will find doctors all over the country who are excellent at treating AN.  I am in Phoenix and I just saw Dr. Kresl at The Barrow's Institute here in town.  I really liked him and I have decided that I am going to seek treatment at their center.  My goal was to find the best place to have my AN treated with the best possible outcome.  So make sure you are comfortable with you doctor, ask lots of question, and then ask more.

Good Luck!  I hope you find a doctor to help you sort through all of this!  Keep looking until you find the right person.  If I can help you in any way please don't hesitate to ask!

Best Wishes! Suzanne

 

 

[Kathleen_Mc]

Julie: am I reading correctly that your A.N. specialist said facial tingling and headaches have nothing to do with symptoms of A.N.? I find this odd as these combined with insomnia were my symptoms of my A.N. when it was orginally found in 1990, at that time it was large, does he mean your current symptoms of such are not related to your A.N. as it is too small to be causing these symptoms at this time? Kathleen

[LaMar]

I was looking at getting pregnant but I was told by my doctors that it would not be a good idea pre-surgery.  I was told that my symptons of dizziness and loss of balance were to great a risk to me and to my child.  The chances of me falling from the top of the stairs was just to great.  I have baby fever bad so I am hoping that as soon as the surgery and recovery is over that I can get pregnant.  I am hoping that all will go well.  I was diagnosed with cervical cancer when was 19 and I think that will hinder me a little in getting pregnant.  Has anyone heard anything about the an causing difficulties in getting pregnant?  My husband is really scared about me getting pregnant.  He thinks that I will have a miscarriage and that it will devestate me.  I really want to be a mom and I would love to do it the conventional way.  I am sure that any way it goes I will be able to be a mom - it is just a matter of whether it will be through my own pregnancy or through somone else.  Well I have vented on that one for awhile.  Have a good day everyone.

[maryballard]

I am 8 mos pregnant and have a 1.7 cm tumor, diagnosed a year ago. All of the doctors that i consulted with, including a doctor at the House clinic as well as my local neurotologist in Seattle, agreed that this type of tumor does not have hormone receptors, so the growth hormones that cause other tumors, skin tags, etc to grow during pregnancy would not affect a schwannoma.

Although I have not had an additional MRI or CT Scan since getting pregnant, I can say that my symptoms have not changed at all and I have no reason to believe that the tumor is larger.

I can see why doctors do not want to advise you to take a risk that might be dangerous, or expose them to risk of malpractice. However, my extensive research did not warrant any significant concern that the tumor would grow faster during pregnancy than it would normally.

Good luck!

[Kathleen_Mc]

LaMar: there is no reason you cannot give birth to your own child. As I have said above I had two children with the tiny tumor growing in my head and there was no risk to me or the child (the neuro. didn't see any issue with it and all was well.) Kathleen

[Pembo]

Julie, I'm in northeast Ohio. Email or pm me and I'll see if I can help you with a doctor. Are you looking for another OB? pembos94@centurytel.net Just put AN in the subject line.

Barb