AVM & Pregnancy

I hope to get some opinions on the following:

  1. Can seizures occur again if the AVM is removed and what is the cause of it.
  2. Would it be advisable to have a baby and what is the risk
  3. Will the medication (lamictal) cause any harm to the baby

I can only address your having a baby question.
After I had 4 ruptures at one time in my large AVM and then had steriotactic radiosurgery; I was advised not to get pregnant and that children would not be advisable for me in the future either. The surgery was 80% effective in shrinking my AVM but it is was still there.
My Dr’s told me that the stress on my body of the pregnancy and birth could cause a rupture or worse.
They put me on the Depo-Provera shot immediately and I had been on it for almost 6 years.
Then I found myself pregnant!! SCARED ME TO DEATH!!
The specialists all recommended I abort the pregnancy or risk neither the baby or myself surviving the pregnancy.
After everything I had already been through and almost dying myself that I could not terminate my pregnancy.
I was working full time and back in college. My OB made me quit everything and stay home and as stress free as possible and anytime I had symptoms of the AVM possibly rupturing, I had to have a spinal tap to check for blood due to them not being able to due cat scans or MRI’s due to the risk to the baby.
They told me that if I could make it past 5 months that chances would impove dramtically.
Needless to say I know have a beautiful 4 year old son, who is the light of my life and he and I are doing well.
I do not know if it’s related but my AVM is now growing again and I have had changes ever since my son was born. I do not think it is related and the Dr’s cannot say.
My son is living proof that it is possible but I will say it was a long road and scarey to get him here.
My one piece of advice in this respect, if you decide to have a baby, please search for a very understanding OB and one who is willing to spend the extra time with you when needed. Mine gave me her home phone number to call her immediatley if I started having problems. She also scheduled a c-section about 3 weeks early to prevent any possibility of me going into labor due to the extremem risk of rupture if I went into labor. SHE WAS AWSOME!! The only time I e ver used her home number was when my water broke a week before the scheduled c-section. She was at the hospital waiting on me when I got there and wheeled me up to maternity herself!!

I hope this helps you a little

When I had my 2 children I still had my AVM, as presumably I’ve had it since birth. At the time I did not know I had it. Both of my pregnancies were complicated due to pre-eclampsia (high blood pressure) in the last trimester of each. I had an emergency c-section with my first (due to the blood pressure issue) and a scheduled c-section with the other. So, perhaps not having a natural delivery was a blessing in disguise as I never had any problems and my children were perfectly happy. I have had doctors tell me now that if I had delivered the children naturally I quite possibly could have had a bleed, as my blood pressure was sky high. As it turns out I didn’t have the bleed until 9 years later when my blood pressure was perfect. Like Susan said, you definitely need to find a great OB who knows a thing or 2 about this issue. I wouldn’t presume to know what is best for you, only you and your doctor can. I wish you the best of luck.

Hello,
I’m currently almost 34 weeks pregnant I had 2 surgeries to remove my avm after it had already bleed 2 times. I did NOT have seizures before surgery but I have them now and the doctors say it is because my avm was located in the part of the brain where seizures mostly occur. They have told me it was safe to have a baby but I would recommend having some kind of scan done of your head before getting pregnant so you dont have to once you are. and also they say that if you do get pregnant that a c-section is the safest way to have the baby.
I am on 2000mg of Keppra a day…i was told it was the safest anti seizure med to take while pregnant and so far there have not been any lasting complications with her. These are all questions you need to talk to your neurosurgeon about of course but those are the answers that my neurosurgeon told me after my first surgery.

i too am on anti siezure meds and hope to have children in the future when i have discussed this with my neuro he said the main thing was to only be on one medication rather than several to cotrol the siezures the more meds you have the increased risks to the baby at the moment i am on tegrotol and topamax and he is hoping to be able to control my siezures using only topamax by the time i would want to get pregnant…he told me the genral population have a 1-2% risk of having a child with a deformity or malformation and when you add an anti siezure med the risk increases to 5-7% chance if you add 2 or more meds the risk increases again 10-15% chance…but there are some meds that are safer than others so its best to check with your neurologist he will know what will be safest for you and your baby best of luck

Thanks all for sharing.
Well I have surgery abt one year ago and everything was normal until recently where I have 2 seizures occured for the past 5 mths and this is really scary. I do not understand why after the removal seizure can still happen ?
I’ve checked with several docs (neuro) and they said it’s alright to conceive, however there may be risk as well. The medicinethat I’m using is less than 5 years, so they some how do not know what will be the side effect. Furthermore I’m already in my 30’s and not young anymore (I felt). That’s my worry.
sigghhh…

PK,

Do not worry about being an older Mom, I was 35 when my son was born. Do not give up on becoming a mother, just know that there are risks involved. I said this in my earlier post on this, make sure you find a very good doctor, who will take extra time with you and knows a little about brain trauma and seizures and I am sure things will be fine. If you are worried about the meds you are on, since they deo not know yet, long term effects. Ask them to switch you to something safer during your pregnancy.
If you are the one who is taking “Topamax”, I would highly recommend getting off of that before you conceive. As a former Topamax user, it is great for treatment and we women love it because of it’s weight loss properties but I do not think, especially if there is placenta crossover, that it would be good for a fetus. I fear it could cause long term damage to a baby. And for you mom, due to the tendencies with Topamax to cause severe mental issue in some patients, I would worry about the chemical changes a pregnancy would cause and the possibility of horrible and dangerous post partum depression.

PK said:

Thanks all for sharing.
Well I have surgery abt one year ago and everything was normal until recently where I have 2 seizures occured for the past 5 mths and this is really scary. I do not understand why after the removal seizure can still happen ?
I’ve checked with several docs (neuro) and they said it’s alright to conceive, however there may be risk as well. The medicinethat I’m using is less than 5 years, so they some how do not know what will be the side effect. Furthermore I’m already in my 30’s and not young anymore (I felt). That’s my worry.
sigghhh…

I agree with Susan. Dont give up but try to find another medication to take that will control your seizures. I am taking keppra (known to be pretty safe during pregnancy) and have about 3 a week which is so much better than I was. You will need to find a good OB doctor, one that is going to work really close with you and do what you feel most comfortable with. Mine has been horrible and finally after spending 600 to go see my neurosurgeon for him to send a fax saying I will have to HAVE a c-section things are going better. Just because you had brain surgery or a brain bleed doesn’t necessarily mean you can’t EVER have a baby. C-sections are the safest way and sometimes they will even induce you into a coma during delivery. (which is what my ob wanted to do) You just need to talk to your OB doctor about the meds and get that all settled first and also make sure your neurosurgeon ok’s it as long as you have a c-section. And being in your 30’s IS NOT old! lol so many people are having babies later in life now. Good luck and stay well informed about medications and pregnancy and the risks.

Brittany,

Please do not let them put you in a coma!! My OB said that the safest way was to keep me awake during the c-section!! They gave me a total spinal block and I was awake for the whole thing and got to see my son as soon as he was born!!
They said that my being awake was the only way they would do it as it was easier to monitor me and know right away if something was wrong. I was only numb from the middle of my back on down and it in no way affected my head. They wanted me to tell them at the least slightest funny feeling in my head and if I wasn’t awake they would have no idea what was going on!!
The doctor even tied my tubes while they were in there as we did not want to have more children with my health. I was older and only wanted one and he was not planned. Levi, however, is the joy of my life!! I just hope I get to see him grow up and get to see him graduate and become a man.

It does not hurt to be the most alert you can be when going through a surgery with an AVM especially if you have complications as you are the best judge of when something is wrong. I felt that my doctor is right about that and I think that not having to come out of anesthesia is less stressful on you and you can be more aleert for your baby and get to really enjoy those early life moments and you are muh safer at the same time.

Brittany said:

I agree with Susan. Dont give up but try to find another medication to take that will control your seizures. I am taking keppra (known to be pretty safe during pregnancy) and have about 3 a week which is so much better than I was. You will need to find a good OB doctor, one that is going to work really close with you and do what you feel most comfortable with. Mine has been horrible and finally after spending 600 to go see my neurosurgeon for him to send a fax saying I will have to HAVE a c-section things are going better. Just because you had brain surgery or a brain bleed doesn’t necessarily mean you can’t EVER have a baby. C-sections are the safest way and sometimes they will even induce you into a coma during delivery. (which is what my ob wanted to do) You just need to talk to your OB doctor about the meds and get that all settled first and also make sure your neurosurgeon ok’s it as long as you have a c-section. And being in your 30’s IS NOT old! lol so many people are having babies later in life now. Good luck and stay well informed about medications and pregnancy and the risks.

Susan
I told my Ob I would not b letting her put me in a coma. I wanted my husband to be in the room for the delivery and also my dad. Even tho she really pushed the subject on me I wouldn’t agree to it because it was something I wasn’t comfortable with. I dont do well with waking up from anesthesia either, so I will be awake and know what all is going on. My doctors also seem to be afraid of me going into early labor. They said something about seizure meds can cause labor as early as 36 weeks! I’m 34 now and they wont schedule the c-section til after 39 weeks.
Pk, this is why I stress to you to find a good OB doctor that will work with your neurologist or neurosurgeon. My Ob seems to have a mind of her own and doesn’t seem to take into consideration what my thoughts or feelings are for delivery.

For my case, I already have my AVM removed and I had my MRI 3 months back stating that everything is fine except that there is a scar in the brain which was resulted by the surgery.
I want to ask if anyone here have any seizure occured during the pregnancy period and if c-sect is strongly recommended for AVM patients.

My avm has also been removed by 2 crainotomies and I also have seizures and didnt before. In my case I have noticed that with pregnancy the seizures happen less often then what they did before being pregnant. Instead of 3 times a week maybe 1 time a week or 1 every other week. It is normal to have scar tissue in your brain from the surgeries and a lot of times they say that is what causes the seizures especially if you never had them before surgery. Also c-sections are STRONGLY recommended even if your avm has been removed and you never had a bleed. My avm bleed 2 times and even if it hadn’t bleed at all before the 2 surgeries my neurosurgeon would still have recommended the c-section just because of the surgery and etc. Having a baby naturally puts a LOT of pressure on your head and woman who do not have any kind of brain tumor still have at least a 2% change of having a bleed just from all the strain of pushing. (I’m not totally positive on that number since it has been a while since I read about that)
If you have any other questions just ask and I will do my best to answer them from my own personal experience.

PK said:

For my case, I already have my AVM removed and I had my MRI 3 months back stating that everything is fine except that there is a scar in the brain which was resulted by the surgery.
I want to ask if anyone here have any seizure occured during the pregnancy period and if c-sect is strongly recommended for AVM patients.

I know u wrote this post in 2009 but I am just seeing it now. I don’t know if this info was out in '09 but my doc recently told me Topamax was the worst drug for pregnancy and do not get pregnant on Topamax.