Some time before my AVM was discovered I came of birth control. Obviously my diagnosis put things on hold. I now have been treated with Gamma Knife and I did briefly talk about pregnancy with my treating neurosurgeon , but I didn’t get a clear anwser.
I would like to speak to someone to discuss this all. Starting hormonal birth control has had influence on my avm in the past, so it’s not something I want to do unless it is absolutely necessary.
I want to know in what kind of risk a pregnancy would put me and my baby.
I’m not sure who to speak to though.
I was thinking maybe I can get an appointment with a neurologist?
I don’t think anyone can answer you for sure…
They say pregnancy is a high risk for an AVM rupture.
I had my son before knowing of the AVM but I had a C-section and very low blood pressure during my pregnancy so it doesn’t count in a way…
I was recently talking to a woman with an AVM though that has 4 children and had three of them with an untreated AVM,and her doctor insisted on c section just to be safe.Talk to your neurosurgeon again,what did he tell you?
I know it’s very personal and every AVM is different. I see many women who have had no issues during their pregnancy, but also a fair amount that had bleeds during. It does seem like the women that had bleeds were unaware of their AVM during their pregnancy. The neurosurgeon I spoke to said it was fine first but at the end of the consultation he said best to wait.
I think the starting point in the UK is to talk to your GP. While they are generalists, one of my GPs took great umbrage that that meant they were in any way less knowledgeable about areas of speciality! If you find the right GP in your practice, I hope one or more of them will be just as ambitious to understand the wide scope of general practice and to direct you to someone who could give good advice.
Not all GPs are the same, however.
I agree about your general concern. I’ve read thousands of stories on this forum and there definitely appears to be a vascular reaction to pregnancy, the hormones released etc, so I’m sure it changes things. I think start with the GP and agree with them whether or which specialist is best to consult further.
Thank you Richard for your response.
I will try and to see my GP about it. You’re right, especcially the combined pill with oestrogen seemed to have a big impact on my avm and gave me severe migraine attacks.
I’m just showing that I read about people before replying: I do try to understand everyone’s situation before I write something. I use a bit of “inspiration” to write whatever I write: I hope that whatever comes to mind helps: but I do leave it greatly to inspiration
I do have a book, Colloquial Dutch which I bought in the nineties, though I have to be honest, I don’t use Dutch very often, so I remember a maximum of about six words
Do let us know how you get on. You won’t be the only person concerned with these questions.
I definitely think you should seek advice on this topic with the medical professionals who are already treating you… I do see how a c-section would be best for giving birth & if it were my wife I’d want that option to avoid any potential complications from a bleed during pregnancy… wishing you all the best with this… God bless!
Hi there. For what its worth I just thought I’d add my two-penneth!
As others have said I think it would be wise to consult a neurosurgeon or other specialist to establish what the risks for you are as an indiividual. We’re all different and likewise the risk isn’t the same for all of us. Personally I never heard anyone say getting pregnant would be risky for me, although I was once told any babies would have to be delivered by C-Section. That’s cos of the head pressure caused by labour. So anyway I waited until I became desperate for a family and felt it was worth the risk. I now have 2 children and really can’t imagine life without them. I did have both by C-Section though and also have naturally low blood pressure. Best of luck with whatever you decide. x
Definitely chat with your neurosurgeon or whoever is treating your AVM. I have a Spinal AVM and have had 3 children with no issues at all. However, my AVM is stable and I will only get pregnant if I’m having no issues or changes with my AVM. Apparently there is a 20% increase of AVM’s bursting during pregnancy so something you need to weigh up for yourself.
If you do get pregnant a c-section is generally the safest and for me I had to be under a GA due to the slight risk of an epidural or spinal affecting the AVM in my Spine.
Hi! Little update
I had an appointment booked for the 8th of July
Unfortunately I’ve not been well and I’ve spent the last 4 days in my dark bedroom due to severe headaches. I cancelled the appointment to discuss BC and decided to deal with this pain first. Everything is a trigger at the moment for what feels liks cluster headaches. I hope this is a sign that the the Gamma Knife treatment is doing something atleast… I will see Dr. Hawkes (neurologist) in July for pain management. I hope to get through the 2 week waiting time with the tramadol the GP prescriped as emergency prescription.
