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.
I thought I might give a quick update on this topic for whoever is interested
I’m 6 months post Gamma knife treatment and the first 3 months post were challenging as you can read in my previous post, but I’ve been feeling better. I had an appointment today with my treating neurosurgeon. He said that from his experience the 2 year post surgery MRI normally doesn’t show much and the radiation needs more time
He said it was up to him he wouldn’t even scan patients at the 2 years mark and just do an angiogram at the 4 years mark.
I’m relieved to be feeling better, but kind of disappointed to let go of that 2 year milestone…
4 years seems like a long wait for us as a couple.
Yes, it seems like a long way to go, though can you believe it was over four years ago that we spent the spring and summer in one kind of lockdown or another? The 2020s are shooting past as far as I can tell!
I’m pretty sure we can corroborate what your neuro says: I’m sure we see people with some progress at two years but it is often only some progress. As an efficiency of his or her time, seeing people at four years means they can see many more patients and be more certain to report useful progress.
Did you get your questions about pregnancy and/or hormone birth control answered at all? It has been a topic for at least one other person recently.
I’m glad to know you’re doing better with your headaches. I hope that carries on in the right direction!
Thank you for your reply.
I agree. If they could relieve the NHS’s pressure by just doing the 4-year angiogram, that would make sense. The Neuro´s I spoke to advised me to wait, and if I do decide to go for it, I will have to have a planned c-section. Their main worry seems to be the increased blood volume during pregnancy (2nd and 3rd trimester) and strain during delivery. They didn’t bring up hormones.
Although I can say that having tried a few types of different contraceptives, the combination pill with oestrogen and progesterone gave me very intense headaches, and the progesterone-only pill didn’t have any side effects.
Hi,
I just wanted to reply as I’m in a similar situation to you Sarah. My update since I joined this platform is I had my wedding in august but I’ve been waiting for my first consultation at Sheffield about GK for about 4 months now. My neurosurgeon referred me as he felt it was the only safe option for my AVM. I desperately want to have my first pregnancy with my husband and I’m early 30s. It was upsetting to read your post as my neurosurgeon had advised me to discuss pregnancy with the Sheffield team, I was holding out for a positive response about going ahead. 4 years is a huge wait for me and id be late 30s by then. I understand we may have different graded AVMs and locations so might be told different things but I am starting to gather that they generally advise against pregnancy.
Hoping I will have some updates soon with an appointment and I can share what they tell me.
Also sorry to hear about the headaches after GK, I suffer badly with headaches so that is a terrifying thought too they might get worse after treatment. Glad you’re past the worst.
I’d be very interested to keep in touch about pregnancy in the future.
Hi!
Thank you for your reply Summer
I totally get you, it’s a long wait and even after those 4 years who says that there will be an instant pregnancy and I might even need further treatment after those 4 years.
I try not to drown myself with these thoughts and I try to keep positive, but somedays are just hard.
I’m still open for the conversation and speak to my consultants, but just like you I’m coming to the conclusion that they generally advise against pregnancy.
I’ve actually started therapy to discuss what this means to me. It’s not for everyone but it helps to rationalise my thoughts.
I’m more than happy to chat and keep each other updated
Hi just thought I’d update you, I have had my consultation at Sheffield and will be having gamma knife. On topic of pregnancy for me they advised it’s up to me. There is increased risk in 2nd trimester, the usual 3% risk for the year can go up to an extra 7% risk. I don’t like that percentage so I will wait for my 2 year check up post gamma knife to see if it’s gone at that point (45% chance it will be gone at 2 years), I will make the pregnancy decision at that point. It’s definitely a long road ahead.
I wish you all the best with the treatment!
Once I had the initial consultation they were able to book me in for treatment soon after that
I totally understand your way of thinking.
However, they have told me to focus more on the 4 year mark than the 2 year as my AVM is on the bigger size and there is a big chance not much will have changed in 2 years.
Nothing is certain though and the 4 years is still just an estimate.
Either way, it is a long road and most important is that we give ourselves the time to heal after the treatment.
It’s non-invasive, but the Brain still has a good " poking around in it" how the Sheffield team described it to me.
in august but I’ve been waiting for my first consultation at Sheffield about GK for about 4 months now. My neurosurgeon referred me as he felt it was the only safe option for my AVM. I desperately want to have my first pregnancy with my husband and I’m early 30s. It was upsetting to read your post as my neurosurgeon had advised me to discuss pregnancy with the Sheffield team, I was holding out for a positive response about going ahead. 4 years is a huge wait for me and id be late 30s by then. I understand we may have different graded AVMs and locations so might be told different things but I am starting to gather that they generally advise against pregnancy.
how the Sheffield team described it to me.