Neurosurgeon review

I saw my neurosurgeon today and he enlightened me with a really horrid statistic - in the first year after a bleed there’s up to one in ten chance of recurrence… Well that dashed my hopes of having another baby. I must now wait at least to the end of the year before even thinking about having more children. I know the most important thing is to try ensure I stay well for the one child I already have, but all this is just so depressing!

I just hope everyone else is keeping well.

x

I know you’re disappointed, Soili, but you’ve got the right attitude. Sometimes this whole thing can be very overwhelming, but we have to be grateful to be alive to enjoy our families and stay strong for them. Nothing wrong with coming here and commiserating with us though! We love you, Soili!

Oh Soili. I am so sorry. I know this probably sounds hollow now, but waiting a year–although disappointing–will give your body a chance to recover from the gamma knife, and will let your body concentrate on healing and obliterating the AVM. You can rid your body of the steroids and other lingering meds. You can strengthen and recover from the radiation and stress. Take vitamins, get strong. A year will pass quickly and by then you body will be in peak shape to have the healthiest pregnancy possible. Chances of a bleed aside, pregnancy is a tremendous strain on any woman’s physical resources. After what you have been through, it is important for you to recover and strengthen so that your pregnancy will have an optimal outcome. My girls are 6 years apart, and the age difference works really well–I don’t think there is any one time that is better than another for adding to the family, it is always a joy and always a challenge. You will still have the family of your dreams, Soili. I feel your sadness, but try to see it as a chance to get strong. A year will pass before you know it.
Much Love,
Marilyn

Oh, and just as an aside, there is a controversial, but not at all discredited view among some neurosurgeons that risk of a bleed decreases after gamma starts to work (but before obliteration). So, at least some reasonable neurosurgeons would rate your general risk of bleeding over the next year at lower than 10%. (Also, one in ten sounds higher than 10 out of 100.) Try to focus on the idea that 90 out of 100 (or more) will not have another bleed. I really think that trying to maintain a focus on the (relatively) positive view, rather than the negative, has a better effect on your body and mind’s ability to recover and cope. 90 out of 100 chance of NOT bleeding is great odds. Just get through the year, then you can shift your focus back to the business of babies.

Dear Connie, Liam and Marilyn
Thank you so much for your support. I don’t know what I’d do without you guys!
Marilyn, you’re absolutely right in turning the numbers around. I will now just try to think that there is a 9 in 10 chance that there’ll be no recurrence!
Thank you again!
Have a good weekend!! xxx