Where do I start?

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Where do I start?

Postby FearOfTheUnknown » Sun Apr 08, 2018 9:23 pm

I understand that the ultimate decision is mine to make (to go speak to a neurosurgeon), but I'm looking for advice.

I'm 53 years old and found out 1.5 years ago from an unrelated MRI that I have a 8mm CCM in my occipital lobe, which controls my left eye vision. I don't have, nor have I ever had, any symptoms. My daily fear is waiting for this thing to bleed, which at a minimum will damage my vision, rendering me useless to drive, work, pay the bills, etc. Although I am 53, I have a 10-year old son whose life I am extremely active with (ex. I coach his basketball and baseball teams, I take him on ski vacations, we take weekend road trips, we play around a lot, etc.). He lives with me 50% of the time where I have joint custody due to a divorce. Without a significant other around, I fear having a bleed while with him and then being debilitated thereafter without being able to enjoy the life we currently have together.

At 53 without symptoms, do I risk continuing to live a normal life at the expense of having a bleed at any time? Or do I take a pre-emptive stance and have surgery to fix this, so that I can live a healthy life without worry?

In my situation, what are the odds of a bleed if I've never had one before? At 5'11, 185 lbs., I'm in relatively good shape. My cholesterol is fine and my blood pressure is normal. I live everyday waiting for something to happen. I'm afraid to exercise as I did before discovery, since that increases blood pressure. I'm afraid to take ibuprofen since it thins blood, even though I've taken it my whole life and is most effective. I'm afraid to go on roller coasters with my son, which is a joint passion of ours. We just had a great ski vacation in Vail, but I feared daily that the high altitude would put me at risk of a bleed.

Do I have surgery to fix this, in hopes that it's a routine procedure, or as routine as it can be, where I'm back to normal living within a few weeks? Or do I live day by day hoping it doesn't bleed? What chances are there that it will bleed? Are my fears valid or irrational?

What would you do? Thanks.
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Joined: Sun Apr 08, 2018 8:48 pm

Re: Where do I start?

Postby Michelle2000 » Mon Apr 16, 2018 2:51 am

Welcome, Fear. I am sorry that you needed us but glad that you found us. Sorry you didn't get a quicker response.

Yes, this is a scary diagnosis, for all the reasons you mentioned, and you have to do what is best for you. That said, brain surgery is a big deal, and going that route for an asymptomatic lesion is fairly aggressive. Brain surgery essentially creates a brain injury in hopes of alleviating an existing (more severe) brain injury. Depending on the surgical path and the skill of the surgeon this can be a great decision or one you'd regret.

Your risk of a bleed is unknown. You suggested that this CM was an incidental finding, and research indicates that most people with a lesion will never have a bleed. Getting adequate vitamin D has been shown to lessen the risk for bleeding, so adding that may be a good preventative. As far as exercise, we have been advised that my son do non-contact exercise/sports. He lifts weights and throws shot/discus. He can do all lifts as long as he uses good technique and doesn't hold his breath. The sports medicine doctor told him to avoid activities that will spike his blood pressure. Avoiding ibuprofen is another good step. It won't cause a bleed, but if a bleed is occurring thinner blood could leak more and cause more damage.

Since you have been struggling with this diagnosis for so long, it might be helpful to talk with a therapist with experience with serious health diagnoses. Someone who can help you navigate and adjust to living with uncertainty could really help you live your best life. Your son is no doubt picking up on your anxiety, so not only will you benefit, but he would, too. Because CMs are low-flow lesions, it is unlikely (though not impossible) for a bleed to produce immediately dramatic symptoms where someone would have to call 911 for you. Instead the symptoms seem to develop more slowly over a day or two or longer.

My husband is near your age and has multiple CMs. He has had a bleed, but did not notice it at the time, so I don't know how old he was. His brother had his first bleed in his late 50s. My MIL was 62 when she had a devastating spinal bleed, and in her 70s when one in her brain bled. He father seems to have had a big bleed in his 30s. My son was 9. They have CCM2. I don't know if the familial forms are more likely to bleed than a single CM.

Also, it is important to note that many people who have bleeds recover quite well without surgery. Brains are slow to heal, but they do heal, if not always completely.

Best wishes,

18 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
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