I had my angiogram on Monday, I’ve had severe headaches since (not uncommon for me to have headaches) but these are different… I experienced numbness in my right leg and hand during the procedure but it went away quickly. I have had no bleeds, no seizures and paralysis (so fortunate)… I will see my neuro on the 12th to discuss my surgery and I have read everything I can find on the procedure. Initially I was in such denial that I told everyone it was no big deal… just a simple laser surgery (possibly out patient) and I would be fine… my husband still thinks this is the case, I’ve invited him to read more and try to understand more about what is happening to me (and the actual surgery) but he refuses… says he knows all he needs to know from what I have told him… bad thing is I really haven’t told him anything… TO SCARED… so afraid I will be a burden on everyone through this whole process that I’m still minimizing it… Until last night… I had a very emotional outburst (directed at my husband) and I think that was probably the first time he realized how scared I was… I’m not sure how to tell my family what is really happening with out sounding like I’m off my rocker…(because I have down played this whole AVM thing for 2 years now) I have 6 boys in my life right now (mine, his and someone else’s LOL, all whom I call my sons) 23, 22, 3-21 yr olds and 17!! I feel a need to prepare them for the inevitable surgery (better than I have) ( again I told them surgery, yes, but easy quick and no problems) I really need some advice on how to prepare my family for the upcoming events… I have lately told a couple of my kids and husband that recovery could be from 3-6 mths and they just look puzzled… my ex was a hypochondriac and once told my boys he was having brain surgery (when they were really young) so I’m not sure if they really understand… Mom is having brain surgery>> please… if anyone could share some ideas on how to prepare my family I would be so thankful… I’ve let it go to long… like I said my next doc visit is on the 12th… and my husband will be with me… so I think after that I should try to have a serious talk with my boys (3 live with us) (21, 21 & 17)…but what do I tell them???
It is not easy to know how to prepare children and family in what´s coming, or what might happen.
To the children I tried to explain in a very gentle way what an avm is and that that was partly the cause of my fatigue, the reason I had been so tired lately and that I now wanted to try to do something about it. I said nothing to my parents until the day before my embo, they did not even know I had an avm (!) I wanted to spare my nearest and thought this was the best way to do it.
Thinking back, I see that perhaps I should have been more open about what actually could happen to me, since nobody was really prepared that I would come back home with a palalysis. It was perhaps a greater shock for them than for myself?
I do regret that I was not more open about this avm to family before, I was left with all the worries by myself, had no one to talk to, very scary, emotional and lonely.
One can never know what will happen, we all hope for the best and want to protect our nearest, not thinking it would be nice to know that the family is prepared for how to meet you when you get back. It is much easier to recover when you know that the family understand you need rest and sleep. Even if you have spent time preparing yourself whatever outcome, is it all new for the people around you, if you have not shared your thoughts with them, they might feel helpless and worried, which is not what you need in a moment like this.
I do not know if this was of any help for you, but what I am trying to say is that information and preparation is important for all during difficult times.
Good luck and all the best wishes for you and you family.
Positive thoughts and love Hanne xxx
Hanne, thanks so much for your response… I’m so appreciative when I realize what struggles others are going through and how lucky I have been… AND… so tired… I can’t believe I never associated all this to my fatigue … especially over the last couple of months… I thought it was just the stress… I noticed a blog on that after your response so will read more… I think after hearing you share your experience that I should prepare my family… I’m a little hesitant about preparing them for the worst… but I can see where it would be better if they knew the possible consequences… good luck to you , honey** and thanks again for sharing!
Hanne said:
It is not easy to know how to prepare children and family in what´s coming, or what might happen.
To the children I tried to explain in a very gentle way what an avm is and that that was partly the cause of my fatigue, the reason I had been so tired lately and that I now wanted to try to do something about it. I said nothing to my parents until the day before my embo, they did not even know I had an avm (!) I wanted to spare my nearest and thought this was the best way to do it.
Thinking back, I see that perhaps I should have been more open about what actually could happen to me, since nobody was really prepared that I would come back home with a palalysis. It was perhaps a greater shock for them than for myself?
I do regret that I was not more open about this avm to family before, I was left with all the worries by myself, had no one to talk to, very scary, emotional and lonely.
One can never know what will happen, we all hope for the best and want to protect our nearest, not thinking it would be nice to know that the family is prepared for how to meet you when you get back. It is much easier to recover when you know that the family understand you need rest and sleep. Even if you have spent time preparing yourself whatever outcome, is it all new for the people around you, if you have not shared your thoughts with them, they might feel helpless and worried, which is not what you need in a moment like this.
I do not know if this was of any help for you, but what I am trying to say is that information and preparation is important for all during difficult times.
Good luck and all the best wishes for you and you family.
Positive thoughts and love Hanne xxx
We always found it was easiest to lay it all out, fears and all. The AVM showed up when our kids were 5 and 6, so we didn’t go into great details with them as to the treatment.
My suggestion would be to write out how you are feeling and what you expect the treatments and recovery to be, then share it with the family. Writing it out will insure that you cover all you want to discuss.
You could start by “I am really scared about this and it is more serious than I first led you to believe…”
Hope this helps.
ron, ks
Thank you Ron, I have a friend (teacher) who writes everything to her children, I think that is a great idea… thank you for sharing…
Ron, KS said:
We always found it was easiest to lay it all out, fears and all. The AVM showed up when our kids were 5 and 6, so we didn’t go into great details with them as to the treatment.
My suggestion would be to write out how you are feeling and what you expect the treatments and recovery to be, then share it with the family. Writing it out will insure that you cover all you want to discuss.
You could start by “I am really scared about this and it is more serious than I first led you to believe…”
Hope this helps.
ron, ks