new here, and overwhelmed at some of your stories!! Thought I would try to add mine, warts and all…
November 25th last year, one minute having Sunday lunch with our 2 kids and extended family, next thing, my husband Andrew complains of a severe headache. Now I do know to be on the alert. To cut a long story short, when he was 13, (28 years ago!!!) he had a sub arach haemorrhage. The doctors said aneurysm and did a craniotomy to seal. He was then left with seizures which he takes carbemazipine, lamotrigine AND phenytoin for !!! Don’t get me wrong, his seizures are now well controlled but when he was complaining of such a severe headache I thought a seizure was coming on and got him out of there! He then actually said to me, this is not a headache, this is a haemorrahge, and subsequently lost consciousness. He was in a coma for 6 days and the surgeons were telling us that even if he made it there was nothing that could be done. It was then we found out that the AVM was the cause and that sickeningly, he had gone through that traumatic surgery 28 years ago for no reason!!
Andrew then had to remain in hospital for 3 months, he had lost all of his balance and coordination, which although seems fine now, still has the odd relapse. He had 2 embolisations while an inpatient and then had a third in July. It was then that the surgeon said he thought he could operate to remove it! Initially great news but then the reality sinks in, especially when they have to read you the risks and the first one is dying! We spent ages talking about it but then when the only other option you are given is 90% chance of another haemorrage which would more than likely kill him…#
His AVM is huge. Its on the front right hand side but then stretches deep into the brain. He has the surgery on Thursday and we have been told that the insicions will go from ear to ear and then from the front right hand side, all the way down to the back. And that he anticipates that the surgery will last all day - maybe up to 15 hours.
I HAVE to have faith in the medical team, and I HAVE to remain positive for Andrew and the children (8 and 6) I just can’t think otherwise or would be a trembling wreck (which to be honest, I am when he has gone to bed and can’t see me upset)
Any words of wisdom about dos or don’ts would be more than welcome! Even if its just, don’t talk about that before the surgery or ‘it would have really helped if…’
Just so scared right now …
Jude all i can say is keep the faith, everyone here will hope and pray for Andrew and all of you. there are so many who have gone through surgery on here and live to tell the tale, please please keep us updated and i will pray for you all, take care Amanda
Jude my heart truely goes out to you and Andrew… and to the rest of your family.NONE of this is easy,NONE of it has simple answers,NONE of it will just go away in a minute.BUT know that we all can and will pray for peace,healing,strength,courage and fast recovery for Andrew.It is hard for me,to not be able to be close to those that need us around.But words and prayers will work for now,and hope to offer you at this time.
I woudn’t say the earlier crainiotomy was no good to have,because they did have to seal it from bleeding,right??? It could have been alot worse if they hadn’t I am sure…
I am amazed that it took so long to see that it was an AVM? Did they do a MRI and Angio on him.I mean when they were in there the first time,were they not able to take most of it out?? Maybe not due to the bleed at the time…
You can vent any time,that is what we are here for… Please remember through all of this that prayers are being lifeted up and that you are in our thoughts.Your doing the best thing,and staying strong,I know how that can just wear you out.Let yourself cry and get it all out too!!! Take time for yourself too without feeling guilty!!! A mom’s job is never done… Blessings to you, Pat and Britt
Scarily enough - they did not find the avm at all! His last MRI was about 12 years ago and even then, they told us his seizures were down to scar tissue from his surgery 28 years ago! Appalling really! xx
Never give up hope and have faith. My thoughts and prayers are with you and your husband. As others have already said please let us know how the surgery goes.
All my best
Well, there are always things you would like to say “Just in case” However, I come from a family of make believe…meaning we all pretend things are great and then cry when no one is around! ;O) Is it helpful?..probably not…but when you are the patient, you are so nervous yourself and it feels like all you are doing is telling your friends and family that it is going to be okay and then as soon as you leave them, you crash! You don’t have to make believe, but let you smiling face and enchouragement be the last thing he remembers before he goes into surgery…not your worries or your doubts. You sound like and incredibly strong person and one who has faith in God so give it to him! Give your worries to God and keep your heart with your husband!
Not sure if this helps, just know that no matter what, you will make it through.
Bonnie - that really hit home - thanks. The last thing to see is my encouragement and smiling face and leave the rest to God. xxxx Puts it into perspective in a sense.
You are right as well that we just HAVE to get through it.
Getting sooo close xxx