I found out I had this avm in December, now, following three embo's, I am finally approaching my last embo followed the next day by the big one - the craniotomy. Eek!
I'm nervous, anxious etc about what's going to happen but mostly I'm suprised to find that I'm actually quite calm about it. Like I know what's going to happen and it's for the good of me, so I can get on with my life. I'm staying focused and positive - sometimes forcing myself to be! - that this will be removed completely and I can wake up from the operation with no more headaches, or whooshing noises and I can begin to enjoy life, instead of it being onhold as it has been since I was diagnosed.
Well good luck and you sound very strong, which is so important. I hope you have a good support system around you. I can’t even imagine how this must feel for you. My thoughts are with you, Erin.
Good luck dear!!! IT is so wonderful that you have such a positive attitude about your surgery. I felt the same way and I was right! I am 3 months post op and am back to my pre surgery self. Even better as I don’t have the awful headaches!
Hey there good luck with your surgery. I had my second brain surgery 9/2009 some are easier then others my last one was very hard, but a little bit of fighting and realizing my true inner strength made it go by much easier. Pieceof advise after the surgery remember it will get better and soon you will feel great with an entire new outlook on life. I will pray for your surgery and recovery.
Erins husband Alan here, just to let you know Erin had her craniotomy on Wednesday and last for 14 hours. Due to the length of the op and a couple of bleeds/complications Ez was moved to Intensive Care overnight - the following day the deemed her well enough to move to High Dependancy Unit (although she is classed as critical).
As it stands Erin has no movement at all down the left hand side of her body (due to the bleed), I have already been told that she will be in hospital much longer than originally planned as she will have to move onto a rehab unit in several weeks time.
I have already learnt that you have to take things one hour at a time, inthe space of a day her speech (although still massivly slurred) has improved.
If anyone wants anymore info following on from her surgery, side effects and so forth feel free to contact me. Its good to talk, so Ive been told.
I wish I could be more positive and delivery better news to you all who passed on kind regards - but I have a feeling this will be a very slow process.
Alan,
Thoughts and prayers for Erin, you, and the rest of your loved ones! That was a long surgery! And yes it’s a slow, healing process. I’m sure she will improve minute by minute You all will be in my prayers, keep us imformed of her progress.
Blessings!
Marie
Alan-
Thank you very much for the update about Erin. I pray that she gets stronger everyday and will recover quickly, but safely. She is in my thoughts and prayers. Again thank you for sharing with us.
Alan, thank you so much for letting us know how Erin is doing. I am praying she is getting better each day and the feeling is coming back in left side. Tell her I am thinking of her. I will pray for you too as you care for her during this time.
Just a quick update on Erin - her head has healed remarkably well considering what she has been through, and its frustrating to know that she would have probably been home now if it was not for the bleed she had during surgery.
Erin can now lift her arm slightly, as well as her leg. She can also very slowly grip, but as yet is unable to release that grip. We have been told that she will be having an angiogram tomorrow to assess exactly how much of the AVM is outstanding - as this will be passed onto Sheffield for gamma treatment.
Hopefully a week on Monday, Erin will move to a hospital which is only 5 minutes away from home and then onto Walkergate Neuro Rehab centre (which is only 15 minutes away from us). The annoying thing is is that there is a 3 month waiting list to get in there, as they only have 30 beds available.
So we are in this for the long haul, but I see improvements in Erin every day I visit.