Here we go again

My husband Richie had a routine follow up arteriogram this week. It showed that he has developed a new fistula that originates off of his carotid artery. This was completely unexpected. His post surgical MRI and arteriogram both showed that there was no trace of any residual AVM. The doctor was just as shocked as we are. It is my understanding that this is extremely rare after surgical removal of an AVM, and that is why surgery is the gold standard for obliterating an AVM. I think about midway through the conversation I really was not hearing all that he was saying anymore. He said that he will try to embolize it but is unsure if he will be able to do so. Has anyone else had this experience? I have read that this is very rare and when it does happen it is more likely in children. Maybe my husband is part crustacean or a starfish and has now thinks he has to regenerate a claw or something. I might wake up in the morning to find he has grown a second head or something. I do not know how all of you do it. Really. You all seem so positive when things for you are sometimes so uncertain. There are so many stories on this site and my thoughts and prayers are with all of you daily even if I do not take the time to write. We return to the doctor on December 30th to discuss the plan of action, and probably because he realizes I did not fully hear all that he said. The embolization is scheduled for January5th, the day before Richies 50th birthday. I think at this point I may decide to take up another bad habit perhaps smoking crack…however I do not know how…so if anyone would like to leave me detailed or illustrated instructions I would greatly appreciate it. I had considered joining the circus, but my fear of clowns may be prohibitive. I think Richie is dealing with all of this a whole lot better than I am, which I have to admit is pretty shameful. I think it is also too late in the season to start to hibernate with the bears, however I think I have gotten down the gorging yourself just prior to the big sleep. I am keeping myself distracted by thinking of ways to escape so any suggestions would be appreciated. Love to you all Laurie

hi laurie,
this must be a very stressful time…remember richie has done this before…sounds like a pretty strong guy…but this must be scary…stay strong you are both in my prayers xxx

Alicia, i wish there was a manual to go with this am thing but we have to make it up as we go along, stay strong. Amanda

Wow!! Somewhere there is a peace of healing and joy awaiting and I learned that my situation is more than I can handle and let go of the worry and let God and in it there was a healing and joy because I wasn’t driving myself crazy, Lean not unto your own understanding I see now why that is said Honestly our situations past all understanding Surely there must peace for you somewhere and I wish you and your husband all of it as you face your newest challenges

Hello Laurie. I am always “shocked” when our physicians are…We learn together on this journey and hopefully we learn more about ourselves and each other as well as the statistics and happenstance of this insidious single-minded parasite(that is how I see avms) and the anatomical, biological, physiological, psychological…what did I forget? As a nurse you know that there is nothing “logical” about any of this. As a care-giver and wife you know that there is the promise of the next minute, hour, day and though it is sometimes difficult to “see” tomorrow-it is out there. With every tomorrow comes the hope and promise of answers, solutions and “maybe” …what a fantastical word “maybe”. It may be that this time will do it. It may be that this time will bring an answer or solution that was not seen before. Cells are cells and they are all coded with a purpose, rather like people I now believe. You and Richie and your family are coded to be together in this fight for the purpose of living life and loving one the other and this can be difficult to go through. Oh, hell, impossible to comprehend let alone get through…and yet you do. You go on. Still you go on because you have a purpose…
As it is too late in the season to plant, grow and harvest anything worth learmimg to smoke-the circus sounds GREAT!!! Preferable to hibernating with bears who may well awaken hungry and want a snack?? So, I know of a circus that DOES NOT allow clowns. NO CLOWNS to prohibit you from joining! This circus will only operate in the gentlest climates and will set up on the warm sand by the beckoning oceans…
This circus is for the rarest of the rare-the bravest of the brave-the strongest of the strong. You and Richie fit that criteria, yes? Add to that the ability to keep, use, and hone your humor…the amazing Laurie and Richie-The ever regenerating crustacean and the ever eating woman??
You shall have to choose a stage name…
You and Richie and your family are in my thoughts and prayers. May God continue to guide, guard and hold you in the palm of his hand. There is reason to be dismayed-and there is reason to be assured that together-you will triumph…
Be good to you. Take care of you.

I"M so sad this has happened to Richie, but I’m glad to hear that he’s handling it well.

I guess the surgeons always try to give themselves some wiggle room should something unexpected happen. They are human like us and their crystal ball isn’t accurate either.
I am not a doctor, but I would guess that they didn’t get all of the AVM- just a thought.
2nd opinion an option?

I’m so sorry that you and your husband are struggling. Surgery, from what I’ve read, is not always successful - and if they leave any little bit of the AVM, any at all, it could come back - possibly in a different form. Apparently it has something to do with the CNS trying to reform the vessels. I know how you feel, and I feel foolish to be afraid at times as well, with so many other people suffering far worse than I, but I think we’re all afraid. And we’re all fighting this mysterious illness…“together”.

Oh - and if I knew how to smoke crack, I wouldn’t be sitting here typing this message, that’s for sure!

Thanks to you all. I am feeling a lot better than I was, I am trying to learn from all of you and my husband about acceptance. We are fortunate in a lot of ways, for him to survive the extensive bleed and to have so little defecit from a surgery that they felt for certain would leave him with so many. Post op MRI, CT scan and arteriogram showed that it was all gone. The doc was surprised himself that he had gotten it all,as he thought he might not be able to because of how deep the avm was in the temporal lobe and the size of it. He was not optimistic about the surgery and felt that it would be very risky and likely not have a good outcome. Apparently this fistula stems off of the carotid artery and is pretty uncommon but
not unheard of. It happens more in children and very rarely in adults. It is hard for me being in the medical field because all of the family expect me to explain everything in detail, and be the amazing Kreskin and know what will be. Additionally, knowing so much makes it even harder, I would rather be a little more clueless. We are very fortunate for the medical team that he has. I know some people who work in Neuro ICU there and they all agree that his doc is the best in this area, which gives me some relief. I am usually a pretty hard sell, but the entire team is very invested and truly care about him. They have never filled me with false hope but have always been very forthcoming which is something I appreciate. I had to make the decision to have him air lifted from the original hospital he was in because I am certain he would not have made it there. There are so many tough decisions to make through all of this and it is everyones expectation that the knowledge I have will always be the right choice. Too much pressure. The decison to transfer him that night was one of the hardest because I knew moving him was such a risk when he was so unstable and literally knocking on deaths door. The staff were not very supportive of my decision to have him moved, and pretty much said because of my choice it would likely be the last time I saw him. Talk about being unprofessional and just down right uncaring. The body is unfortunately not like getting a car fixed and there is no just replacing the part…there are just so many variables. I think a big part of my problem is I am such a control freak, and try to micro manage everthing. Some of that really helped him when he was so sick, but really took a toll on me. I know that what is going to be will be but I will always make sure that he always has the best shot. I just love him so much and everyone who meets him does as well. Speaking of meeting it would be great if there were some kind of convention type thing like they have for twins or dwarfs where everyone meets at a hotel or something. I could pass for a dwarf but I would rather meet all of you. It would be so great to find a central place for everyone to meet in person. I feel like you all have become part of our family. Maybe something could try and get planned even if it were a year from now. For now I am going to try to enjoy the holidays as I hope all of you will too. I have given up on the crack smoking for now and have decided to consider a career as a pole dancer which is probably more lucrative than being a nurse. I have decided that my stage name will be Bubbles Lareux (please pronounce it correctly…sounds like Laroo) So start saving up your dollar bills, although seeing me so scantily clad might make you want to throw tomatos instead. Love to you all Laurie

Hi Laurie,
My AVM grew back. I was 5 when they removed it after a stroke and it grew back by the time I was 14 when I had my 2nd stroke. The doctors treated it with embos and gammaknife, and the side effect of gamma knife was a tumor, which caused my 3rd stroke. My doctors told me that I’m the only known case where it grew back and I am in the medical books. They did attribute it to me being a child and my brain not yet being fully developed. Sometimes I think these AVMs have a mind of their own!