Hello everyone, I am brand new to this site I stumbled upon. I was diagnosed with a 5.1cm AVM to the right frontal lobe of my brain on July 14, 2013. I am in my second year of nursing school, have been an LPN for 10yrs and finally got to start my dream of being an RN. I have 8 weeks until I graduate and am very excited but worried about my upcoming future at the same time. I meet with a neurosurgeon Dr Chicoine and a radiologist interventionist Dr Cross and Barnes hospital in
St Louis MO. They both recommend embolization first in 4-5 treatments 2-3 weeks apart from each treatment and then either radiation with gamma knife or surgery after it is down to an appropriate size. I have not had much time to research this d/t school and need some help. I have no symptoms besides headaches but I have not had one since the day after my Nero angiogram on July 17.
Does anyone that has had either of these have any suggestions or recommendations? My family and I are very scared about this whole process and I just want to live a normal life.
Two weeks before I was diagnosed we started to try and get pregnant and was approved to build our dream house. Of course these plans are on hold at this moment, I really want some hope that one day I may be able to have children or adopt or own. I believe in the power of prayer and that our God is a powerful one so I am still praying that he will take this away from me. But if it is not in his will then I will deal with it accordingly.
Any help would be grateful, I love reading all of the related stories, it has helped me to start to deal with this. Thanks
Hi Ash-
First of all... GOOD for you, going back to get your RN. I'm an RN as well, and we need many more of us in this world(but only compassionate ones). Please, don't put your life on hold because of this(except maybe the having babies-because of the anesthesia & surgeries). I've only been on this site for the past eight months or so, but it has proven to be very helpful to get info and to hear from people that may have already gone through this. I have a ~3.7cm AVM in the right temporal region. So far, I've had two surgeries; the embolization which shrunk the AVM, and then the repair of a large aneurysm. I probably have another embolization or two and then gamma-knife before I am finished. Are they doing a craniotomy or entering through the femoral artery for your surgeries? In researching this and by recommendation of my doctor usually the surgeries are at least 4 weeks apart. You need time to heal in between. If you are having any doubts, you should seek a second opinion. As you already know, given that you're an LPN, everybody has different perspectives of pain level, treatment, etc... That being said, use the information and this site as a sounding board and ideas for your treatment, but go with what feels right for YOU. You WILL get through this. I'll keep you in my prayers.
Hi Ash and Welcome to the sight.. :),
You and your husband have every right to be scared but, PLEASE don't let it overwhelm you or jump to conclusions. That's easy to do for anyone in this kind of a situation. Mine was 3 cm (deep in the left frontal lobe) when it was discovered in 1991. I was given a 50/50 chance of it bleeding when I met with the dr. about it. I didn't have it treated (by G.K.) until 2007. It grew to 5 cm. till then. I finally agreed to have it treated because it became symptomatic on me. I was having gran mal seizures and migraine headaches from it on a regular basis.
From 1991 (when I first found out) till 2007. I lived a very normal and active life. I was in the Martial Arts at the time and I didn't even stop doing that. I don't recommend others to do what I did but, my point is - I didn't put my life on hold because of it (wink).
Oh... And congratulations on going for your RN degree. Good for you (smiles).
There are many women on here who have had children either while they still had their avm or after it was treated/gone. You have no reason to give up hope for that. You may need to postpone it for a year. I'm guessing at the time frame but, I'm sure you get the idea of what I'm trying to say. You are right - Faith is the key. Rely on that and you'll be just fine. :)
Ben
Princass, Thank you for the encouraging words. If we decide to do the surgery it will be craniotomy. Good to hear from a fellow nurse, its much different being on the other side of things. I also think it has made me a better nurse and will continue to make me a better nurse. Good luck with future treatments, this site is so great because we can all keep in touch and keep rooting everyone on. :) I will keep you in my prayers also.
Ben, thank you so much for sharing your story. Knowing you lived with your avm knowing for so long is very encouraging. You must be on tough cookie. :) I haven't put quit everything on hold yet, still trying to live a normal life but its always on my mind. No pun intended lol.
Swami Jim, thanks for the wonderful words. I am so grateful I have found this website and all of you. Seems like its hard to find people out there that understand it completely. Hope everything is well with you and your situation. :)