My boyfriend (22) has suffered an AVM rupture on April 10, 2013. He complained of an awful headache, fell into siezures, and went unconcious when at the hospital. The hospital thought it was just siezures, so they gave him anti-siezure medication until they ran out. 5 hours later, he arrived at Westchester Medical Center where they removed part of his skull to reduce swelling/pressure. He has a trach in, but breathing 97% on his own. GCS=8/9. He is starting to have weird muscle spasms very briefly and they're looking at moving him to a rehab center next week. He is currently in the ICU fighting off a staph infection (not MRSA) and has been opening his eyes and making his normal "yucky/painful" faces when the nurses do something! I hope this is positive stuff so far. I just found out I was pregnant yesterday and I really need him to recover. I just want to know survivors stories that may be similar. If you pray, pray hard please. This is the scariest thing I've ever been through and now it's going to effect a baby. Thank you for responses and prayers.
Hi and you have come to the right place for all of the support you need!!! Please know that AVMs are now a very treatable condition yet everyones treatment is unique to them as there are no 2 AVMs that are alike. Knowing that he is responding when the nurses ask him to do something is a very good sign - this recovery and long term treatment does take time so your patience will certainly be tested throughout this journey. I'm Grateful to share with you that I had my AVM rupture back in Feb. 2011 and by God's amazing Grace, I am now deemed AVM-Free and I do not suffer one physical deficit as a result of my rupture yet this didn't happen overnight! And please feel very comfortable asking his Neurosurgeon any and all questions that you may have. A heartfelt congratulations to you and please keep the Faith that your boyfriend will recover as you deliver your bundle of joy into this world :-)!
My prayers are with both you and your boyfriend during this difficult journey!
Michele
xO
My AVM was found before a rupture, so I have not experienced what you're going through. I just want you to know that I'm keeping all of you in my prayers for a full recovery. It sounds like he is making appropriate responses to stimuli, so that's a good sign. Congratulations on the pregnancy. Keep positive thoughts.
Hi Ashtinshayne. As long as your boyfriend is alive…there is HOPE! Congratulations on the baby. You may want to click on this link…http://www.avmsurvivors.org/group/s
The brain heals SLOWLY but it can heal. PRAYERS own the way!
Praying for you and your boyfriend. There are so many people on this site that can help you as they have helped me.
Thank you THANK YOU for all the prayers. I really do appreciate them all!! It's amazing what God can do in such a short while! They're moving him to a really great rehab center (Helen Hayes Hospital) on Monday!! He still has the infection, but he gave the neurosurgeon a dirty look the other day when he pinched his arm!! Haha. Keep praying! I have faith that God can and WILL heal him!!!
I will be praying for you and your boyfriend Ashtinshayne. Dont give up hope. Also, I think that knowing he will be a dad will give him so much motivation to fight even harder :)
Dont worry about this affecting the baby. You love your baby and take care of your health and everything will be ok. I went thru a very traumatic time when i was pregnant with my 12yo son and he is the happiest, sweetest boy EVER.
When I was 25, three years after successful AVM treatment, I had a seizure for the first time. I was in bed sleeping (literally, zzz) with my girlfriend when I had the seizure - which is why I mention it here. She was very scared. But, I went to the hospital, got on some meds, and I've never had another seizure.
It's all good (except the broad dumped me a year later!). Don't lose any hope.
-Chad
Hi Again Ashtinshayne - just wanted to say that my situation was very similar. Please know that everything is going to be alright. Things always work out.
Hi ashtinshayne....i just wanted to keep this short.... all the speculations that surrounds this scenario u r going thru is pretty justified...but all that i can say is pls believe that MIRACLES do happen in life....
In one line if I have to say - "U now need to play multiple roles - be like a mother to ur boyfriend.... unconditional love n patience is what a mother always shows.... thats exactly what a AVM survivor requires...along with this it is awful that u r going to play the role of real mother shortly....i must say God chose to give u this pain bcoz he knows u r strong n ready for this...deal one moment by moment...it will be a long recovery but worth it....pls dont lose faith...... my prayers n good wishes are with u always"
MY SON 26 SAME THING LEFT SIDE HIS LEFT SIDE IS ALMOST BACK 100 O/O THE RIGHTSIDE IS MUCH SLOWER ALL AVMS ARE DIFFERENT HE CAN FEEL ALL RIGHT SIDE KNOW ITS BEEN 56 MONTHS WE ARE PLAYING CHESS AND THINGSARE MOVING SLOW BUT FORWAD THIS IS A VERY SLOW PRCESS HAVE FAITH AND EXERCISE HIS LIMBS THAT ARE NOT WORKING ANKELS KNES ELBOWS WRIST FINGERS NECK MASSAGE EVERY DAT SO HE WONT GET STIFF MY SON LOVES IT AND FEELING IS COMING BACK SLOW CALL IF YOU WOULD LIKE TO TALK 905-■■■■■■■■ RICHARD
Thank you for this. Ill pray for him. As long as he has you and a support system he will get better faster. My dad would help me stretch and pick me off the ground when i would fall apart but me and your son are lucky to have dads like you. I dont know what would of happened if i didn't have my dad and sisters. Your son is very lucky. As long he has a mindset stuck on getting better he will!!! =)
How is your boyfriend doing?? How are you and the baby doing??
My boyfriend is in a long term rehab and is still having troubles doing physical therapy. He’s pretty much in bed all the time because his back hurts, but they are now thinking it could be stiffness from medications. He’s on so many (baclofen, oxy, Benadryl, etc) so he’s very blurred… He’s about 80% ‘with it’ mentally and emotionally though which is SUCH a blessing, but I just want him to come home and he can’t until he can care for himself. Me and the baby are good. I have good days and bad days, and have been nastolgic lately. I’m just hoping and praying for the best knowing every brain is different. My baby is a girl and she’s due in December… Doesn’t have a name yet due to the difficulty of agreeing on one with my boyfriend lol:)
It's nice to hear from you, ashtinshayne. I hope your boyfriend has a happy homecoming before the baby's arrival. If you can, line up some family support to help out when your baby is born, to help things go as smoothly as possible. Sending you positive thoughts!
Hi Ashtinshayne! Thanks for keeping us updated. I’m so sorry to hear that he’s having a rough time. His back is probably hurting because he IS in bed all the time. Did he have spinal cord damage? He should be getting rehab at least 3 hours per day. Most rehab facilities wouldn’t let him be in bed most of the time. If that’s the case, maybe it’s time to look at a different place for him. When you say Oxy, are you referring to Oxycontin? If so, he needs to be weaned OFF of that crap. I cannot tell you how many people I’ve seen become addicted to that crap in a short period of time. I wish they would ban it. Also, I would question why he is on each of his meds and see if he can get off of some of them. Maybe, maybe not… but worth a try. On the happy side… congrats on the baby girl, how exciting! I’m keeping you in my prayers.
Your at the right place for answers and hope! This site has helped me so much in the past 2 years. I was in a similar situation 2 years ago. I was 21 when my boyfriend had a stroke due to an AVM rupture. It is the scariest thing you will ever have to go through as a caregiver and as a spouse. My boyfriend was in a coma for a week after his stroke and also was hooked up to the breathing machine because he was breathing only 20% on his own. He woke up completely paralyzed on his left side and I was told he may never walk, smile, recognize me again. My boyfriend showed them all up and I am proud to say he is the same as he was 2 years ago except he walks with a brace on his left ankle and his left arm is a little weak due to increase tone but he is the same person I fell in love with 5 years ago and getting better and stronger everyday! There will be hard days but please let him know to not give up! it is important that you guys never give up and always keep working towards your goals. Things will get better, they always do. I know now in the beginning it doesn't seem like things are happening fast enough, results aren't quick enough and hope is so far away but hope does come and you guys will be back to your normal routines soon enough. :)