My 14 y o daughter was diagnosed with brain AVM (right frontal lobe) after a sudden bleed last December. I thank God that she recovered (though painful) with no complications. She is an honor student and loves a challenge. She is scheduled for an embolization May 24 and craniotomy to have the AVM removed May 26.
She is a brave kid and so far she doesn't seem afraid of the upcoming surgery. She just wants it done so that she can resume her normal activities like sports.
We live in Massachusetts and were planning a relocation to GA (Alpharetta area) this summer, but after our daughter's newfound health condition everything was put to a stop. I am here today looking for any information I can get from the AVM community in terms of recovery after craniotomy. I understand that each person recovers at a different pace but it wouldn't hurt getting some insights. Now that she is scheduled to have the AVM removed we started resuming cautiously our plans of relocating to GA. I have to say that our daughter is excited about moving and I believe relocating wouldn't affect her emotionally-she can't wait to explore new places and new challenges and make new friends. But my concern is more practical in terms of recovery after the surgery. Do we need to stay put for a few months in terms of follow ups etc..? Also, any people here from GA with information about good neurosurgeons/neurologists please chime in! THANKS and God Bless! :-) Dina
Hi Dina, I had an AVM removed in the same location in 2011. The driving factor won’t affect her at her age but she may be prone to seizures which you need to be mindful of also, however they would more than likely keep her on meds for that for a couple months as precaution…I was back at work on light duties after 6-8 weeks post surgery and I did get very tired and tried to relax as best as possible…the only advice I could give is to take it as it comes and she how she feels after surgery and what follow ups she may require… I’m still doing 1-2 year follow ups to this very day…all the best and keep us posted on the surgery… God bless!
Call the neurological dept at Emory Univ. in Atlanta. Dr Dan Barrow is head of neurosurgery there. These people know AVMs.
Dina, My treatment and craniotomy was treated at MGH in Boston. However, if you look at the top list above there is a list of Doctors recommended by members. AS Barbara mentioned, Dr. Barrow at Emory Univ in Atlanta is well respected in the AVM community. Stay strong and positive
Hi Dina, I had my crainiotomy at UMass Memorial hospital in Worcester. I live in MA but also have family in GA. Shepards hospital in Atlanta has an amazing state of the art rehab facility for patients who experienced any sort of TBI. I know for me personally, I needed a lot of recoup time after my avm craniotomy but that's also because I had a stroke because it blew.I'd say play it by ear and see how she handles recuperating after the surgery.
Hi Adrian and Thank you so much for taking the time to comment! So glad you are doing well and wishing you all the best for the future! I will update on surgery :-)
Thanks Barbara! :-)
Thanks Louisa! I appreciate all the info and best wishes :-)
Thanks Lindsay! Sorry your recovery was long, I hope you are doing well and stay healthy. Thanks for the advice, I truly appreciate all the info and advise I can get. :-)
Hi Dina! I am 29 and I just had a craniotomy 2ish weeks ago.(april 13th) I do not know how much the recovery differs once you have had a bleed, and luckily my was found by accident before a bleed, but I can share with you that I had an AVM in the right frontal lobe and craniotomy my course of teatment mostly because I am young and otheriwse healthy and it was believed i wouls recover well. I spent 2 days in ICU and 2 days in a regular room before I was released from the hospital. For me Inwas incredibly grateful the hardest part of recovery was coming out of anesthesia, otherwise the pain was minimal compared to what i expected… And im a prerry big baby. Since being home my biggest struggle has been being tired pretty easily and getting back into a normal sleep pattern has been a challenge (hence my 1230 am reply!) my incision site is still a little raw but otherwise i feel pretty good and am able to funtion pretty close to what i was pre craniotomy aside from being tired. My onlyother complaint if you can even call it that, is that it has been really diffucult building an appetite back up. I wish i had better or more helpful advice, but since my surgery was pretty recent i dont have a ton of info to offer. I do wish your daughter the BEST of luck, and to you guys also! I have a 12 year old daughtee and I cant imagine how I would feel if she had to face this instead of me. I hope this helped a little bit. If there is anything I can do to help or offer please feel free to ask.
Thanks Jessica for taking the time to read and comment! I am truly very happy your craniotomy went so well and hopefully by now your appetite and sleep pattern have returned to normal. You have no idea how happy I was to receive your reply and your good news! Especially since your AVM was in the same area as my daughter's is. I am praying all goes well for my daughter as well and she has a successful surgery and quick recovery. She is a strong girl and I am so thankful for that. If it wasn't for her positive attitude and strength I cannot imagine the stage I and my husband would have been right now waiting for the surgery date. She had to drop out of many activities since her bleed back in December and that is the hardest thing for her. She can't wait for the surgery to be done so she can resume playing sports. Since this time our hospital stay is scheduled I have some items in mind that helped her last time she was in the ICU. Besides her Hello Kitty soft blanket, soft socks, pillow, eye mask (Last time she had extreme sensitivity to light), lip balm and hand cream anything else you think you liked having or wished you had during your stay and recovery? Also, she has very long hair and she wants to keep it so I am thinking to loosely braid it elsewhere except for the craniotomy area just to prevent tangles. Last time during her recovery from the bleed we couldn't touch her hair because of the severe pains and headaches and she ended up with horrible tangles that took 1 week and a lot of coconut oil and conditioner to patiently clear up. Any tips on this? ;-)
I appreciate your time and again I am so very happy for you :-)