My daughter Katie will be having surgery on June 29th. Her pediatric neurologist and a specialist who deals exclusively with AVMs and aneurysms will perform the surgery together. We are anxious, of course, but also happy that the surgery will be over with. Katie will be having a pre-surgery slumber party with several of her friends from school, and she’s really looking forward to that. I just wanted her to have something to take her mind off of all this that she’s been dealing with, and to have the chance to just be a 10-year-old and have fun. She’s really tired of all the restrictions on her physical activity and hopes the doctors will let her get back to full speed soon. I do remember him saying she will never be able to do any cage fighting, and she told him she just wanted to get back on the tennis court
For those of you who have had surgery, are they able to tell you right away that the AVM is gone, or is there a waiting period? Do they follow up with an angiogram? Also, did any of you end up with a permanent shunt? Did you have an external shunt immediately after surgery? We’ve been told to expect a hospital stay of anywhere from a few days to two weeks. The doctor told us she may wake up with some of the same deficits she had after her hemorrhage, but since she recovered so well from those, he expects a good recovery from any she experiences due to the surgery.
Wow. That’s both exciting and scary at the same time, isn’t it? I’m waiting for my son’s surgery to be scheduled.
My goodness you are a brave parent! What a great and thoughtful idea to have a pre-surgery party…I’m shaking my head, smiling, and have a tear in my eye at the same time. I’m a mom.
I had my surgery in 93, and when the surgeon came in, he said “it looked like an AVM, but we have to send it down to the lab, just to check.” I said “can I have it?” (I’m a little weird, but I figured that if they were going to take something out of my brain, it belonged to me…didn’t it? Be prepared, they told me we have to check it to make sure it’s not cancer. You will have to wait up to a month before we know. Keep in mind that this was in 1993. I had no angiograms, just regular MRI’s for the first year. No shunt, a plate years later. I was in hospital for 8 days…should have stayed longer, probably 3-4 more days…I wanted to be out for Thanksgiving! After all I was alive! Best wishes for Katie and your family! HUG
Best wishes for Katie’s surgery.
Marsha, I totally know how you feel. My daughter was 10 when she had her surgery, just this past January. We played hookie from school the day before and went to the mall with a friend, and made “surgery bears” at Build-a bear, to help Lindsey and her best friend get through it. It is tough on friends too! That bear is still very special to her.
Our surgeon was able to tell us that he was confident that he removed the entire AVM, but there is no way to know for sure until you do an angiogram. Some surgeons do one immediately after surgery, others wait. Our surgeon decided to do an MRI day 1 post-op and after reviewing it with the interventional radiologist, they both felt reasonably sure that it was gone, so they wanted to wait 3mos for the repeat angio, to get confirmation. I guess some of the swelling can hide things in angios done immediately after surgery. We did have our repeat angio 3 mos later, and all was clear. Now he says MRI in a year to make sure there weren’t any very small pieces left that the angio couldn’t pick up. Anyway, so yes, the party started right after surgery!
My daughter came out of surgery off the vent, and with no drains. She just had lots of monitors and IV sites. She did end up with an aneurysm clip, because he didn’t trust the feeding artery to stay closed. It supposedly will cause her no problems over the course of her life. Her recovery was very uneventful, and we pray the same for your daughter. We found a caringbridge page very helpful in keeping everyone informed of her progress. There is a link to my daughter’s page on my AVM page if you are interested in the “play by play” of my daughter’s surgery. I found it helpful to read lots of other parent’s experiences prior to surgery. Please keep us posted! We will keep you in our prayers!
Also, you may be interested in a discussion I started a while back in the parent’s group on this site. Everyone weighed in on what there doctor’s did for surgery follow-up, MRI’s, Angios, at what intervals etc. Every doctor is different!
Hi Marsha…My son had a successful craniotomy June 8th. We went to a neighbors picnic the weekend before and I watched him happily play with the other children but with such fear of what his future would bring. He was pretty good about his restrictions but he couldn’t wait to be able to do all the things he used too. When he would say that I would get anxious because what if that is not the way things went. I can very very very happily say that his surgery went wonderfully. It was longer then anticipated but he woke up recognizing us, understanding us and able to move just the way he could before surgery. They kept his BP low for about a day and a half then for the next week he was supposed to chill. He is an active little boy but the first week he was quite tired so it was not a problem. For six weeks he must NOT bump his head in the area where the skull was cut to allow for the bones to fuse again. This is a big challenge since he has 3 other brothers close in age. Honestly…I think it is a challenge for any parent…kids are active and therefore at risk for bumps. Trevor did not need a shunt. I am familiar with that possibility and it was mentioned that it may be needed. My son has no obvious deficits. He will get and eye exam in a few months to see if he lost anymore peripheral vision They do not think he lost anymore then what he lost when he had the stroke in February. The drs are not convinced what he lost in Feb will even be completely permanent and the neuro optha. said that he could still play professional ball some time. :-)Trevor had an angiogram the same day as the surgery. I think every situation is different as well as different practices among neurosurgeons. Wishing you all the best and you will be in my prayers.
As I understand it, they did an MRI during the surgery. I had about 6 fiducial markers put on my skull the day before the surgery so they could do the MRI. They also did an angiogram during the surgery. My radiologist, who embollized my two other past avms, assisted the neurosurgeon. I also had a drain. They left it in for a day or so, I think, but nothing permanent. After the surgery, he said it was completely obliterated. Yeah!!! I had another MRI about 3 months post and all was clear. I wish you the best with the surgery. It sounds like you are in good hands. What a great idea to have a fun party the night before. We had a big dinner with all the family and it really helped to ease some stress by doing something fun and getting everyone’s mind off the next day. Take care!