Replies to This Discussion

Permalink Reply by Mary (Jaime's Mom) on June 18, 2010 at 12:46pm

Hi Kelly,
My daughter Jaime had a craniotomy July 14, 2009. I can totally relate to your fears and concerns ! Every surgery/situation is different but my Jaime was able to attend a Paul McCartney concert a week to the day from surgery on July 21, 2009. She started running 2 weeks after surgery and actually ran cross country for her middle school team that September ! If you had told me any of this would have been possible I wouldn't have believed you. There were some rough days in the first week after surgery as well as in the weeks/months after that. We've had our challenges but you'll be amazed at how resilient these kids are! It's absolutely amazing how quickly they heal !

Best of luck to you and Ryan...please keep us posted. Not sure if you're on Facebook but if you'd like a detailed peek at what the initial week after surgery was like, I used Facebook notes to keep my friends/family in the loop on her progress. I wouldn't mind sharing that with you! Let me know.

: )
Mary

Permalink Reply by Susan Troop (Lindsey's Mom) on June 18, 2010 at 3:53pm

I think I have shared most of my story with you already, but I too was scared to death of Lindsey's craniotomy. I still cringe at the thought of what the surgeon actually did. We were all amazed at her recovery. She didn't have much pain, in fact the nurses gave her some morphine after surgery to be on the safe side, because they couldn't believe she wasn't in pain! She had some mild headaches while in the hospital, but I expected much worse. She had issues with dizziness for the first couple of days post op, and had trouble standing up and getting to the bathroom without assistance. She actually fainted one time, which was scary. We left the hospital on day 4 post-op, and she didn't have any dizziness or headaches past then. She went back to school 1/2 days for a week, 10 days post-op and then was going full time, with no problems. She only missed 8 days of school. I had all of the paperwork completed for a "homebound" teacher to come to our house, but didn't need it. Every situation is different, but I want you to know there are some good stories out there! We wish you and Ryan the best! Please keep us posted. There is a real celebration waiting on the other side!

Permalink Reply by Susan Troop (Lindsey's Mom) on June 18, 2010 at 3:55pm

We also used a caringbridge page to help keep everyone updated. There is a link to Lindsey's Caringbridge page on our AVM page. It helped me to read through everyone's experiences, like Mary's facebook pages. It just gives you a good perspective of what it was like in the moment.

Permalink Reply by Nea's Mom on June 18, 2010 at 5:09pm

Nea had a hard time recovering... sound was especially painful for her for a couple of weeks. But she had a bleed 4 days before her surgery so I'm not sure if her pain was due to that, to the surgery or a bit of both.

Permalink Reply by Mickie & Nico on June 19, 2010 at 12:16am

Hi Kelly,

Thanks for asking this question..My son Nico is having craniotomy surgery on July 6th. We are having difficult time also. Thank you everyone for sharing..I know all surgergies are different but your journey has given us a glimmer of hope!

God Bless:
Mickie

Permalink Reply by Alyse (Trevor's mom) on June 19, 2010 at 1:11pm

Hi Kelly...I can share our experience...I know you know that everyone is different. Trevor just had a very successful craniotomy on June 8th. What a ride this has been. Our first opinion was so dismal. We were told that if surgery was performed there was too great a risk that he would lose so much! We were already in the process of a 2nd opinion and thankfully our 2nd had a much more positive belief that surgery would be successful. With two opposite opinions, we had the records sent to one more doctor for a 3rd opinion which came back positive also. We were prepared for some deficits although the surgeons believed that they would be temporary and that our son would overcome them. The doctor told our son that he broke a record with being released from the hospital. That put the biggest smile on my sons face. Trevor suffered no headaches, was dizzy only the first time he got our of bed and suffered no deficits! His first week he was tired. He had no problem sitting around. When it was bedtime, I had never seen him so ready to be in his bed. The second week (which we are in now) he has tons of energy. We have to stop him from diving to the ground to catch a ball. He cannot hit his head for 6 weeks to allow the bones to fuse. Prior to surgery, I had the phone number of the children's hosp stroke rehab team, the numbers of the closest hyperbaric chambers to help brain healing injuries and was prepared to home school. We do not need any of that! My husband and I are still pinching ourselves to believe it all. The doctors did say that seizures sometimes come later but they do not feel like Trevor is likely to experience any. I am forever changed and I pray every night for everyone on this site. I wish Ryan and your whole family well. Keep us posted. I have yet to update my page. Today I finally got back on!

Permalink Reply by Ruth Pepperman on June 19, 2010 at 3:05pm

Hi Kelly. Of course, every case is different and I can only comment on my granddaughter's case. She had part of her AVM taken care of with emoblization and the rest with a craniotomy. Thank G-d both went well. The craniotomy took about 8 hours but recovery was fairly quick. She was in hospital for a week and then home with no apparent side effects apart from some slight weaknesses which improved in the pediatric rehab center. She went back to school part time after 2 weeks and now has the go-ahead from the neuro-surgeon to stop the rehab and go back to school full time (school finishes for the summer on June 30!). She has to have an angio in about a month to check that everything is as it should be. I'll have you and Ryan in my prayers. All the best, Ruth.

Permalink Reply by Janice Brown (Andrew's Mom) on June 19, 2010 at 6:18pm

For Andrew he returned to school about 2-1/2 weeks after both of his craniotomies. With the first he had no pain, short term dizziness and slight weakness in his right leg. After the second surgery he had more pain and headaches, and slight numbness in his right leg that resolved on its own. He did and still does wear out easily and frequently takes a nap after school. With that said he was never my high energy child, so some of that may just be his nature. Every case is different. All of my best wishes for a quick and easy recovery for Ryan are coming his way.

Permalink Reply by Erica on June 20, 2010 at 9:46am

My son had two craniotomies and in both he recovered very well. No pain, no dizzness, no seizures, etc. On the day after surgery he was completely normal, I think that will happen to your daughter too. God Bless.

Permalink Reply by Jennifer Illg on June 20, 2010 at 8:15pm

Hi Kelly.My son Wyatt was 11 when he had his surgery.I was horrified when I thought about what they were doing too.His went very well.He was in the PICU for 2 days and then in a regular room for 3 more.His doctors were wonderful about keeping up with his pain so we never had any major issues with that.He did experence a few episodes of blindness that came and went for a few days but resolved itself.They had him on anti siezure meds in the hospital but they didn't feel like he needed them when he went home.He never had any problems with seizures.I think he needed pain medication at home for 1 day and then was fine.I vividly remember being so shocked at how easy it all went and how fast he recovered.He recovered at home for another week then went back to school.He has had some severe headaches since the surgery but they have gotten less frequent and less severe as time goes on.From all of the stories on this site I know that we have been very lucky and I will hope Ryan's surgery goes well.As for homeschooling I also considered it but he was so opposed to it I let him go back as soon as he could.His school was pretty good about everything so he could do whatever he needed to be comfortable. I wish you and Ryan the best.Keep us posted.

Permalink Reply by Sandie Alger(Kasey's mom) on June 21, 2010 at 9:08am

Wow. All of you give me so much more hope! It is so great to be able to hear your success stories as we go through this process together. Gamma knife didn't resolve my daughter, Kasey's, avm after 3 years of waiting and so now we are considering craniotomy for a few reasons. 1) I'm fearful of the effects fo more radiation 2) Dr. says it's very small now and superficial so surgery would be "easy" 3) I think we need to cure her asap for her own mental health and get her off her antiseizure meds...hate that stuff. I do have questions: How did your kids handle seeing themselves in the mirror post-op? Did they shave half their heads and how freaky are all the stitches? I'm trying to prepare her and the rest of us for what to expect.
We still have to find a surgeon at this point and figure out when to do it. She's in college. Thank you for your input.

Permalink Reply by Sandie Alger(Kasey's mom) on June 21, 2010 at 9:13am

Hi Kelly,
I'm in the same boat as you right now. I want my daughter to have the surgery but I'm scared to death. Being a 19 yr old girl with long beautiful hair she is more concerned with what she's going to look like than the surgery itself. As her mom, I'm worried about both! Has Ryan had any other procedures done? I need to find a surgeon in FL since we took her all the way to Univ of Pittsburgh for Gamma Knife and I'd rather not do that again.

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