Replies to This Discussion

Permalink Reply by Susan Troop (Lindsey's Mom) on June 21, 2010 at 10:49am

Hey Sandie! There are so many questions, aren't there?! I know it will depend on the location of your daughter's surgery, and the surgeon, but ours was soooooo kind to Lindsey with her hair. I couldn't believe how little hair he actually shaved. He took a strip, about 1/4 to 1/2 inch wide from half way between the top of her head to the Right ear, to just above the left ear. They used surgilube to slick back the hair on both sides, to keep it out of the incision. It was a trick to get that to wash out, but it eventually did. A hairband easily covered the area, and she could even get by without it. Now she has 2 inch spikes that stick up, but she can blow dry them down. Long story short, we were very pleased that this part of it turned out to be a non-issue for us. It is definitely something to discuss with the surgeon! The worst part was not being able to wash her hair until the stitches came out. That was gross, and it took a while to actually wash away all of the dried blood. We braided her hair so it didn't become all matted during the wait.

Sandie Alger(Kasey's mom) said:

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 Ruth Pepperman on June 21, 2010 at 1:34pm

Hi Sandie. I suppose that the "esthetic damage" will depend on where they need to operate. My granddaughter, Tal's cut was behind the ear, following the ear's line. She already had some hair shaved off from when she had the initial bleed six months ago and has been wearing a little bandana since. It's fortunate that bandanas are in fashion at the moment (even 6 year olds want to be fashionable!). The stitching after the craniotomy was beautifully done in what I call blanket stitch. I would employ the surgeon as a dressmaker any day!

Sandie Alger(Kasey's mom) said:

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 Jennifer Illg on June 21, 2010 at 10:52pm

We had a head shaving party for Wyatt a few days before the surgery.We didn't go all the way to the skin but pretty close.It made him feel a little more in control to do it himself.After it was hard to look at.His head was really misshaped for quite awhile and he had 2 black eyes.The actual incision wasn't that bad, but seeing all of the stitches freaked me out.We really stressed over taking them out.That wasn't fun but he made it! Now unless his hair is wet you can't even tell its there.His doctors have really been outstanding with everything he has had to go through.I hope you are as fortunate as we have been!

Sandie Alger(Kasey's mom) said:

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 Lisa Wilson on June 24, 2010 at 6:56am

hi kelly
my daughter who was 14 at the time had 2 embolisations and a craniotomy almost a year ago. the first embolisation made her quite ill and she suffered with vision loss so had to stay in hospital longer than we hoped. the second was better but then she went for the craniotomy a couple of days later. those hours of waiting were the worst thing and to see her coming back to ICU with tubes and monitors was heartbreaking. she was moved to a normal ward the next day but we spent 2 weeks in hospital as she had a few problems with nausea and headaches. with regards to mobility her recovery was fairly quick, but she ended up having about 7 weeks off school in total as she was very fatigued and needed that time to build herself up.
sadly she had a problem with her wound so 3 months later she was back in and the hair shaved again! but the bone was all fine and it was a superficial problem with the skin. this set her back because of a 14 year old losing hair again! but she has been incredibly strong and for that i love and admire her all the more.
a year on and she has had some difficulties with headaches and has lost some peripheral vision, but she is holding her own at school, passing all her subjects and the avm has gone!
lisax

Permalink Reply by edie pantelis on June 27, 2010 at 12:12pm

Jamie is doing fine after surgery, she, had it on the 21st of Jan, she did alot of sleeping--meds--lost weight, got the ok to drive in May, and the okay to go back to work shortly after, has had a difficult time handling an overload of stress, thanks to work, but is doing fine. She doesn't believe it really happened to her except for the new hole in her head, which she's put to good use by balancing an egg in it. She's the kid I raised, even at thirty. Best of everything for you, surgery, has blessed us, there are no deficits with the exception of a minor upper periphreal vision loss. best of surgery to you and Ryan, take it slow he'll et better.

Permalink Reply by Sandie Alger(Kasey's mom) on August 13, 2010 at 4:26pm

What did you decide to do? Has the craniotomy been done? My daughter just had hers on Monday...4 days ago. Would love to hear your experience. I hope its good. Kasey is avm free , no deficits. Has quite a bit of head pain though. Dilaudid works best for her. She gets super tired. but hey! She's cured and it's only been a few days and she's home. So Yay!!!!

Permalink Reply by Sandie Alger(Kasey's mom) on August 24, 2010 at 12:56pm

5 days after surgery I thought, omg there is no way Kasey will be able to start back to college in a week. Then a week later she was almost good as new! She missed the first couple days of classes b/c school(college) started on a Wednesday so it seemed better to give her until the following Monday to recuperate. No dizziness, minor headaches(Tylenol can handle it)right at the incision site, no seizures and we are already weaning her off the Dilantin which was prescribed by the surgeon. It's just amazing. I hope has a speedy recovery. They told us to come back in 10-14 days for staple removal and in the meantime use Baby shampoo, which she washed her hair with every-other day. We waited the full 14 days and the nurse said her incision was the best healed one she had seen in a month. I hope that helps give you some insight.

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